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The met and unmet health care needs of adult survivors of childhood central nervous system tumors: A double-informant, population-based study
Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden.
Department of Pediatrics, The Queen Silvia Children’s Hospital, University Hospital, University of Gothenburg, Gothenburg, Sweden.
Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden.
Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden.
2011 (English)In: Cancer, ISSN 0008-543X, E-ISSN 1097-0142, Vol. 117, no 18, 4294-4303 p.Article in journal (Refereed) Published
Description
Abstract [en]

BACKGROUND:

The purpose of the current study was to examine the persistent health care needs (HCNs) of adult survivors of childhood central nervous system tumors.

METHODS:

In this population-based study, 526 of 679 eligible survivors and 550 parents provided data. Survivors' HCNs were assessed using a questionnaire covering 4 domains: Medical Care, care coordination and communication (Care Coordination), Illness Education, and Psychosocial Services. Needs were categorized as no need, met need, and unmet need. Outcomes were analyzed specifically in relation to survivors' functional late effects as assessed using the Health Utilities Index Mark 2/3.

RESULTS:

Approximately 40% of survivors experienced their HCNs as exceeding the supposed general population average, and 41% had a current HCN that was unmet. The most common unmet need concerned the Psychosocial Services domain (reported by 40%), followed by a lack of Illness Education (35%), Care Coordination (22%), and Medical Care (15%). Survivors experiencing functional late effects had greater HCNs, and a greater percentage of unmet needs. Agreement between survivor-reported and parent proxy-reported HCNs was satisfactory, whereas agreement for survivors' unmet HCNs ranged from poor to satisfactory.

CONCLUSIONS:

Findings based on reliable double-informant data demonstrated that a considerable percentage of adult survivors report unmet HCNs, with female sex, younger age at diagnosis, and indications of disability and poor health status comprising significant risk factors. Issues critical for improved, comprehensive, long-term follow-up care were identified. Addressing these issues adequately in clinical follow-up extending into adulthood would likely improve the quality of comprehensive care for this patient group.

Place, publisher, year, edition, pages
2011. Vol. 117, no 18, 4294-4303 p.
National Category
Cancer and Oncology Applied Psychology
Identifiers
URN: urn:nbn:se:uu:diva-221573DOI: 10.1002/cncr.26020OAI: oai:DiVA.org:uu-221573DiVA: diva2:709535
Available from: 2014-04-02 Created: 2014-04-02 Last updated: 2017-12-05Bibliographically approved

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