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Health-related information needs in a large and diverse sample of adult cancer survivors: implications for cancer care
Authors:Ellen Burke Beckjord  Neeraj K Arora  Wendy McLaughlin  Ingrid Oakley-Girvan  Ann S Hamilton  Bradford W Hesse
Institution:(1) RAND Corporation, 4570 Fifth Avenue, Room 4422, Pittsburgh, PA 15213, USA;(2) Outcomes Research Branch (ORB), Applied Research Program (ARP), Division of Cancer Control and Population Sciences (DCCPS), National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda, MD, USA;(3) Applied Research Program (ARP), Division of Cancer Control and Population Sciences (DCCPS), National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda, MD, USA;(4) Northern California Cancer Center (NCCC), Fremont, CA, USA;(5) Department of Health Research and Policy, Stanford University School of Medicine, Stanford, CA, USA;(6) Stanford Comprehensive Cancer Center, Stanford University School of Medicine, Stanford, CA, USA;(7) Keck School of Medicine, University of Southern California, Los Angeles, CA, USA;(8) Health Communication and Informatics Research Branch, Behavioral Research Program (BRP), DCCPS, NCI, National Institutes of Health (NIH), Bethesda, MD, USA
Abstract:Background  This study describes the information needs of adult cancer survivors, identifies sociodemographic, health, and healthcare-related factors associated with information needs, and examines the relationship between information needs and survivors’ perceived mental and physical health. Methods  One thousand forty survivors 2–5 years post-diagnosis who were identified via two cancer registries were included in the present analysis. Self-report questionnaires assessed six categories of information needs, sociodemographic, health, and healthcare-related variables, and perceived mental and physical health. Results  Information needs were prevalent and varied; most survivors need more information about tests and treatments, health promotion, side effects and symptoms, and interpersonal and emotional issues. Multivariate analyses suggested that survivors who were younger, who reported non-White race/ethnicity, who reported less than excellent quality of follow-up cancer care, and who had more comorbid health conditions had more information needs. After adjustment for sociodemographic and health-related variables, more information needs were associated with worse perceived mental and physical health. Conclusions  Most cancer survivors needed more information about maintaining good health outcomes during survivorship. Health communication interventions, such as Survivorship Care Plans, have excellent potential to address survivors’ information needs while improving quality of follow-up cancer care and health-related quality of life.
Keywords:Cancer survivorship  Information needs  Quality of care
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