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14-05-2024

Physician and informal care use explained by the Pediatric Quality of Life Inventory (PedsQL) in children with suspected genetic disorders

Auteurs: Asem Berkalieva, Nicole R. Kelly, Ashley Fisher, Samuel F. Hohmann, Noura S. Abul-Husn, John M. Greally, Carol R. Horowitz, Melissa P. Wasserstein, Eimear E. Kenny, Bruce D. Gelb, Bart S. Ferket

Gepubliceerd in: Quality of Life Research | Uitgave 7/2024

Abstract

Purpose

To examine associations between Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and PedsQL Infant Scales with formal health care resource utilization (HCRU) and informal caregiver burden.

Methods

We studied a pediatric cohort of 837 patients (median age: 8.4 years) with suspected genetic disorders enrolled January 2019 through July 2021 in the NYCKidSeq program for diagnostic sequencing. Using linked ~ nine-month longitudinal survey and physician claims data collected through May 2022, we modeled the association between baseline PedsQL scores and post-baseline HCRU (median follow-up: 21.1 months) and informal care. We also assessed the longitudinal change in PedsQL scores with physician services using linear mixed-effects models.

Results

Lower PedsQL total and physical health scores were independently associated with increases in 18-month physician services, encounters, and weekly informal care. Comparing low vs. median total scores, increases were 10.6 services (95% CI: 1.0-24.6), 3.3 encounters (95% CI: 0.5–6.8), and $668 (95% CI: $350–965), respectively. For the psychosocial domain, higher scores were associated with decreased informal care. Based on adjusted linear mixed-effects modeling, every additional ten physician services was associated with diminished improvement in longitudinal PedsQL total score trajectories by 1.1 point (95% confidence interval: 0.6–1.6) on average. Similar trends were observed in the physical and psychosocial domains.

Conclusion

PedsQL scores were independently associated with higher utilization of physician services and informal care. Moreover, longitudinal trajectories of PedsQL scores became less favorable with increased physician services. Adding PedsQL survey instruments to conventional measures for improved risk stratification should be evaluated in further research.

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Titel: Physician and informal care use explained by the Pediatric Quality of Life Inventory (PedsQL) in children with suspected genetic disorders
Auteurs: Asem Berkalieva
Nicole R. Kelly
Ashley Fisher
Samuel F. Hohmann
Noura S. Abul-Husn
John M. Greally
Carol R. Horowitz
Melissa P. Wasserstein
Eimear E. Kenny
Bruce D. Gelb
Bart S. Ferket
Publicatiedatum: 14-05-2024
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 7/2024
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-024-03677-1

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