Cancer-related information needs and cancer's impact on control over life influence health-related quality of life among adolescents and young adults with cancer

Mindy C DeRouen; Ashley Wilder Smith; Li Tao; Keith M Bellizzi; Charles F Lynch; Helen M Parsons; Erin E Kent; Theresa H M Keegan; AYA HOPE Study Collaborative Group

doi:10.1002/pon.3730

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Cancer-related information needs and cancer's impact on control over life influence health-related quality of life among adolescents and young adults with cancer

Journal article

Peer reviewed

Cancer-related information needs and cancer's impact on control over life influence health-related quality of life among adolescents and young adults with cancer

Mindy C DeRouen, Ashley Wilder Smith, Li Tao, Keith M Bellizzi, Charles F Lynch, Helen M Parsons, Erin E Kent, Theresa H M Keegan and AYA HOPE Study Collaborative Group

Psycho-oncology (Chichester, England), Vol.24(9), pp.1104-1115

09/2015

DOI: 10.1002/pon.3730

PMCID: PMC4510026

PMID: 25611943

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https://www.ncbi.nlm.nih.gov/pmc/articles/4510026View

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Abstract

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). 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). 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). 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.

Humans

Survivors - statistics & numerical data

Male

Neoplasms - psychology

Young Adult

Health Services Needs and Demand

Neoplasms - therapy

Adolescent

Internal-External Control

Adult

Female

Surveys and Questionnaires

Quality of Life - psychology

Survivors - psychology

Patient Education as Topic

Details

Title: Subtitle: Cancer-related information needs and cancer's impact on control over life influence health-related quality of life among adolescents and young adults with cancer
Creators: Mindy C DeRouen - Cancer Prevention Institute of California, 2201 Walnut Ave, Suite 300, Fremont, CA, USA
Ashley Wilder Smith - Control and Population Sciences, National Cancer Institute, National Institutes of Health, 6130 Executive Blvd, Bethesda, MD, USA
Li Tao - Department of Medicine, Stanford University School of Medicine, 300 Pasteur Drive, Stanford, CA, USA
Keith M Bellizzi - Department of Human Development and Family Studies, University of Connecticut, 348 Mansfield Rd, Storrs, CT, USA
Charles F Lynch - Department of Epidemiology, University of Iowa, 105 River St, Iowa City, IA, USA
Helen M Parsons - 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
Erin E Kent - 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
Theresa H M Keegan - Department of Health Research and Policy, Stanford University School of Medicine, Stanford, CA, USA
AYA HOPE Study Collaborative Group
Resource Type: Journal article
Publication Details: Psycho-oncology (Chichester, England), Vol.24(9), pp.1104-1115
DOI: 10.1002/pon.3730
PMID: 25611943
PMCID: PMC4510026
NLM abbreviation: Psychooncology
ISSN: 1057-9249
eISSN: 1099-1611
Publisher: England
Grant note: N01PC35142 / NCI NIH HHS P30 ES005605 / NIEHS NIH HHS N01PC54404 / NCI NIH HHS N01PC54402 / NCI NIH HHS N01-PC-35142 / NCI NIH HHS N01PC35139 / NCI NIH HHS P30 CA086862 / NCI NIH HHS K07 CA175063 / NCI NIH HHS N01PC35145 / NCI NIH HHS N01-PC-35136 / NCI NIH HHS N01PC35143 / NCI NIH HHS N01-PC-35145 / NCI NIH HHS N01-PC-35139 / NCI NIH HHS N01-PC-54404 / NCI NIH HHS N01PC35136 / NCI NIH HHS N01-PC-54402 / NCI NIH HHS N01-PC-35143 / NCI NIH HHS
Language: English
Date published: 09/2015
Academic Unit: Epidemiology
Record Identifier: 9983995126502771

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