title: 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.
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.
authors.affiliation: Cancer Prevention Institute of California, 2201 Walnut Ave, Suite 300, Fremont, CA, USA.
authors.forename: Mindy C
authors.initials: MC
authors.lastname: DeRouen
authors.affiliation: Control and Population Sciences, National Cancer Institute, National Institutes of Health, 6130 Executive Blvd, Bethesda, MD, USA.
authors.forename: Ashley Wilder
authors.initials: AW
authors.lastname: Smith
authors.affiliation: Cancer Prevention Institute of California, 2201 Walnut Ave, Suite 300, Fremont, CA, USA.|Department of Medicine, Stanford University School of Medicine, 300 Pasteur Drive, Stanford, CA, USA.
authors.forename: Li
authors.initials: L
authors.lastname: Tao
authors.affiliation: Department of Human Development and Family Studies, University of Connecticut, 348 Mansfield Rd, Storrs, CT, USA.
authors.forename: Keith M
authors.initials: KM
authors.lastname: Bellizzi
authors.affiliation: Department of Epidemiology, University of Iowa, 105 River St, Iowa City, IA, USA.
authors.forename: Charles F
authors.initials: CF
authors.lastname: Lynch
authors.affiliation: 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.
authors.forename: Helen M
authors.initials: HM
authors.lastname: Parsons
authors.affiliation: 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.
authors.forename: Erin E
authors.initials: EE
authors.lastname: Kent
authors.affiliation: Cancer Prevention Institute of California, 2201 Walnut Ave, Suite 300, Fremont, CA, USA.|Department of Health Research and Policy, Stanford University School of Medicine, Stanford, CA, USA.
authors.forename: Theresa H M
authors.initials: TH
authors.lastname: Keegan
mesh_terms: D000293:Adolescent; D000328:Adult; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007389:Internal-External Control; D008297:Male; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010353:Patient Education as Topic; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology* / Q000706:statistics & numerical data; D055815:Young Adult
keywords: adolescent and young adult (AYA); cancer survivor; control; health-related quality of life (HRQOL); information need; oncology