HRQoL in short-stature children: The role of PROMs and ObsROMs
A comprehensive assessment of health-related quality of life (HRQoL) in short-stature pediatric patients requires the use of both patient-reported outcome measures (PROMs) and observed reported outcome measures (ObsROMs), according to a study that found this approach captures the multifaceted impact of short-stature conditions across physical, emotional, and social domains.
In the study, which focused on children diagnosed with achondroplasia (ACH), growth hormone deficiency (GHD), isolated growth hormone deficiency (IGHD), and small-for-gestational-age (SGA), 53 studies published between 1998 and 2023 were analyzed.
Among the frequently employed instruments were the Quality of Life in Short Stature Youth (QoLISSY), Paediatric Quality of Life Inventory (PedsQL), and KIDSCREEN. These tools provided insights into HRQoL perceptions across different age groups. The review also noted the adaptation of adult HRQoL measures for adolescents, pointing to a need for more age-appropriate tools.
The integration of PROMs and ObsROMs in assessing HRQoL was highlighted as a comprehensive approach, considering both subjective patient perspectives and observed outcomes.
Looking ahead, the review calls for more rigorous research methodologies, including comprehensive search strategies and longitudinal studies with diverse populations. It also emphasizes the development of age-appropriate HRQoL assessment tools.
Reference
Adedeji A, Witt S, Innig F, et al. A comprehensive systematic review of health-related quality of life measures in short stature paediatric patients. Endocrine. 2024;doi: 10.1007/s12020-024-03938-6. Epub ahead of print. PMID: 39017834.