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Development and Initial Validation of a Frailty Score for Pediatric Patients with Congenital and Acquired Heart Disease

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Abstract

Frailty is a multi-dimensional clinical syndrome that is associated with increased morbidity and mortality and decreased quality of life. Children/adolescents with heart disease (HD) perform significantly worse for each frailty domain compared to non-HD peers. Our study aimed to create a composite frailty score (CFS) that can be applied to children/adolescents with HD and evaluate associations between the CFS and outcomes. Children and adolescents (n = 30) with HD (73% single ventricle, 20% heart failure, 7% pulmonary hypertension) were recruited from 2016 to 2017 (baseline). Five frailty domains were assessed at baseline using measures validated for pediatrics: (1) Slowness: 6-min walk test; (2) Weakness: handgrip strength; (3) Fatigue: PedsQL Multi-dimensional Fatigue Scale; (4) Body composition: triceps skinfold thickness; and (5) Physical activity questionnaire. Frailty points per domain (range = 0–5) were assigned based on z-scores or raw questionnaire scores and summed to produce a CFS (0 = least frail; 25 = most frail). Nonparametric bootstrapping was used to identify correlations between CFS and cross-sectional change in outcomes over 2.2 ± 0.2 years. The mean CFS was 12.5 ± 3.5. In cross-sectional analyses of baseline data, correlations (|r|≥ 0.30) were observed between CFS and NYHA class, the number of ancillary specialists, total prescribed medications, heart failure medications/day, exercise test derived chronotropic index and percent predicted VO2peak, and between child and parent proxy PEDsQL. At follow-up, CFS was correlated with an increase in the number of heart failure medications (r = 0.31). CFS was associated with cross-sectional outcomes in youth with heart disease. Longitudinal analyses were limited by small sample sizes due to loss to follow-up.

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Funding

David White is supported by the NIH and NHLBI (K23HL159325). No other funding was received to assist with the preparation of this manuscript.

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Authors and Affiliations

  1. Ward Family Heart Center, Children’s Mercy Hospital, 2401 Gillham Road, Kansas City, MO, 64108, USA

    Sarah Studyvin, Brian F. Birnbaum, Jami Gross-Toalson, Girish Shirali & David A. White

  2. School of Medicine, University of Missouri Kansas City, Kansas City, MO, USA

    Brian F. Birnbaum, Vincent S. Staggs, Jami Gross-Toalson, Girish Shirali & David A. White

  3. Biostatistics & Epidemiology Core, Health Services & Outcomes Research, Children’s Mercy Hospital, Kansas City, MO, USA

    Vincent S. Staggs

  4. Department of Child Health, University of Missouri, Columbia, MO, USA

    Chaitanya Panchangam

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Contributions

All authors contributed to the study’s conception and design. Material preparation, data collection, and analysis were performed by BB, DW, CP, GS, JG-T, SS, and VS. The first draft of the manuscript was written by SS, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

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Correspondence to David A. White.

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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. The study was approved by the Human Investigation Committee (IRB) of the Children’s Mercy Medical Center, Kansas City.

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Studyvin, S., Birnbaum, B.F., Staggs, V.S. et al. Development and Initial Validation of a Frailty Score for Pediatric Patients with Congenital and Acquired Heart Disease. Pediatr Cardiol 45, 888–900 (2024). https://doi.org/10.1007/s00246-022-03045-1

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