en
Scientific article
English

Preferences for long-term follow-up care in childhood cancer survivors

Published inEuropean Journal of Cancer Care, vol. 25, no. 6, p. 1024-1033
Publication date2016
Abstract

Follow-up care is important for childhood cancer survivors to facilitate early detection and treatment of late effects. We aimed to describe preferences for different organisational aspects and models of follow-up care among Swiss childhood cancer survivors, and characteristics associated with preferences for different models. We contacted 720 survivors aged 18+ years, diagnosed with cancer after 1990 (age 0-16 years), registered in the Swiss Childhood Cancer Registry (SCCR), and Swiss resident, who previously participated in a baseline survey. They received questionnaires to assess attendance and preferences for follow-up (rated on 4-point scales, 0-3). Clinical information was available from the SCCR. Survivors (n = 314: response rate 43.6%; 47.8% still attended follow-up) rated clinical reasons for follow-up higher than supportive reasons (p < .001). They rated checking for cancer recurrence (mean = 2.78, SD = 0.53) and knowing about risks for my children most important (mean = 2.22, SD = 0.83). They preferred to attend a children's hospital (mean = 1.94, SD = 1.11), adult hospital (mean = 1.86, SD = 0.98) or general practitioner (mean = 1.86, SD = 1.01) rather than a central specialised late effects clinic (mean = 1.25, SD = 1.06, p < .001), and be seen by paediatric (mean = 2.24, SD = 0.72) or medical oncologist (mean = 2.17, SD = 0.69). Survivors preferred decentralised clinic-based follow-up, rather than one central specialised late effects clinic. Survivors' preferences should be considered to ensure future attendance.

Keywords
  • Adult
  • Adult Survivors of Child Adverse Events/psychology
  • Aftercare
  • Aged
  • Child
  • Female
  • Humans
  • Male
  • Middle Aged
  • Neoplasms/psychology/therapy
  • Patient Preference
  • Professional-Patient Relations
  • Stress, Psychological/etiology
  • Surveys and Questionnaires
Citation (ISO format)
MICHEL, G et al. Preferences for long-term follow-up care in childhood cancer survivors. In: European Journal of Cancer Care, 2016, vol. 25, n° 6, p. 1024–1033. doi: 10.1111/ecc.12560
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Article (Published version)
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ISSN of the journal0961-5423
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