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• Hjorth-Johansen, Elin; Børøsund, Elin; Moen, Anne; Martinsen, Ingeborg; Wik, Gunnar & Solevåg, Anne Lee [Show all 8 contributors for this article] (2024). An individualised mobile app was beneficial for the mothers of infants with severe congenital heart defects. Acta Paediatrica. ISSN 0803-5253. 114(6), p. 1238–1248. doi: 10.1111/apa.17556. Full text in Research Archive
• Erikssen, Gunnar; Liestøl, Knut; Aboulhosn, Jamil; Holmstrøm, Henrik; Wik, Gunnar & Døhlen, Gaute [Show all 14 contributors for this article] (2023). Preoperative versus postoperative survival in patients with univentricular heart: A nationwide, retrospective study of patients born in 1990-2015. BMJ Open. 13(7). doi: 10.1136/bmjopen-2022-069531. Full text in Research Archive Show summary

  Objectives Few data exist on mortality among patients with univentricular heart (UVH) before surgery. Our aim was to explore the results of intention to perform surgery by estimating preoperative vs postoperative survival in different UVH subgroups. Design Retrospective. Setting Tertiary centre for congenital cardiology and congenital heart surgery. Participants All 595 Norwegian children with UVH born alive from 1990 to 2015, followed until 31 December 2020. Results One quarter (151/595; 25.4%) were not operated. Among these, only two survived, and 125/149 (83.9%) died within 1 month. Reasons for not operating were that surgery was not feasible in 31.1%, preoperative complications in 25.2%, general health issues in 23.2% and parental decision in 20.5%. In total, 327/595 (55.0%) died; 283/327 (86.5%) already died during the first 2 years of life. Preoperative survival varied widely among the UVH subgroups, ranging from 40/65 (61.5%) among patients with unbalanced atrioventricular septal defect to 39/42 (92.9%) among patients with double inlet left ventricle. Postoperative survival followed a similar pattern. Postoperative survival among patients with hypoplastic left heart syndrome (HLHS) improved significantly (5-year survival, 42.5% vs 75.3% among patients born in 1990–2002 vs 2003–2015; p<0.0001), but not among non-HLHS patients (65.7% vs 72.6%; p=0.22)—among whom several subgroups had a poor prognosis similar to HLHS. A total of 291/595 patients (48.9%) had Fontan surgery Conclusions Surgery was refrained in one quarter of the patients, among whom almost all died shortly after birth. Long-term prognosis was largely determined during the first 2 years. There was a strong concordance between preoperative and postoperative survival. HLHS survival was improved, but non-HLHS survival did not change significantly. This study demonstrates the complications and outcomes encountering newborns with UVH at all major stages of preoperative and operative treatment.

• Wik, Gunnar; Jortveit, Jarle; Sitras, Vasilis; Perminow, Karl Viktor; Pripp, Are Hugo & Døhlen, Gaute [Show all 8 contributors for this article] (2023). Detection of severe congenital heart defects in live-born infants in Norway 2017–2020. Acta Paediatrica. ISSN 0803-5253. 113(1), p. 135–142. doi: 10.1111/apa.16953. Full text in Research Archive
• Hjorth-Johansen, Elin; Børøsund, Elin; Moen, Anne; Anna, Harmens; Martinsen, Ingeborg & Wik, Gunnar [Show all 9 contributors for this article] (2022). Heart OBServation app: development of a decision support tool for parents of infants with severe cardiac disease. Cardiology in the Young. ISSN 1047-9511. 33(8), p. 1350–1358. doi: 10.1017/S1047951122002438. Full text in Research Archive Show summary

  Background and objectives: Many parents of infants with CHD find it difficult to recognise symptoms of deterioration in their children. Therefore, a personalised decision support application for parents has been developed. This application aims to increase parents’ awareness of their infant’s normal condition, help them assess signs of deterioration, decide who and when to contact health services, and what to report. The aim of this paper is to describe the concept and report results from a usability study. Methods: An interprofessional group developed a mobile application called the Heart OBServation app in close collaboration with parents using an iterative process. We performed a usability study consisting of semi-structured interviews of 10 families at discharge and after one month and arranged two focus group interviews with nurses caring for these families. Athematic framework analysis of the interviews explored the usability of features in the application. Usability was assessed twice using the System Usability Scale, and a user log was registered throughout the study. Results: The overall system usability score, 82.3 after discharge and 81.7 after one month, indicates good system usability. The features of Heart OBServation were perceived as useful to provide tailored information, increase awareness of the child’s normal condition, and to guide parents in what to look for. To empower parents, an interactive discharge checklist was added. Conclusions: The Heart OBServation demonstrated good usability and was well received by parents and nurses. Feasibility and benefits of this application in clinical practice will be investigated in further studies

• Wik, Gunnar; Jortveit, Jarle; Sitras, Vasilis; Døhlen, Gaute; Rønnestad, Arild Erlend & Holmstrøm, Henrik (2021). Unexpected death in children with severe congenital heart defects in Norway 2004-2016. Archives of Disease in Childhood. ISSN 0003-9888. 106, p. 961–966. doi: 10.1136/archdischild-2020-319936. Full text in Research Archive
• Wik, Gunnar; Jortveit, Jarle; Sitras, Vasilis; Døhlen, Gaute; Rønnestad, Arild Erlend & Holmstrøm, Henrik (2020). Severe congenital heart defects: Incidence, causes and time trends of preoperative mortality in Norway. Archives of Disease in Childhood. ISSN 0003-9888. 105(8), p. 738–743. doi: 10.1136/archdischild-2019-317581. Full text in Research Archive
• Jortveit, Jarle; Wik, Gunnar; Ødegaard, Jostein Strand; Sitras, Vasilis; Perminow, Karl Viktor & Holmstrøm, Henrik (2019). Diagnostikk av alvorlige medfødte hjertefeil i Norge 2016. Tidsskrift for Den norske legeforening (Tidsskriftet). ISSN 0029-2001. 139(2). doi: 10.4045/tidsskr.18.0606. Full text in Research Archive

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• Iversen, Kristin Vabo; Jortveit, Jarle; Solvik-Olsen, Tone; Osestad, Toril Margrethe; Tølløfsrud, Per Arne & Wik, Gunnar (2025). Right-sided pleural, pericardial, and intra-abdominal effusion as a complication of an appropriately placed umbilical venous catheter: a case report. doi: 10.1186/s13256-025-05690-5. Full text in Research Archive
• Hjorth-Johansen, Elin; Holmstrøm, Henrik; Børøsund, Elin; Moen, Anne; Eger, Siw Helen Westby & Wik, Gunnar [Show all 8 contributors for this article] (2022). A mobile application to support parents of infants with severe cardiac disease. Full text in Research Archive
• Wik, Gunnar; Thomassen, Synnøve Nepstad & Fegran, Liv (2021). Tverrfaglig oppfølging av hjertesyke barn ved SSHF. Foreningen for hjertesyke barn. Full text in Research Archive

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