Publications
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Jarøy, Emilie Gimnes; Lundar, Live; Risa, Gabriel T.; Farstad, Inger Nina; Aksnes, Gunnar & Emblem, Ragnhild
[Show all 7 contributors for this article]
(2026).
Prognostic evaluation of boys with posterior urethral valves using a recursive feature elimination machine learning framework.
Frontiers in Pediatrics.
14.
doi:
10.3389/fped.2026.1906615.
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Objective To improve prognostic prediction and identify key predictors of renal and bladder outcomes in boys with posterior urethral valves (PUV) using machine learning (ML). Study design Single center study of boys with PUV. A bespoke ML framework incorporating recursive feature elimination, supervised learning models, and 5-fold cross validation was developed for prognostic prediction and identification of key features. Results Patients diagnosed after one year of age ( n = 22, late diagnosis group) had normal renal function at last follow up. Renal outcome analysis was therefore focused on the 83 patients diagnosed before one year of age (early diagnosis group), of whom 22% (18/83) developed chronic kidney disease (CKD) stage 3–5. Eighty of 105 patients were explored in the bladder outcome analysis. Nadir creatinine was the strongest prognostic feature for renal function. Among features known shortly after diagnosis, the most important were baseline creatinine followed by renal dysplasia. Among tested ML models, random forest classification performed the strongest, both at 1 year of age (0.96 PR-AUC) and shortly after diagnosis (0.73 PR-AUC). Across all features combinations, unregularized logistic regression consistently demonstrated the lowest predictive performance. Bladder dysfunction was observed in 69% (55/80) of boys. However, using our ML framework, the available features did not allow reliable prediction of this outcome (around 0.82 PR-AUC against the 0.69 baseline). Conclusion This study demonstrates that a recursive feature elimination ML framework can reliably identify the most important predictors and predict long-term renal function in boys with PUV. Baseline creatinine and renal dysplasia were identified as strong predictors and can inform parental guidance shortly after diagnosis. As expected, nadir creatinine was identified as the most powerful predictor. This study functions as a proof of concept demonstrating how ML methods can provide robust analysis of small datasets, an approach that may be valuable to other rare disease-research settings. Importantly, all models were developed using data from a single-center cohort and should undergo external validation to demonstrate generalizability.
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Møinichen, Unn Inger; Mikkelsen, Audun; Jensen, Unn; Birketvedt, Kjersti; Mørkrid, Lars & IJsselstijn, Hanneke
[Show all 7 contributors for this article]
(2025).
Longitudinal assessments of motor performance and musculoskeletal abnormalities in preschool children with esophageal atresia.
Early Human Development.
ISSN 0378-3782.
206.
doi:
10.1016/j.earlhumdev.2025.106273.
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Background
Children with esophageal atresia (EA) may have impaired motor performance and musculoskeletal abnormalities, but when and in whom these abnormalities develop is still unknown.
Aims
To study motor performance and musculoskeletal abnormalities from infancy to pre-school age, and to assess risk factors for poor motor performance at 24 and 48 months.
Study design
Prospective cohort study at 12, 24, and 48 months.
Subjects
Forty-six children with EA.
Outcome measures
Total and subtest scores and percentile ranks describing motor skills were obtained by using the Alberta Infant Motor Scale (AIMS) at 12 months, Peabody Developmental Motor Scale, Second Edition (PDMS-2) at 24 months, and Motor Assessment Battery for Children, Second Edition (MABC-2) at 48 months. Muscle strength was measured by Grippit, and musculoskeletal abnormalities were clinically evaluated according to a standardized protocol.
Results
The total median z-scores for AIMS, PDMS-2, and MABC-2 at group level were −0.571, −0.903, and −0.994 respectively, all significantly lower than in reference populations (p < 0.001). The decrease in motor skills between 12 and 48 months may have biological importance and was significantly more frequent in patients with more neonatal morbidity, anastomotic complications, and reduced muscle strength. The number of patients with musculoskeletal abnormalities increased from 11 % to 59 % between 24 and 48 months, but was not related to motor performance.
Conclusions
Motor performance was low from infancy, reduced longitudinally, and related to neonatal morbidity in children with EA. Musculoskeletal abnormalities increased throughout childhood, but were not related to motor performance.
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Birketvedt, Kjersti; Mikkelsen, Audun; Hanssen, Ragnhild; Henriksen, Christine & Emblem, Ragnhild
(2024).
Feeding difficulties, food intake, and growth in children with esophageal atresia.
JPGN repost.
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Gulseth, Eirik; Urdal, Andreas Martin; Andersen, Marit Helen; Falk, Ragnhild Sørum; Aksnes, Gunnar & Emblem, Ragnhild
[Show all 8 contributors for this article]
(2024).
Mental health and health-related quality of life in adolescents surgically treated for hypospadias in childhood.
Journal of Pediatric Urology.
ISSN 1477-5131.
doi:
10.1016/j.jpurol.2024.09.031.
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Background There is limited research and conflicting results on the mental health and health-related quality of life of individuals surgically treated for hypospadias in childhood. Furthermore, the significance of patient-reported outcomes (PRO) in hypospadias is growing. More research is necessary on these topics, particularly in adolescents. Objective We aimed to compare mental health, health-related quality of life, body satisfaction, self-esteem, penile appearance, and sexual function outcomes in 16-year-old adolescents who had surgery for hypospadias in childhood with a healthy comparison group. Study design The study involved 16-year-old adolescents who had surgery for hypospadias in one Norwegian hospital. An age-matched comparison group of healthy adolescents was previously recruited. The study assessed self-reported outcomes on mental health using the Strengths and Difficulties Questionnaire, health-related quality of life using the Pediatric Quality of Life Inventory, body satisfaction and self-esteem using the Self-Perception Profile for Adolescents, and genital perception and sexual function using the Pediatric Penile Perception Score and a non-validated structured interview. Results In total, 117 adolescents operated for hypospadias and 61 healthy adolescents were included. The outcomes for mental health and health-related quality of life were not statistically different between groups. However, 18 (16%) hypospadias patients were classified as cases/borderline on mental health outcomes, compared to 2 (3%) in the comparison group (p = 0.01). Patients classified as cases/borderline on mental health reported lower health-related quality of life, self-esteem, and more stressful life events. Self-reported penile appearance and sexual function were comparable between groups, however the proximal hypospadias group displayed lower satisfaction. Discussion Although the present study had generally positive outcomes, a significant finding was that a higher number of adolescents who had previously undergone hypospadias surgery during childhood were classified as cases or borderline cases with respect to mental health issues. Hypospadias surgery in childhood may pose challenges for some patients during adolescence, particularly in the proximal group. Regular monitoring by healthcare professionals is crucial in providing necessary support. A limitation is the small size of the subgroups. Conclusion Most patients report good mental health, quality of life, and self-esteem even though patients with hypospadias report more mental health issues than the comparison group. Proximal hypospadias were less satisfied with penile appearance and sexual function. However, due to the small sample size, conclusions about this group should be treated cautiously. Assessing self-reported outcomes in follow-ups is important to identify adolescents who had hypospadias surgery and are at risk for reduced mental health.
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Jarøy, Emilie Gimnes; Risa, Gabriel T.; Farstad, Inger Nina; Emblem, Ragnhild & Ougland, Rune
(2024).
A recall-optimised machine learning framework for small data improves risk stratification for Hirschsprung's disease.
Informatics in Medicine Unlocked (IMU).
48:101530,
p. 1–12.
doi:
10.1016/j.imu.2024.101530.
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Objective To improve the selection of patients with suspected Hirschsprung's disease for rectal biopsy with a recall-optimised machine learning framework that strongly penalises missed diagnoses, identify the most important clinical features, and investigate if this methodology is superior to the current practice of conventional logistic regression analysis. Study design The study data comprised the medical records of 178 children older than one month who underwent a rectal biopsy for the evaluation of Hirschsprung's disease. Each medical record contained the clinical features recorded before the rectal biopsy and the biopsy result. However, only 20 of the 178 children were diagnosed with Hirschsprung's disease. Thus, as is frequently the case for rare diseases, the dataset was small and imbalanced. We present a machine learning framework that, based on these data, produces a champion machine learning model for predicting the presence of Hirschsprung's disease in patients. Notably, the machine learning framework is recall-optimised, i.e., it strongly penalises missed diagnoses. This is achieved using a combination of synthetic minority over-sampling techniques, Bayesian hyper-parameter optimisation, and bootstrapping-based prediction thresholding for a competing set of models comprised of a logistic regression model, a random forest classifier, and a gradient-boosted classifier. Finally, the machine learning framework evaluates the performance of these three competing models and conventional logistic regression with 5-fold stratified cross-validation using an 80:20 train-test split. Model performance is ranked by the average recall across the cross-validation folds. The model with the highest recall is selected as the champion. The model with the highest accuracy is chosen in case of a tie. Results This study revealed that about 35% of our cohort's children without Hirschsprung's disease could have been spared a rectal biopsy while incurring no missed diagnoses using our machine learning framework. Given our aim of avoiding missed diagnosis, the champion model was vastly superior to conventional logistic regression, i.e., the status quo, which missed 40% of HD-positive cases. Moreover, the champion model pointed to a new hierarchy for the importance of clinical features associated with Hirschsprung's disease. Among all features, “gross abdominal distention” was the most important. Conclusion There is considerable scope for a stricter selection when referring constipated children for a rectal biopsy to diagnose or exclude Hirschsprung's disease. This study demonstrates that a recall-optimised pipeline based on classical supervised machine learning is superior to the conventional statistical and heuristic approaches used today, also for small and imbalanced datasets. This finding opens a path to better care for patients with rare diseases while alleviating pressures on healthcare systems.
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Arntzen, Trine; Mikkelsen, Audun; Emblem, Ragnhild; Lai, Xiaoran & Haugen, Guttorm Nils
(2023).
Prenatal Diagnosis of Esophageal Atresia – Performance and Consequences.
Journal of Pediatric Surgery.
ISSN 0022-3468.
58(11),
p. 2075–2080.
doi:
10.1016/j.jpedsurg.2023.05.015.
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Background Prenatal diagnosis of congenital malformations is considered favorable. Esophageal atresia (EA) is prenatally detected in 10–40% of patients. The aims of our study were to assess factors influencing the prenatal detection rate and to study the outcome in EA patients with and without prenatal diagnosis. Method We included 136 patients in two time periods, group 1 (1996–2002, n = 68) and group 2 (2014–2020, n = 68). We registered clinical variables; prenatal signs, perinatal and postnatal outcome from the electronic patient record. Results Twenty-five patients (18%) had a prenatal diagnosis of EA, significantly more during 2014–2020 (28%), than during 1996–2002 (9%). Patients with EA type A or B and with associated anomalies had increased likelihood of prenatal diagnosis, odds ratio (OR) 9.00 (1.99–40.69) and 3.53 (1.24–10.06), respectively. Among the 25 patients with prenatal diagnosis all had polyhydramnios and 16 had small/absent stomach. Prenatally diagnosed patients arrived significantly earlier at the surgical unit (median 2 h (2 h-1 days) vs 21 h (2 h-1275 days)), had more delayed primary anastomosis (OR 8.80 (2.68–28.92)) and anastomotic stricture (OR 3.11 (1.20–8.04)), longer length of stay (median 62 days (11–212 days) vs 20 days (2–270 days)) and longer time on ventilator (median 5 days (1–25 days) vs 1.5 days (0.5–33 days)) compared to patients without prenatal diagnosis. In multivariate analysis prenatal diagnosis predicts length of stay. Conclusion Prenatally diagnosed EA patients have more; type A and B malformations, associated anomalies and neonatal morbidity. Consequences of the assumed benefits of prenatal diagnosis; opportunity of early arrival to surgical care and prenatal counselling, must be further studied.
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Gulseth, Eirik; Urdal, Andreas Martin; Andersen, Marit Helen; Falk, Ragnhild Sørum; Aksnes, Gunnar & Emblem, Ragnhild
[Show all 7 contributors for this article]
(2023).
Sexual well-being and penile appearance in adolescents operated for distal hypospadias in childhood.
Journal of Pediatric Urology.
ISSN 1477-5131.
19(3),
p. 293.el–293.e8.
doi:
10.1016/j.jpurol.2023.03.001.
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Background The importance of patient-reported outcomes (PRO) in hypospadias is increasing. However, more knowledge is needed concerning genital self-perception on appearance and function in adolescents. The complication rates for distal hypospadias is different from that for severe hypospadias, and expected outcomes related to sexual well-being and cosmetics may also differ. Objective To investigate 16-year-olds’ self-reported outcomes on penile appearance, sexual well-being, and voiding function in distal hypospadias, and compare with that of healthy male adolescents and a surgeon's view. Study design Sixteen-year-old patients operated for distal hypospadias were included in this cross-sectional study and compared to a group of healthy adolescents. The assessment tools included the adolescents’ self-perception on genital appearance and function measured by Pediatric Penile Perception Score (PPPS) and their responses to a structured interview. We also included information on clinical data from the electronic medical records, together with a physical examination and an uroflowmetry. Results Seventy patients and 61 healthy adolescents participated. Patients and the comparison group reported no differences on sexual well-being. The patients were satisfied with penile appearance, however their overall PPPS was significantly lower (8.9), compared to the comparison group (9.6, p = 0.03). Thirty-nine percent of patients had complications leading to re-interventions and reported lower scores on genital self-perception on appearance and function compared to those who had not re-interventions. Voiding function was normal. The surgeon's score on appearance was comparable to the patients’ score. Discussion A key finding in our study is the patients’ high satisfaction on sexual well-being, which was similar to healthy adolescents. The patients were also satisfied with penile appearance but scored significantly lower than the comparison group. Surgeons and patients had comparable scores on appearance; however, they seemed to emphasize different aspects of appearance. Our results on penile appearance and sexual well-being are comparable to those of other studies on distal hypospadias. In our study, re-interventions were associated with more negative genital self-perception on appearance and function, similar to findings in other studies. Conclusion Our results show overall positive satisfaction on sexual well-being, voiding function and penile appearance despite less satisfaction on penile appearance when compared with the comparison group. Satisfaction was reported to be good also in patients experiencing re-interventions.
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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.
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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 < 0.001) and OF (97% vs. 19%, p < 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
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Mikkelsen, Audun; Møinichen, Unn Inger; Reims, Henrik Mikael; Grzyb, Krzysztof; Aabakken, Lars & Mørkrid, Lars
[Show all 8 contributors for this article]
(2022).
Clinical variables as indicative factors for endoscopy in adolescents with esophageal atresia.
Journal of Pediatric Surgery.
ISSN 0022-3468.
00(0),
p. 1–9.
doi:
10.1016/j.jpedsurg.2022.10.003.
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Introduction
Gastro-esophageal reflux disease (GERD) occurs frequently in patients operated for esophageal atresia (EA). Longstanding esophagitis may lead to dysphagia, strictures, columnar metaplasia, and dysplasia with an increased risk of adenocarcinoma. Are clinical factors and non-invasive assessments reliable indicators for follow-up with endoscopy?
Material and method
A follow-up study with inclusion of EA adolescents in Norway born between 1996 and 2002 was conducted. Clinical assessment with pH monitoring, endoscopy with biopsies, along with interviews and questionnaires regarding gastroesophageal reflux disease (GERD) and dysphagia were performed.
Results
We examined 68 EA adolescents. 62% reported GERD by interview, 22% by questionnaire. 85% reported dysphagia by interview, 71% by questionnaire. 24-hour pH monitoring detected pathological reflux index (RI) (>7%) in 7/59 (12%). By endoscopy with biopsy 62 (92%) had histologic esophagitis, of whom 3 (4%) had severe esophagitis. Gastric metaplasia was diagnosed in twelve (18%) adolescents, intestinal metaplasia in only one (1.5%). None had dysplasia or carcinoma. Dysphagia and GERD were statistically correlated to esophagitis and metaplasia, but none of the questionnaires or interviews alone were good screening instruments with high combined sensitivity and specificity. A compound variable made by simply taking the mean of rescaled RI and dysphagia by interview showed to be the best predictor of metaplasia (85% sensitivity, 67% specificity).
Conclusion
The questionnaires and interviews used in the present study were not good screening instruments alone. However, combining dysphagia score by interview and RI may be helpful in assessing which patients need endoscopy with biopsy at each individual follow-up examination.
Level of Evidence
Level II prognostic study
Keywords
Esophageal atresia
Gastroesophageal reflux
Dysphagia
Metaplasia
Endoscopy
Columnar metaplasia
ROC-curve
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Møinichen, Unn Inger; Mikkelsen, Audun; Gunderson, Ragnhild B.; Kibsgård, Thomas Johan; Mørkrid, Lars & IJsselstijn, Hanneke
[Show all 7 contributors for this article]
(2022).
New insights in the prevalence of scoliosis and musculoskeletal asymmetries in adolescents with esophageal atresia.
Journal of Pediatric Surgery.
ISSN 0022-3468.
p. 1–8.
doi:
10.1016/j.jpedsurg.2022.10.002.
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Background
Increased risk of scoliosis and musculoskeletal abnormalities in adolescents with esophageal atresia (EA) is reported, but the impact of these abnormalities on physical fitness and motor skills are not known.
Methods
Scoliosis was assessed radiographically and shoulder and chest abnormalities by a standardized protocol. Physical fitness was evaluated with Grippit, Six-minute walk test, and International Physical Activity Questionnaire and motor skills by Motor Assessment Battery for Children.
Results
Sixty-seven EA adolescents median 16 (13–20) years participated. The prevalence of significant scoliosis (≥ 20º) was 12% (8/67) whereas 22% (15/67) had mild scoliosis (10–19º). Vertebral anomalies occurred in 18/67 (27%), eight of them (44%) had scoliosis. The majority of adolescents (15/23) with scoliosis did not have vertebral anomalies. Musculoskeletal abnormalities were detected in 22–78%. Balance problems occurred three times more frequently than expected (44% vs. 15%, p = 0.004). Submaximal exercise capacity was significantly reduced compared to reference values (p < 0.001). Scoliosis ≥ 20º was related to reduced physical activity (p = 0.008), and musculoskeletal abnormalities to reduced physical activity and impaired motor skills (p = 0.042 and p < 0.038, respectively).
Conclusions
Significant scoliosis was diagnosed in 12% of the EA adolescents and related to reduced physical activity. Musculoskeletal abnormalities identified in more than half of the patients, were related to reduced physical activity and impaired motor skills, and exercise capacity was significantly below reference group. EA patients with and without vertebral anomalies need health-promoting guidance to prevent impaired motor skills and consequences of reduced physical activity.
Level of evidence: Prognostic Study, Level II
Keywords
Scoliosis
Musculoskeletal abnormalities
Physical fitness
Motor skills
Esophageal atresia
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Jarøy, Emilie Gimnes; Emblem, Ragnhild; Reims, Henrik Mikael; Mai, The Tien; Risa, Gabriel T. & Ougland, Rune
(2021).
Evaluation of diagnostic factors used to refer children with constipation for rectal biopsies.
International Journal of Colorectal Disease.
ISSN 0179-1958.
37,
p. 597–605.
doi:
10.1007/s00384-021-04069-4.
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Purpose Children with constipation and suspected Hirschsprung’s disease are referred for rectal biopsy. Since this is an invasive procedure, appropriate indications should be applied to minimize the number of “unnecessary” biopsies. Methods We reviewed all constipated children who underwent a rectal biopsy to diagnose a possible Hirschsprung’s disease at a tertiary referral hospital over a 6-year period (2013–2018). We registered clinical and demographic factors in these children and conducted correlation and multivariate regression analysis to evaluate the relation between these factors and a diagnosis of Hirschsprung’s disease.
Results We identified 225 children, aged 0–17 years. In total, Hirschsprung’s disease was diagnosed in only 49/225 (22%). Among the 49 children with Hirschsprung’s disease, 29 (59%) were diagnosed in the neonatal period. Among girls, HD was confirmed in only 10/101 (10%) children, and only 1 of these 10 girls was older than 6 months at the time of the biopsy. The following factors correlated significantly with Hirschsprung’s disease diagnosis in children older than 1 month: “male sex”, “failure to thrive”, “gross abdominal distention plus vomiting” and “fulfils the Rome 4 criteria for functional constipation”. Conclusion In children referred for rectal biopsy, the factors most indicative of Hirschsprung’s disease were “male sex”, “failure to thrive”, “gross abdominal distention plus vomiting” and “fulfils the Rome 4 criteria for functional constipation”. Notably, the prevalence of Hirschsprung’s disease decreased with the increasing age of the children. Girls referred for a biopsy rarely had Hirschsprung’s disease, especially those older than 1 month.
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Birketvedt, Kjersti; Mikkelsen, Audun; Klingen, Louise Laigaard; Henriksen, Christine; Helland, Ingrid B & Emblem, Ragnhild
(2020).
Nutritional Status in Adolescents with Esophageal Atresia.
Journal of Pediatrics.
ISSN 0022-3476.
218,
p. 130–137.
doi:
10.1016/j.jpeds.2019.11.034.
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Objectives To examine factors that may affect nutritional status in adolescents with esophageal atresia. Study design Anthropometric measurements, blood samples, pH measuring, mapping of dysphagia with a modified Easting Assessment Test questionnaire, 4-day dietary record, and a semistructured interview about eating habits and nutrition counseling were performed in a cross-sectional cohort of adolescents with esophageal atresia. Results Out of 102 eligible patients, 68 (67%) participated. The median height-for-age Z score was −0.6 (−4.6 to 1.8). Ten (15%) were classified as stunted (height-for-age Z score <−2). Fourteen (21%) were overweight. More than two-thirds reported symptoms of dysphagia (Easting Assessment Test score ≥3) and avoided specific foods. Forty-eight (71%) completed the 4-day dietary record, which showed daily intake of energy below age-appropriate recommendations. One-third reported an energy intake below their estimated basal metabolic rate. Only 24% had received counselling from a dietitian. Conclusions Adolescents with a history of esophageal atresia have growth below reference values and energy intake below recommendations. Energy intake and its relation to stunting needs to be further studied in patients with esophageal atresia.
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Møinichen, Unn Inger; Mikkelsen, Audun; Faugli, Anne; Mørkrid, Lars; Ijsselstijn, Hanneke & Emblem, Ragnhild
(2020).
Impaired motor performance in adolescents with esophageal atresia.
Journal of Pediatric Surgery.
ISSN 0022-3468.
p. 1–6.
doi:
10.1016/j.jpedsurg.2020.11.026.
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Aims The study prospectively assessed motor development from infancy to adolescence in patients with esophageal atresia (EA). Methods At one year of age motor performance was evaluated with the Psychomotor Developmental Index (PDI) of the Bayley Scales of Infant Development, Second Edition (BSID-II), and as adolescents reevaluated with Motor Assessment Battery for Children, Second Edition (MABC-2). Associations to clinical factors were assessed. Results 23 EA patients were followed from infancy to adolescence. The median total PDI score in infancy was 102 (56–118) and the corresponding mean z-score was −0.006 (SD 0.995) and not significantly different from the reference values (p = 0.48). The median total MABC-2 score in adolescence was 75 (32–93) and the corresponding mean z-score −0.43 (SD 0.998) which is significantly below normal (p = 0.03). Children with impaired motor function in adolescence underwent significantly more rethoracotomies than those with normal motor performance (p = 0.037); whereas the two groups did not differ with respect to other clinical characteristics. Conclusion From infancy to adolescence the motor performance in the group of EA patients deteriorated from within normal range to significantly impaired compared to reference values. Interdisciplinary follow-up programs from infancy to adolescence with close monitoring for motor function is necessary to detect motor impairments.
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Helvig, Espen; Emblem, Ragnhild; Røkkum, Henrik & Ravn, Ingrid Helen
(2020).
Catheter-related bloodstream infections in infants who have undergone neonatal surgery.
Sykepleien Forskning.
ISSN 1890-2936.
p. 1–20.
doi:
10.4220/Sykepleienf.2020.79952.
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Background: Catheter-related bloodstream infections (CRBSI) represent a feared complication in neonates with surgically placed central venous catheters. Infections can be a tough experience for the infant and family in terms of pain, discomfort, complications, delayed infant-parent attachment and development and at worst, death. Registering treatment-related infections is an important part of quality assurance efforts, and few studies have dealt with nursing documentation of symptoms and signs of CRBSI. Objective: The objective of the study was to identify documentation practices and examine what symptoms and clinical signs registered nurses document in a group of patients with and without CRBSI who have undergone neonatal surgery. The aim was to identify and evaluate nursing documentation, thus contributing to greater knowledge about CRBSI and its prevention, and better treatment. The study focuses on the following research question: How do registered nurses document clinical observations that raise suspicion of catheter-related bloodstream infections in infants who have undergone neonatal surgery? Method: We conducted a pilot study with a retrospective case control design using descriptive analyses. We used a self-developed assessment chart in order to gather data from written and electronic observation forms, charts and nursing documentation in the patient documentation systems DIPS and Metavision. The sample included five infants in the CRBSI group and ten in the control group. Results: Pulse and temperature were most frequently documented in both groups. Fever was documented in the case of three of the five infants in the CRBSI group while in the control group, fever was not documented. Clinical signs of infection were most frequently documented in the CRBSI group. Observations of the insertion site of the central venous catheter when changing dressings, and the child’s behaviour were most frequently documented in the control group. Conclusion: The documentation of fever is the symptom that most clearly distinguishes the CRBSI group from the control group. The total number of documented registrations of clinical signs of infection is higher in the CRBSI group than in the control group. This may indicate that fever is the factor that determines which clinical signs of infection are observed and documented in the ensuing patient care pathway. A number of observations were not documented in either of the groups and what was documented can appear to be random and unsystematic.
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Mikkelsen, Audun; Boye, Birgitte; Diseth, Trond H; Malt, Ulrik Fredrik; Mørkrid, Lars & Ijsselstijn, Hanneke
[Show all 7 contributors for this article]
(2020).
Traumatic stress, mental health and quality of life in adolescents with esophageal atresia.
Journal of Pediatric Surgery.
ISSN 0022-3468.
15(26),
p. 1–9.
doi:
10.1016/j.jpedsurg.2020.10.029.
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Introduction We aimed to investigate QoL in EA patients in relation to comparison groups and to clinical factors including experienced traumatic stress. Material and Methods Adolescents with EA in Norway born between 1996 and 2002 were included. Clinical assessment and patient's characteristics were collected. Quality of life (PedsQL), traumatic stress (IES-13) and mental health (SDQ-20) were compared to groups of healthy controls, children with acute lymphoblastic leukemia (ALL) and kidney transplanted children (TX). Results 68 EA adolescents participated. Total scores for PedsQL were not different from the healthy group and ALL patients, but significantly better than the TX patients. The subscale for physical performance was significantly lower than in healthy adolescents, and nine (17%) patients had scores ≤70 indicating reduced health status. Five EA adolescents (12%) had mental health scores suggesting a psychiatric disorder, and six (9%) reported high traumatic stress scores with a significant correlation to days on ventilator in the neonatal period. The strongest predictors for quality of life among EA adolescents were self-reported mental health, posttraumatic stress and GERD symptoms. Conclusion Scores for Quality of life in the EA group are good except for subscale for physical performance. Symptoms of posttraumatic stress, mental strain and gastroesophageal reflux are predictors of reduced QoL.
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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.
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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.
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Lundar, Live; Aksnes, Gunnar; Mørkrid, Lars & Emblem, Ragnhild
(2019).
Prenatal extravasation of urine seems to preserve renal function in boys with posterior urethral valves.
Journal of Pediatric Urology.
ISSN 1477-5131.
p. 1–7.
doi:
10.1016/j.jpurol.2019.02.010.
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Jarøy, Emilie Gimnes; Jiménez, Lourdes Patricia Acosta; Hotta, Ryo; Goldstein, Allan M.; Emblem, Ragnhild & Klungland, Arne
[Show all 7 contributors for this article]
(2019).
"Too much guts and not enough brains": (epi)genetic mechanisms and future therapies of Hirschsprung disease - a review.
Clinical Epigenetics.
11.
doi:
10.1186/s13148-019-0718-x.
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Hirschsprung disease is a neurocristopathy, characterized by aganglionosis in the distal bowel. It is caused by failure of the enteric nervous system progenitors to migrate, proliferate, and differentiate in the gut. Development of an enteric nervous system is a tightly regulated process. Both the neural crest cells and the surrounding environment are regulated by different genes, signaling pathways, and morphogens. For this process to be successful, the timing of gene expression is crucial. Hence, alterations in expression of genes specific for the enteric nervous system may contribute to the pathogenesis of Hirschsprung’s disease. Several epigenetic mechanisms contribute to regulate gene expression, such as modifications of DNA and RNA, histone modifications, and microRNAs. Here, we review the current knowledge of epigenetic and epitranscriptomic regulation in the development of the enteric nervous system and its potential significance for the pathogenesis of Hirschsprung’s disease. We also discuss possible future therapies and how targeting epigenetic and epitranscriptomic mechanisms may open new avenues for novel treatment.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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Knatten, Charlotte Kristensen; Emblem, Ragnhild & Bjørnland, Kristin
(2013).
Kirurgisk behandling av gastroøsofageal refluks hos barn.
Kirurgen.
ISSN 1504-8888.
2,
p. 88–90.
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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.
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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.
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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.
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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.
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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.
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Pripp, Are Hugo; Skreden, Marianne; Skari, Hans; Malt, Ulrik Fredrik & Emblem, Ragnhild
(2010).
Underlying correlation structures of parental stress, general health and anxiety.
Scandinavian Journal of Psychology.
ISSN 0036-5564.
51(6),
p. 473–479.
doi:
10.1111/j.1467-9450.2010.00841.x.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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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Scholz, Tim; Aabakken, Lars; Østensen, Anniken Bjørnstad; Emblem, Ragnhild & Jermstad, T.
(2003).
Capsule Endoscopy Is Feasible in Small Children.
Endoscopy.
ISSN 0013-726X.
p. 798–798.
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Faugli, Anne; Bjørnland, Kristin; Skari, Hans & Emblem, Ragnhild
(2002).
Foreldre til barn med oesophagusatresi - viktig kilde til kunnskap.
Tidsskrift for Den norske legeforening (Tidsskriftet).
ISSN 0029-2001.
122(18),
p. 1768–1770.
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Bakgrunn. Flere oppfølgingsundersøkelser av barn med øsofagusatresi har vist at spiseproblemer og respiratoriske plager de første leveårene er vanlig. Imidlertid finnes det få gode psykososiale oppfølgingsundersøkelser. Foreldre til barn med øsofagusatresi har kunnskap om mange aspekter ved øsofagusatresi. I forarbeidet til en større planlagt oppfølgingsundersøkelse av barn og ungdom med øsofagusatresi, ønsket vi å bruke foreldres kunnskap.
Materiale og metoder. Vi spurte 29 foreldre som deltok på et kurs i regi av Norsk forening for øsofagusatresi om de ville delta i en spørreskjemaundersøkelse om deres erfaringer og barnas somatiske og psykososiale funksjon.
Resultater. Foreldre til 25 barn (86%) med median alder fire år (8 måneder-16 år) svarte. Betydelige respiratoriske plager slik som kronisk hoste (17/25), luftveisinfeksjoner(12/25) og hvesing, surkling eller tungpustenhet (19/25), svelgeproblemer (23/25) og at sykdommen hemmet barna i sosiale sammenhenger (11/23), spesielt i situasjoner knyttet til måltider, ble rapportert.
Fortolkning. Selv om vi tar forbehold om generaliserbarheten av funnene på grunn av det selekterte materialet, rapporterte foreldrene overraskende høy hyppighet av kroniske respiratoriske plager, måltidsrelaterte problemer og psykososiale problemer.
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Skari, Hans; Bjørnland, Kristin; Frenckner, Bjørn; Friberg, Lars Gøran; Heikkinen, Marja & Hurme, Timo
[Show all 14 contributors for this article]
(2002).
Congenital diaphragmatic hernia in Scandinavia 1995-98 -predictors of mortality.
Journal of Pediatric Surgery.
ISSN 0022-3468.
37(9),
p. 1269–1275.
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Background: There is a lack of large contemporary studies on the management of congenital diaphragmatic hernia (CDH), and the prediction of mortality remains difficult. The aim of the study was to investigate the influence of perinatal factors on mortality in a contemporary multicenter study.
Methods: We conducted a retrospective multicenter cohort study. Twelve of 13 Scandinavian pediatric surgical centers participated in the study. During a 4-year period (1995-98) 195 children with CDH were included. The main endpoints were hospital mortality and total mortality (before 2001). Bivariate and multivariate survival analyses were performed using Kaplan-Meier plots, Log-rank test and Cox regression.
Results: Overall hospital mortality was 30%. Among 168 neonates with symptoms within 24 hours (early presenters) 35% died prior to discharge. In fact, all 61 deaths occurred in 157 neonates with symptoms within the first two hours of life. Among early presenters, 27% were diagnosed by prenatal ultrasound, 26% were delivered by Cesarean section, and 21% had associated major malformations. Bivariate analysis of early presenters showed increased risk of death in neonates with prenatal diagnosis, associated anomalies, right-sided diaphragmatic hernia (RCDH), low 1-min and 5-min Apgar, low birthweight, short gestational age, and Cesarean delivery. Neonates with prenatal diagnosis were characterized by significantly lower Apgar scores, lower birthweight, and increased frequency of associated anomalies than those diagnosed after birth. Multivariate analysis revealed that prenatal diagnosis (p=0.004), 1-min Apgar (p=0.001), and RCDH (p=0.042) were independent predictors of total mortality.
Conclusion: In a series of 195 CDH patients, all 61 deaths occurred in the 157 neonates presenting with symptoms within the first two hours of life. Prenatal diagnosis, 1-min Apgar and RCDH were significant independent predictors of total mortality.
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Skari, Hans; Skreden, Marianne; Malt, Ulrik Fredrik; Björk, Merethe Dalholt; Østensen, Anniken Bjørnstad & Egeland, Thore
[Show all 7 contributors for this article]
(2002).
Comparative levels of psychological distress, stress symptoms, depression and anxiety after childbirth--a prospective population-based study of mothers and fathers.
British Journal of Obstetrics and Gynaecology.
ISSN 0306-5456.
109(10),
p. 1154–1163.
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OBJECTIVE: To compare maternal and paternal psychological responses following birth of a healthy baby; and to explore predictors of parental psychological distress. DESIGN: A prospective, longitudinal, population-based cohort study. SETTING: A Norwegian district general hospital. POPULATION: One hundred and twenty-seven mothers and 122 fathers were included. METHODS: Eligible consenting parents were enrolled. The assessments, which were performed zero to four days after birth, at six weeks and at six months, included General Health Questionnaire-28 (GHQ-28), State Anxiety Inventory and Impact of Event Scale. The response rates at the three occasions were 97%, 85% and 71%. MAIN OUTCOME MEASURES: Symptoms of intrusion, avoidance, arousal and psychological distress including anxiety, depression, social dysfunction and somatisation. RESULTS: Clinically important psychological distress was reported by 37% of the mothers and 13% of the fathers a few days after childbirth (P < 0.001). Severe intrusive stress symptoms were reported by 9% and 2% of mothers and fathers, respectively (P = 0.002). Level of intrusive stress was the outcome that differed most clearly between mothers and fathers at all three points of time. Being a single parent, multiparity and a previous traumatic birth were significant independent predictors of acute maternal psychological distress. After six weeks and six months, the level of psychological distress including symptoms of depression fell to levels found in the general population. CONCLUSIONS: Childbirth does not seem to trigger long term psychological distress in most parents. Clinically important psychological distress occurred more frequently in mothers than in fathers. Acute maternal psychological distress was predicted by being a single parent, being multiparous, and having a previous traumatic birth.
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Skari, Hans; Skreden, Marianne; Malt, Ulrik Fredrik; Björk, Merethe Dalholt; Østensen, Anniken Bjørnstad & Egeland, Thore
[Show all 7 contributors for this article]
(2002).
Comparative levels of psychological distress, stress symptoms, depression and anxiety after childbirth--a prospective population-based study of mothers and fathers.
British Journal of Obstetrics and Gynaecology.
ISSN 0306-5456.
109(10),
p. 1154–1163.
doi:
10.1111/j.1471-0528.2002.00468.x.
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OBJECTIVE: To compare maternal and paternal psychological responses following birth of a healthy baby; and to explore predictors of parental psychological distress. DESIGN: A prospective, longitudinal, population-based cohort study. SETTING: A Norwegian district general hospital. POPULATION: One hundred and twenty-seven mothers and 122 fathers were included. METHODS: Eligible consenting parents were enrolled. The assessments, which were performed zero to four days after birth, at six weeks and at six months, included General Health Questionnaire-28 (GHQ-28), State Anxiety Inventory and Impact of Event Scale. The response rates at the three occasions were 97%, 85% and 71%. MAIN OUTCOME MEASURES: Symptoms of intrusion, avoidance, arousal and psychological distress including anxiety, depression, social dysfunction and somatisation. RESULTS: Clinically important psychological distress was reported by 37% of the mothers and 13% of the fathers a few days after childbirth (P < 0.001). Severe intrusive stress symptoms were reported by 9% and 2% of mothers and fathers, respectively (P = 0.002). Level of intrusive stress was the outcome that differed most clearly between mothers and fathers at all three points of time. Being a single parent, multiparity and a previous traumatic birth were significant independent predictors of acute maternal psychological distress. After six weeks and six months, the level of psychological distress including symptoms of depression fell to levels found in the general population. CONCLUSIONS: Childbirth does not seem to trigger long term psychological distress in most parents. Clinically important psychological distress occurred more frequently in mothers than in fathers. Acute maternal psychological distress was predicted by being a single parent, being multiparous, and having a previous traumatic birth.
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Røise, Olav; Fosse, Erik Torgeir; Aukrust, Pål; Emblem, Ragnhild; Bjøro, Kristian & Johansen, Stian Øby
[Show all 9 contributors for this article]
(2025).
Ny lov om helseforskning kan true sikkerheten til pasientene.
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Forskning er viktig for at vi skal kunne gi best mulig behandling. Men forslaget til ny helseforskningslov kan bidra til dårligere kvalitet på forskningen og svekket pasientsikkerhet.
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Jarøy, Emilie Gimnes; Risa, Gabriel T.; Farstad, Inger Nina; Emblem, Ragnhild & Ougland, Rune
(2024).
Corrigendum to “A recall-optimised machine learning framework for small data improves risk stratification for Hirschsprung's disease” [Inform. Med. Unlocked 48 (2024), 101530] (Informatics in Medicine Unlocked (2024) 48, (S2352914824000868), (10.1016/j.imu.2024.101530)).
Informatics in Medicine Unlocked (IMU).
49.
doi:
10.1016/j.imu.2024.101546.
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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.
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Medhus, Asle Wilhelm; Bjørnland, Kristin; Emblem, Ragnhild; Bondi, Johan Fridtjof & Husebye, Einar
(2004).
TYNNTARMSMOTILITET I FASTE HOS PASIENTER OPERERT FOR HIRSCHSPRUNGS SYKDOM SOM BARN.
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Bjørnland, Kristin; Aabakken, Lars; Hopp, Einar & Emblem, Ragnhild
(2003).
Konservativ behandling av spontan galleveisperforasjon.
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Bjørnland, Kristin; Aabakken, Lars; Hopp, Einar & Emblem, Ragnhild
(2003).
Konservativ behandling av spontan galleperforasjon.
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Skari, Hans; Bjørnland, Kristin; Frenckner, Bjørn; Friberg, Lars Gøran; Heikkinen, Marja & Hurme, Timo
[Show all 16 contributors for this article]
(2002).
CONGENITAL DIAPHRAGMATIC HERNIA (CDH) - CURRENT PRACTICE AND MORTALITY IN SCANDINAVIA.
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Background: Over the last decades the treatment of patients with CDH has changed significantly. The purpose of the study was twofold: to investigate current management strategies in Scandinavia and to explore the relationship between perinatal factors and mortality in a large contemporary sample.
Methods: Thirteen pediatric surgical centers covering a population of about 22 millions were invited. The first questionnaire consisted of 28 items covering current management and all 13 centres responeded. The second questionnaire was used to assess perinatal risk factors and postnatal mortality (1995-98). Twelve of 13 centres participated in this retrospective multicenter study, and 195 children with CDH were included. Bivariate and multivariate survival analysis was performed.
Results:
Current practice: Following prenatal diagnosis, vaginal delivery was preferred at 9 centres and Caesarean section at 4 centres. Delivery was attempted close to term (week 38-40). Maternal steroids were given at 6/13 centres following prenatal diagnosis. Nine centres recommended the use of ECMO, and 4 of these 9 centres had to refer the patients to another hospital for ECMO treatment. All but one centre preferred delayed (>24 h) surgery. Determination of time for operation was mainly based on a clinically stable patient (11/13) and on Doppler echocardiography ruling out pulmonary hypertension (6/13). Long-term follow-up was routinely arranged at only 3 pediatric surgical centers.
Multicenter study: Overall hospital mortality in 195 CDH patients was 30%. Prenatal diagnosis of CDH was made in 27%. Among 168 neonates with symptoms within 24 hours (early presenters) 35% died prior to discharge. In fact, all 61 deaths occurred in 157 neonates with symptoms within the first two hours of life. Among early presenters 26% were delivered by Cesarean section, and 21% had associated major malformations. Bivariate analysis of early presenters showed increased risk of death in neonates with prenatal diagnosis, associated anomalies, right-sided diaphragmatic hernia (RCDH), low 1-min and 5-min Apgar, low birthweight, short gestational age, and Cesarean delivery. Multivariate analysis revealed that only prenatal diagnosis (p=0.004), 1-min Apgar (p=0.001), and RCDH (p=0.042) were independent predictors of mortality.
Conclusions:
The study demonstrates surprising differences in management strategies among the Scandinavian centres in the use of maternal steroids, mode of delivery and operative techniques. In a series of 195 CDH patients, all 61 deaths occurred in the 157 neonates presenting with symptoms within the first two hours of life. Prenatal diagnosis, 1-min Apgar and RCDH were significant independent predictors of mortality.
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Skari, Hans; Malt, Ulrik Fredrik; Bjørnland, Kristin; Rø, Johs S.; Haugen, Guttorm & Emblem, Ragnhild
(2002).
KAN PRENATAL BARNEKIRURGISK INFORMASJON REDUSERE MOR OG FARS PSYKOLOGISKE STRESS ETTER FØDSEL AV BARN MED ALVORLIG MEDFØDT MISDANNELSE ?
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Bakgrunn og mål: Når alvorlige misdannelser avdekkes hos fosteret, øker mor og fars angstnivå. Det er vist at prenatal informasjon ved barnekirurg kan redusere foreldres angstnivå i svangerskapet. Hvorvidt reduksjon i angstnivå vedvarer etter fødsel har ikke blitt undersøkt. Hensikten med undersøkelsen var å sammenligne postnatal psykologisk reaksjon hos foreldre som var blitt informert prenatalt av barnekirurg med de som ikke hadde fått slik informasjon.
Materiale og metode: I perioden 1997-1999 fikk 47% (98/209) av foreldrene informasjon om misdannelsen prenatalt. 35 foreldre ble kun informert av obstetriker (1997). 52 foreldre ble informert av både barnekirurg og obstetriker (1998-99). Elleve foreldre som fikk prenatal informasjon svært nær fødsel og som kun ble informert av lokal obstetriker, ble ekskludert fra studien. Psykologisk reaksjon ble målt med Goldberg General Health Questionnaire-28 (GHQ-28), Spielberger State Trait Anxiety Inventory (STAI-X1) og Impact of Event Scale (IES). Spørreskjemaene ble besvart umiddelbart etter fødsel, etter 6 uker og 6 måneder.
Resultater: Median varighet av svangerskapet ved informasjon fra barnekirurg var 31 uker (range 19-37). Neonatal mortalitet for gruppen med prenatal diagnose var 20%. Få dager etter fødsel fant vi relativt høyt stressnivå, men ingen signifikante forskjeller mellom de som var informert av barnekirurg og de som kun var informert av obstetriker. Seks uker etter fødsel fant vi signifikant lavere GHQ angst score (0.68 vs. 1.07, p=0.015), GHQ sosial dysfunksjon (0.76 vs. 1.09, p=0.022), GHQ somatisering (0.64 vs. 0.92, p=0.049), og GHQ total score som indikerer generelt psykologisk stress (15.7 vs. 23.0, p=0.026) i gruppen som ble informert av barnekirurg. Tilsvarende, fant vi signifikant lavere stress nivå (IES intrusjon 5.9 vs. 11.9, p=0.006 og IES unnvikelse 2.5 vs. 5.4, p=0.018) i gruppen som ble informert av barnekirurg.. Etter seks måneder fant vi lave score i begge grupper, og ingen signifikante forskjeller mellom dem.
Konklusjon: Studien viste en gevinst av prenatal barnekirurgisk informasjon i form av lavere psykologisk stress 6 uker etter fødsel av et barn med medfødt misdannelse.
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Skreden, Marianne; Björk, Merethe Dalholt; Skari, Hans & Emblem, Ragnhild
(2002).
Ultrasound in pregnancy in a county in Southern Norway.
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Skari, Hans; Malt, Ulrik Fredrik; Bjørnland, Kristin; Rø, Johs S.; Haugen, Guttorm & Emblem, Ragnhild
(2002).
DOES A PRENATAL PAEDIATRIC SURGICAL CONSULTATION REDUCE POSTNATAL PARENTAL PSYCHOLOGICAL DISTRESS ?
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Aim of the study:
The announcement of a fetal anomaly needing surgical repair is associated with increased parental anxiety. Prenatal counselling by a paediatric surgeon has been shown to reduce subsequent parental anxiety during pregnancy. Whether this reduction in anxiety level persists after birth, has not been investigated. The objective was to compare postnatal psychological responses in parents who had been informed by paediatric surgeons and by obstetricians.
Methods
Two-hundred and nine parents of 105 neonates with surgical anomalies were included from 1997-1999. The babies of 98/209 parents (47%) had a prenatal diagnosis at 26 (range 16-40) weeks of gestation. Neonatal mortality in the group with prenatal diagnosis was 20%. Information by paediatric surgeons was given at 31 (range 19-37) weeks of gestation. Parents with prenatal diagnosis were divided into two study groups: parents informed by obstetricians and a paediatric surgeon (52) and parents informed by obstetricians only(35). Eleven parents, informed only around birth by local obstetricians, were not included. Psychological reaction was assessed by Goldberg General Health Questionnaire-28 (GHQ-28), Spielberger State Trait Anxiety Inventory (STAI-X1) and Impact of Event Scale (IES). The questionnaires were administered at three occasions after birth.
Results
A few days after birth, relatively high psychological distress levels were found, but no significant differences between the two study groups. In contrast, six weeks after birth, significantly lower GHQ anxiety (0.68 vs. 1.07, p=0.015), GHQ social dysfunction (0.76 vs. 1.09, p=0.022), GHQ somatisation (0.64 vs. 0.92, p=0.049), and GHQ total score indicating overall distress (15.7 vs. 23.0, p=0.026) were found in the group informed by a paediatric surgeon. Similarily, significant reductions in intrusive stress levels (IES intrusion 5.9 vs. 11.9, p=0.006) and avoidance scores (IES avoidance 2.5 vs. 5.4, p=0.018) were observed in the group informed by a paediatric surgeon. After six months low scores and no significant differences between the two groups were found.
Conclusion
The study showed a possible benefit from pediatric surgical consultations 6 weeks after birth. However, no such effect could be documented immediately after birth and 6 months after birth.
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Rø, Johs S.; Skari, Hans; Haugen, Guttorm; Husby, Henrik; Bjørnland, Kristin & Dahl, Eilif
[Show all 7 contributors for this article]
(2002).
The prenatal pediatric surgical consultation: the first experience.
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Background:
The frequency of prenatal diagnosis of congenital anomalies is increasing. Studies have shown that prenatal diagnosis of congenital anomalies may cause significant psychological stress for the family. The objective was to review our initial series of prenatal pediatric surgical consultations at a tertiary center.
Methods:
Routines: Following the initial ultrasound examination and information by obstetricians specialized in fetal medicine, pediatric surgeons were contacted if further information on postnatal management and long-term aspects was indicated. One consultant and one resident from the Section of Pediatric Surgery were responsible for the majority of the consultations. If feasible, the consultations were arranged the same day or during the next obstetric appointment (1-3 weeks later).
Chart evaluation: The charts of 81 consecutive prenatal consultations by pediatric surgeons from July 1997 ¿ Dec. 2001 were reviewed retrospectively. The main variables recorded were: Prenatal and postnatal diagnosis, gestational age at the prenatal consultation, number of consultations, and prenatal and postnatal mortality. Survival by January 2002 was checked by census data.
Results:
Prenatal information by a pediatric surgeon was given in 81 cases, once for 66, twice for 14, and three times in one case. The gestational age at the prenatal consultation showed a bimodal distribution with peaks around week 20 and 35 (median 31, range 17-38). Both parents participated in the majority of the consultations. Total time consumption for each consultation was estimated to 2-3 hours including the counseling, parental support, search for information, coordination with the perinatal team, and documentation. The most common prenatal diagnoses were gastroschisis (24), obstructive uropathy (18), intestinal atresias (10), congenital diaphragmatic hernia (9), and omphalocele (8). Two pregnancies were terminated (congenital diaphragmatic hernia). The four fetuses who died in utero had: gastroschisis, hypoplastic left heart (1); cystic adenomatoid lung malformation with hydrops (1); duodenal atresia (1); cystic hygroma, vitium cordis, obstructive uropathy (1) and 75 were liveborn. Infant mortality in liveborn patients was 12% (9/75), and 7 of these deaths occurred during the neonatal period. The diagnoses of the infants who died postnatally were congenital diaphragmatic hernia (5), giant abdominal wall defects (3), and urethra valve syndrome (1).
Conclusions:
Prenatal pediatric surgical consultation is warranted in most instances following prenatal diagnoses of major congenital anomalies that might require postnatal surgical treatment. The consultation provides the parents with early and valuable insight into the nature of the malformation and postnatal treatment. Sixty-six of 79 fetuses (84%) in the intention-to-treat population survived. The effects of prenatal surgical consultation on postnatal parental psychological reactions need to be studied further.
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Skari, Hans; Malt, Ulrik Fredrik; Bjørnland, Kristin; Haugen, Gunnar & Emblem, Ragnhild
(2002).
Does prenatal pediatric surgical consultation influence postnatal parental distress?
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Skari, Hans; Malt, Ulrik Fredrik; Bjørnland, Kristin; Rø, Johs S.; Haugen, Gunnar & Emblem, Ragnhild
(2002).
Kan prenatal barnekirurgisk informasjon redusere mors og fars psykologiske stress etter fødsel av barn med alvorlig medfødt misdannelse?
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Medhus, Asle Wilhelm; Bjørnland, Kristin; Bondi, Johan Fridtjof; Emblem, Ragnhild & Husebye, Einar
(2002).
Prolonged recording of the interdigestive motility of the small bowel in adults with Hirschpsrung´s disease.
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PROLONGED RECORDING OF INTERDIGESTIVE MOTILITY OF THE SMALL BOWEL IN ADULTS WITH HIRSCHSPRUNG¿S DISEASE
Bjornland K , Medhus AW, Emblem R, Bondi J, Husebye E.
Dept. of Paediatric Surgery, The Norwegian National Hospital
Dept. of Medicine, Ullevål University Hospital, Oslo, Norway
Abnormal gastric emptying and intestinal response to meal stimulation have been reported in adult patients with Hirschsprung¿s disease (HD), indicating a more widespread distribution of the disease. A detailed study of interdigestive motility of the small bowel in patients with HD is presented.
Sixteen patients surgically treated for HD during early childhood (median 21 yrs) and 17 healthy controls (25 yrs) were studied. All subjects were intubated in the morning with a solid-state nasojejunal catheter with six transducers in duodenum and proximal jejunum. The signals were stored in a portable data logger. The subjects were ambulant until removal of the catheter on the following day. One standardised meal was ingested during the study. Essential motility patterns and periods of the migrating motor complex (MMC) were analysed and stratified into diurnal and nocturnal in accordance with established definitions. Results are given as median (25 and 75 percentiles). Mann-Whitney test was applied.
In duodenum, the median duration of diurnal phase I was 9.4 (8.3-15.4) and 20.7 min (11.7-28.8) in patients and controls, respectively (p<0.01). Corresponding values for nocturnal phase I were 27.5 (16.8-32.3) and 35.4 min (27.8-51.2) (p<0.02), respectively. Duration of diurnal phase II was 68.7 (47.1-76.8) and 59.6 min (41.5-72.9) (p=0.41), whereas duration of nocturnal phase II was 40.2 (38.1-69.8) and 32.9 min (20.2-40.4) (p=0.06), respectively. Duration of diurnal phase III was 6.2 (5.1-7.9) and 4.1 min (3.5-5.4) (p<0.01), whereas duration of nocturnal phase III was 6.1 (4.8-7.0) and 4.5 min (4.2-6.0) (p=0.06). In jejunum, similar differences between patients and controls were found as in duodenum, except for the duration of phase III, which was comparable in patients and controls. The propagation velocity of phase III through the small bowel was similar in patients and controls during the day, but tended to be faster in patients than controls during the night (p=0.06).
Adult patients with HD have abnormal interdigestive motility of the small bowel characterised by reduced duration of phase I of the MMC, and prolonged overall duration of phases with contractile activity and of phase III in particular. These findings provide further evidence that the lesion in HD is not confined to the aganglionic segment of colon, but also involves the neural control of the upper gastrointestinal tract.
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Faugli, Anne; Bjørnland, Kristin; Faye-Schjøll, Torill; Olsen, May-Brit & Emblem, Ragnhild
(2002).
Spiseproblemer hos barn med øsofagusatresi.
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Background: Children with oesophageal atresia are born with blind-ended oesophagus and need urgent surgery treatment in the neonatal period. They have feeding problems and repeated respiratory problems in early childhood. We do know little about in what degree feeding problems in oesophageal atresia relates to medical conditions or other reasons. At the National hospital in Norway, we are doing a follow up study of one-year-old infants with oesophageal atresia born in 1999-2002 treated at our hospital. One of our aims is to understand more of feeding problems in oesophageal atresia and how these affects the child's psychosocial development.
Material and Methods: All infants born in 1999-2002 treated at The National Hospital for oesophageal atresia, coming to one-year follow up (ca. 40). A surgeon and a nurse assess them. A pedagogue using the Bayley Scales makes an objective assessment of the infant's developmental skills. A child psychiatrist interviews the mothers. The mother-infant interaction is assessed by PC-ERA (5 minutes videotape from feeding- and play-situation). A global assessment of the relationship is made after a total clinical adjustment.
Results: Classification of feeding disorders and differential diagnosis of food refusal will be presented together with preliminary descriptive data from our study.
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Hagen, Trine Sæther; Skari, Hans; Westgaard, Arne; Aagenæs, Ingegerd & Emblem, Ragnhild
(2002).
Testisretensjon - utredning av ikke-påviste testikler og kirurgisk behandling.
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TESTISRETENSJON - UTREDNING AV IKKE-PÅVISTE TESTIKLER OG KIRURGISK BEHANDLING.
Rikshospitalet har ikke primærfunksjon for behandling av testisretensjon, men mottar til operativ behandling pasienter med alvorlige tilleggsdiagnoser og pasienter med
ikke-påviste testikler til laparoscopi. Nyere litteratur og internasjonale retningslinjer anbefaler kirurgisk behandling i løpet av andre leveår og primær laparoscopi når testis
ikke kan påvises i lyskekanalen. Vi ønsket å undersøke når og hvordan våre pasienter har vært utredet og behandlet.
MATERIALE OG METODER:
Vi har gjennomgått journalene til 63 pasienter mottatt for testisretensjon i perioden 1. januar 2000 � 31. mai 2002. Vi registrerte alder, henvisningsgrunn, utredning og behandling på henvisningssykehus og på Rikshospitalet.
RESULTATER:
Medianalder ved henvisning var 47 (2-156) mndr. og ved mottak 51 (2-200) mndr. 17 pasienter hadde bilateral testisretensjon. Hovedhenvisningsgrunn (40 pasienter) var ikke-påvist testis (til primær laparoscopi). Diagnosen var på henvisningssted stilt ved palpasjon og med tillegg av ultralydundersøkelse hos 39. Hos 30/50 pasienter som på henvisningssted ble oppfattet å mangle testis i lyskekanalen, ble testis ved preoperativ ultralydundersøkelse identifisert i lyskekanalen. Ved operasjon ble 43 testikler funnet i lyskekanalen. 40 var identifisert og tre testikler var ikke påvist ved preoperativ ultralydundersøkelse på Rikshospitalet. Laparoscopi ble utført hos 21 pasienter. Hos 8 pasienter forelå testisatrofi/-aplasi, hos 10 pasienter en intraabdominal testis, og hos 3 pasienter ble det identifisert kar og ductus deferens til indre lyskeåpning.
KONKLUSJON:
Alder ved henvisning til behandling for ikke-påvist testikkel er for høy. Bevisstheten omkring testisretensjon bør økes slik at pasientene henvises tidligere. God ultralyddiagnostikk hos barn med ikke-palpabel testis vil redusere antall pasienter med behov for henvisning til laparoscopi.
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Rø, Johs S.; Skari, Hans; Haugen, Guttorm; Husby, Henrik & Emblem, Ragnhild
(2001).
Prenatal barnekirurgisk informasjonsvirksomhet ¿ et 3 års materiale.
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Skari, Hans; Malt, Ulrik Fredrik; Bjørnland, Kristin; Bjørnstad-Østensen, Anniken; Haugen, Guttorm & Emblem, Ragnhild
(2001).
Predictors of Parental Psychological Distress after Birth of a baby with a Congenital Malformation.
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Jarøy, Emilie Gimnes; Emblem, Ragnhild; Ougland, Rune & Farstad, Inger Nina
(2026).
Prediction for diagnostic and prognostic evaluation in paediatric surgery. From conventional statistics to machine learning.
Universitetet i Oslo.
ISSN 9788234808692.
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Clinical prediction underpins daily diagnostic, prognostic and treatment decisions, making it central to the care of children with diseases requiring pediatric surgery and to counseling their families. Reliable decision support tools can strengthen shared decision-making by improving the quality of clinical advice and enhancing parental health competence.
This thesis aims to improve diagnostic risk stratification in children with constipation undergoing evaluation for Hirschsprung’s disease (HD), and prognostic guidance for parents of boys with posterior urethral valves (PUV). Prediction is particularly challenging when studying such rare disease, where small cohorts limit robust evidence generation and often result in uncertain recommendations in clinical guidelines. We therefore sought to develop prediction models that could support more confident clinical decision-making in this setting.
Paper I evaluated the diagnostic value of guideline-recommended clinical features in 225 children with constipation. Only 22% of the children who underwent rectal biopsy were diagnosed with HD, and the diagnostic yield was only 10% among girls, with decreasing prevalence with increasing age. Building on these findings, Paper II demonstrated that a recall-optimized machine learning (ML) framework could have reduced the number of rectal biopsies by 35% among the 178 children older than one month, without missing a single HD diagnosis. Paper III applied a recursive feature elimination ML framework to identify early predictors of long-term renal dysfunction in 83 boys with PUV. Together, Papers II and III demonstrate that ML approaches can generate robust and clinically meaningful predictions from small and imbalanced datasets.
Overall, this thesis demonstrates that interpretable ML-based clinical decision-support tools have the potential to improve diagnostic and prognostic evaluations in rare pediatric diseases. If implemented in clinical practice, such tools could reduce unnecessary diagnostic procedures, support more personalized counselling and follow-up, and promote more efficient use of healthcare resources.
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Gulseth, Eirik; Wæhre, Anne; Emblem, Ragnhild & Andersen, Marit Helen
(2025).
Expanded health-related quality of life in 16-year-old boys following childhood hypospadias surgery.
Universitetet i Oslo.
ISSN 9788234806674.
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Health-related quality of life (HRQoL) reflects an individual's functional status and perceived well-being across physical, mental, and social dimensions. In hypospadias—a penile congenital condition affecting about 1 in 300 boys—our understanding of HRQoL, especially among adolescents, is limited. Most research has focused on isolated HRQoL aspects rather than its multidimensional nature. Hypospadias surgery is mainly carried out in early childhood. Complications are common and often require multiple surgeries. Surgery for hypospadias in early childhood can impact adolescents’ quality of life, particularly in terms of sexual well-being, body image and mental health.
This thesis aims to enhance knowledge of HRQoL in 16-year-old boys who have undergone hypospadias surgery. A cross-sectional study compared self-reported HRQoL among these boys with a healthy comparison group, collecting data from electronic medical records, validated questionnaires, and structured interviews at an outpatient clinic between March 2019 and March 2021. Healthy adolescents were recruited from schools in southeastern Norway.
This study highlights positive results across most of the examined variables and can conclude that the patients experience good, expanded health-related quality of life. However, some individuals face challenges. More patients were classified as having mental health issues or being at risk for mental problems than in the healthy group. Additionally, patients with proximal hypospadias report lower satisfaction with the appearance of their penis and sexual well-being.
In conclusion, the findings suggest that adolescents after hypospadias surgery report positive HRQoL outcomes overall. However, the increased mental health issues and specific challenges faced by the proximal group highlight the importance of follow-up after puberty. Additionally, comprehensive HRQoL assessments could help us identify individuals at risk and improve care strategies.
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Skreden, Marianne & Emblem, Ragnhild
(2011).
Psychological distress in mothers and fathers : long-term follow-up after birth of healthy children and children with malformations.
Universitetet i Oslo.
ISSN 9788280725608.
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Published
Apr. 13, 2011 2:55 PM
- Last modified
May 27, 2011 4:10 PM
