Henrik Røkkum

• 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
• 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
• 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.

• 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

• 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.

• Amstel, Paul Van; Ghazzaoui, Ali El; Hall, Nigel J.; Wester, Tomas; Morini, Francesco & Lee, Johanna H. Van Der [Show all 97 contributors for this article] (2022). Paediatric appendicitis: International study of management in the COVID-19 pandemic. British Journal of Surgery. ISSN 0007-1323. 109(11), p. 1044–1048. doi: 10.1093/bjs/znac239. Full text in Research Archive
• 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. Full text in Research Archive Show summary

  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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• Røkkum, Henrik (2026). Short- and long-term outcome in patients with congenital gastrointestinal anomalies: Paving the way for Enhanced Recovery Protocols in neonatal surgery. Universitetet i Oslo. ISSN 9788234808357. Full text in Research Archive Show summary

  Neonates undergoing surgery for congenital gastrointestinal anomalies are a highly vulnerable patient group with a high risk of postoperative complications and prolonged hospital stays. The survival rate is high. However, very little is known about long-term clinical outcomes and quality of life. Further, parental experiences and needs during the initial hospital stay are scarcely investigated. In this thesis, short- and long-term outcomes for three of the most common congenital gastrointestinal anomalies (congenital duodenal obstruction, jejunoileal atresia, and gastroschisis) were investigated through review of medical records and questionnaire surveys. Postoperative complications were common, particularly surgical site infections and intestinal obstruction requiring reoperation. In the long term, approximately one third of patients had gastrointestinal symptoms, most commonly bloating, constipation, and diarrhoea. Further, one third had complaints regarding the surgical scar. Overall survival was 97%. Parental experiences were explored in a focus group discussion. The parents described the burden of being separated from their baby and a strong desire to be more involved in daily care. The mothers were also worried about whether they would succeed with breastfeeding. Nevertheless, they felt their child was well cared for by competent healthcare professionals. These findings formed the basis for a multimodal, multidisciplinary Enhanced Recovery Protocol for congenital duodenal obstruction. The protocol, which was implemented at Oslo University Hospital and St. Olav’s hospital, included recommendations for the whole perioperative course, including surgical technique, antibiotic use, nutrition, and parental involvement. The protocol was found to be safe and feasible, with early results suggesting clinical benefit. The thesis provides an important foundation for a comprehensive, evidence-based, and family-centred standardization of neonatal surgery in Norway.

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