Mindy C DeRouen1, Ashley Wilder Smith2, Li Tao1,3, Keith M Bellizzi4, Charles F Lynch5, Helen M Parsons6, Erin E Kent7, Theresa H M Keegan1,8. 1. Cancer Prevention Institute of California, 2201 Walnut Ave, Suite 300, Fremont, CA, USA. 2. Control and Population Sciences, National Cancer Institute, National Institutes of Health, 6130 Executive Blvd, Bethesda, MD, USA. 3. Department of Medicine, Stanford University School of Medicine, 300 Pasteur Drive, Stanford, CA, USA. 4. Department of Human Development and Family Studies, University of Connecticut, 348 Mansfield Rd, Storrs, CT, USA. 5. Department of Epidemiology, University of Iowa, 105 River St, Iowa City, IA, USA. 6. Department of Epidemiology and Biostatistics, The University of Texas Health Science Center at San Antonio, 7703 Floyd Curl Dr, Mail Code 7933, San Antonio, TX, USA. 7. Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, 6130 Executive Blvd, Bethesda, MD, USA. 8. Department of Health Research and Policy, Stanford University School of Medicine, Stanford, CA, USA.
Abstract
OBJECTIVE: Adolescents and young adults (AYAs) diagnosed with cancer between 15 and 39 years of age often report need for greater amounts of cancer-related information and perceive that cancer has had a negative impact on control over their life. We examined whether unmet information need and perceived control over life are associated with health-related quality of life (HRQOL). METHODS: We examined data from 484 AYA cancer survivors recruited from population-based cancer registries in 2007-2008. Participants completed surveys a median of 11 months after diagnosis. Multivariable linear regression analyses estimated associations of unmet cancer-related information needs and impact of cancer on control over life on HRQOL (SF-12). RESULTS: Two-thirds of AYAs reported an intermediate or high level of unmet information need, and half (47%) reported a negative impact of cancer on control. Greater unmet information need was associated with lower overall mental and physical HRQOL and lower levels of all HRQOL subscales except vitality. A negative impact on control over life was associated with lower overall mental HRQOL as well as lower HRQOL across all subscales except general health perceptions (all p <0.05). In multivariable analyses, perceived control and unmet information need were independently associated with HRQOL (p-values for interaction >0.1). CONCLUSIONS: Adolescent and young adult patients with cancer have high levels of unmet cancer-related information needs and perceived negative impact of cancer on control over life; both were independently associated with lower HRQOL. Addressing unmet information needs among AYA cancer survivors and finding ways to increase their sense of control may help improve HRQOL in this understudied population.
OBJECTIVE: Adolescents and young adults (AYAs) diagnosed with cancer between 15 and 39 years of age often report need for greater amounts of cancer-related information and perceive that cancer has had a negative impact on control over their life. We examined whether unmet information need and perceived control over life are associated with health-related quality of life (HRQOL). METHODS: We examined data from 484 AYA cancer survivors recruited from population-based cancer registries in 2007-2008. Participants completed surveys a median of 11 months after diagnosis. Multivariable linear regression analyses estimated associations of unmet cancer-related information needs and impact of cancer on control over life on HRQOL (SF-12). RESULTS: Two-thirds of AYAs reported an intermediate or high level of unmet information need, and half (47%) reported a negative impact of cancer on control. Greater unmet information need was associated with lower overall mental and physical HRQOL and lower levels of all HRQOL subscales except vitality. A negative impact on control over life was associated with lower overall mental HRQOL as well as lower HRQOL across all subscales except general health perceptions (all p <0.05). In multivariable analyses, perceived control and unmet information need were independently associated with HRQOL (p-values for interaction >0.1). CONCLUSIONS: Adolescent and young adult patients with cancer have high levels of unmet cancer-related information needs and perceived negative impact of cancer on control over life; both were independently associated with lower HRQOL. Addressing unmet information needs among AYA cancer survivors and finding ways to increase their sense of control may help improve HRQOL in this understudied population.
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