title: Health-related quality of life of adolescent and young adult patients with cancer in the United States: the Adolescent and Young Adult Health Outcomes and Patient Experience study.
abstract: OBJECTIVE
  Adolescents and young adults (AYAs) diagnosed with cancer face numerous physical, psychosocial, and practical challenges. This article describes the health-related quality of life (HRQOL) and associated demographic and health-related characteristics of this developmentally diverse population.
  
  
  METHODS
  Data are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort of 523 AYA patients with cancer, ages 15 to 39 years at diagnosis from 2007 to 2009. Comparisons are made by age group and with general and healthy populations. Multiple linear regression models evaluated effects of demographic, disease, health care, and symptom variables on multiple domains of HRQOL using the Pediatric Quality of Life Inventory (PedsQL) and the Short-Form Health Survey 12 (SF-12).
  
  
  RESULTS
  Overall, respondents reported significantly worse HRQOL across both physical and mental health scales than did general and healthy populations. The greatest deficits were in limitations to physical and emotional roles, physical and social functioning, and fatigue. Teenaged patients (ages 15 to 17 years) reported worse physical and work/school functioning than patients 18 to 25 years old. Regression models showed that HRQOL was worse for those in treatment, with current/recent symptoms, or lacking health insurance at any time since diagnosis. In addition, sarcoma patients, Hispanic patients, and those with high school or lower education reported worse physical health. Unmarried patients reported worse mental health.
  
  
  CONCLUSIONS
  Results suggest that AYAs with cancer have major decrements in several physical and mental HRQOL domains. Vulnerable subgroups included Hispanic patients, those with less education, and those without health insurance. AYAs also experienced higher levels of fatigue that were influenced by current symptoms and treatment. Future research should explore ways to address poor functioning in this understudied group.
authors: Outcomes Research Branch, National Cancer Institute, 6130 Executive Blvd, MSC 7344, Executive Plaza North, Bethesda, MD 20892-7344, USA. smithas@mail.nih.gov
authors: Ashley Wilder
authors: AW
authors: Smith
authors: Keith M
authors: KM
authors: Bellizzi
authors: Theresa H M
authors: TH
authors: Keegan
authors: Brad
authors: B
authors: Zebrack
authors: Vivien W
authors: VW
authors: Chen
authors: Anne Victoria
authors: AV
authors: Neale
authors: Ann S
authors: AS
authors: Hamilton
authors: Margarett
authors: M
authors: Shnorhavorian
authors: Charles F
authors: CF
authors: Lynch
mesh_terms: D000293:Adolescent; D000328:Adult; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000503:physiopathology* / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology; D016896:Treatment Outcome; D014481:United States; D055815:Young Adult
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