What question did this study set out to answer?

To assess health-related quality of life among children, adolescents, and young adults with sickle cell disease in Italy.

March 15, 2026Open Access

Unheard and Under‐Supported: Health‐Related Quality of Life in Children, Adolescents, and Young Adults With Sickle Cell Disease

Key Points

To assess health-related quality of life among children, adolescents, and young adults with sickle cell disease in Italy.
Conducted first assessment of HRQoL in Italian youths with SCD
Examined patient-caregiver perception discrepancies
Identified critical vulnerability period during adolescence
Adolescence showed worsening health-related quality of life outcomes
Significant unmet emotional needs were recognized
Need for targeted interventions and psychological support was emphasized

Abstract

This first assessment of HRQoL in Italian youths with SCD identifies adolescence as a critical vulnerability period with worsening outcomes and unrecognized emotional needs. Significant patient-caregiver perception discrepancies highlight unmet needs. Findings underscore the need to integrate HRQoL measures into routine care and develop targeted interventions for adolescents, including enhanced psychological support and structured transition programs.

Read Full Paperexternally

Bookmark

View Full Paper

Cite This Study

Fantasia et al. (Fri,) studied this question.

synapsesocial.com/papers/69b606d583145bc643d1d3e6 https://doi.org/https://doi.org/10.1002/1545-5017.70179

Bookmark

View Full Paper