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Perceived information provision and information needs in adolescent and young adult cancer survivors.

  • Christen S Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland.
  • Weishaupt E Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland.
  • Vetsch J Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland.
  • Rueegg CS Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland.
  • Mader L Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland.
  • Dehler S Departement Gesundheit und Soziales, Abteilung Gesundheit, Aarau, Switzerland.
  • Michel G Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland.
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  • 2018-07-28
Published in:
  • European journal of cancer care. - 2019
Europe
adolescent and young adult cancer survivors
cancer registry
information needs
information provision
questionnaire survey
Adolescent
Adult
Aftercare
Cancer Survivors
Communication
Decision Making
Female
Health Status
Humans
Information Dissemination
Logistic Models
Male
Middle Aged
Needs Assessment
Neoplasms
Patient Education as Topic
Quality of Life
Registries
Switzerland
Young Adult
English Knowledge on former diagnosis, treatment and survivorship is important for adolescent and young adult cancer survivors (AYACS) to make informed healthcare decisions. We aimed to (a) describe the information AYACS reported to have received, (b) identify current information needs and survivors' preferred format of communication, and (c) examine associations between information needs and cancer-related/socio-demographic characteristics, psychological distress and health-related quality of life (HRQoL). We identified AYACS (16-25 years at diagnosis; ≥5 years since diagnosis) through the Cancer Registry Zurich and Zug. Survivors received a questionnaire on information received and current information needs, socio-demographic information, psychological distress (Brief Symptom Inventory-18) and HRQoL (SF-12). Clinical characteristics were available from the cancer registry. We used descriptive statistics and univariable regression models. Of 160 responders, most reported to have received information on disease (96.3%), treatment (96.3%) and follow-up (89.4%), fewer on late effects (63.1%). Survivors reported information needs on late effects (78.7%), follow-up (71.3%), disease (58.1%) and treatment (55.6%). Information needs were associated with experiencing psychological distress and lower mental HRQoL. Most Swiss AYACS have information needs, especially on follow-up and late effects. Therefore, AYACS should be personally, continuously and proactively informed about their disease, treatment, follow-up care and late effects.
Language
  • English
Open access status
green
Identifiers
Persistent URL
https://sonar.ch/global/documents/206465
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