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Quality of Life Research
Gepubliceerd in: Quality of Life Research 8/2023

23-03-2023

Development and validation of a measure of adolescent and young adult goal-based quality of life (MAYA-GQOL)

Auteurs: Katie Darabos, Carole A. Tucker, Lauren Brumley, Sara King-Dowling, Eliana Butler, Evelyn Stevens, Bridget O’Hagan, Dare Henry-Moss, Janet A. Deatrick, Dava Szalda, Lamia P. Barakat, Lisa A. Schwartz

Gepubliceerd in: Quality of Life Research | Uitgave 8/2023

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Abstract

Purpose

We developed and validated a measure assessing quality of life (QOL) through importance, attainability, and discrepancy of life goals among adolescents and young adults (AYA) with and without cancer. A specific goal-based QOL measure for AYA fills a critical gap in knowledge for AYA who are at a unique life stage, which may include shifts in priorities and goals.

Methods

Through review of our existing AYA databases on goals, the literature, and cognitive interviews we developed the MAYA-GQOL. Items were administered to AYA with cancer (on/off treatment) (n = 124) and healthy AYA controls (n = 103) aged 15–29 years old. Psychometric analyses for comparison with existing QOL measures and discrepancies in perceived importance/attainability of goals were examined.

Results

An item pool of 700 goals, based on prior research, was refined to 173 goals across nine categories: academic, administrative, body, health, job, leisure, interpersonal, intrapersonal, and religion. Validation between the MAYA-GQOL and existing QOL measures was supported. AYA survivors reported fewer overall current goals and fewer administrative, interpersonal, leisure, and religious goals. AYA survivors rated body goal importance significantly higher than healthy controls and intrapersonal goal importance significantly lower. Little discrepancy in importance and attainability across AYA was found.

Conclusions

The MAYA-GQOL represents an innovative way of measuring QOL among AYA by focusing on the relative importance, attainability, and discrepancy of developmentally appropriate goals. The MAYA-GQOL can identify areas of resilience and competence via assessment of important and attainable goals and can further assess how AYA with chronic illness are functioning relative to peers on goal domains relevant to the AYA developmental period.
vorige artikel Construct validity and responsiveness of a health-related symptom index for persons either treated or monitored for anal high-grade squamous intraepithelial lesions (HSIL): AMC-A01/-A03
volgende artikel Ethical and practical considerations related to data sharing when collecting patient-reported outcomes in care-based child health research
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Metagegevens
Titel
Development and validation of a measure of adolescent and young adult goal-based quality of life (MAYA-GQOL)
Auteurs
Katie Darabos
Carole A. Tucker
Lauren Brumley
Sara King-Dowling
Eliana Butler
Evelyn Stevens
Bridget O’Hagan
Dare Henry-Moss
Janet A. Deatrick
Dava Szalda
Lamia P. Barakat
Lisa A. Schwartz
Publicatiedatum
23-03-2023
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 8/2023
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-023-03392-3

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