Taking Care of the Caregivers: A Quality‐of‐Life Measure for the Parents of Children With Transfusion‐Dependent Thalassemia
The median PedsQL FIM score was similar to previously reported scores for parents of children with sickle cell disease. The TranQol parental burden tool demonstrated construct validity was internally reliable (Cronbach's α = 0.94) and had acceptable test-retest reliability (intraclass correlation coefficient [ICC] = 0.81), for future research into TDT. In addition, this tool could also be used to help clinicians assess the impact of the disease on parents to potentially target appropriate support and care that is required.
Authors
- Ellis J. Neufeld (ORCID: https://orcid.org/0000-0001-8092-6281)
- Nancy L. Young (ORCID: https://orcid.org/0000-0002-1739-3299)
- Nicholas Barrowman (ORCID: https://orcid.org/0000-0002-4704-9595)
- Elliott Vichinsky (ORCID: https://orcid.org/0000-0002-0500-9579)
- John K. Wu (ORCID: https://orcid.org/0000-0002-6002-4878)
- Melanie Kirby‐Allen (ORCID: https://orcid.org/0000-0002-9889-8538)
- Janet L. Kwiatkowski (ORCID: https://orcid.org/0000-0001-7103-3406)
- Manuela Merelles‐Pulcini
- Rania S. Khelifi (ORCID: https://orcid.org/0000-0002-5578-1102)
- Robert J. Klaassen (ORCID: https://orcid.org/0000-0002-6913-2808)
Institutions
- St. Jude Children's Research Hospital (US)
- Children's Hospital of Philadelphia (US)
- University of Ottawa (CA)
- Children's Hospital of Eastern Ontario (CA)
- Hospital for Sick Children (CA)
- Highland Hospital (US)
- BC Children's Hospital (CA)
Publication Details
- Journal
- Pediatric Blood & Cancer
- Published
- 2025-11-11
- DOI
- https://doi.org/10.1002/pbc.32163
- Citations
- 1
- Primary Topic
- Hemoglobinopathies and Related Disorders
- Type
- article
- Field-Weighted Citation Impact
- 1.63