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

  • Michel G Department of Health Sciences & Health Policy, University of Lucerne, Lucerne, Switzerland. gisela.michel@unilu.ch.
  • Gianinazzi ME Department of Health Sciences & Health Policy, University of Lucerne, Lucerne, Switzerland.
  • Eiser C Department of Psychology, University of Sheffield, Sheffield, UK.
  • Bergstraesser E Department of Paediatric Oncology, University Children's Hospital, Zurich, Switzerland.
  • Vetsch J Department of Health Sciences & Health Policy, University of Lucerne, Lucerne, Switzerland.
  • von der Weid N University Children's Hospital Beider Basel (UKBB), Basel, Switzerland.
  • Kuehni CE Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
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  • 2016-08-24
Published in:
  • European journal of cancer care. - 2016
aftercare
oncology
organisation
patient preference
survivors
Adult
Adult Survivors of Child Adverse Events
Aftercare
Aged
Child
Female
Humans
Male
Middle Aged
Neoplasms
Patient Preference
Professional-Patient Relations
Stress, Psychological
Surveys and Questionnaires
English 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.
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  • English
Open access status
green
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Persistent URL
https://sonar.ch/global/documents/285460
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