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Eur J Cancer Care (Engl). 2016 Nov;25(6):1024-1033. doi: 10.1111/ecc.12560. Epub 2016 Aug 23.

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

Author information

1
Department of Health Sciences & Health Policy, University of Lucerne, Lucerne, Switzerland. gisela.michel@unilu.ch.
2
Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland. gisela.michel@unilu.ch.
3
Department of Health Sciences & Health Policy, University of Lucerne, Lucerne, Switzerland.
4
Department of Psychology, University of Sheffield, Sheffield, UK.
5
Department of Paediatric Oncology, University Children's Hospital, Zurich, Switzerland.
6
University Children's Hospital Beider Basel (UKBB), Basel, Switzerland.
7
Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.

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:

aftercare; oncology; organisation; patient preference; survivors

PMID:
27550385
DOI:
10.1111/ecc.12560
[Indexed for MEDLINE]
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