Unheard and Under‐Supported: Health‐Related Quality of Life in Children, Adolescents, and Young Adults With Sickle Cell Disease
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.
Authors
- Maria Paola Boaro (ORCID: https://orcid.org/0009-0002-8969-4661)
- Elizabeth Maran
- Anna Chiara Frigo (ORCID: https://orcid.org/0000-0001-9705-4459)
- Raffaella Colombatti (ORCID: https://orcid.org/0000-0001-9797-0457)
- Desiré Fantasia
- Maria Elisa Delle Fave
- Ilaria Baido
- Giulia Reggiani
Institutions
- University of Padua (IT)
- Azienda Ospedale - Università Padova (IT)
- Città della Speranza Foundation (IT)
Publication Details
- Journal
- Pediatric Blood & Cancer
- Published
- 2026-03-13
- DOI
- https://doi.org/10.1002/1545-5017.70179
- Primary Topic
- Hemoglobinopathies and Related Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00