ArticleBMJ open2021
Qualitative study of facilitators and barriers for continued follow-up care as perceived and experienced by young people with congenital heart disease in Sweden.
Article in BMJ open, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed, 10 citations in OpenAlex.
- Bridging Pediatric to Adult Care: A Scoping Review on Transitional Care for Individuals with Congenital Heart Disease Using Data Mining Techniques to Identify Key Topics.Current cardiology reports · 2026Article
- Neurocognitive and Psychological Interventions for Adults With Congenital Heart Disease: A Consensus Statement From the Adult Congenital Heart Disease/Neuro 2024 Conference.Journal of the American Heart Association · 2026Article
- The Emotional Heart of Telehealth: Rethinking Psychosocial Care for Congenital Heart Disease.CJC pediatric and congenital heart disease · 2025Article
- Article
- Letting go/ moving on: A scoping review of relational effects on transition to adult care.Health care transitions · 2024Article
- Access to Specialized Care Across the Lifespan in Tetralogy of Fallot.CJC pediatric and congenital heart disease · 2023Review
- Cardiology Care and Loss to Follow-Up Among Adults With Congenital Heart Defects in CH STRONG.The American journal of cardiology · 2023Article
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Authors and funding
5 authors at 4 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
In-depth understanding of factors perceived by young people with congenital heart disease (CHD) to affect continued follow-up care is needed to tailor preventive strategies for discontinuation of follow-up care. To identify facilitating factors, low-prevalence settings in terms of discontinuation should be investigated.
objectiveThis qualitative study describes factors affecting continued follow-up as perceived and experienced by young adults with CHD.
participantsUsing a mixed purposive sampling technique, 16 young adults with CHD were included. Three participants had discontinued follow-up care and 13 had continued follow-up care after transfer.
settingParticipants were recruited from all seven university hospitals in Sweden, which is considered a low-prevalence setting in terms of discontinuation.
designIndividual interviews were performed and subjected to qualitative content analysis.
resultsThe analysis resulted in three main categories, illuminating factors affecting continued follow-up: (1) motivation for follow-up care; (2) participation in care and sense of connectedness with healthcare provider (HCP) and (3) care accessibility. The choice of continuing follow-up or not was multifactorial. Knowledge of your CHD and the importance of continuing follow-up care was a central factor, as well as experiencing CHD-related symptoms and having ongoing or planned medical treatment or interventions. Sensing a clear purpose with follow-up care was facilitating, as was feeling well treated and cared for by HCPs. Practical aspects, such as travel distance was also stressed, as well as active invitations and reminders for visits.
conclusionFactors on both patient, hospital and healthcare system level were raised by participants, stressing the importance of holistic approaches when developing preventive strategies for discontinuation. There is a need for improved skills and competencies among HCPs, as well as a person-centred approach to follow-up care. In addition, specific healthcare needs and remaining transitional needs after transfer to adult care require careful consideration to prevent discontinuation.
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