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Perceived information provision and information needs in adolescent and young adult cancer survivors
Author(s) -
Christen Salome,
Weishaupt Esther,
Vetsch Janine,
Rueegg Corina S.,
Mader Luzius,
Dehler Silvia,
Michel Gisela
Publication year - 2019
Publication title -
european journal of cancer care
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.849
H-Index - 67
eISSN - 1365-2354
pISSN - 0961-5423
DOI - 10.1111/ecc.12892
Subject(s) - medicine , information needs , survivorship curve , distress , quality of life (healthcare) , disease , cancer , cancer registry , young adult , cancer survivor , family medicine , gerontology , psychiatry , clinical psychology , nursing , world wide web , computer science
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 ( HRQ oL). 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 HRQ oL ( 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 HRQ oL. 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.