ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2017
Experiences with late effects-related care and preferences for long-term follow-up care among adult survivors of childhood lymphoma.
Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 30 citations in OpenAlex.
- Barriers and facilitators associated with long-term follow-up care for childhood, adolescent, and young adult cancer survivors: a systematic review.BMC health services research · 2025Pooled it
- Hearing screening beyond the clinic: Childhood cancer survivors' perspectives on a novel hearing screening program.BMC health services research · 2026Trial
- Patient Perspectives on Non-Hodgkin Lymphoma: A Qualitative Study to Guide Selection of Clinical Trial Endpoints.Current oncology (Toronto, Ont.) · 2026Article
- Childhood cancer models of survivorship care: a scoping review of elements of care and reported outcomes.Journal of cancer survivorship : research and practice · 2025Article
- How mothers and fathers support adult childhood cancer survivors: parental attitudes, involvement, and motivation toward long-term follow-up care (results from the Swiss Childhood Cancer Survivor Study - Parents).Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Determinants of the implementation of eHealth-based long-term follow-up care for young cancer survivors: a qualitative study.BMC cancer · 2024Article
- Article
- Determinants of surveillance for late effects in childhood cancer survivors: a qualitative study using the Theoretical Domains Framework.Journal of cancer survivorship : research and practice · 2022Article
- Self-reported late effects and long-term follow-up care among 1889 long-term Norwegian Childhood, Adolescent, and Young Adult Cancer Survivors (the NOR-CAYACS study).Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2021Article
- Article
- The Role of Primary Care Physicians in Childhood Cancer Survivorship Care: Multiperspective Interviews.The oncologist · 2019Article
- Supporting self-management in palliative care throughout the cancer care trajectory.Current opinion in supportive and palliative care · 2018Review
- Review
- Rural Primary Care Offices and Cancer Survivorship Care: Part of the Care Trajectory for Cancer Survivors.Health services research and managerial epidemiologyArticle
Corrections and comments
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Authors and funding
8 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeGiven childhood cancer survivors' risk of treatment-induced late effects, long-term follow-up care is recommended. We explored experiences with late effects-related care and preferences for long-term follow-up care among adult survivors of childhood malignant lymphoma in Norway.
methodsWe conducted five focus group interviews with 34 survivors (19 females; 21 Hodgkin/13 non-Hodgkin lymphoma survivors; mean age 39 years; mean time from diagnosis 26 years). Data was analyzed using principles of thematic analysis.
resultsTwo main themes were identified: (1) the survivors' experiences with late effects-related care and (2) their preferences for long-term follow-up care. Most of the survivors were dissatisfied with their late effects-related care due to perceptions of poor coordination of healthcare needs in a fragmented system, combined with a perceived lack of knowledge of late effects among themselves and general practitioners (GPs). All survivors valued long-term follow-up care. Oncologists were the preferred care providers, but GPs were considered acceptable providers if they had sufficient knowledge of late effects and routine examinations, short waiting times, and improved GP-oncologist collaboration.
conclusionsOur results suggest that a shared care model of long-term follow-up care involving specialists, GPs, and the survivors themselves is likely to fulfill several of the currently unmet needs among adult survivors of childhood cancers. Improved patient education about late effects and follow-up care would aid self-management. The survivors' concerns regarding lack of sufficient knowledge of late effects among GPs suggest a need for improving access to, and dissemination of, information of late effects.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.