A Study of Childhood Cancer Survivors’ Engagement with Long-Term Follow-Up Care: ‘To attend or not to attend, that is the question’.

KATHERINE KNIGHTING, JENNIFER KIRTON, LUCY BRAY, James Hayden, Lynda Appleton, Nicki Thorp

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Abstract

Purpose
In the UK, there are over 40,000 childhood cancer survivors (CCS); this figure grows approximately 1,300 annually. Two-thirds are at risk of developing serious disabling or life-threatening conditions due to adverse late effects of the cancer or treatment received in childhood. Life-long, follow-up care for the surveillance and management of late effects is recommended. This study explored CCS’ views and experiences of long-term follow-up (LTFU) care within a cancer centre.

Methods
Paper questionnaires (n=113) and qualitative interviews (n=13).

Results
The majority (n=83, 80%) of CCS reported being satisfied with their LTFU care and felt that it was important to attend long-term survivorship follow-up (n=97, 86%). However, some were not well informed about their cancer treatment history, purpose for attending the clinic or the potential for late effects. Barriers associated with LTFU included; provision of information, lack of interpersonal relationships, practical and logistic challenges.

Conclusions
Barriers identified can be addressed through strategies including provision of verbal and written information and care plans to increase CCS’ knowledge of their cancer history, risk of late effects and the purpose of LTFU care, both at transition and throughout their survivorship journey; patient-centred services that enhance patient choice and flexibility of access to multiple specialities; and use of risk stratified pathways to encourage supported self-management based on cancer type, co-morbidity, and level of professional involvement required. Improving regular provision of information at critical time-points, and exploring a flexible, patient-centred delivery of LFTU care based on risk, could increase attendance and self-management in CCS.

KEYWORDS
Childhood cancer; adolescent; survivorship; long-term follow-up; late effects; health services
Original languageEnglish
Article number101728
Number of pages16
JournalEuropean Journal of Oncology Nursing
Volume45
Early online date10 Feb 2020
DOIs
Publication statusE-pub ahead of print - 10 Feb 2020

Keywords

  • Childhood cancer
  • health services
  • late effects
  • long-term follow-up
  • survivorship
  • adolescent

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