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Validation and reliability of a disease-specific quality of life measure (the TranQol) in adults and children with thalassaemia major.
Br J Haematol 2014; 164(3):431-7BJ

Abstract

This study aimed to demonstrate the validity, reliability and responsiveness of a new disease-specific quality of life (QoL) questionnaire for children and adults with thalassaemia major, the Transfusion-dependent QoL questionnaire (TranQol). 106 participants (51 adults and 55 children) were recruited from six North American thalassaemia treatment centres with a mean age of 20·7 years (standard deviation [SD] 9, range 7-51 years). The mean total TranQol score was 71 (SD 17, 32-97) on a scale of 0-100. Patients with co-morbidities had significantly lower scores (63 vs. 75, P = 0·001). TranQol scores showed substantial agreement (P < 0·001) with the Health Utilities Index Mark 3 (all patients, r = 0·65), the Pediatric QoL (children, r = 0·77) and the Short Form (36) physical (adults, r = 0·69) and mental summary scores (r = 0·76). In the subgroup who rated their QoL as better, there was a 4·0 point (SD 9·0) improvement in TranQol scores, from baseline of 67·1-71·1 one week later (P = 0·008). Test-retest reliability was excellent (intra-class correlation coefficient, 0·93). The TranQol was valid, with acceptable correlation for all administered measures and was reliable and responsive to change. The TranQol can be incorporated into future studies of thalassaemia major.

Authors+Show Affiliations

Department of Pediatrics, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.No affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info available

Pub Type(s)

Journal Article
Research Support, N.I.H., Extramural

Language

eng

PubMed ID

24180641

Citation

Klaassen, Robert J., et al. "Validation and Reliability of a Disease-specific Quality of Life Measure (the TranQol) in Adults and Children With Thalassaemia Major." British Journal of Haematology, vol. 164, no. 3, 2014, pp. 431-7.
Klaassen RJ, Barrowman N, Merelles-Pulcini M, et al. Validation and reliability of a disease-specific quality of life measure (the TranQol) in adults and children with thalassaemia major. Br J Haematol. 2014;164(3):431-7.
Klaassen, R. J., Barrowman, N., Merelles-Pulcini, M., Vichinsky, E. P., Sweeters, N., Kirby-Allen, M., ... Young, N. L. (2014). Validation and reliability of a disease-specific quality of life measure (the TranQol) in adults and children with thalassaemia major. British Journal of Haematology, 164(3), pp. 431-7. doi:10.1111/bjh.12631.
Klaassen RJ, et al. Validation and Reliability of a Disease-specific Quality of Life Measure (the TranQol) in Adults and Children With Thalassaemia Major. Br J Haematol. 2014;164(3):431-7. PubMed PMID: 24180641.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Validation and reliability of a disease-specific quality of life measure (the TranQol) in adults and children with thalassaemia major. AU - Klaassen,Robert J, AU - Barrowman,Nicholas, AU - Merelles-Pulcini,Manuela, AU - Vichinsky,Elliott P, AU - Sweeters,Nancy, AU - Kirby-Allen,Melanie, AU - Neufeld,Ellis J, AU - Kwiatkowski,Janet L, AU - Wu,John, AU - Vickars,Linda, AU - Blanchette,Victor S, AU - Forgie,Melissa, AU - Yamashita,Robert, AU - Wong-Rieger,Durhane, AU - Young,Nancy L, Y1 - 2013/11/03/ PY - 2013/01/21/received PY - 2013/09/17/accepted PY - 2013/11/5/entrez PY - 2013/11/5/pubmed PY - 2014/5/20/medline KW - quality of life KW - questionnaires KW - reproducibility of results KW - thalassaemia KW - validation studies SP - 431 EP - 7 JF - British journal of haematology JO - Br. J. Haematol. VL - 164 IS - 3 N2 - This study aimed to demonstrate the validity, reliability and responsiveness of a new disease-specific quality of life (QoL) questionnaire for children and adults with thalassaemia major, the Transfusion-dependent QoL questionnaire (TranQol). 106 participants (51 adults and 55 children) were recruited from six North American thalassaemia treatment centres with a mean age of 20·7 years (standard deviation [SD] 9, range 7-51 years). The mean total TranQol score was 71 (SD 17, 32-97) on a scale of 0-100. Patients with co-morbidities had significantly lower scores (63 vs. 75, P = 0·001). TranQol scores showed substantial agreement (P < 0·001) with the Health Utilities Index Mark 3 (all patients, r = 0·65), the Pediatric QoL (children, r = 0·77) and the Short Form (36) physical (adults, r = 0·69) and mental summary scores (r = 0·76). In the subgroup who rated their QoL as better, there was a 4·0 point (SD 9·0) improvement in TranQol scores, from baseline of 67·1-71·1 one week later (P = 0·008). Test-retest reliability was excellent (intra-class correlation coefficient, 0·93). The TranQol was valid, with acceptable correlation for all administered measures and was reliable and responsive to change. The TranQol can be incorporated into future studies of thalassaemia major. SN - 1365-2141 UR - https://www.unboundmedicine.com/medline/citation/24180641/Validation_and_reliability_of_a_disease_specific_quality_of_life_measure__the_TranQol__in_adults_and_children_with_thalassaemia_major_ L2 - https://doi.org/10.1111/bjh.12631 DB - PRIME DP - Unbound Medicine ER -