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Information needs of survivors and families after childhood CNS tumor treatment: a population-based study
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. (Clinical Psychology in Healthcare)ORCID iD: 0000-0003-1287-2626
2017 (English)In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, ISSN 0284-186XArticle in journal (Refereed) Published
Abstract [en]

Background: This study examines information needs and satisfaction with provided informationamong childhood central nervous system (CNS) tumor survivors and their parents.Material and methods: In a population-based sample of 697 adult survivors in Sweden, 518 survivorsand 551 parents provided data. Information needs and satisfaction with information were studied usinga multi-dimensional standardized questionnaire addressing information-related issues.Results: Overall, 52% of the survivors and 48% of the parents reported no, or only minor, satisfactionwith the extent of provided information, and 51% of the survivors expressed a need for more informationthan provided. The information received was found useful (to some extent/very much) by 53%,while 47% did not find it useful, or to a minor degree only. Obtaining written material was associatedwith greater satisfaction and usefulness of information. Dissatisfaction with information was associatedwith longer time since diagnosis, poorer current health status and female sex. The survivors experiencedunmet information needs vis-a-vis late effects, illness education, rehabilitation and psychologicalservices. Overall, parents were more dissatisfied than the survivors.Conclusion: These findings have implications for improvements in information delivery. Information inchildhood CNS tumor care and follow-up should specifically address issues where insufficiency wasidentified, and recognize persistent and with time changing needs at the successive stages of longtermsurvivorship.

Place, publisher, year, edition, pages
Taylor & Francis, 2017.
Keyword [en]
Childhood cancer; CNS tumours; adult survivors; very long-term survivors; parents; information provision; clinical follow-up; long-term surveillance
National Category
Cancer and Oncology
Research subject
Oncology
Identifiers
URN: urn:nbn:se:uu:diva-335311DOI: 10.1080/0284186X.2017.1406136OAI: oai:DiVA.org:uu-335311DiVA: diva2:1162265
Projects
The Swedish childhood CNS tumor LIFE study
Funder
Swedish Childhood Cancer Foundation
Note

The study was funded also by: Jane and Dan Olsson Foundation for Science, Sweden.

Available from: 2017-12-04 Created: 2017-12-04 Last updated: 2017-12-04

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Publisher's full texthttp://www.tandfonline.com/doi/full/10.1080/0284186X.2017.1406136

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