Work

Quality of life of children affected by rare diseases: a systematic review and meta-analysis

Year: 2026

Type: review

Study designs: Systematic Review, Meta-Analysis

Abstract: The aim of this study was to analyze, through a systematic review and meta-analysis, the perceived quality of life (QoL) of children diagnosed with rare diseases and to examine potential moderating variables. Twenty-four samples (k = 24; N = 1030) were identified in 8 studies that met the inclusion criteria. Results showed good levels of quality of life, although perceived quality of life was lower compared to the general population. Substantial heterogeneity was found across studies (I² = 86.7%). Meta-regression analyses identified significant moderating effects for geographic region, type of measurement instrument, and type of disease. No evidence of publication bias was detected (Egger’s test, p = .62). These findings highlight the need to strengthen comprehensive care, healthcare coordination and psychosocial support for affected children and their families

Source: Revista sobre la infancia y la adolescencia

DOI: 10.4995/reinad.2026.22075

Authors: Susana Gomez-Redondo, Victor Gonzalez-Lopez, Alberto Soto-Sánchez, Borja Romero-Gonzalez

Institution: Universidad de Valladolid

Language: English

Topic: Family and Disability Support Research

Subfield: Clinical Psychology

Field: Psychology

Domain: Social Sciences

SDGs: Good health and well-being, Reduced inequalities

Open Access status: diamond

Funder: Universidad de Valladolid