Information needs of survivors and families after childhood CNS tumor treatment: a population-based study.

Publisher: Medical Journals Sweden AB Country of Publication: England NLM ID: 8709065 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1651-226X (Electronic) Linking ISSN: 0284186X NLM ISO Abbreviation: Acta Oncol Subsets: MEDLINE

Publication: 2024- : [Uppsala, Sweden] : Medical Journals Sweden AB
Original Publication: Stockholm, Sweden : Acta Oncologica, [1987-

Central Nervous System Neoplasms* ; Information Dissemination*/methods ; Parents* ; Patient Satisfaction* ; Survivors*; Child ; Female ; Humans ; Male ; Patient Education as Topic/methods ; Surveys and Questionnaires ; Sweden ; Young Adult

Background: This study examines information needs and satisfaction with provided information among 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 survivors and 551 parents provided data. Information needs and satisfaction with information were studied using a multi-dimensional standardized questionnaire addressing information-related issues.
Results: Overall, 52% of the survivors and 48% of the parents reported no, or only minor, satisfaction with the extent of provided information, and 51% of the survivors expressed a need for more information than 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 associated with greater satisfaction and usefulness of information. Dissatisfaction with information was associated with longer time since diagnosis, poorer current health status and female sex. The survivors experienced unmet information needs vis-à-vis late effects, illness education, rehabilitation and psychological services. Overall, parents were more dissatisfied than the survivors.
Conclusion: These findings have implications for improvements in information delivery. Information in childhood CNS tumor care and follow-up should specifically address issues where insufficiency was identified, and recognize persistent and with time changing needs at the successive stages of long-term survivorship.

Date Created: 20171202 Date Completed: 20180917 Latest Revision: 20180917

20231215

10.1080/0284186X.2017.1406136

29191069