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.

Ashley Wilder Smith, Keith M. Bellizzi, Theresa H Keegan, Brad Zebrack, Vivien W. Chen, Anne Victoria Neale, Ann S. Hamilton, Margarett Shnorhavorian, Charles F. Lynch

Research output: Contribution to journalArticle

132 Citations (Scopus)

Abstract

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. 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). 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. 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.

Original languageEnglish (US)
Pages (from-to)2136-2145
Number of pages10
JournalJournal of clinical oncology : official journal of the American Society of Clinical Oncology
Volume31
Issue number17
StatePublished - Jun 10 2013
Externally publishedYes

Fingerprint

Young Adult
Quality of Life
Health
Neoplasms
Mental Health
Health Insurance
Hispanic Americans
Population
Fatigue
Linear Models
Demography
Education
Health Surveys
Sarcoma
Age Groups
Pediatrics
Delivery of Health Care
Equipment and Supplies
Therapeutics

ASJC Scopus subject areas

  • Medicine(all)

Cite this

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. / Smith, Ashley Wilder; Bellizzi, Keith M.; Keegan, Theresa H; Zebrack, Brad; Chen, Vivien W.; Neale, Anne Victoria; Hamilton, Ann S.; Shnorhavorian, Margarett; Lynch, Charles F.

In: Journal of clinical oncology : official journal of the American Society of Clinical Oncology, Vol. 31, No. 17, 10.06.2013, p. 2136-2145.

Research output: Contribution to journalArticle

Smith, Ashley Wilder ; Bellizzi, Keith M. ; Keegan, Theresa H ; Zebrack, Brad ; Chen, Vivien W. ; Neale, Anne Victoria ; Hamilton, Ann S. ; Shnorhavorian, Margarett ; Lynch, Charles F. / 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. In: Journal of clinical oncology : official journal of the American Society of Clinical Oncology. 2013 ; Vol. 31, No. 17. pp. 2136-2145.
@article{58d7b82eb0244f98bc6a5bf66dbba631,
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 = "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. 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). 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. 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.",
author = "Smith, {Ashley Wilder} and Bellizzi, {Keith M.} and Keegan, {Theresa H} and Brad Zebrack and Chen, {Vivien W.} and Neale, {Anne Victoria} and Hamilton, {Ann S.} and Margarett Shnorhavorian and Lynch, {Charles F.}",
year = "2013",
month = "6",
day = "10",
language = "English (US)",
volume = "31",
pages = "2136--2145",
journal = "Journal of Clinical Oncology",
issn = "0732-183X",
publisher = "American Society of Clinical Oncology",
number = "17",

}

TY - JOUR

T1 - Health-related quality of life of adolescent and young adult patients with cancer in the United States

T2 - the Adolescent and Young Adult Health Outcomes and Patient Experience study.

AU - Smith, Ashley Wilder

AU - Bellizzi, Keith M.

AU - Keegan, Theresa H

AU - Zebrack, Brad

AU - Chen, Vivien W.

AU - Neale, Anne Victoria

AU - Hamilton, Ann S.

AU - Shnorhavorian, Margarett

AU - Lynch, Charles F.

PY - 2013/6/10

Y1 - 2013/6/10

N2 - 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. 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). 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. 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.

AB - 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. 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). 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. 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.

UR - http://www.scopus.com/inward/record.url?scp=84891417267&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84891417267&partnerID=8YFLogxK

M3 - Article

C2 - 23650427

AN - SCOPUS:84891417267

VL - 31

SP - 2136

EP - 2145

JO - Journal of Clinical Oncology

JF - Journal of Clinical Oncology

SN - 0732-183X

IS - 17

ER -