Significant improvement of child physical and emotional functioning after familial haploidentical stem cell transplant
SK Parsons, AM Rodday, RA Weidner… - Bone Marrow …, 2022 - nature.com
Allogeneic stem cell transplantation (AlloSCT) represents the only curative therapy for sickle
cell disease (SCD). However, limited availability of matched related donors and suboptimal …
cell disease (SCD). However, limited availability of matched related donors and suboptimal …
Sickle Cell Health Awareness, Perspectives, and Experiences (SHAPE) survey: Perspectives of adolescent and adult patients, caregivers, and healthcare …
M de Montalembert, A Anderson… - European Journal of …, 2024 - Wiley Online Library
Objectives Sickle cell disease (SCD) is an inherited disorder that causes lifelong
complications, substantially impacting the physical and emotional well‐being of patients and …
complications, substantially impacting the physical and emotional well‐being of patients and …
Portuguese Validation of the TAPQoL: A Health-Related Quality of Life Instrument for Children Aged 0–6 Years
In Portugal, there are few generic and specific instruments to assess health-related quality of
life (HRQoL) in children, especially those of preschool age. This study aimed to adapt and …
life (HRQoL) in children, especially those of preschool age. This study aimed to adapt and …
The Burden of Sickle Cell Disease on Children and Their Caregivers: Caregiver Reports of Children's Health-Related Quality of Life and School Experiences …
Background Children with sickle cell disease (SCD) experience a multiplex of disease-
related symptoms and complications, including vaso-occlusive crises (VOCs), episodes …
related symptoms and complications, including vaso-occlusive crises (VOCs), episodes …
Impact of hospitalization for vaso‐occlusive crisis on health‐related quality of life in children with sickle cell disease
C Vuong, I Moussa, MM van Muilekom… - Pediatric blood & …, 2023 - Wiley Online Library
Background Sickle cell disease (SCD) is characterized by vaso‐occlusive crises (VOCs) that
impair the health‐related quality of life (HRQoL). The aim of this study is to evaluate the …
impair the health‐related quality of life (HRQoL). The aim of this study is to evaluate the …
Ecological approach to sickle cell disease and environmental quality assessment in Guadeloupe (French West Indies)
M Cholley-Gomez, S Ruffié, B Tressières… - Cogent Social …, 2022 - Taylor & Francis
Abstract Sickle Cell Disease (SCD) has many psychosocial impacts and affects social
participation of young people. In Guadeloupe (French West Indies), where this blood …
participation of young people. In Guadeloupe (French West Indies), where this blood …
Quality of life in children with diseases causing central airway obstruction: Reliability and validity of the TAPQOL questionnaire
C Díaz‐García, J Valverde‐Molina… - Pediatric …, 2023 - Wiley Online Library
Introduction The aim of this study was to analyse the psychometric performance (reliability
and validity) of the TAPQOL questionnaire in measuring the global quality of life in children …
and validity) of the TAPQOL questionnaire in measuring the global quality of life in children …