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Health-related quality of life profiles in adolescents and young adults with chronic conditions

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Abstract

Purpose

To assess health-related quality of life (HRQOL) among adolescents and young adults (AYAs) with chronic conditions.

Methods

AYAs (N = 872) aged 14–20 years completed NIH’s Patient-Reported Outcomes Measurement Information System® (PROMIS®) measures of physical function, pain interference, fatigue, social health, depression, anxiety, and anger. Latent profile analysis (LPA) was used to group AYAs into HRQOL profiles using PROMIS T-scores. The optimal number of profiles was determined by model fit statistics, likelihood ratio test, and entropy. Multinomial logistic regression models were used to examine how LPA’s HRQOL profile membership was associated with patient demographic and chronic conditions. The model prediction accuracy on profile membership was evaluated using Huberty’s I index with a threshold of 0.35 for good effect.

Results

A 4-profile LPA model was selected. A total of 161 (18.5%), 256 (29.4%), 364 (41.7%), and 91 (10.4%) AYAs were classified into Minimal, Mild, Moderate, and Severe HRQOL Impact profiles. AYAs in each profile had distinctive mean scores with over a half standard deviation (5-points in PROMIS T-scores) of difference between profiles across most HRQOL domains. AYAs who were female or had conditions such as mental health condition, hypertension, and self-reported chronic pain were more likely to be in the Severe HRQOL Impact profile. The Huberty’s I index was 0.36.

Conclusions

Approximately half of AYAs with a chronic condition experience moderate to severe HRQOL impact. The availability of risk prediction models for HRQOL impact will help to identify AYAs who are in greatest need of closer clinical care follow-up.

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Data availability

The study data contain confidential patient information and cannot be deposited to a public repository.

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Acknowledgements

PROMIS® was funded with cooperative agreements from the National Institutes of Health (NIH) Common Fund Initiative U01AR052181. See www.healthmeasures.net for additional information on the PROMIS® initiative. Dr. Suwei Wang is a Measurement and Regulatory Science (MaRS) fellow at Duke University and is funded by Takeda Pharmaceutical. Dr. Cara J. Arizmendi is a MaRS fellow at Duke University and is funded by AstraZeneca.

Funding

PROMIS® was funded with cooperative agreements from the National Institutes of Health (NIH) Common Fund Initiative U01AR052181. See www.nihpromis.org for additional information on the PROMIS® initiative. Dr. Suwei Wang is a Measurement and Regulatory Science (MaRS) fellow at Duke University and is funded by Takeda Pharmaceutical Company. Dr. Cara J. Arizmendi is a MaRS fellow at Duke University and is funded by AstraZeneca.

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Authors and Affiliations

  1. Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, 215 Morris Street; Suite 230, DUMC 104023, Durham, NC, 27701, USA

    Suwei Wang, Cara J. Arizmendi, Dandan Chen, Li Lin & Bryce B. Reeve

  2. Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine, Durham, NC, USA

    Dan V. Blalock

  3. Health Services Research and Development, Durham Veterans Affairs Medical Center, Durham, NC, USA

    Dan V. Blalock

  4. Department of Psychology and Neuroscience, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    David Thissen

  5. Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, Memphis, TN, USA

    I-Chan Huang

  6. Department of Medicine, University of North Carolina at Chapel Hill, School of Medicine, Chapel Hill, NC, USA

    Darren A. DeWalt

  7. Department of Pediatrics, Duke University School of Medicine, Durham, NC, USA

    Bryce B. Reeve

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  1. Suwei Wang
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  2. Cara J. Arizmendi
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  7. I-Chan Huang
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  9. Bryce B. Reeve
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Contributions

Conceptualization, methodology, formal analysis, results interpretation, first draft, draft revision, final draft approval.

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Correspondence to Bryce B. Reeve.

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This study was performed in line with the principles of the Declaration of Helsinki. The current study was ruled exempt from IRB review by the Duke University Health System.

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Wang, S., Arizmendi, C.J., Blalock, D.V. et al. Health-related quality of life profiles in adolescents and young adults with chronic conditions. Qual Life Res 32, 3171–3183 (2023). https://doi.org/10.1007/s11136-023-03463-5

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