Journal of Blood Disorders & Transfusion

Manuela Merelles Pulcini

Publications

• Research Article
  Introducing the Tran Qol: A New Disease-Specific Quality of Life Measure for Children and Adults with Thalassemia Major
  
  Author(s): Robert J Klaassen, Shabbir Alibhai, Melanie Kirby Allen, Katherine Moreau, Manuela Merelles Pulcini, Melissa Forgie, Victor Blanchette, Rena Buckstein, Isaac Odame, Ian Quirt, Karen Yee, Durhane Wong Rieger and Nancy L YoungRobert J Klaassen, Shabbir Alibhai, Melanie Kirby Allen, Katherine Moreau, Manuela Merelles Pulcini, Melissa Forgie, Victor Blanchette, Rena Buckstein, Isaac Odame, Ian Quirt, Karen Yee, Durhane Wong Rieger and Nancy L Young
  
  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, par.. View More»
  DOI: 10.4172/2155-9864.1000150

  Abstract