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.

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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
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article

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

Maria Paola Boaro, Elizabeth Maran, Anna Chiara Frigo, Raffaella Colombatti et al.
Pediatric Blood & Cancer
Hemoglobinopathies and Related Disorders
article

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

Maria Paola Boaro, Elizabeth Maran, Anna Chiara Frigo, Raffaella Colombatti, Desiré Fantasia, Maria Elisa Delle Fave, Ilaria Baido, Giulia Reggiani
article en

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.

Pediatric Blood & Cancer
University of Padua (IT), Azienda Ospedale - Università Padova (IT), Città della Speranza Foundation (IT)
Openalex Percentile: Top 24%
Hemoglobinopathies and Related Disorders
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Unheard and Under‐Supported: Health‐Related Quality of Life in Children, Adolescents, and Young Adults With Sickle Cell Disease — Maria Paola Boaro, Elizabeth Maran, et al. · Pediatric Blood & Cancer (2026) | TGRS Research Map | TGRS