Introducing the Tran Qol: A New Disease-Specific Quality of Life Measure for Children and Adults with Thalassemia Major
Robert J Klaassen1*, Shabbir Alibhai2, Melanie Kirby Allen3, Katherine Moreau4, Manuela Merelles Pulcini3, Melissa Forgie5, Victor Blanchette3, Rena Buckstein6, Isaac Odame3, Ian Quirt7, Karen Yee7, Durhane Wong Rieger8 and Nancy L Young9
- Corresponding Author:
- Robert Klaassen
Division of Hematology/Oncology
Department of Pediatrics
Children’s Hospital of Eastern Ontario
401 Smyth, Ottawa, Ontario, Canada
Tel: (613) 737-2393 2210
Fax: (613) 738-4828
E-mail: [email protected]
Received Date: June 13, 2013; Accepted Date: July 19, 2013; Published Date: July 22, 2013
Citation: Klaassen RJ, Alibhai S, Allen MK, Moreau K, Pulcini MM, et al (2013) Introducing the Tran Qol: A New Disease-Specific Quality of Life Measure for Children and Adults with Thalassemia Major. J Blood Disord Transfus 4:150. doi: 10.4172/2155-9864.1000150
Copyright: © 2013 Klaassen RJ, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Background: Patients with thalassemia major require red cell transfusions for survival and have to deal with iron overload and chelation. Chelation is burdensome, traditionally involving nightly prolonged subcutaneous infusion therapy. We developed a disease-specific tool for these patients (TranQol) to measure their unique quality of life issues.
Methods: Pediatric and adult thalassemia health care professionals and quality of life methodology experts generated 69 potential items. 74 further questions were generated through interviews with patients (pediatric and adult) and parents.
Results: 120 participants contributed: 16 healthcare workers, 31 children and 30 adults with thalassemia and 43 parents. Duplicate and infrequent questions were discarded leaving 58 items. Three self-reported questionnaires (child, parent and adult) and one child proxy-report for parents were developed. Questionnaire length ranged from 29 (child’s) to 39 (parent’s). Questions were grouped into four domains: physical health, emotional health, family functioning, and school and career functioning. A fifth category on sexual activity included only one item. Cognitive debriefing was done by interviewing additional children, parents, and adults. As a result, three items were added, one was deleted and 16 were modified.
Conclusion: The TranQol is a new disease-specific quality of life measure for thalassemia major patients developed using rigorous methodology.