Document Type : Original Article
Authors
Abstract
BACKGROUND: Clinical evaluations are not sufficient to adequately characterize the morbidity
associated with hemophilia. Quality of life (QoL) of hemophilics and associated factors is not well
explored in Indian research. The present study aimed to measure the QoL in hemophilics and its
association with socio‑demographic characteristics and other characteristics.
MATERIALS AND METHODS: A cross‑sectional study was conducted during June–November 2018.
Two hundred and one hemophilics (age ≥ 4 years) were interviewed with a pre‑tested schedule for
sociodemographic and other relevant variables. QoL was measured by Haemo‑QoL questionnaire for
different pediatric age groups and Haem‑A‑QoL questionnaire for adults and assigned health‑related
QoL scores. Score achieved in each dimension as well as total scores were transformed on scales
ranging from 0 to 100, high values indicate high impairment of QoL. Hemophilic arthropathy was
assessed using the World Federation of Hemophilia Joint Scores. One‑way ANOVA, independent
t‑test, Kruskal–Wallis test, and Spearman correlation analyses were performed using SPSS
version 16.
RESULTS: Mean Haemo‑QoL scores for 4–7 years, 8–12 years, 13–16 years, and >16 years were
43.92 ± 8.09, 37.37 ± 8.62, 32.79 ± 6.66, and 45.92 ± 6.30, respectively. Significant difference was
noted for QoL scores across different age groups, grades of severity, educational, occupational
categories, socioeconomic status classes, marital status, and presence or absence of target joint. Total
QoL scores, as well as scores in some of the dimensions, showed a significant positive correlation
with the World Federation of Hemophilia joint scores by Spearman correlation analysis.
CONCLUSIONS: Improvement of the joint health status by regular physiotherapy is needed to
improve the QoL of hemophilics.
Keywords
quality of life assessment instruments (the WHOQOL). In: Orley J,
Kuyken W, editors. Quality of Life Assessment. International
Perspectives. Berlin: Springer‑Verlag; 1994. p. 41‑57.
2. Guyatt GH, Feeny DH, Patrick DL. Measuring health‑related
quality of life. Ann Intern Med 1993;118:622‑9.
3. Bungay KM, Gouveia WA. Assessment of health‑related quality
of life by health care profissionals. In: Knowlton CH, Penna RP,
editors. Pharmaceutical Care. New York: Chapman & Hall; 1996.
p. 114‑30.
4. Beeton K, Neal D, Lee C. An exploration of health‑related quality
of life in adults with haemophilia – A qualitative perspective.
Haemophilia 2005;11:123‑32.
5. Bradley CS, Bullinger M, McCusker PJ, Wakefield CD,
Blanchette VS, Young NL. Comparing two measures of quality
of life for children with haemophilia: The CHO‑KLAT and the
haemo‑qoL. Haemophilia 2006;12:643‑53.
6. Miners AH, Sabin CA, Tolley KH, Jenkinson C, Kind P, Lee CA.
Assessing health‑related quality‑of‑life in individuals with
haemophilia. Haemophilia 1999;5:378‑85.
7. Barr RD, Saleh M, Furlong W, Horsman J, Sek J, Pai M, et al.
Health status and health‑related quality of life associated with
hemophilia. Am J Hematol 2002;71:152‑60.
8. Beeton K. Evaluation of outcome of care in patients with
haemophilia. Haemophilia 2002;8:428‑34.
9. Haemo‑QoL Group. How to use the right Haemo‑QoL
Q u e s t i o n n a i r e ? H a m b u r g : U n i v e r s i t y H o s p i t a l
Hamburg‑Eppendorf, Centre of Psychosocial Medicine, Institute
and Clinic for Medical Psychology; 2000. Available from: http://
www.haemoqol.de. [Last accessed on 2010 Dec 30].
10. von Mackensen S, Gringeri A; Haem‑A‑QoL Study Group.
Development and pilot testing of a disease‑specific quality of life
questionnaire for adult patients with haemophilia (Haem‑A‑QoL).
Blood 2004;104:2214.
11. Gringeri A, Mantovani L, Mackensen SV. Quality of life
assessment in clinical practice in haemophilia treatment.
Haemophilia 2006;12 Suppl 3:22‑9.
12. Chevallet L, Weatherall JH, von Mackensen S. Linguistic
validation of the Haemo‑QoL and Haem‑A‑QoL for use in
international studies. Value Health 2008;11:A165.
13. Mercan A, Sarper N, Inanir M, Mercan HI, Zengin E, Kiliç SÇ,
et al. Hemophilia‑specific quality of life index (Haemo‑qoL and
haem‑A‑qoL questionnaires) of children and adults: Result of a
single center from Turkey. Pediatr Hematol Oncol 2010;27:449‑61.
14. Ferreira AA, Leite IC, Bustamante‑Teixeira MT, Corrêa CS,
da Cruz DT, Rodrigues Dde O. Health‑related quality of life
in hemophilia: Results of the hemophilia‑specific quality of life
index (Haem‑a‑qol) at a Brazilian blood center. Rev Bras Hematol
Hemoter 2013;35:314‑8.
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