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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
Version of Record online: 8 MAR 2011
Copyright © 2011 American Cancer Society
Volume 117, Issue 18, pages 4294–4303, 15 September 2011
How to Cite
Hovén, E., Lannering, B., Gustafsson, G. and Boman, K. K. (2011), The met and unmet health care needs of adult survivors of childhood central nervous system tumors. Cancer, 117: 4294–4303. doi: 10.1002/cncr.26020
We gratefully acknowledge the contributions of study participants and participating pediatric oncology centers. We also thank Jeremy H. Becker for his helpful comments.
- Issue online: 2 SEP 2011
- Version of Record online: 8 MAR 2011
- Manuscript Accepted: 26 JAN 2011
- Manuscript Revised: 14 JAN 2011
- Manuscript Received: 22 OCT 2010
- The Swedish Childhood Cancer Foundation. Grant Number: PROJ05/106
- Karolinska Institutet-Stockholm Country Council ALF. Grant Number: Project #50831
- childhood cancer;
- central nervous system tumors;
- adult survivors;
- health care needs;
- long-term follow-up;
The purpose of the current study was to examine the persistent health care needs (HCNs) of adult survivors of childhood central nervous system tumors.
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.
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.
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. Cancer 2011;. © 2011 American Cancer Society