Kristin Bjørnland

• Olsbø, Signe; Larsen, Marie Hamilton; Hermansen, Åsmund & Bjørnland, Kristin (2026). Health literacy profiles in parents of children with congenital colorectal disorders: A cluster analysis. Journal of Pediatric Surgery. ISSN 0022-3468. 61(12). doi: 10.1016/j.jpedsurg.2026.163439. Full text in Research Archive Show summary

  Aim: To identify and describe health literacy (HL) profiles and possible associations with sociodemographic and clinical characteristics among parents of children with congenital colorectal conditions. Methods: Parents (n = 269) of children with Hirschsprung disease (HD) or anorectal malformation (ARM) completed the Health Literacy Questionnaire-parent version (HLQ-p) and the General Self–Efficacy Scale. Demographic and clinical data were collected. Ward's hierarchical clustering was used to identify clusters across the nine HLQ-p domains. Ethical approval was obtained. Results: Four parental HL profiles were identified. Cluster 1 (n = 75, 28%) showed consistently low HL across all domains, with particular difficulties in information appraisal and social support. This cluster had the lowest self-efficacy, lower educational attainment, nearly half were non-native speakers, and half were not living with the child's other parent. Cluster 2 (n = 57, 21%) demonstrated moderate HL, but distinct challenges in information appraisal. Many had high education, cohabitated, and were native-speaking households. This group had the highest prevalence of child comorbidity. Cluster 3 (n = 109, 41%) exhibited generally high HL and strong engagement with healthcare providers, but struggled with information appraisal. Self-efficacy was high, and most parents lived with the child's other parent. Cluster 4 (n = 28, 10%) had the highest HL and self-efficacy, a high proportion of parents with high education and universal cohabitation. Conclusion: Nearly half of the parents exhibit low HL, including many with traditionally advantageous sociodemographic characteristics. Language diversity and child comorbidity amplified HL challenges, and difficulties in evaluating and applying health information were common across all parent groups.

• Johannessen, Hanna; Hoel, Anders Telle; Karlsen, Remi André; Nilsen, Hogne Røed; Bjørnland, Kristin & Bækkevold, Espen Sønderaal [Show all 7 contributors for this article] (2026). Mapping and Characterization of Isolated Lymphoid Follicles in Patients with Hirschsprung-Associated Enterocolitis. Pediatric and Developmental Pathology. ISSN 1093-5266. doi: 10.1177/10935266261466230.
• Røkkum, Henrik; Sæter, Thorstein; Treider, Martin; Ertresvåg, Kjetil & Bjørnland, Kristin (2026). Clinical outcome and long-term quality of life in patients treated for gastroschisis – Results from a national study. Journal of Pediatric Surgery. ISSN 0022-3468. 61(8). doi: 10.1016/j.jpedsurg.2026.163234. Full text in Research Archive
• Santiago-Martínez, Saioa; Aziz, Dayang Anita Abdul; Bjørnland, Kristin; Correa, Catalina; Gagilyte, Ruta & Ellul, Sarah [Show all 20 contributors for this article] (2025). Research Involvement and Gender Disparities Among Pediatric Surgeons: A Multinational Survey. European journal of pediatric surgery. ISSN 0939-7248. 36(02), p. 144–149. doi: 10.1055/a-2649-0566. Full text in Research Archive Show summary

  Abstract There is a lack of background regarding knowledge about the involvement of pediatric surgeons (PSs) in scientific activities. We aimed to investigate scientific activity among PSs worldwide. An anonymous online questionnaire in English collected demographic data, time spent on research, participation in scientific conferences, publications, and funding for conference attendance. Co-authors distributed it through national and international pediatric surgery societies and groups to reach their members. A total of 526 PSs responded (57% female). About 55% of those surveyed reside in Europe. Most worked in university hospitals (61%), 9% at a university faculty, and 0.8% in a research facility. Only 23% were engaged in research, with similar rates for females (21%) and males (26%) (NS). Additional time out of working hours was required for research, particularly among female PSs. Full compensation for research was reported by 10% of females and 29% of males (p < 0.02). Around 73% had attended at least one local, regional, national, or international scientific conference (75% of females vs. 70% of males, NS), while 84% had no funding for at least one event (87% of females vs. 80% of males, NS). Scientific paper was presented by 69% at some conference. At least one scientific paper was published by 20% (17% of females vs. 23% of males, NS). Research involvement among PSs is limited, with unpaid work and funding gaps, particularly among women. Potential solutions include improving research training, structured mentorship (especially for women), institutional support for protected research time, and equitable access to funding opportunities.

• Hoel, Anders Telle; Olsbø, Signe; Davidson, J. R.; Mutanen, A.; Granström, A. L. & Wong, C. W.Y. [Show all 15 contributors for this article] (2025). Systematic Review on Questionnaires Reporting Bowel Function and Health-related Quality of Life in Patients With Hirschsprung Disease. Journal of Pediatric Surgery. ISSN 0022-3468. 60(9). doi: 10.1016/j.jpedsurg.2025.162418. Full text in Research Archive Show summary

  Aim Impaired bowel function and reduced health-related quality of life (HR-QoL) are common after surgery for Hirschsprung disease (HD). There is yet no agreement on how to report these outcomes. This systematic review aims to describe which questionnaires, their properties, and how frequently they are used to report outcomes. Based on this, we recommend questionnaires to be used in future studies. Methods Predetermined searches were conducted in Pubmed, Embase, Cochrane Library and Trials, Ovid Medline, and Cinahl with no lower time limit until March 2024. The Covidence software was used in data collection, eligibility criteria and PRISMA guidelines were applied, and the review was PROSPERO-registered. Results Of 2925 identified studies, 357 (12 %) met inclusion criteria. Bowel function was reported in 350 studies with 232 different questionnaires. HR-QoL was assessed with 32 different questionnaires in 80 studies. Of the questionnaires, nine (4 %) reporting bowel function and 13 (41 %) reporting HR-QoL questionnaires were validated. The most commonly used bowel function questionnaires were non-validated, developed for patients with anorectal malformations, and without a control population. Most HR-QoL questionnaires were validated and developed for the general population. Conclusion Questionnaires to record bowel function in HD patients are mostly non-validated, whereas use of validated questionnaires is the norm when reporting HR-QoL. We recommend either HAQL, BFS or PICS to report bowel function. PedsQL Generic Core Scale and PedsQL Gastrointestinal Symptom Scale or HAQL, and either SF-36 or QLI in combination with GIQLI or HAQL is recommended to report HR-QoL in HD children and adults, respectively. Level of Evidence IV.

• Olsbø, Signe; Ertresvåg, Kjetil & Bjørnland, Kristin (2025). Appendiceal stricture following Mini-ACE® enema button placement: a case report. Journal of Pediatric Surgery Case Reports. 120. doi: 10.1016/j.epsc.2025.103060. Full text in Research Archive
• Davidson, Joseph R.; Mutanen, Annika; Granström, Anna Löf; Hoel, Anders Telle; Loukogeorgakis, Stavros P. & Coppi, Paolo De [Show all 11 contributors for this article] (2025). Impaired Fertility and Sexual Function in Women With Hirschsprung Disease: Results From an International Multi-Centre Cross-Sectional Study. BJOG: An International Journal of Obstetrics and Gynaecology. ISSN 1470-0328. 132(11), p. 1673–1680. doi: 10.1111/1471-0528.18294. Full text in Research Archive
• Olsbø, Signe; Kiserud, Sara Georg; Hoel, Anders Telle; Stensrud, Kjetil Juul & Bjørnland, Kristin (2025). Systematic review of reported outcomes for antegrade continence enema in patients with anorectal malformation and Hirschsprung disease. Journal of Pediatric Surgery. ISSN 0022-3468. 60(11). doi: 10.1016/j.jpedsurg.2025.162634. Full text in Research Archive
• Karlsen, Remi Andre; Hoel, Anders Telle & Bjørnland, Kristin (2025). Strong agreement between self-administered and interview-obtained bowel function score in patients with Hirschsprung disease and anorectal malformation. Pediatric Surgery International. ISSN 0179-0358. 41(1). doi: 10.1007/s00383-025-06207-3. Full text in Research Archive Show summary

  Background The Bowel Function Score (BFS) questionnaire is the most widely utilized tool for assessing bowel function in patients with Hirschsprung disease (HD) or anorectal malformation (ARM). However, the questionnaire has not undergone a formal validation process. This study aimed to compare self-administered responses with those obtained during clinical consultations to determine whether patients can reliably report their bowel function when completing the questionnaire independently. Methods "Patients with HD or ARM and/or with their parents, completed the BFS questionnaire prior to their outpatient clinic visit. During consultations, the questionnaires were reviewed, with any missing or unclear responses addressed and adjustments recorded. The agreement between self-administered and interview-obtained BFS scores was assessed using the intraclass correlation coefficient (ICC)." Results A total of 103 questionnaires with 721 answered questions were evaluated. The agreement between self-administered and interview-based BFS scores was found to be nearly perfect (ICC) 0.96. The question recording frequency of defecation, was the only item that did not demonstrate perfect agreement. Conclusion This study supports the use of the self-administered BFS questionnaire as a reliable tool for assessing bowel function in HD and ARM patients in both clinical practice and research.

• Olsbø, Signe; Larsen, Marie Hamilton; Kiserud, Sara Georg; Hagen, Sæther Trine; Hermansen, Åsmund & Bjørnland, Kristin (2025). Parental health literacy in anorectal malformation: needs and challenges. Pediatric Surgery International. ISSN 0179-0358. 41(1). doi: 10.1007/s00383-025-06096-6. Full text in Research Archive
• Hameed, Rania Adel; Fosby, Marianne Valeberg; Hoel, Anders Telle; Diseth, Trond Haaken; Bjørnland, Kristin & Gjone, Inger Helene (2025). Mental Health, Psychosocial Functioning and Quality of Life in Adolescents With Anorectal Malformation. Journal of Pediatric Surgery. ISSN 0022-3468. 60(9), p. 1–7. doi: 10.1016/j.jpedsurg.2025.162422. Full text in Research Archive Show summary

  Aim of the study There is limited knowledge on mental health in adolescents with anorectal malformation (ARM). This study aimed to assess mental health, psychosocial functioning, and quality of life (QoL) in this population. Methods Adolescents treated at Oslo University hospital were invited to participate. Patients with intellectual disability or cloaca were excluded. Mental health was assessed by interview (Child Assessment Schedule; CAS) and by questionnaires obtained from parents (Child Behavior Checklist; CBCL) and adolescents (Youth Self-Report; YSR). Psychosocial functioning was evaluated using the Child Global Assessment Scale (cGAS) and adolescent QoL with Pediatric Quality of Life inventory (PedsQL). Medical records reviewed for somatic history. Ethical approval was obtained. Results Thirty-one of 41 (76 %) eligible adolescents, 17/31 (55 %) males, participated. Median age was 15 (12–18) years. Nine had perineal fistula, 16 rectovestibular/rektobulbar/rectoprostatic fistula, and 6 other ARM variants (web, atresia, unknown). Associated anomalies were recorded in 21/31 (72 %). Four had colostomy and 9 an appendicostomy. CAS interviews revealed that 11/31 (36 %) of participated adolescents met criteria for a mental health disorder mainly within the emotional (internalizing) categories (WHO report 2021; general population prevalence 14 %). Parents reported internalizing problems on CBCL in 5/31 (16 %), and 7/31 (23 %) adolescents reported internalizing problems on YSR. Based on interviewer-rated cGAS, 11/31 (26 %) scored in the clinical range. By PedsQL self-report 5/31 (16 %) reported reduced QoL. Conclusions One in three met criteria for a mental health disorder and one in six reported reduced QoL among adolescents with ARM. Emotional problems were most common. Level of evidence III.

• Karlsen, Remi Andre; Hoel, Anders Telle; Karaji, Negin; Sæter, Thorstein; Stensrud, Kjetil Juul & Bjørnland, Kristin (2025). Bowel function and quality of life in adolescents with Hirschsprung disease. Journal of Pediatric Surgery. ISSN 0022-3468. 61(1). doi: 10.1016/j.jpedsurg.2025.162777. Full text in Research Archive Show summary

  Background Functional bowel problems are common in children following surgery for Hirschsprung Disease (HD), but there is limited information regarding bowel function and its potential impact on quality of life (QoL) in HD adolescents. Therefore, this study investigates bowel function and QoL within a national cohort of HD adolescents. Methods and Patients This cross-sectional study invited all Norwegian HD adolescents, 12–18 years. Data were gathered from electronic patient records and through questionnaires; Bowel Function Score (BFS), PedsQL Gastrointestinal Symptoms Module (PedsQL-GSM), and PedsQL Generic Core Scale (PedsQL-GCS). QoL data from patients and controls were compared (PedsQL-GSM: 513 controls; PedsQL-GCS 425 controls). Results 77/84 (92 %) adolescents, median 14.0 (12.0–18.4) years, participated. Fifty-nine (77 %) were boys, and eight (10 %) were syndromic/neurologically impaired. Rectosigmoid aganglionosis affected 60 (78 %). A pull-through procedure was performed on 73; 49 underwent endorectal pull-through, 12 the Swenson procedure, and 12 the Duhamel procedure. Nineteen (25 %) utilized regular enemas, and nine (12 %) had a stoma. Among those not using regular enemas or had a stoma, 30 (39 %) reported BFS Score ≥17. Total PedsQL-GSM score was significantly lower compared to controls (83.2 vs. 88.6, p < 0.01). “Stomach pain” and “gas and bloating” were most common symptoms. Patients reported generic QoL comparable to controls. Gastrointestinal symptoms correlated with reduced generic QoL. Conclusion Persistent functional bowel problems are common among HD adolescents, yet their generic QoL remains satisfactory. Given that bowel issues are associated with lower generic QoL, effective management of bowel problems appears essential for maintaining overall good QoL.

• Røkkum, Henrik; Treider, Martin; Børke, Wenche Bakken; Bergersen, Janicke; Lassen, Kristoffer & Støen, Ragnhild [Show all 8 contributors for this article] (2025). Enhanced recovery protocol for congenital duodenal obstruction – initial experiences with development and implementation. Pediatric Surgery International. ISSN 0179-0358. 41(1). doi: 10.1007/s00383-024-05951-2. Full text in Research Archive
• Olsbø, Signe; Hoel, Anders Telle; Karlsen, Remi Andre; Austrheim, Astrid Ingeborg; Ambrose, Hanne Rishovd & Gjone, Inger Helene [Show all 8 contributors for this article] (2025). Prolonged Psychological Burden on Parents Following Home-based Anal Dilation for Anorectal Malformation. Journal of Pediatric Surgery. ISSN 0022-3468. 60(5). doi: 10.1016/j.jpedsurg.2025.162246. Full text in Research Archive Show summary

  Aim Assess parents' experiences with home-based anal dilations in children with anorectal malformation (ARM). Methods Parents of children with ARM who had undergone home dilations (n = 240) were invited to complete the Impact of Event Scale (IES) questionnaire to measure post-traumatic stress symptoms (PTSS) and a study-specific form. Thematic analysis of free-text responses was done following Braun & Clarke's method. Ethical approval was obtained. Results 142 parents (59 % mothers) of 97 ARM children participated. The mean duration of home dilation was 4.5 months (SD 3.6) with a median time since the last dilation of 10 (0–20) years. 136 parents completed the IES questionnaire; 83/136 (61 %) presented PTSS. 40/136 (29 %) had moderate and 15/136 (11 %) severe symptoms. Mothers had higher average IES scores than fathers (17 vs 9, maximum score 75, p = 0.04). Parents who performed dilations exclusively preoperatively had less PTSS than those who did so postoperatively (7 vs 18, p = 0.03). 40 % had wanted more comprehensive training and support, and 43 % preferred healthcare professionals to perform dilations. Home dilations were prematurely terminated in one third of children because parents could not cope. Thematic analysis revealed three major themes: Emotional impact of the dilation procedure, Practical challenges performing dilations and Need for support and training. Conclusion Many ARM parents continue to experience PTSS long after completing home-based dilations. These results show that parents need better practical and psychological support when performing dilations. Parents who find the procedure very stressful should be offered to not do the dilations, and alternative solutions must be proposed.

• Hoel, Anders Telle; Knatten, Charlotte Kristensen & Bjørnland, Kristin (2025). A National Survey on Paediatric Gastroenterologists' Role in Caring for Anorectal Malformations and Hirschsprung's Disease. Acta Paediatrica. ISSN 0803-5253. 114(8), p. 2023–2028. doi: 10.1111/apa.70076. Full text in Research Archive Show summary

  Aim Most paediatric surgeons regard themselves as crucial and responsible for the follow-up of patients with anorectal malformations (ARM) and Hirschsprung's disease (HD). In this study, we explored to what extent paediatric gastroenterologists (PG) want to be involved in the care, if they experienced any knowledge gaps, and how they preferred to increase their knowledge. Methods All Norwegian paediatric departments received a questionnaire covering different aspects of follow-up of patients with ARM and HD. One PG was asked to answer on behalf of the department. Results 13/18 (72%) departments answered, 6/6 (100%) university- and 7/12 (58%) regional hospitals. The PG strongly disagreed that paediatric surgeons should have main responsibility for the follow-up on HD and ARM patients. The PG regarded the information provided by paediatric surgeons on main diagnosis, associated anomalies and recommendations for paediatric follow-up as insufficient. The PG listed surgical treatment, bowel management and long-term outcomes as knowledge gaps, and preferred national paediatric guidelines and paediatric meetings as sources to increase knowledge. Conclusion PG want more involvement in the follow-up of ARM and HD patients. To increase their knowledge, they recommend improved information from paediatric surgeons, national guidelines and a focus on ARM and HD at national paediatric meetings.

• Rossi, Daniel; Granström, Anna Löf; Pakarinen, Mikko; Bjørnland, Kristin; Blaauw, Ivo de & Ellebæk, Mark [Show all 99 contributors for this article] (2025). Defining Excellence: The First Core Set of Quality Indicators for the European Paediatric Surgical Audit on Hirschsprung's Disease Care. Acta Paediatrica. ISSN 0803-5253. 114(6), p. 1464–1477. doi: 10.1111/apa.17594. Full text in Research Archive
• Örtqvist, L.; Holmdahl, G.; Borg, H.; Bjørnland, Kristin; Lilja, H. & Stenström, P. [Show all 11 contributors for this article] (2024). Composite Functional and Quality of Life Outcomes in Adults Operated for Cloacal Malformation. Journal of Pediatric Surgery. ISSN 0022-3468. 60(1). doi: 10.1016/j.jpedsurg.2024.161981. Full text in Research Archive Show summary

  Introduction Composite long-term outcomes of cloacal malformations remain unclear. We aimed to evaluate bowel and bladder control, sexual function, reproductive health, and quality of life in adulthood. Methods A Nordic multi-center cross-sectional observational study evaluating the outcome of adult patients with cloacal malformations was performed. Patient characteristics were retrieved from case records. Established questionnaires were sent to the patients to evaluate bowel- bladder- and sexual function and quality of life. Results Thirty-four of 48 (70%) eligible patients with median age 28 years (18–45) responded. Eight (24%) patients had a common channel >3 cm. Imaging-confirmed spinal and sacral abnormalities were present in 4 and 17 patients respectively. 85% (n = 29/34, four patients with permanent urinary diversions after bladder neck closure excluded) reported no urinary leakage without physical activity or urge to urinate. Three patients had a permanent enterostomy. 42 % (n = 11/26) reported acceptable bowel function according to Bowel Function Score (with eventual ongoing bowel management). The median Profile of Female Sexual Function Score was below normative values. Quality of life was comparable to the reference population, but thirty percent scored within the distress domains. Eight patients (24%) had been pregnant (15 pregnancies), resulting in seven live births, but the need of assisted reproduction techniques (40%, n = 6/15) and miscarriage (40%, n = 6/15) was common. Conclusions Adequate spontaneous bowel control was rare, while most patients were dry for urine without additional procedures. Cloacal malformation also have a negative impact on sexual function health related quality of life and reproductive health. Long-term follow-up is crucial, not only regarding bowel and bladder function, but also for sexual and reproductive function, which may be important negative factors for health-related quality of life. Level of Evidence Level IV.

• Heurn, Lieke van; Derikx, Joep P.M.; Hall, Nigel; Aldrink, Jennifer H.; Bailez, Maria M. & Chirdan, Lohfa B. [Show all 50 contributors for this article] (2024). Malignant transformation and tumour recurrence in sacrococcygeal teratoma: a global, retrospective cohort study. International Journal of Surgery (IJS). ISSN 1743-9191. 110(11). doi: 10.1097/JS9.0000000000002045. Full text in Research Archive Show summary

  Introduction: Sacrococcygeal teratoma (SCT) is a rare congenital tumour. The risk of malignancy and recurrence is not well defined. Previous studies are small and report differing conclusions about the timing of surgery and the duration of follow-up. The authors studied the risk of malignant transformation and SCT recurrence after surgery to address these gaps. Methods: This was a global retrospective cohort study. Data of consecutive SCT patients was obtained from 145 institutes in 62 countries. Malignant transformation, defined as malignancy at initial resection, malignant recurrence or death due to malignancy, and its risk factors were analysed. Results: Of the 3612 included patients, 3407 entered analysis. The risk of malignant transformation of the initial tumour was 3.3, 5.1, 10.1, and 32.9% at age 3 months, 6 months, 1 year, and 2 years, respectively. After 6 years, the censored risk of malignancy (64%) did not further increase. Recurrent SCT was diagnosed in 349 (10.2%) children with 126 (36.1%) malignant recurrences. Risk factors for recurrence were Altman type II [odds ratio (OR): 1.6, 95% confidence interval (CI): 1.2–2.2], Altman type III (OR: 1.6, 95% CI: 1.2–2.3), initial immature histology (OR: 1.9, 95% CI: 1.4–2.6), and initial malignant histology (OR: 4.0, 95% CI: 2.9–5.4). Conclusion: The risk of malignancy at initial resection in SCT increases with age reaching a plateau at 6 years of age. Recurrence after resection occurred in 10% of patients and 36% of these were malignant at that time. Altman type II or type III, and immature or malignant histology were associated with recurrence. Level of evidence: Level III.

• Hapnes, Nina; Stensvold, Hans Jørgen; Bjørnland, Kristin; Sæter, Thorstein; Guthe, Hans Jørgen Timm & Støen, Ragnhild [Show all 9 contributors for this article] (2024). Surgery for intestinal injuries in very preterm infants: a Norwegian population-based study with a new approach to disease classification. BMJ Paediatrics Open. 8(1), p. 1–9. doi: 10.1136/bmjpo-2024-002722. Full text in Research Archive Show summary

  Objective: To evaluate population-based data on very preterm infants (<32 weeks gestation) operated for intestinal injuries, focusing on necrotising enterocolitis (NEC) and focal intestinal perforation (FIP). Design: Nationwide, population-based registry cohort study. Setting: All 21 neonatal units in Norway. Participants: All very preterm infants born from 2014 through 2021 and admitted to a neonatal unit. Main outcome measures: Incidence of surgery for subgroups of intestinal injuries, medical record data on laboratory-radiology results, anatomical location of affected bowel, length of resections, number of reoperations, morbidities of prematurity and/or death before discharge. Results: Abdominal surgery was performed in 124/4009 (3.1%) very preterm infants and in 97/1300 (7.5%) extremely preterm infants <28 weeks. The main intestinal injuries operated were NEC (85/124; 69%), FIP (26/124; 21%) and ‘other abdominal pathologies’ (13/124; 10%). NEC cases were divided in (i) acute NEC, extensive disease (n=18), (ii) non-extensive disease (n=53) and (iii) NEC with surgery >3 days after disease onset (n=14). High lactate values immediately prior to surgery was predominantly seen in acute NEC-extensive disease and associated with high mortality. Other laboratory values could not discriminate between acute NEC and FIP. Timing of surgery for acute NEC and FIP overlapped. Radiological absence of portal venous gas was typical in FIP. Most infants (62.5%) underwent a stoma formation at initial surgery. The overall survival rate was 67% for NEC and 77% for FIP. Conclusion: NEC cases have different presentation and prognosis depending on the extent of bowel affected. Revised classifications for intestinal injuries in preterm infants may improve prognostication and better guide therapy.

• Treider, Martin; Røkkum, Henrik; Sæter, Thorstein & Bjørnland, Kristin (2024). “Gastrointestinal Quality of Life After Congenital Duodenal Obstruction Repair: A Nationwide Long-term Follow-up Study”. Journal of Pediatric Surgery. ISSN 0022-3468. 60(1). doi: 10.1016/j.jpedsurg.2024.161938. Full text in Research Archive Show summary

  Background Congenital duodenal obstruction (CDO) is one of the most common gastrointestinal congenital anomalies. Still, patient-reported long-term results are limited. The aims of this study were to evaluate the long-term gastrointestinal quality of life (QoL), generic QoL, patient-reported scar appearance, and reinterventions after CDO repair. Methods Patients who underwent surgery for CDO in Norway from 1995 to 2020 were invited to answer the validated questionnaires PedsQL and PedsQL gastrointestinal symptom scale and a study-specific questionnaire on general health and scar assessment. Parent-proxy reports were used for patients <12 years and patients with cognitive impairment. Scores were compared with an American and Norwegian control group for gastrointestinal and generic QoL, respectively. Results Of 186 eligible patients, eight were deceased, 25 had unretrievable contact information, and 79 did not respond. There were no significant differences between included (n = 74) and not included (n = 112) patients regarding baseline data. The mean follow-up time was 13.3 (SD = 6.6) years. Patients with CDO had significantly lower overall gastrointestinal QoL than controls (85.9 versus 90.0, p = 0.010). The most common symptoms were gas/bloating, constipation, food/drink limits, and reflux. Generic QoL was similar between the CDO population and controls (84.4 versus 85.3, p = 0.530). Twenty-one (28 %) patients had some degree of pain and/or concern related to the surgical scar. Nine (12 %) patients had reoperations related to the CDO repair; four due to adhesive small bowel obstruction. Conclusion A notable portion of patients report troublesome gastrointestinal symptoms and cosmetic concerns regarding their surgical scar after CDO repair. Even so, generic QoL was good.

• Söderström, Linnea; Axelsson, Gustav; Mutanen, Annika; Stenström, Pernilla; Danielsson, Johan & Borg, Helena [Show all 13 contributors for this article] (2024). FERTILITY AND SEXUAL FUNCTION IN MALES WITH HIRSCHSPRUNG’S DISEASE: A NORDIC CROSS-SECTIONAL STUDY. Annals of Surgery. ISSN 0003-4932. doi: 10.1097/SLA.0000000000006615. Full text in Research Archive Show summary

  Objective: The aim was to assess fertility, sexual function and sexual quality of life in males with Hirschsprung’s disease (HSCR) in the Nordic countries with a cross-sectional study using self-reported validated questionnaires. Summary Background Data: Data on fertility and sexual function in males with HSCR are limited. Methods: This multi-center study targeted all males born between 1970-2003 who underwent pull-through surgery at a pediatric surgery center in Sweden, Denmark, Norway, or Finland. Participants completed a multi-domain questionnaire. Demographic data was collected retrospectively from the medical records. Patients with trisomy 21 and other syndromes associated with intellectual disability were excluded. Main outcomes were fertility, sexual function and sexual quality of life. Results: A total of 169 patients (median age 32 y) were included. Of 63 individuals attempting to father a biological child, eight (12.7%) reported failure to conceive after one year and five (7.9%) reported failure to conceive after two years. Our cohort did not report impaired fertility, higher prevalence of erectile dysfunction or lower sexual quality of life scores compared to normative summary data. Poor bowel function was associated with impaired fertility and erectile dysfunction (P=0.0278 and P=0.0026, respectively). Length of the aganglionic segment and surgical method did not seem to affect fertility, sexual function, or sexual quality of life. Conclusion: Males with HSCR that have undergone pull-through surgery do not seem to report an overall reduced fertility, higher prevalence of erectile dysfunction or reduced sexual quality of life compared to estimates from the general population. Impaired bowel function may correlate with erectile dysfunction and impaired fertility in affected individuals.

• Knatten, Charlotte Kristensen; Dahlseng, Magnus Odin; Perminow, Gøri Margrete; Skari, Hans; Austrheim, Astrid Ingeborg & Nyenget, Tove [Show all 10 contributors for this article] (2024). Push-PEG or Pull-PEG: Does the Technique Matter? A Prospective Study Comparing Outcomes After Gastrostomy Placement. Journal of Pediatric Surgery. ISSN 0022-3468. 59(9), p. 1879–1885. doi: 10.1016/j.jpedsurg.2024.03.045. Full text in Research Archive Show summary

  Background Push-PEG (percutaneous endoscopic gastrostomy) with T-fastener fixation (PEG-T) allows one-step insertion of a balloon tube or button, and avoids contamination of the stoma by oral bacteria. However, PEG-T is a technically more demanding procedure with a significant learning curve. The aim of the present study was to compare outcomes after PEG-T and pull-PEG in a setting where both procedures were well established. Materials and methods The study is a prospective cohort study including all patients between 0 and 18 year undergoing PEG-T and pull-PEG between 2017 and 2020 at a combined local and tertiary referral center. Complications and parent reported outcomes were recorded during hospital stay, after 14 days and 3 months postoperatively. Results 82 (93%) of eligible PEG-T and 37 (86%) pull-PEG patients were included. The groups were not significantly different with regard to age or weight. Malignant disorders and heart conditions were more frequent in the pull-PEG group, whilst neurodevelopmental disorders were more frequent in the PEG-T group (p < 0.001). 54% in both groups had a complication within 2 weeks. Late complications (between 2 weeks and 3 months postoperatively) occurred in 63% PEG-T vs 62% pull-PEG patients (p = 0.896). More parents in the pull-PEG group (49%) reported that the gastrostomy tube restricted their child's activity, compared to PEG-T (24%) (p = 0.01). At 3 months follow-up, more pull-PEG patients (43%) reported discomfort from the gastrostomy compared to PEG-T (21%) (p = 0.03). Conclusion Overall complication rates were approximately similar, but pull-PEG was associated with more discomfort and restriction of activity. Levels of Evidence Treatment study level II.

• Hameed, Rania Adel; Hoel, Anders Telle; Diseth, Trond Haaken; Bjørnland, Kristin & Gjone, Inger Helene (2024). Mental Health, Psychosocial Functioning, and Quality of Life in Adolescents With Hirschsprung Disease. Journal of Pediatric Surgery. ISSN 0022-3468. 59(6), p. 1037–1043. doi: 10.1016/j.jpedsurg.2024.01.024. Full text in Research Archive Show summary

  Background: Studies of mental health in adolescents with Hirschsprung disease (HD) are scarce. This cross-sectional study investigates mental health, psychosocial functioning and quality of life in HD adolescents. Methods: Adolescents (12-18 years) treated at the Department of pediatric surgery at Oslo University Hospital were invited for participation. Mental health was assessed by interview; Child Assessment Schedule (CAS) and questionnaires; parental Child Behavior Checklist (CBCL) and adolescent Youth Self-Report (YSR). Psychosocial functioning was rated by Child Global Assessment Scale (cGAS). Adolescent Quality of Life was assessed by Pediatric Quality of Life inventory (PedsQL) and chronic family difficulties (CFD) by interview. Medical records were reviewed for somatic history. Results: Thirty-seven adolescents, 28 males, median age 14.3 years, participated. By CAS interview, 8 of 37 (44% of females and 14% of males) fulfilled criteria for psychiatric diagnosis all within emotional and related disorders. Twenty-seven percent had CBCL internalizing scores and 16% had YSR internalizing scores in clinical range indicating emotional problems. By interviewer rated cGAS, 27% were scored in clinical range. By PedsQL 16% reported reduced psychosocial health score. Increased CFD, lower psychosocial functioning and reduced QoL as well as less paternal education were significantly associated with psychiatric diagnosis. Twice as many (4/8) adolescents who either had a stoma or bowel management had a psychiatric diagnosis compared to those who had neither stoma nor bowel management (7/28). Conclusion: Nearly one in four adolescents with HD fulfilled criteria for psychiatric diagnosis. Mental health problems were associated with reduced psychosocial function and reduced QoL. Level of evidence: III.

• Olsbø, Signe; Kiserud, Sara Georg; Hermansen, Åsmund; Larsen, Marie Hamilton & Bjørnland, Kristin (2024). Health literacy in parents of children with Hirschsprung disease: a novel study. Pediatric Surgery International. ISSN 0179-0358. 41. doi: 10.1007/s00383-024-05917-4. Full text in Research Archive Show summary

  Purpose To explore health literacy (HL) among parents of children with Hirschsprung disease (HD). Methods Norwegian-speaking parents of children under 16 who underwent HD surgery at a tertiary center were surveyed using the Health Literacy Questionnaire-Parent, electronic Health Literacy Scale, General Self-efficacy Scale, and a study-specific questionnaire. Demographics were collected and ethical approval was obtained. Results Among 132 parents (77 mothers) of 91 children (median age 8 years), high HL scores appeared in the domains “understanding health information” and “active engagement”, with lower scores in “provider support”, “health information appraisal”, and “social support”. Higher HL correlated with parents aged over 40 and higher education. Lower scores were seen with non-exclusive Norwegian use at home and not living with the child’s other parent. High electronic HL scores were common (mean 3.6, maximum score 5). 69% had high self-efficacy scores (score > 2, maximum score 4). Self-efficacy correlated strongly with higher HL scores. Conclusion Parents of children with HD feel healthcare providers lack understanding of their child’s challenges, experience limited social support and struggle with interpreting health information. We suggest targeted HL interventions for young, lower-educated, non-cohabitating parents and those not primarily speaking the official language at home.

• Granström, Anna Löf; Irvine, Willemijn; Hoel, Anders Telle; Tabbers, Merit; Kyrklund, Kristiina & Leon, Francesco Fascetti [Show all 24 contributors for this article] (2024). Ernica Clinical Consensus Statements on Total Colonic and Intestinal Aganglionosis. Journal of Pediatric Surgery. ISSN 0022-3468. 59(10). doi: 10.1016/j.jpedsurg.2024.04.019. Full text in Research Archive Show summary

  Background Hirschsprung disease is a congenital intestinal motility disorder characterized by an absence of enteric ganglion cells. Total colonic aganglionosis and near total or total intestinal aganglionosis, defined as absence of ganglion cells in the entire colon and with variable length of small bowel involved, are life-threatening conditions which affect less than 10 % of all patients with Hirschsprung disease. The aim of this project was to develop clinical consensus statements within ERNICA, the European Reference Network for rare congenital digestive diseases, on four major topics: Surgical treatment of total colonic aganglionosis, surgical treatment of total intestinal aganglionosis, management of poor bowel function in total colonic and/or intestinal aganglionosis and long-term management in total colonic and or intestinal aganglionosis. Methods A multidisciplinary panel of representatives from ERNICA centers was invited to participate. Literature was searched, using specified search terms, in Medline (ALL), Embase and Google Scholar. Abstracts were screened and full text publications were selected. The panel was divided in four groups that extracted data from the full text publications and suggested draft statements for each of the major topics. A modified Delphi process was used to refine and agree on the statements. Results The consensus statement was conducted by a multidisciplinary panel of 24 participants from 10 European countries, 45 statements reached consensus after 3 Delphi-rounds. The availability of high-quality clinical evidence was limited, and most statements were based on expert opinion. Another 25 statements did not reach consensus. Conclusions Total colonic and total intestinal aganglionosis are rare variants of Hirschsprung disease, with very limited availability of high-quality clinical evidence. This consensus statement provides statements on the surgical treatment, management of poor bowel function and long-term management for these rare patients. The expert panel agreed that patients benefit from multidisciplinary and personalized care, preferably in an expert center. Type of Study Clinical consensus statement. Level of Evidence 3a.

• Karlsen, Remi Andre; Hoel, Anders Telle; Gjone, Inger Helene & Bjørnland, Kristin (2023). Nurses' Experiences With Anal Dilatations in Babies With Anorectal Malformations – A Focus Group Interview Study. Journal of Pediatric Surgery. ISSN 0022-3468. 58(10), p. 1929–1934. doi: 10.1016/j.jpedsurg.2023.04.021. Full text in Research Archive Show summary

  Aims and objectives To explore nurses' experiences with anal dilatations in babies with anorectal malformations. Background Most babies with anorectal malformations require repeated anal dilatations, either before and/or after reconstructive surgery. Anal dilatation is usually performed without sedation or pain medication. Nurses participate in anal dilatations by assisting doctors doing anal dilatation, doing anal dilatation themselves, and instructing parents how to do anal dilatations. No previous studies have explored how nurses experience being involved in anal dilatations. Design Qualitative study design utilizing focus group interviews. The COREQ guidelines were applied. Methods Nurses with either ≤2 or ≥10 years' working experience participated in two different focus group interviews. The focus group interviews were transcribed and analyzed with content analysis. Results Twelve nurses, two males, participated. Three main themes emerged from the focus group interviews. The first main theme, “Anal dilatation causes distress”, describes the nurses' worries about causing physical and/or psychological harm when doing anal dilatations. The second main theme, “Need for guidelines and training”, contains nurses' recommendations for more theoretical training in addition to written guidelines on anal dilatations. The third main theme, “Collegial support is vital”, describes nurses' needs and strategies for coping with difficult situations related to anal dilatations. Conclusions Anal dilatation causes distress in nurses, and collegial support is essential for coping. Guidelines and systematic training are recommended to improve current practice.

• Örtqvist, Lisa; Holmdahl, Gundela; Borg, Helena; Bjørnland, Kristin; Lilja, Helene & Stenström, Pernilla [Show all 11 contributors for this article] (2023). Bowel control, bladder function, and quality of life in children with cloacal malformations. Journal of Pediatric Surgery. ISSN 0022-3468. 58(10), p. 1942–1948. doi: 10.1016/j.jpedsurg.2022.12.003. Full text in Research Archive
• Hoel, Anders Telle; J., Catherine Teig; Lindam, Anita; Øresland, Tom & Bjørnland, Kristin (2023). Evaluation of a Group-based Patient Education Program Promoting Self-management in Adults with Hirschsprung Disease and Anorectal Malformations. Journal of Pediatric Surgery. ISSN 0022-3468. 58(12), p. 2332–2336. doi: 10.1016/j.jpedsurg.2023.06.015. Full text in Research Archive Show summary

  Introduction Adults with Hirschsprung disease (HD) and anorectal malformations (ARM) may experience persisting and new somatic and psychosocial problems. Patient education programs (PEPs) may improve self-management in patients with chronic illnesses. The aim of this study was to explore HD and ARM adults’ experiences with and evaluation of a group-based PEP. We also looked at factors that might influence the attendance rate. Method Non-intellectually impaired HD and ARM adults were invited to attend a diagnosis specific PEP at a pelvic floor interdisciplinary center. Eight health care professionals lectured. Aspects of the PEP were graded anonymously in a patient reported experience measure (PREM). Ethical approval was obtained. Results 17% (21/125) of invited adults (10HD, 11ARM) attended four PEPs. 19/21 (90%) PREMs were returned. Participants found meeting peers and sharing experiences especially valuable in addition to improved disease knowledge. Lectures by the pediatric and colorectal surgeons, stoma nurse, and sexologist were rated highest by the participants. The majority reported that the PEP would be helpful in managing everyday life. All participants recommended PEP in adolescence. Factors such as gender and travel distance did not affect attendance rate, but participants were older than non-participants, median 37 versus 24 years (p = 0.01). Conclusion Attendance rates were low among HD and ARM adults invited to a PEP, but participants were overall highly satisfied. Peer support, mutual learning, and increased disease knowledge were seen as invaluable assets of the PEP. A web-based PEP was discouraged, while physical PEPs for both adults and adolescents were encouraged.

• Røkkum, Henrik; Hoel, Anders Telle & Bjørnland, Kristin (2023). Experiences and needs of parents of babies treated for congenital duodenal obstruction – A qualitative study. Journal of Pediatric Surgery Open. ISSN 2949-7116. 3. doi: 10.1016/j.yjpso.2023.100050. Full text in Research Archive Show summary

  Background Knowledge about experiences and needs of parents of babies operated for congenital gastrointestinal anomalies in the neonatal period is very limited. Therefore, we performed this qualitative study to explore the experiences and needs in this group of parents. Methods Parents of babies operated for congenital duodenal obstruction participated in a focus group discussion. The focus group discussion was analyzed with hermeneutical interpretation, and themes representing important areas to the parents were identified. Results Six parents of five babies participated. Four themes evolved from the focus group discussion. “Grief over loss of initial parent-child bonding” describes the feeling of being separated from the baby during initial treatment. “Let me take care of my baby” refers to the importance for the parents to be involved in caring for their baby. “Concerns about breastfeeding” reflects the mothers’ worries about and need for encouragement and guidance regarding pumping and breastfeeding. “Trusting health care providers” implies that the parents were confident that their baby was well taken care of, despite an emotionally stressful situation. Conclusions This qualitative study provides new and important knowledge regarding the experiences and needs of parents of babies operated for congenital duodenal obstruction. The results may be generalizable to other gastrointestinal anomalies needing surgery. This new knowledge may help health care providers to better meet the needs in parents of a baby having undergone repair of gastrointestinal anomaly.

• Treider, Martin; Granheim, Sturla; Engebretsen, Anders Hauge; Pripp, Are Hugo; Røkkum, Henrik & Skari, Hans [Show all 8 contributors for this article] (2023). Congenital duodenal obstruction - National trends in management and outcomes during the last quarter of a century in Norway. European journal of pediatric surgery. ISSN 0939-7248. 33(06), p. 503–509. doi: 10.1055/a-2003-1920. Full text in Research Archive Show summary

  Introduction During the last quarter of a century, new surgical techniques in neonates have been introduced, and neonatal intensive care has developed. Few studies have explored the implementation of new techniques and if outcomes in neonates undergoing gastrointestinal surgery have improved in the last decades. Therefore, this study aimed to investigate possible changes in postoperative outcomes and surgical techniques in all neonates operated for congenital duodenal obstruction (CDO) 1995 to 2020 in Norway. Material and Methods This is a national multicenter retrospective study of all neonates undergoing surgery for CDO in Norway from 1995 to 2020. Results from three periods (1995–2003, 2004–2012, and 2013–2020) were compared. The study was approved by the local data protection officers (2020/13386) and (2020/15125). Results We included 186 patients: 41 in period 1 (1995–2003), 83 in period 2 (2004–2012), and 62 in period 3 (2013–2020). Seventy (38%) neonates had Down syndrome and 104 (62%) had additional malformations/disorders. Birth weight, gender, frequency of Down syndrome, and other malformations/disorders did not differ between the three periods. We observed an increased rate of prenatal diagnosis throughout the study period (p < 0.001). The only change in surgical technique was the increased use of transanastomotic feeding tubes (p < 0.001). Length of stay, postoperative complication rate, days with parenteral nutrition, and 30-day mortality rate were stable over time. Conclusion Perioperative treatment and postoperative outcomes in neonates with CDO have been surprisingly unchanged during the last quarter of a century. Only an increased rate of prenatal diagnosis and more frequent use of transanastomotic feeding tubes were observed. Keywords ERAS - neonatal surgery - enhanced recovery after surgery - congenital duodenal obstruction - transanastomotic feeding tube

• Mutanen, Annika; Lilja, Helene Engstrand; Wester, Tomas; Norrby, Heimir; Borg, Helena & Persson, Sara Maria [Show all 11 contributors for this article] (2023). A nordic multicenter study on contemporary outcomes of pediatric short bowel syndrome in 208 patients. Clinical Nutrition. ISSN 0261-5614. 42(7), p. 1095–1103. doi: 10.1016/j.clnu.2023.05.017. Full text in Research Archive Show summary

  Background & aims Despite advances in the management of short bowel syndrome related intestinal failure (SBS-IF), large-scale contemporary pediatric studies are scarce. The aim of this multicenter study was to assess key outcomes and clinical prognostic factors in a recent Nordic pediatric SBS-IF population. Methods Patients with SBS-IF treated during 2010–2019, whose parenteral support (PS) started at age <1 year and continued >60 consecutive days were included and retrospectively reviewed. All six participating centers followed multidisciplinary SBS-IF management. Risk factors for PS dependency, intestinal failure associated liver disease (IFALD) and mortality were assessed with Cox regression and Kaplan Meier analyses. IFALD was defined with serum liver biochemistry levels. Results Among 208 patients, SBS-IF resulted from NEC in 49%, gastroschisis w/wo atresia in 14%, small bowel atresia in 12%, volvulus in 11%, and other diagnoses in 14%. Median age-adjusted small bowel length was 43% (IQR 21–80%). After median follow up of 4.4 years (IQR 2.5–6.9), enteral autonomy was reached by 76%, none had undergone intestinal transplantation, and overall survival was 96%. Half of deaths (4/8) were caused by septic complications. Although biochemical cholestasis occurred only in 3% at latest follow-up and none of deaths were directly caused by IFALD, elevated liver biochemistry (HR 0.136; P = 0.017) and shorter remaining small bowel (HR 0.941; P = 0.040) predicted mortality. Shorter remaining small bowel and colon, and presence of end-ostomy were the main predictors of PS dependency, but not IFALD. Patients with NEC reached enteral autonomy more efficiently and had decreased incidence of IFALD compared to other etiologies. Conclusions Although with current multidisciplinary management, prognosis of pediatric SBS is encouraging, septic complications and IFALD still associated with the remaining low mortality rate.

• Markel, Moritz; Lacher, Martin; Hall, Nigel J.; Martynov, Illya; Hinojosa, Alexander Siles & Asensio, Juan C. de Augustin [Show all 45 contributors for this article] (2023). Training in minimally invasive surgery: experience of paediatric surgery trainees in Europe. British Journal of Surgery. ISSN 0007-1323. 110(10), p. 1397–1399. doi: 10.1093/bjs/znad245. Full text in Research Archive
• Avanzini, S.; Dall’Igna, P.; Bjørnland, Kristin; Braungart, S.; Cross, K. & Flores, P. [Show all 19 contributors for this article] (2023). Beyond image defined risk factors (IDRFs): a delphi survey highlighting definition of the surgical complexity index (SCI) in neuroblastoma. Pediatric Surgery International. ISSN 0179-0358. 39. doi: 10.1007/s00383-023-05477-z. Full text in Research Archive
• Røkkum, Henrik; Johannessen, Hanna & Bjørnland, Kristin (2023). Perioperative and Long-Term Outcome in Patients Treated for Jejunoileal Atresia. Journal of Pediatric Gastroenterology and Nutrition - JPGN. ISSN 0277-2116. 76(4), p. 434–439. doi: 10.1097/MPG.0000000000003709. Full text in Research Archive Show summary

  Objectives: Jejunoileal atresia is a common cause of neonatal intestinal obstruction. Results of long-term outcome are very limited. The aim of this study was to describe perioperative and postoperative outcome, and to evaluate long-term gastrointestinal quality of life (QoL) in patients treated for jejunoileal atresia. Methods: We conducted a combined retrospective and cross-sectional observational study of patients treated for jejunoileal atresia during 2001–2019. Perioperative data were registered, and complications were classified according to the Clavien-Dindo classification. To evaluate long-term clinical status and QoL, the PedsQL Gastrointestinal Symptoms Scales questionnaire and a self-designed questionnaire were used. Approval from the Data Protection Office was obtained. Results: Seventy patients were included in the retrospective part of the study. Of these, 70% got a primary anastomosis. Concomitant anomalies were registered in 46%. Median length of stay was 28 (5–140) days. Early (<28 days) complication rate was 66%. Early abdominal surgical reinterventions were performed in 11%, most frequently due to anastomotic leak. Late (>28 days) abdominal surgical reinterventions were performed in 21%, and most commonly for bowel obstruction. Overall mortality rate was 4%. Thirty-two patients with median 8 (2–19) years returned the questionnaires. Overall gastrointestinal QoL was good. However, concomitant gastrointestinal anomalies were associated with impaired outcome. Embarrassment of the scar was reported in 38%. Three (9%) patients used medication (laxatives, proton pump inhibitor) for gastrointestinal symptoms. Conclusions: Jejunoileal atresia is associated with significant morbidity during initial treatment. Despite this, the majority of the patients have excellent long-term outcomes.

• Johannessen, Hanna & Bjørnland, Kristin (2023). Perioperative and Long-Term Outcome in Patients Treated for Jejunoileal Atresia. Journal of Pediatric Gastroenterology and Nutrition - JPGN. ISSN 0277-2116. doi: 10.1097/mpg.0000000000003709. Full text in Research Archive
• Fyhn, Thomas Johan; Kvello, Morten; Edwin, Bjørn von Gohren; Schistad, Ole; Pripp, Are Hugo & Emblem, Ragnhild [Show all 8 contributors for this article] (2022). Outcome a decade after laparoscopic and open Nissen fundoplication in children: results from a randomized controlled trial. Surgical Endoscopy. ISSN 0930-2794. doi: 10.1007/s00464-022-09458-6. Full text in Research Archive Show summary

  Abstract Background Randomized controlled trials (RCT) comparing long-term outcome after laparoscopic (LF) and open fundoplication (OF) in children are lacking. Here we report recurrence rates and time to recurrence, frequency of re-interventions, use of antisecretory drugs, gastrointestinal symptoms, and patient/parental satisfaction a decade after children were randomized to LF or OF. Methods Cross-sectional long-term follow-up study of a two-center RCT that included patients during 2003–2009. Patients/parents were interviewed and medical charts reviewed for any events that might be related to the fundoplication. If suspicion of recurrence, further diagnostics were performed. Informed consent and ethical approval were obtained. Clinicaltrials.gov: NCT01551134. Results Eighty-eight children, 56 (64%) boys, were randomized (LF 44, OF 44) at median 4.4 [interquartile range (IQR) 2.0–8.9] years. 46 (52%) had neurological impairment. Three were lost to follow-up before first scheduled control. Recurrence was significantly more frequent after LF (24/43, 56%) than after OF (13/42, 31%, p  = 0.004). Median time to recurrence was 1.0 [IQR 0.3–2.2] and 5.1 [IQR 1.5–9.3] years after LF and OF, respectively. Eight (19%) underwent redo fundoplication after LF and three (7%) after OF ( p  = 0.094). Seventy patients/parents were interviewed median 11.9 [IQR 9.9–12.8] years postoperatively. Among these, use of anti-secretory drugs was significantly decreased from preoperatively after both LF (94% vs. 35%, p  &lt; 0.001) and OF (97% vs. 19%, p  &lt; 0.001). Regurgitation/vomiting were observed in 6% after LF and 3% after OF ( p  = 0.609), and heartburn in 14% after LF and 17% after OF ( p  = 1.000). Overall opinion of the surgical scars was good in both groups (LF: 95%, OF: 86%, p  = 0.610). Patient/parental satisfaction with outcome was high, independent of surgical approach (LF: 81%, OF: 88%, p  = 0.500). Conclusions The recurrence rate was higher and recurrence occurred earlier after LF than after OF. Patient/parental satisfaction with outcome after both LF and OF was equally high. Graphical abstract

• Hoel, Anders Telle; Karlsen, Remi André; Fosby, Marianne Valeberg & Bjørnland, Kristin (2022). Sexual function and lower urinary tract symptoms after minimally invasive endorectal pull-through in adolescent males with Hirschsprung disease. Journal of Pediatric Surgery. ISSN 0022-3468. doi: 10.1016/j.jpedsurg.2022.09.017. Full text in Research Archive Show summary

  Background Effects of colorectal resection on sexual function and the lower urinary tract are inadequately studied in patients with Hirschsprung disease (HD). This study aimed to increase existing knowledge on sexual function and lower urinary tract symptoms (LUTS) in HD male adolescents operated with minimally invasive endorectal pull-through (ERPT). Methods Non-syndromic male adolescents (12–18 years) operated with ERPT were invited to participate in this single-center cross-sectional study which included a semi-structured interview on sexual function and LUTS, a questionnaire recording LUTS, and a urodynamic study. Uroflowmetry curves were eligible for evaluation if the voided volume was >50% of expected bladder capacity. Ethical approval and informed consent were obtained. Results Of 37 eligible male adolescents, 35 (95%) with a median age of 14.9 (12.0 -18.3) years were included. 94% had rectosigmoid aganglionosis, and 97% underwent a minimally invasive ERPT. 34 (97%) visited the outpatient clinic. The ability to get erections and to ejaculate was assessed in 25/35 (71%) adolescents. 25/25 (100%) could get an erection, and of adolescents ≥15 years 14/15 (93%) could ejaculate. 32 (91%) returned the questionnaire and underwent urodynamic studies. 15/32 (47%) reported LUTS, but most had only sporadic LUTS. 31/32 (97%) were highly satisfied with their bladder function. Sporadic urinary incontinence was reported by 4/32 (13%), but none reported social problems due to this. Of the eligible 28/32 (88%) uroflowmetry curves, 15/28 (54%) were normal. Conclusions Minimally invasive ERPT seems to preserve sexual function and does not induce lower urinary tract symptoms in adolescent HD males. Level of evidence III. Keywords Hirschsprung disease Endorectal pull-through Minimally invasive surgery Sexual function Lower urinary tract symptoms Adolescence Abbreviations CAKUTcongenital anomalies of the kidney and urinary tract DAN-PSSdanish prostatic symptom score ERPTendorectal pull-through HDHirschsprung disease LUTSlower urinary tract symptoms MCUGmicturating cystourethrogram

• Dahlseng, Magnus Odin; Skari, Hans; Perminow, Gøri Margrete; Kvello, Morten; Nyenget, Tove & Schistad, Ole [Show all 9 contributors for this article] (2022). Reduced complication rate after implementation of a detailed treatment protocol for percutaneous endoscopic gastrostomy with T-fastener fixation in pediatric patients: A prospective study. Journal of Pediatric Surgery. ISSN 0022-3468. 57(10), p. 396–401. doi: 10.1016/j.jpedsurg.2022.03.025. Full text in Research Archive Show summary

  Background/aims Percutaneous endoscopic gastrostomy with push technique (PEG-T) is increasingly used in pediatric patients. In a retrospective study of PEG-T (cohort 1) we reported frequent complications related to T-fasteners and tube dislodgment. The aim of this study was to assess complications after implementation of a strict treatment protocol, and to compare these with the previous retrospective study. Materials and methods The study is a prospective study of PEG-T placement performed between 2017 and 2020 (cohort 2) in pediatric patients (0–18 years). Complications were recorded during hospital stay, fourteen days and three months postoperatively, graded according to the Clavien-Dindo classification and categorized as early (<30 days) or late (>30 days). Results In total 82 patients were included, of which 52 (60%) had neurologic impairments. Median age and weight were 2.0 years [6 months-18.1 years] and 13.4 kg [3.5–51.5 kg], respectively. There was a significant reduction in median operating time from 28 min [10–65 min] in cohort 1 to 15 min [6–35 min] in cohort 2 (p<0.001), number of patients with early tube dislodgement (cohort 1: 9 (10%) vs cohort 2: 1 (1%), p = 0.012), and number of patients with late migrated T-fasteners (cohort 1: 11 (13%) vs cohort 2: 1 (1%), p = 0.004). Conclusion We experienced less migrated T-fasteners and tube dislodgment after implementation of strict treatment protocol.

• Matthyssens, Lucas E.; Nuchtern, Jed G.; Ven, Cees P. Van De; Gabra, Hany O. S.; Bjørnland, Kristin & Irtan, Sabine [Show all 23 contributors for this article] (2022). A Novel Standard for Systematic Reporting of Neuroblastoma Surgery: The International Neuroblastoma Surgical Report Form (INSRF): A Joint Initiative by the Pediatric Oncological Cooperative Groups SIOPEN, COG, and GPOH. Annals of Surgery. ISSN 0003-4932. 275(3), p. 575–585. doi: 10.1097/SLA.0000000000003947. Full text in Research Archive
• Zambaiti, Elisa; Cascio, Salvatore; Pelizzo, Gloria; Hinojosa, Alexander Siles; Asensio, Juan Carlos de Augustin & Fortmann, Caroline [Show all 23 contributors for this article] (2022). Impact of COVID-19 pandemic on paediatric surgical training across Europe. British Journal of Surgery. ISSN 0007-1323. 109(12), p. 1326–1328. doi: 10.1093/bjs/znac306. Full text in Research Archive Show summary

  The rapid spread of COVID-19 had a tremendous impact on healthcare systems and the medical community, as resources were diverted towards priority setting. In many specialties, both non-urgent and urgent activities were reduced or postponed1 . Although children were marginally affected by the pandemic, paediatric surgical services were significantly affected2 . Moreover, the entire medical educational system, and particularly surgical training, was compromised as was the well-being of trainees3 . The changes and challenges imposed by the pandemic on trainee education are largely under-reported. This study aimed to assess the effects of the pandemic on paediatric surgical resident activity and training throughout Europe. An anonymous survey was conducted among paediatric surgery centres across Europe between November 2020 and January 2021 (Table S1). The questionnaire consisted of 30 closed-end and multiple-choice questions, divided into three sections: general information; impact of COVID-19 on overall department activity; and influence on trainee-specific activities and/or teaching. A total of 343 surgeons answered, from 68 centres across 10 European countries. Responders originated mostly from high-volume centres (n = 57, 86 per cent). Since the pandemic outbreak, 75 per cent of the responding centres had been treating patients with COVID-19 only as an emergency. Ten centres (15 per cent) were COVID-19-free hospitals. Redeployment of surgeons towards COVID-dedicated units was observed in 26 centres (38 per cent). The activities mostly affected by the pandemic were operations and outpatient visits, whereas ward rounds were maintained overall. Elective procedures were significantly reduced in 34 centres (50 per cent), and completely interrupted in 19 (28 per cent), compared with other types of surgery (P = 0.04) (Fig. 1a). A significant difference between centres with few and many trainees was observed for emergency (P = 0.001), neonatal (P < 0.001), and oncological surgery (P < 0.001), whereas no variation was found in elective surgery (P = 0.5) (Fig. 1b). Multidisciplinary meetings and teaching were fully interrupted in 31 centres (46 per cent) and reduced in 24 (35 per cent); 82 per cent of centres shifted towards virtual webinars. Only 12 per cent of centres provided constant access to surgical simulators. In contrast, clinical and basic research was preserved; 29 centres (43 per cent) declared the same activity as before the pandemic, and 37 reported having the same or an increased number of scientific publications (54 per cent). Pandemic-related restrictions limiting non-emergency operations resulted in decreased surgical volume for trainees4 , inevitably raising concerns about the learning curve and completion of educational requirements

• Karlsen, Remi Andre; Hoel, Anders Telle; Fosby, Marianne Valeberg; Ertresvåg, Kjetil; Austrheim, Astrid Ingeborg & Stensrud, Kjetil Juul [Show all 7 contributors for this article] (2022). Comparison of clinical outcomes after total transanal and laparoscopic assisted endorectal pull-through in patients with rectosigmoid Hirschsprung disease. Journal of Pediatric Surgery. ISSN 0022-3468. 57(9), p. 69–74. doi: 10.1016/j.jpedsurg.2022.01.011. Full text in Research Archive Show summary

  Background Total transanal (TERPT) and laparoscopic endorectal pull-through (LERPT) are the most common procedures to treat rectosigmoid Hirschsprung's disease (HD). Since few studies have compared the two methods, we aimed to assess clinical outcomes after TERPT and LERPT in this cross-sectional study. Methods and Patients All patients with rectosigmoid HD operated with TERPT and LERPT between 2001 and 2018 were eligible. Peri-operative data were registered from patients’ records, and bowel function was assessed according to the Krickenbeck classification. Results 91/97 (94%) patients were included; 46 operated with TERPT and 45 with LERPT. Bowel function was assessed in 80 patients at median seven (4–17) years. There was no difference in functional outcome between the procedures. Unplanned procedures under general anesthesia were frequent; 28% after TERPT and 49% after LERPT (p = 0.04). 11% of TERPT and 29% of LERPT patients got botulinum toxin injections (p = 0.03). In the TERPT group, patients operated in the neonatal period had poorer outcome (78%) than those operated later (24%) (p = 0.005). No difference in operative time, length of hospital stay, and rate of early and late complications was found between the procedures. Conclusion There was no difference in long-term bowel function in patients with rectosigmoid HD operated with TERPT or LERPT. More LERPT patients had an unplanned procedure under general anesthesia, mostly due to obstructive symptoms.

• Treider, Martin; Ohnesorge, Susanne & Bjørnland, Kristin (2022). Post-cholecystectomy syndrome in pediatric patients: Occurrence and spectrum of symptoms. Journal of Pediatric Surgery. ISSN 0022-3468. doi: 10.1016/j.jpedsurg.2022.07.011. Full text in Research Archive Show summary

  Background Post-cholecystectomy syndrome (PCS) refers to persistent or new abdominal symptoms after cholecystectomy. As there are very few reports on PCS in pediatric patients, we aimed to examine whether it was a frequent finding and which symptoms the affected children experienced. Method This is a retrospective cross sectional study of pediatric patients, who underwent cholecystectomy during 2003–2019 at Oslo University Hospital. The PedsQL™ gastrointestinal symptoms scale questionnaire and a self-designed questionnaire exploring satisfaction after surgery and current medical conditions were mailed to all eligible patients. Patient/parental consent and approval from the local data protection officer (19/09054) were obtained. Results Questionnaires were sent to 82 patients of whom 44 (54%) answered. There were no significant demographic differences between the responders and the non responders. We identified 16 (36.7%) patients to have PCS. The most common symptoms were diarrhea (25%), bloating (16%), and heartburn/reflux (16%). Overweight was more common in patients with PCS (31%) than in patients without PCS (4%) (p = 0.014). Altogether 34/44 (77.3%) patients were satisfied with the result of the cholecystectomy; 92,6% of patients without PCS and 56.6% of those with PCS (p = 0.012). Conclusion PCS is not uncommon in pediatric patients, and they report a wide range of gastrointestinal symptoms. We identified overweight as a potential risk factor for developing PCS. Nonetheless, most patients got total relief of abdominal pain and were satisfied with outcome after cholecystectomy.

• Treider, Martin; Engebretsen, Anders Hauge; Skari, Hans & Bjørnland, Kristin (2021). Is postoperative transanastomotic feeding beneficial in neonates with congenital duodenal obstruction? Pediatric Surgery International. ISSN 0179-0358. doi: 10.1007/s00383-021-05053-3. Full text in Research Archive Show summary

  Abstract Purpose We aimed to evaluate possible positive and negative effects of postoperative use of transanastomotic feeding tube (TAFT) in neonates operated for congenital duodenal obstruction (CDO). Methods This is a retrospective study reviewing medical records of neonates operated for CDO during 2003–2020 and comparing postoperative feeding outcomes and complications in patients with and without TAFT. Approval from the hospital’s data protection officer was obtained. Results One hundred patients, 59% girls, were included, and 37% received TAFT. Mean birth weight and gestational age were 2628 (675.1) grams and 36.6 (2.4) weeks, respectively. Furthermore, 45% had no other malformations, and 36% had Down syndrome. Patient demographics were similar for TAFT and not-TAFT patients, except that not-TAFT neonates weighed median 335 g less ( p  = 0.013). The TAFT group got parenteral nutrition 2 days shorter ( p  &lt; 0.001) and started enteral feeds 1.5 days earlier ( p  &lt; 0.001) than the not-TAFT group. Fewer neonates with TAFT got a central venous catheter [65 vs 89%, ( p  = 0.008)]. In the TAFT group, 67% were breast fed at discharge compared to 49% in the not-TAFT group ( p  = 0.096). Conclusion Neonates with TAFT had earlier first enteral feed, fewer days with parenteral nutrition and fewer placements of central venous catheters.

• Gabra, HO; Irtan, s; Cross, K; Lobos, P; Froeba-Pohl, A & Pio, L [Show all 24 contributors for this article] (2021). Minimally invasive surgery for neuroblastic tumours: A SIOPEN multicentre study: Proposal for guidelines. European Journal of Surgical Oncology. ISSN 0748-7983. 48(1), p. 283–291. doi: 10.1016/j.ejso.2021.08.013. Full text in Research Archive
• Kvello, Morten; Knatten, Charlotte Kristensen; Fyhn, Thomas Johan & Bjørnland, Kristin (2021). Short and long-term outcomes after pediatric redo fundoplication. Journal of Pediatric Surgery. ISSN 0022-3468. p. 1–5. doi: 10.1016/j.jpedsurg.2021.05.012. Full text in Research Archive Show summary

  Background Redo fundoplication (RF) is the most common surgical treatment for recurrent gastroesophageal reflux disease (GERD) in children, but outcomes after RF are rarely reported. The aim of this study was to assess short- and long-term outcomes after RF in childhood. Methods The study is a follow-up study of patients undergoing RF from 2002 to 2020 at a teriary care center. Patients/parents were sent questionnaires recording symptoms of recurrent GERD, troublesome side-effects and satisfaction. Retrospective chart review was also performed. Results 24/28 (86%) patients were included median 9 (1.6 months–17.7 years) years after RF. 16 (67%) had neurologic impairment. Indications for RF was recurrence of GERD (n = 18), discomfort or dysphagia from a herniated wrap (n = 5) and dysphagia from a slipped fundoplication (n = 1). Median operating time was 128 (95–250) min. Six (25%) patients experienced early major complications, of which two were gastrostomy related. Five (21%) patients experienced recurrence after RF. Three of these were symptom free at follow-up with medical treatment or re-RF. The most common symptom at follow-up was stomach pain (37%) and excessive flatulence (38%). 18/22 (95%) patients/parents would choose RF again, and 21/22 would recommend RF to someone in a similar situation. Conclusions RF is successful in treating recurrent GERD after primary fundoplication, and patient/parental satisfaction is high.

• Stenström, Pernilla; Kyrklund, K.; Bräutigam, M.; Lilja, Lilja Engstrand; Stensrud, Kjetil Juul & Granström, Granstrom Löf [Show all 13 contributors for this article] (2020). Total colonic aganglionosis: multicentre study of surgical treatment and patient-reported outcomes up to adulthood. BJS Open. 4(5), p. 943–953. doi: 10.1002/bjs5.50317. Full text in Research Archive
• Hoel, Anders Telle; Tofft, Louise; Bjørnland, Kristin; Gjone, Inger Helene; J., Catherine Teig & Øresland, Tom [Show all 8 contributors for this article] (2020). Reaching adulthood with Hirschsprung's disease: Patient experiences and recommendations for transitional care. Journal of Pediatric Surgery. ISSN 0022-3468. doi: 10.1016/j.jpedsurg.2020.05.015. Full text in Research Archive Show summary

  Background/Purpose The need for transitional care has gained increased focus in the treatment of patients with congenital colorectal disorders. We aimed to acquire in-depth knowledge about the experiences of adult patients with Hirschsprung's disease (HD) and their suggestions for transitional care. Methods Binational study applying gender equal focus group interviews (FGI). Results Seventeen (9 men) of 52 invited patients with median age 29 (19–43) years participated. Three themes evolved from the FGI. “Scarred body and soul” describes the somatic and psychosocial challenges the patients experienced and “limited health literacy on HD” refers to the patients' lack of HD knowledge. “Absent transition” depicts missing transitional care and the patients' inability to find adult HD specialists. The adult HD patients strongly recommended transitional care from early teens with focus on information about HD and establishment of a peer-to-peer program. They also emphasized the possibility of being referred to a pelvic floor center. Conclusions HD negatively influences patients' somatic and psychosocial health in childhood, adolescence and adulthood. Adult HD patients strongly recommend transitional care from early teens and the possibility for referral to a center working with pelvic floor dysfunctions. Level of evidence IV Type of research Clinical

• Holmes, Keith; Pötschger, Ulrike; Pearson, Andrew D.J.; Sarnacki, Sabine; Cecchetto, Giovanni & Gomez-Chacon, Javier [Show all 39 contributors for this article] (2020). Influence of surgical excision on the survival of patients with stage 4 high-risk neuroblastoma: A report from the HR-NBL1/SIOPEN study. Journal of Clinical Oncology. ISSN 0732-183X. 38(25), p. 2902–2915. doi: 10.1200/JCO.19.03117. Full text in Research Archive Show summary

  PURPOSE To evaluate the impact of surgeon-assessed extent of primary tumor resection on local progression and survival in patients in the International Society of Pediatric Oncology Europe Neuroblastoma Group High-Risk Neuroblastoma 1 trial. PATIENTS AND METHODS Patients recruited between 2002 and 2015 with stage 4 disease &gt; 1 year or stage 4/4S with MYCN amplification &lt; 1 year who had completed induction without progression, achieved response criteria for high-dose therapy (HDT), and had no resection before induction were included. Data were collected on the extent of primary tumor excision, severe operative complications, and outcome. RESULTS A total of 1,531 patients were included (median observation time, 6.1 years). Surgeon-assessed extent of resection included complete macroscopic excision (CME) in 1,172 patients (77%) and incomplete macroscopic resection (IME) in 359 (23%). Surgical mortality was 7 (0.46%) of 1,531. Severe operative complications occurred in 142 patients (9.7%), and nephrectomy was performed in 124 (8.8%). Five-year event-free survival (EFS) ± SE (0.40 ± 0.01) and overall survival (OS; 0.45 ± 0.02) were significantly higher with CME compared with IME (5-year EFS, 0.33 ± 0.03; 5-year OS, 0.37 ± 0.03; P &lt; .001 and P = .004). The cumulative incidence of local progression (CILP) was significantly lower after CME (0.17 ± 0.01) compared with IME (0.30 ± 0.02; P &lt; .001). With immunotherapy, outcomes were still superior with CME versus IME (5-year EFS, 0.47 ± 0.02 v 0.39 ± 0.04; P = .038); CILP was 0.14 ± 0.01 after CME and 0.27 ± 0.03 after IME ( P &lt; .002). A hazard ratio of 1.3 for EFS associated with IME compared with CME was observed before and after the introduction of immunotherapy ( P = .030 and P = .038). CONCLUSION In patients with stage 4 high-risk neuroblastoma who have responded to induction therapy, CME of the primary tumor is associated with improved survival and local control after HDT, local radiotherapy (21 Gy), and immunotherapy.

• Kvello, Morten; Knatten, Charlotte Kristensen & Bjørnland, Kristin (2020). Laparoscopic gastrostomy placement in children has few major, but many minor early complications. European journal of pediatric surgery. ISSN 0939-7248. 30(6), p. 548–553. doi: 10.1055/s-0039-3401988. Full text in Research Archive Show summary

  Abstract Introduction Laparoscopic gastrostomy (LAPG) is an increasingly popular alternative to more traditional gastrostomy techniques. This study evaluates early postoperative complications following LAPG and investigates risk factors for gastrostomy complications. Materials and Methods Retrospective study of patients &lt;16 years undergoing LAPG from 2005 to 2018. Early postoperative complications (&lt;30 days) were grouped as gastrostomy-related or general and graded according to the Clavien-Dindo classification for surgical complications. Results A total of 104 patients, of which 54 (52%) had neurological impairment (NI), were included. Median age and weight were 1.2 years (1 day–15.2 years) and 8.9 kg (3.4–36), respectively. Operating time was median 37 minutes (19–86) and shorter in the second half of the patients (46 vs. 35 minutes, p = 0.04). A total of 40 (38%) patients experienced 53 gastrostomy-related complications. Of these, seven complications needed surgical treatment; severe leakage (2), too short gastrostomy button (1), feeding difficulties (1), gastric outlet obstruction (1), omentum trapped in umbilical port sutures (1), and suspected fascial defect (1). Stoma infection and granulation tissue were reported in 13 and 12%, respectively. Tube dislodgement occurred in six patients and was managed with bedside reinsertion in all. Gastrostomy-related complications were less frequent in NI patients (46 vs 22%, p = 0.01). Conclusion LAPG is a safe procedure with few major complications, but a high rate of minor complications. Operating time declined during the study period, and NI patients had fewer gastrostomy-related complications.

• Bjørnland, Kristin; Hukkinen, Maria; Gatzinsky, Vladimir; Arnell, Henrik; Pakarinen, Mikko & Almaas, Runar [Show all 7 contributors for this article] (2020). Partial Biliary Diversion May Promote Long-Term Relief of Pruritus and Native Liver Survival in Children with Cholestatic Liver Diseases. European journal of pediatric surgery. ISSN 0939-7248. p. 1–6. doi: 10.1055/s-0040-1714657. Full text in Research Archive Show summary

  Abstract Introduction Rare cholestatic liver diseases may cause debilitating pruritus in children. Partial biliary diversion (PBD) may relieve pruritus and postpone liver transplantation which is the only other alternative when conservative treatment fails. The aim was to report long-term outcome after PBD in a population of 26 million people during a 25-year period. Materials and Methods This is an international, multicenter retrospective study reviewing medical journals. Complications were graded according to the Clavien–Dindo classification system. Results Thirty-three patients, 14 males, underwent PBD at a median of 1.5 (0.3–13) years at four Nordic pediatric surgical centers. Progressive familial intrahepatic cholestasis was the most common underlying condition. Initially, all patients got external diversion, either cholecystojejunostomy (25 patients) or button placed in the gallbladder or a jejunal conduit. Early complications occurred in 14 (42%) patients, of which 3 were Clavien–Dindo grade 3. Long-term stoma-related complications were common (55%). Twenty secondary surgeries were performed due to stoma problems such as prolapse, stricture, and bleeding, or conversion to another form of PBD. Thirteen children have undergone liver transplantation, and two are listed for transplantation due to inefficient effect of PBD on pruritus. Serum levels of bile acids in the first week after PBD construction were significantly lower in patients with good relief of pruritus than in those with poor effect (13 [2–192] vs. 148 [5–383] μmol/L; p = 0.02). Conclusion PBD may ensure long-term satisfactory effect on intolerable pruritus and native liver survival in children with cholestatic liver disease. However, stoma-related problems and reoperations are common.

• Fosby, Marianne Valeberg; Stensrud, Kjetil Juul & Bjørnland, Kristin (2020). Bowel function after transanal endorectal pull-through for Hirschsprung disease – does outcome improve over time? Journal of Pediatric Surgery. ISSN 0022-3468. 55(11), p. 2375–2378. doi: 10.1016/j.jpedsurg.2020.04.010. Full text in Research Archive Show summary

  Background The reported functional outcome in patients operated with transanal endorectal pull-through (ERPT) for Hirschsprung disease (HD) varies greatly. Some studies suggest better functional outcome in older than in younger HD patients, but there are almost no longitudinal studies that have demonstrated such improvement. Therefore, we aimed to compare functional outcome in a cohort of HD patients over time to assess whether bowel function improves with increasing age. Methods Functional outcome in HD patients operated with ERPT from 1998 to 2007 was recorded by standardized interviews by an independent investigator during 2008–2011 and again in 2017/2018. Bowel function was assessed using the Krickenbeck questionnaire. Clinical data were collected prospectively. Results 50 of the original 62 patients responded for a second interview. Median age at the two interviews was 8,1 (3,4-16,6) and 15,4 (9,9–25) years respectively. There was no difference in the rate of soiling at first (52%) and second (52%) follow-up. Constipation was reported in 20% of the patients at first, and in 24% at second follow-up. Bowel management was used by 30% and 32% at first and second interview respectively. Conclusion Soiling and constipation are common in HD patients several years after surgery, and no improvement of bowel function with increasing age could be demonstrated.

• Kyrklund, Kristiina; Sloots, Cornelius E J; Blaauw, Ivo de; Bjørnland, Kristin; Rolle, Udo & Cavalieri, Duccio [Show all 20 contributors for this article] (2020). ERNICA guidelines for the management of rectosigmoid Hirschsprung's disease. Orphanet Journal of Rare Diseases. 15(164), p. 1–16. doi: 10.1186/s13023-020-01362-3. Full text in Research Archive Show summary

  Background Hirschsprung’s disease (HSCR) is a serious congenital bowel disorder with a prevalence of 1/5000. Currently, there is a lack of systematically developed guidelines to assist clinical decision-making regarding diagnostics and management. Aims This guideline aims to cover the diagnostics and management of rectosigmoid HSCR up to adulthood. It aims to describe the preferred approach of ERNICA, the European Reference Network for rare inherited and congenital digestive disorders. Methods Recommendations within key topics covering the care pathway for rectosigmoid HSCR were developed by an international workgroup of experts from 8 European countries within ERNICA European Reference Network from the disciplines of surgery, medicine, histopathology, microbiology, genetics, and patient organization representatives. Recommendation statements were based on a comprehensive review of the available literature and expert consensus. AGREE II and GRADE approaches were used during development. Evidence levels and levels of agreement are noted. Results Thirty-three statements within 9 key areas were generated. Most recommendations were based on expert opinion. Conclusion In rare or low-prevalence diseases such as HSCR, there remains limited availability of high-quality clinical evidence. Consensus-based guidelines for care are presented.

• Tofft, Louise; Hoel, Anders Telle; Håkansson, Carita; Zawadzki, Antoni; Gjone, Inger Helene & Øresland, Tom [Show all 8 contributors for this article] (2020). Key components of successful transition for adolescents born with anorectal malformations-a Nordic focus group study. International Journal of Adolescent Medicine and Health. ISSN 0334-0139. p. 1–8. doi: 10.1515/ijamh-2020-0052. Full text in Research Archive
• Fyhn, Thomas Johan; Knatten, Charlotte Kristensen; Edwin, Bjørn; Schistad, Ole; Emblem, Ragnhild & Bjørnland, Kristin (2019). Short-term parent reported recovery following open and laparoscopic fundoplication. Journal of Pediatric Surgery. ISSN 0022-3468. p. 1–6. doi: 10.1016/j.jpedsurg.2019.11.006. Full text in Research Archive Show summary

  Background It is assumed that children recover faster after laparoscopic (LF) than after open fundoplication (OF). As this has not been confirmed in any randomized study (RCT), we have in a subsection of a larger RCT compared parent reported recovery of children after LF and OF. Methods Postoperative symptoms, use of analgesics, overall well-being, and time to return to school/day-care were recorded in a subsection of children enrolled in a RCT comparing LF and OF. Ethical approval and parental consent were obtained. Results Fifty-five children (LF: n = 27, OF: n = 28) of the 88 enrolled in the RCT, were included in the short term follow up on parent reported recovery. Caregivers were interviewed median 28 days [interquartile range (IQR) 22–36] postoperatively. There was no significant difference regarding improvement in overall well-being (LF: 63%, OF: 68%, p = 0.70), new-onset dysphagia (LF: 30%, OF: 18%, p = 0.08), use of analgesics (LF: 15%, OF: 14%, p = 1.00), or time to return to school/day-care (LF: median 7 days [IQR 5–14] vs. OF: 12 days [IQR 7–15], p = 0.35). Conclusion We could not demonstrate faster recovery after LF than after OF. Most children had returned to school/day-care after 2 weeks and had improved overall well-being 1 month after surgery.

• Kvello, Morten; Åvitsland, Tone Lise; Knatten, Charlotte Kristensen; Fyhn, Thomas Johan; Malt, Ulrik Fredrik & Emblem, Ragnhild [Show all 7 contributors for this article] (2019). Psychologic Distress and Anxiety in Mothers of Children With Gastroesophageal Reflux Undergoing Antireflux Surgery. Journal of Pediatric Gastroenterology and Nutrition - JPGN. ISSN 0277-2116. 68(6), p. 818–823. doi: 10.1097/MPG.0000000000002286. Full text in Research Archive Show summary

  Objectives: Parents of children with a chronic illness are at risk for impaired psychosocial functioning. Gastroesophageal reflux disease (GERD) is such a disease, and no studies have investigated effects of antireflux surgery on parental psychological distress. The aims of this study were to assess psychological distress and state and trait anxiety in mothers of children with GERD, and to explore possible changes after antireflux surgery. Methods: Mothers of children referred for antireflux surgery were included in this prospective study. Standardized questionnaires were used to evaluate psychological distress and state and trait anxiety before and 12 months after antireflux surgery. Results: Of 87 eligible mothers of children with GERD, 62 (71%) agreed to participate. All children had objectively verified GERD by 24-hour pH-monitoring and/or upper gastrointestinal contrast study and unsatisfactory symptom relief of pharmacological treatment. Thirty-one (50%) mothers returned questionnaires postoperatively. Preoperatively, mothers of children undergoing antireflux surgery reported high levels of psychological distress and state anxiety, and 54% had scores indicating clinically significant psychological distress. None of the preoperative child characteristics were found to significantly influence maternal psychological distress or state anxiety. Twelve months postoperatively, both psychological distress and state anxiety were reduced. Conclusions: Mothers of children undergoing antireflux surgery reported reduced levels of psychological distress and state anxiety 12 months after the operation.

• Hukkinen, Maria; Bjørnland, Kristin; Gatzinsky, Vladimir; Iber, Tarja; Johansen, Lars Søndergaard & Qvist, Niels [Show all 9 contributors for this article] (2019). Management strategies and treatment results of pediatric choledochal malformations in the Nordic countries. HPB. ISSN 1365-182X. p. 1–8. doi: 10.1016/j.hpb.2019.07.001. Full text in Research Archive Show summary

  Background Incidence and long-term outcomes of choledochal malformations (CMs) in children remain unclear. Methods Clinical characteristics, operative details, complications, and follow-up data were collected from eight pediatric surgical centers in Sweden, Norway, Denmark, and Finland, which also answered a questionnaire addressing management practices. Results During 2000–2017, 126 pediatric CMs were diagnosed, corresponding an incidence of 1:37,400. Diagnostic, treatment, and follow-up practices varied markedly. Of patients with complete clinical data (n = 119), 85% and 11% had type I and IV CMs and were managed by open hepaticojejunostomy at median age of 2.5 (interquartile range 0.46–5.8) years. Associated malformations were more common in fusiform and type IV (23%) than cystic CMs (8%, p = 0.043). Pancreaticobiliary maljunction was more frequently confirmed in patients presenting with pancreatitis (26% vs. 7%, p = 0.005) and with fusiform CMs (56% vs. 25%, p = 0.001). Cholangitis/pancreatitis episodes, occurring in 12% during postoperative follow-up of 4.0 (2.0–7.9) years, associated with longer surveillance (OR 1.32, 95% CI 1.13–1.54, p < 0.001). However, only two thirds of centers continued follow-up until adulthood. No malignancies were reported. Conclusions CM incidence was higher than traditionally reported among Western populations. Although open hepaticojejunostomy carries good short-term outcomes, long-term morbidity is noteworthy. Standardized evidence-based management strategies and long-term follow-up are encouraged.

• Bjørnland, Kristin; Hinna, Maren Tveit; Aksnes, Gunnar; Stensrud, Kjetil Juul; Ertresvåg, Kjetil & Østensen, Inger Anniken Bjørnstad [Show all 12 contributors for this article] (2018). Outcome for biliary atresia patients treated at a low-volume centre. Scandinavian Journal of Gastroenterology. ISSN 0036-5521. 53(4), p. 471–474. doi: 10.1080/00365521.2018.1439097. Full text in Research Archive Show summary

  Objectives: The importance of case load for treatment of extrahepatic biliary atresia (BA) is debated. The aim of this study was to register results of BA treatment in a small volume centre. Methods: Retrospective chart review study of patients with BA treated from 2000 to 2017. The institutional review board approved the study. Results: 45 babies were identified of which 42 (93%) are alive. 41 patients had a Kasai portoenterostomy (PE), two a hepaticojejunostomy and two a primary liver transplantation. The age at PE/hepaticojejunostomy was median 63 (4-145 days). Seven surgeons performed the operations, and the median duration of the diagnostic work-up was 8 (3-24) days. Clearance of jaundice was achieved in 23/43 (53%) babies, and 3- and 5-year native liver survival was 47% and 40% respectively. Clearance of jaundice post PE/hepaticojejunostomy was a strong predictor of native liver survival (adjusted OR: 0.027; 95%; P=0.009). Plasma level of conjugated bilirubin at time of referral was also a significant predictor of native liver survival (adjusted OR: 1.053; P=0.017). Conclusion: A small volume centre may achieve satisfactory results for BA patients. The study has, however, identified factors that may further improve results; earlier referral, optimizing diagnostic work-up, and establishing one dedicated surgical team.

• Kvello, Morten; Knatten, Charlotte Kristensen; Perminow, Gøri Margrete; Skari, Hans; Engebretsen, Anders Hauge & Schistad, Ole [Show all 8 contributors for this article] (2018). Initial experience with percutaneous endoscopic gastrostomy with T-fastener fixation in pediatric patients. Endoscopy International Open. 6(2), p. E179–E185. doi: 10.1055/s-0043-122227. Full text in Research Archive Show summary

  Background and study aims Insertion of a percutaneous endoscopic gastrostomy (PEG) with push-through technique and T-fastener fixation (PEG-T) has recently been introduced in pediatric patients. The T-fasteners allow a primary insertion of a balloon gastrostomy. Due to limited data on the results of this technique in children, we have investigated peri- and postoperative outcomes after implementation of PEG-T in our department. Patients and methods This retrospective chart review included all patients below 18 years who underwent PEG-T placement from 2010 to 2014. Main outcomes were 30-day postoperative complications and late gastrostomy-related complications. Results In total, 87 patients were included, and median follow-up time was 2.4 years (1 month – 4.9 years). Median age and weight at PEG-T insertion were 1.9 years (9.4 months – 16.4 years) and 10.4 kg (5.4 – 33.0 kg), respectively. Median operation time was 28 minutes (10 – 65 minutes), and 6 surgeons and 3 endoscopists performed the procedures. During the first 30 days, 54 complications occurred in 41 patients (47 %). Most common were peristomal infections treated with either local antibiotics in 11 patients (13 %) or systemic antibiotics in 11 other patients (13 %). 9 patients (10 %) experienced tube dislodgment. Late gastrostomy-related complications occurred in 33 patients (38 %). The T-fasteners caused early and late complications in 9 (10 %) and 11 patients (13 %), respectively. Of these, 4 patients (5 %) had subcutaneously migrated T-fasteners which were removed under general anesthesia. Conclusion We found a high rate of complications after PEG-T. In particular, problems with the T-fasteners and tube dislodgment occurred frequently after PEG-T insertion.

• Pakarinen, Mikko; Johansen, Lars Søndergaard; Svensson, Jan F.; Bjørnland, Kristin; Gatzinsky, Vladimir & Stenström, Pernilla [Show all 16 contributors for this article] (2018). Outcomes of biliary atresia in the Nordic countries – a multicenter study of 158 patients during 2005–2016. Journal of Pediatric Surgery. ISSN 0022-3468. 53(8), p. 1509–1515. doi: 10.1016/j.jpedsurg.2017.08.048. Full text in Research Archive Show summary

  Background/purpose: Biliary atresia is the most common reason for newborn cholestasis and pediatric liver transplantation. Even after normalization of serum bilirubin after portoenterostomy, most patients require liver transplantation by adulthood due to expanding fibrosis. We addressed contemporary outcomes of biliary atresia in the Nordic countries. Methods: Data on center and patients characteristics, diagnostic practices, surgical treatment, adjuvant medical therapy after portoenterostomy, follow-up and outcomes were collected from all the Nordic centers involved with biliary atresia care during 2005–2016. Results: Of the 154 patients, 148 underwent portoenterostomy mostly by assigned surgical teams at median age of 64 (interquartile range 37–79) days, and 95 patients (64%) normalized their serum bilirubin concentration while living with native liver. Postoperative adjuvant medical therapy, including steroids, ursodeoxycholic acid and antibiotics was given to 137 (93%) patients. Clearance of jaundice associated with young age at surgery and favorable anatomic type of biliary atresia, whereas annual center caseload > 3 patients and diagnostic protocol without routine liver biopsy predicted early performance of portoenterostomy. The cumulative 5-year native liver and overall survival estimate was 53% (95% CI 45–62) and 88% (95% CI 83–94), respectively. Portoenterostomy age < 65 days and annual center caseload > 3 patients were predictive for long-term native liver survival, while normalization of serum bilirubin after portoenterostomy was the major predictor of both native liver and overall 5-year survival. Conclusions: The outcomes of biliary atresia in the Nordic countries compared well with previous European studies. Further improvement should be pursued by active measures to reduce patient age at portoenterostomy.

• Pakarinen, Mikko; Bjørnland, Kristin; Qvist, Niels & Wester, Tomas (2017). Centralized Pediatric Surgery in the Nordic Countries: A Role Model for Europe? European journal of pediatric surgery. ISSN 0939-7248. 27(5), p. 395–398. doi: 10.1055/s-0037-1606635. Full text in Research Archive
• Knatten, Charlotte Kristensen; Fjeld, Jan Gunnar; Medhus, Asle Wilhelm; Pripp, Are Hugo; Fyhn, Thomas Johan & Aabakken, Lars [Show all 10 contributors for this article] (2017). Preoperative liquid gastric emptying rate does not predict outcome after fundoplication. Journal of Pediatric Surgery. ISSN 0022-3468. 52(4), p. 540–543. doi: 10.1016/j.jpedsurg.2016.09.068. Full text in Research Archive
• Bjørnland, Kristin; Pakarinen, Mikko; Stenström, Pernilla; Stensrud, Kjetil Juul; Neuvonen, Malla & Granström, A. [Show all 12 contributors for this article] (2017). A Nordic multicenter survey of long-term bowel function after transanal endorectal pull-through in 200 patients with rectosigmoid Hirschsprung disease. Journal of Pediatric Surgery. ISSN 0022-3468. 52(9), p. 1458–1464. doi: 10.1016/j.jpedsurg.2017.01.001. Full text in Research Archive
• Stenström, Pernilla; Sandelin, Hanna; Emblem, Ragnhild & Bjørnland, Kristin (2016). Lower urinary tract symptoms in children With anorectal malformations With rectoperineal fistulas. Journal of Pediatric Surgery. ISSN 0022-3468. 51(8), p. 1234–1240. doi: 10.1016/j.jpedsurg.2016.01.015. Full text in Research Archive
• Kvello, Morten; Åvitsland, Tone Lise; Knatten, Charlotte Kristensen; Pripp, Are Hugo; Aabakken, Lars & Emblem, Ragnhild [Show all 7 contributors for this article] (2016). Trends in the use of gastrostomies at a tertiary paediatric referral centre. Scandinavian Journal of Gastroenterology. ISSN 0036-5521. 51(5), p. 625–632. doi: 10.3109/00365521.2015.1123288. Full text in Research Archive
• Knatten, Charlotte Kristensen; Kvello, Morten; Fyhn, Thomas Johan; Edwin, Bjørn; Schistad, Ole & Aabakken, Lars [Show all 10 contributors for this article] (2015). nissen fundoplication in neurologically impaired and neurologically normal children. A prospective study. Journal of Pediatric Surgery. ISSN 0022-3468. 22. doi: 10.1016/j.jpedsurg.2015.12.007. Full text in Research Archive
• Stensrud, Kjetil Juul; Emblem, Ragnhild & Bjørnland, Kristin (2015). Anal endosonography and bowel function in patients undergoing different types of endorectal pull-through procedures for Hirschsprung disease. Journal of Pediatric Surgery. ISSN 0022-3468. 50(8), p. 1341–1346. doi: 10.1016/j.jpedsurg.2014.12.024. Full text in Research Archive
• Fyhn, Thomas Johan; Knatten, Charlotte Kristensen; Edwin, Bjørn; Schistad, Ole; Aabakken, Lars & Kjosbakken, Heidi [Show all 9 contributors for this article] (2015). Randomized controlled trial of laparoscopic and open Nissen fundoplication in children. Annals of Surgery. ISSN 0003-4932. 261(6), p. 1061–1067. doi: 10.1097/SLA.0000000000001045. Full text in Research Archive
• Knatten, Charlotte Kristensen; Hviid, Claus Vinter Bødker; Pripp, Are Hugo; Emblem, Ragnhild & Bjørnland, Kristin (2014). Inflammatory response after open and laparoscopic Nissen fundoplication in children: a randomized study. Pediatric Surgery International. ISSN 0179-0358. 30(1), p. 11–17. doi: 10.1007/s00383-013-3433-2. Full text in Research Archive
• Stenström, Pernilla; Kockum, Christina Clementson; Emblem, Ragnhild; Arnbjörnsson, Einar & Bjørnland, Kristin (2014). Bowel symptoms in children with anorectal malformation - A follow-up with a gender and age perspective. Journal of Pediatric Surgery. ISSN 0022-3468. 49(7), p. 1122–1130. doi: 10.1016/j.jpedsurg.2013.10.022. Full text in Research Archive
• Åvitsland, Tone Lise; Birketvedt, Kjersti; Bjørnland, Kristin & Emblem, Ragnhild (2013). Parent-Reported Effects of Gastrostomy Tube Placement. Nutrition in Clinical Practice (NCP). ISSN 0884-5336. 28(4), p. 493–498. doi: 10.1177/0884533613486484. Full text in Research Archive
• Knatten, Charlotte Kristensen; Åvitsland, Tone Lise; Medhus, Asle Wilhelm; Fjeld, Jan Gunnar; Pripp, Are Hugo & Emblem, Ragnhild [Show all 7 contributors for this article] (2013). Gastric emptying in children with gastroesophageal reflux and in healthy children. Journal of Pediatric Surgery. ISSN 0022-3468. 48(9), p. 1856–1861. doi: 10.1016/j.jpedsurg.2013.03.076. Full text in Research Archive
• Knatten, Charlotte Kristensen; Emblem, Ragnhild & Bjørnland, Kristin (2013). Kirurgisk behandling av gastroøsofageal refluks hos barn. Kirurgen. ISSN 1504-8888. 2, p. 88–90. Full text in Research Archive
• Stensrud, Kjetil Juul; Emblem, Ragnhild & Bjørnland, Kristin (2012). Late diagnosis of Hirschsprung disease-patient characteristics and results. Journal of Pediatric Surgery. ISSN 0022-3468. 47(10), p. 1874–1879. doi: 10.1016/j.jpedsurg.2012.04.022. Full text in Research Archive
• Åvitsland, Tone Lise; Faugli, Anne; Pripp, Are Hugo; Malt, Ulrik Fredrik; Bjørnland, Kristin & Emblem, Ragnhild (2012). Maternal Psychological Distress and Parenting Stress After Gastrostomy Placement in Children. Journal of Pediatric Gastroenterology and Nutrition - JPGN. ISSN 0277-2116. 55(5), p. 562–566. doi: 10.1097/MPG.0b013e31826078bd. Full text in Research Archive
• Knatten, Charlotte Kristensen; Fyhn, Thomas Johan; Edwin, Bjørn; Schistad, Ole; Emblem, Ragnhild & Bjørnland, Kristin (2012). Thirty-day outcome in children randomized to open and laparoscopic Nissen fundoplication. Journal of Pediatric Surgery. ISSN 0022-3468. 47(11), p. 1990–1996. doi: 10.1016/j.jpedsurg.2012.05.038. Full text in Research Archive
• Rehman, Yasser; Stensrud, Kjetil Juul; Mørkrid, Lars; Bjørnland, Kristin & Emblem, Ragnhild (2011). Endosonographic evaluation of anal sphincters in healthy children. Journal of Pediatric Surgery. ISSN 0022-3468. 46(8), p. 1587–1592. doi: 10.1016/j.jpedsurg.2011.03.067. Full text in Research Archive
• Medhus, Asle Wilhelm; Bjørnland, Kristin; Emblem, Ragnhild & Husebye, Einar (2010). Motility of the oesophagus and small bowel in adults treated for Hirschsprung's disease during early childhood. Neurogastroenterology and Motility. ISSN 1350-1925. 22(2). doi: 10.1111/j.1365-2982.2009.01397.x. Full text in Research Archive
• Stensrud, Kjetil Juul; Emblem, Ragnhild & Bjørnland, Kristin (2010). Functional outcome after operation for Hirschsprung disease-transanal vs transabdominal approach. Journal of Pediatric Surgery. ISSN 0022-3468. 45(8), p. 1640–1644. doi: 10.1016/j.jpedsurg.2010.02.065. Full text in Research Archive
• Faugli, Anne; Bjørnland, Kristin; Emblem, Ragnhild; Nøvik, Torunn Stene & Diseth, Trond H (2009). Mental health and psychosocial functioning in adolescents with esophageal atresia. Journal of Pediatric Surgery. ISSN 0022-3468. 44(4), p. 729–737. doi: 10.1016/j.jpedsurg.2008.09.027. Full text in Research Archive
• Rehman, Yasser; Bjørnland, Kristin; Stensrud, Kjetil Juul; Farstad, Inger Nina & Emblem, Ragnhild (2009). Low incidence of enterocolitis and colonic mucosal inflammation in Norwegian patients with Hirschsprung's disease. Pediatric Surgery International. ISSN 0179-0358. 25(2), p. 133–138. doi: 10.1007/s00383-008-2300-z. Full text in Research Archive
• Faugli, Anne; Emblem, Ragnhild; Bjørnland, Kristin & Diseth, Trond H (2009). MENTAL HEALTH IN INFANTS WITH ESOPHAGEAL ATRESIA. Infant Mental Health Journal. ISSN 0163-9641. 30(1), p. 40–56. doi: 10.1002/imhj.20202. Full text in Research Archive
• Aabakken, Lars; Aagenæs, Ingegerd; Sanengen, Truls; Aasen, Steinar; Emblem, Ragnhild & Bjørnland, Kristin (2009). Utility of ERCP in Neonatal and Infant Cholestasis. Journal of Laparoendoscopic and Advanced Surgical Techniques. ISSN 1092-6429. 19(3), p. 431–436. doi: 10.1089/lap.2008.0272. Full text in Research Archive
• Faugli, Anne; Emblem, Ragnhild; Veenstra, Marijke; Bjørnland, Kristin & Diseth, Trond H (2008). Does esophageal atresia influence the mother-infant interaction? Journal of Pediatric Surgery. ISSN 0022-3468. 43(10), p. 1796–1801. doi: 10.1016/j.jpedsurg.2008.04.011. Full text in Research Archive
• Emblem, Ragnhild; Mørkrid, Lars & Bjørnland, Kristin (2007). Anal endosonography is useful for postoperative assessment of anorectal malformations. Journal of Pediatric Surgery. ISSN 0022-3468. 42, p. 1549–1554. doi: 10.1016/j.jpedsurg.2007.04.017. Full text in Research Archive
• Kristensen, Charlotte; Åvitsland, Tone Lise; Emblem, Ragnhild; Refsum, S & Bjørnland, Kristin (2007). Satisfactory long-term results after Nissen fundoplication. Acta Paediatrica. ISSN 0803-5253. 96. doi: 10.1111/j.1651-2227.2007.00282.x. Full text in Research Archive
• Åvitsland, Tone Lise; Kristensen, Charlotte; Emblem, Ragnhild; Veenstra, Marijke; Mala, Tom & Bjørnland, Kristin (2006). Percutaneous endoscopic gastrostomy in children: A safe technique with major symptom relief and high parental satisfaction. Journal of Pediatric Gastroenterology and Nutrition - JPGN. ISSN 0277-2116. 43, p. 624–628. Full text in Research Archive
• Skari, Hans; Malt, Ulrik Fredrik; Bjørnland, Kristin; Egeland, T; Haugen, Guttorm & Skreden, Marianne [Show all 9 contributors for this article] (2006). Prenatal diagnosis of congenital malformations may negatively affect parents' postnatal psychological distress responses. Prenatal Diagnosis. ISSN 0197-3851. 26, p. 1001–1009. Full text in Research Archive
• Frich, Lars Inge; Bjørnland, Kristin; Pettersen, Solveig; Clausen, Ole Petter Fraas & Gladhaug, Ivar Prydz (2006). Increased Activity of Matrix Metalloproteinase 2 and 9 After Hepatic Radiofrequency Ablation. Journal of Surgical Research. ISSN 0022-4804. p. 297–304. Full text in Research Archive
• Munkeby, Berit Holthe; Børke, Wenche Bakken; Bjørnland, Kristin; Sikkeland, Liv Ingunn Bjoner; Borge, Grethe Iren Andersen & Lømo, Jon [Show all 10 contributors for this article] (2005). Resuscitation of hypoxic piglets with 100% O-2 increases pulmonary metalloproteinases and IL-8. Pediatric Research. ISSN 0031-3998. 58(3), p. 542–548. doi: 10.1203/01.PDR.0000179407.46810.2D. Full text in Research Archive Show summary

  We hypothesized that resuscitation with 100% O(2) compared with 21% O(2) is detrimental to pulmonary tissue. The pulmonary injury was assessed by matrix metalloproteinase (MMP) activity, oxidative stress, IL-8, and histology 2.5 h after resuscitation from a hypoxic state. In pulmonary tissue extracts, MMP activity was analyzed by broad matrix-degrading capacity (total MMP) and zymography. MMP-2 mRNA expression was evaluated by quantitative real-time PCR. Total endogenous antioxidant capacity was measured by the oxygen radical absorbance capacity (ORAC) assay, and IL-8 was analyzed by ELISA technique. In bronchoalveolar lavage (BAL) fluid, MMPs were analyzed by zymography. In pulmonary tissue, pro- and active MMP-2 levels were increased in piglets that were resuscitated with 100% O(2) compared with 21% O(2). Pro-MMP-9, total MMP activity, and MMP-2 mRNA levels were significantly increased in resuscitated piglets compared with baseline. Net gelatinolytic activity increased in submucosa and blood vessels after 100% O(2) and only in the blood vessels after 21% O(2). Compared with baseline, ORAC values were considerably lowered in the resuscitated piglets and significantly reduced in the 100% O(2) versus 21% O(2) group. In BAL fluid, both pro-MMP-9 and pro-MMP-2 increased 2-fold in the 100% O(2) group compared with 21% O(2). Moreover, IL-8 concentration increased significantly in piglets that were resuscitated with 100% O(2) compared with 21% O(2), suggesting a marked proinflammatory response in the pulmonary tissue. Altogether, these data strongly suggest that caution must be taken when applying pure O(2) to the newborn infant.

• Bjørnland, Kristin; Flatmark, Kjersti; Pettersen, Solveig; Aasen, Ansgar Oddne; Fodstad, Øystein & Mælandsmo, Gunhild M (2005). Matrix metalloproteinases participate in osteosarcoma invasion. Journal of Surgical Research. ISSN 0022-4804. 127(2), p. 151–156. Full text in Research Archive
• Rehman, Yasser; Emblem, Ragnhild & Bjørnland, Kristin (2005). Transanal colonreseksjon for Hirschsprungs sykdom. Tidsskrift for Den norske legeforening (Tidsskriftet). ISSN 0029-2001. 17(125), p. 2358–2359. Full text in Research Archive
• Faugli, Anne; Aamodt, Geir; Bjørnland, Kristin; Emblem, Ragnhild & Diseth, Trond H (2005). Assessment of early mother-child relation in infants with oesophageal atresia. Nordic Journal of Psychiatry. ISSN 0803-9488. 49(6), p. 498–503. Full text in Research Archive Show summary

  Fifteen one-year old infants with oesophageal atresia and their parents were used to demonstrate how the Parent-Child Early Relational Assessment (PCERA) can be used to explore the mother-child interaction in a clinical sample of children. The infants and their mothers were videotaped for 5-min episodes during feeding and free play, and the quality of the mother-infant interactions was assessed by PCERA. The results showed areas of strength regarding most of the maternal, infant and dyadic components. There was concern about maternal positive physical contact, maternal quality of verbalizations to or about the child, maternal social initiative, infant's communicative competence and infant's visual contact with mother. This concern of social proximity between infants and their mothers was most prominent in the feeding situation. The present study indicates that oesophageal atresia in infants may constitute stressors impinging on the parent-infant relationship. PCERA was found to be an adequate assessment tool with acceptable reliability to evaluate the mother-infant interaction

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• Bjørnland, Kristin & Knatten, Charlotte Kristensen (2017). Reply to letter to the editor. Journal of Pediatric Surgery. ISSN 0022-3468. 52(1), p. 197–198. doi: 10.1016/j.jpedsurg.2016.09.062. Full text in Research Archive
• Faugli, Anne; Bjørnland, Kristin; Skreden, Marianne; Skari, Hans; Björk, Merethe Dalholt & Emblem, Ragnhild [Show all 7 contributors for this article] (2006). Comparison of parental psychological distress among children diagnosed with surgical congenital malformations and children in the general population. Full text in Research Archive Show summary

  Faugli, A., Bjørnland, K., Skreden, M., Skari, H., Emblem, R., Diseth, T.H. Anne Faugli, M.D., The National Hospital/University of Oslo, N-0027 Oslo, Norway anne.faugli@medisin.uio.no COMPARISON OF PARENT PSYCHOLOGICAL DISTRESS AMONG CHILDREN DIAGNOSED WITH SURGICAL CONGENITAL MALFORMATIONS AND CHILDREN IN THE GENERAL POPULATION Background: The birth of an infant with a congenital anomaly is a stressful and emotionally demanding experience for parents. Parenting stress is an important factor influencing parenting behavior and parent-child interaction. This kind of stress may arise from child, parent, and environmental characteristics. Little is known about parental stress around and after the birth of a baby with a surgical anomaly. Aim of the study: To assess psychological stress in parents of one year old children with a severe congenital malformation and parents of children with minor congenital malformations compared to psychological stress in parents of children in the general population. Material and methods: As part of a prospective, longitudinal follow up study of children with esophageal atresia we assessed psychological stress in their parents. 18 one year old children with esophageal atresia, 10 children matched on age and gender with minor urological problems, and 100 1-2 year old children in the general population and their parents were included. The study was a cross-sectional questionnaire study. Standardized psychometric self report instruments (GHQ 30, STAI-X1 and SPSQ) were used, assessing depression, anxiety and parenting stress. Child medical data were registered from medical reports. Results: Multidimensional outcome variables will be tested, searching for predictors of parent stress among children with surgical congenital anomalies and normal children. The results will be presented.

• Åvitsland, Tone Lise; Kristensen, Charlotte; Bjørnland, Kristin; Mala, Tom; Faugli, Anne & Emblem, Ragnhild (2006). Parental psychological distress among children with nutritial- and eating problems. Full text in Research Archive Show summary

  Parental psychological stress in children with nutritional- and eating disorders. Aim of the study. Registration of parental psychological stress before and after gastrostomy insertion in children with nutritional- and eating disorders. Background. Gastrostomy is a method of establishing enteral feeding in children with major nutritional- and eating disorders. These children often have major disabilities and serious diseases which can put their parents under major psychological distress. Parents have reported better quality of life after gastrostomy insertion when asked. We wanted to test this in a follow-up study. Methods. N mothers, and nn fathers, were assessed before and after (3-12 months) their child had had a gastrostomy insertion. The assessment included General Health Questionnaire-30 (GHQ-30), State Anxiety Inventory X1-12, State Anxiety Inventory X2-20 and Impact of Event Scale. During a semi-structured interview we also asked how the parents considered the results of the gastrostomy insertion. Results. So far parents of 20 children with median age nn (range 0,67-10,68 years) have been included. Preliminary results show that the children suffer from a variety of diseases including neurological impairment, heart disease and others. Results of the children’s situation and of the assessments of the parents will be presented.

• Faugli, Anne; Bjørnland, Kristin; Veenstra, Marijke; Emblem, Ragnhild & Diseth, Trond H (2006). Relational patterns and predictors of maternal anxiety and sensitivity among infants with esophageal atresia. Full text in Research Archive
• Faugli, Anne; Bjørnland, Kristin; Aamodt, Geir; Emblem, Ragnhild & Diseth, Trond H (2006). The impact of medical illness and invasive treatment procedures on early parent-child interaction assessed by PCERA and CARE-Index. Full text in Research Archive Show summary

  THE IMPACT OF MEDICAL ILLNESS AND INVASIVE TREATMENT PROCEDURES ON EARLY PARENT-CHILD INTERACTION ASSESSED BY PCERA AND CARE-INDEX Faugli A., Bjørnland K., Aamodt, G., Emblem R., Diseth, T.H. A serious medical illness that occurs during infancy creates adversities in the infant and represents emotional responses by parents, being challenging to the parent-child interaction. It is essential to use a reliable and valid standardized instrument as PCERA and CARE-index in assessing this parent-child relationship. Esophageal atresia (EA) is a congenital anomaly requiring neonatal surgery. Typical symptoms are frothing and bubbling of saliva, coughing, and respiratory distress. Feeding exacerbate these symptoms. Invasive procedures may be necessary to prevent nutritional problems. Little is known about long-term psychosocial function of children with EA, and the emotional response the parent brings into the parent child interaction and relationship. Aim of the study was to compare the parent-child interaction in infants with EA with infants with minor urological diseases submitted to the surgical ward using CARE-index and PCERA. The sample consists of 39 one year old infants with EA born in 1999-2003, and their mothers and fathers. The comparison group consists of 10 infants healthy at birth, submitted at the surgery unit, matched for age and gender, and their parents. GHQ and STAI assessing parent well being, depression and anxiety were used. Registration of medical data was done prospectively from first admission. The dyadic profiles of the two groups on the CARE-index will be compared with those on the PCERA.

• Åvitsland, Tone Lise; Kristensen, Charlotte; Mala, Tom; Bjørnland, Kristin & Emblem, Ragnhild (2005). Percutaneous endoscopic gastrostomy (PEG) in children – a safe technique with major symptom relief and high parental satisfaction. Full text in Research Archive
• Emblem, Ragnhild; Mørkrid, Lars & Bjørnland, Kristin (2005). Anal endosonography in evaluation of results after surgery for anorectal malformations. Full text in Research Archive
• Bjørnland, Kristin; Monclair, Tom & Emblem, Ragnhild (2005). Roux-Y-jejunostomi hos barn. Full text in Research Archive

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