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

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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.

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Funding

Center for Childhood Cancer Research, Children's Hospital of Philadelphia; Alex's Lemonade Stand Foundation for Childhood Cancer.

Author information

Author notes

  1. Katie Darabos

    Present address: Department of Health Behavior, Society, and Policy, Rutgers School of Public Health, 683 Hoes Lane West, Rm 327, Piscataway, NJ, 08854, USA

  2. Lauren Brumley

    Present address: Department of Psychology, West Chester University, West Chester, PA, USA

  3. Eliana Butler

    Present address: Department of Psychology, Fairleigh Dickinson University, Madison, NJ, USA

  4. Bridget O’Hagan

    Present address: Bristol Myers Squibb, New York, USA

  5. Dare Henry-Moss

    Present address: Independence Blue Cross, Philadelphia, USA

Authors and Affiliations

  1. Division of Oncology, The Children’s Hospital of Philadelphia, Philadelphia, PA, USA

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

  2. The University of Texas Medical Branch, Galveston, TX, USA

    Carole A. Tucker

  3. Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA

    Dava Szalda, Lamia P. Barakat & Lisa A. Schwartz

  4. School of Nursing, University of Pennsylvania, Philadelphia, PA, USA

    Janet A. Deatrick

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Correspondence to Katie Darabos.

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Darabos, K., Tucker, C.A., Brumley, L. et al. Development and validation of a measure of adolescent and young adult goal-based quality of life (MAYA-GQOL). Qual Life Res 32, 2305–2317 (2023). https://doi.org/10.1007/s11136-023-03392-3

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