Information provision and information needs in adult survivors of childhood cancer

• Published in: Pediatric blood & cancer 2014-02, Vol.61 (2), p.312-318
• Main Authors: Gianinazzi, Micòl E., Essig, Stefan, Rueegg, Corina S., von der Weid, Nicolas X., Brazzola, Pierluigi, Kuehni, Claudia E., Michel, Gisela
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Case-Control Studies; Child; childhood cancer survivors; cohort study; Consumer Health Information; Data Collection; Delivery of Health Care; Family medical history; Female; Follow-Up Studies; Health Knowledge, Attitudes, Practice; Hematology; Humans; information needs; information provision; Internet - statistics & numerical data; Leukemia; Male; Medical Informatics; Needs Assessment; Neoplasm Recurrence, Local - psychology; Neoplasm Recurrence, Local - therapy; Neoplasms - psychology; Neoplasms - therapy; Oncology; Patient Education as Topic; Pediatrics; Prognosis; Quality of Life; questionnaire survey; Registries; Surveys and Questionnaires; Survival Rate; Survivors - psychology; Young Adult
• ISSN: 1545-5009; 1545-5017
• DOI: 10.1002/pbc.24762

Background Knowledge about their past medical history is central for childhood cancer survivors to ensure informed decisions in their health management. Knowledge about information provision and information needs in this population is still scarce. We thus aimed to assess: (1) the information survivors reported to have received on disease, treatment, follow‐up, and late effects; (2) their information needs in these four domains and the format in which they would like it provided; (3) the association with psychological distress and quality of life (QoL). Procedure As part of the Follow‐up survey of the Swiss Childhood Cancer Survivor Study, we sent a questionnaire to all survivors (≥18 years) who previously participated to the baseline survey, were diagnosed with cancer after 1990 at an age of