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Reliability and validity of PROMIS® pediatric family relationships short form in children 8–17 years of age with chronic disease

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Abstract

Purpose

Families play a key role in managing pediatric chronic illness. The PROMIS® pediatric family relationships measure was developed primarily within the general pediatric population. We evaluated the Family Relationships short form in the context of pediatric chronic diseases.

Methods

Children aged 8–17 years with asthma (n = 73), type 1 diabetes (n = 122), or sickle cell disease (n = 80) completed the Family Relationships 8a short form and the PROMIS Pediatric Profile-25′s six domains representing physical, mental, and social health. Parents (N = 275) of these children completed the parent versions of the same measures. We evaluated reliability of the Family Relationships measure using Cronbach’s alpha and IRT-based marginal reliability, and the standard error of measurement (SEM). Convergent/discriminant validity were assessed from correlations between the Family Relationships domain and the PROMIS-25 domains.

Results

SEM increased for scores above the normative mean of 50. Cronbach’s alpha and IRT-estimated marginal reliabilities exceeded 0.80 for children and parents across diseases, except in asthma, where marginal reliability was 0.75 for parents. Scores displayed small to large correlations in the expected directions with social and mental health domains. The largest correlations occurred with parents’ proxy reports of children’s depressive symptoms in sickle cell disease and asthma, r = − 0.60 (95% CI − 0.74, − 0.48) and r = − 0.58 (95% CI − 0.68, − 0.48) respectively.

Conclusions

The Family Relationships 8-item short form demonstrated adequate reliability and convergent/discriminant validity for use in pediatric chronic conditions, though scores above the mean displayed greater uncertainty. Evidence of the measure’s reliability and validity in multiple contexts furthers the case for its use.

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Funding

Research reported in this publication was supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health under Award Number U19 AR069519. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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Authors and Affiliations

  1. Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, H6/558 Clinical Science Center, 600 Highland Avenue, Madison, WI, 53792-4108, USA

    Elizabeth D. Cox

  2. Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, H6/577 Clinical Science Center, 600 Highland Avenue, Madison, WI, 53792-4108, USA

    Jennifer R. Connolly

  3. Department of Population Health Sciences, University of Wisconsin School of Medicine and Public Health, 689 Wisconsin Alumni Research Foundation, 610 Walnut Street, Madison, WI, 53726-2336, USA

    Mari Palta

  4. Department of Biostatistics and Medical Informatics, University of Wisconsin School of Medicine and Public Health, H6/526 Clinical Science Center, 600 Highland Avenue, Madison, WI, 53792-4108, USA

    Victoria P. Rajamanickam

  5. Department of Medicine, Medical College of Wisconsin, 9200 W. Wisconsin Ave, Milwaukee, WI, 53226-3522, USA

    Kathryn E. Flynn

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  1. Elizabeth D. Cox
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  2. Jennifer R. Connolly
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Correspondence to Elizabeth D. Cox.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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All participating parents provided informed consent. Participating children ages 14–17 years also gave informed consent, while children ages 8–13 years provided assent.

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Cox, E.D., Connolly, J.R., Palta, M. et al. Reliability and validity of PROMIS® pediatric family relationships short form in children 8–17 years of age with chronic disease. Qual Life Res 29, 191–199 (2020). https://doi.org/10.1007/s11136-019-02266-x

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  • DOI: https://doi.org/10.1007/s11136-019-02266-x

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