Development and Psychometric Testing of the Hemophilia Well-being Index
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Hemophilia experts have recommended that screening tools should be introduced into clinical practice to assess patients’ needs and perceptions.
The present work aims to describe the development of a brief instrument for the assessment of subjective well-being of men with hemophilia within an international study involving participants from 10 countries.
Several steps were implemented toward achieving this objective: (1) literature review; (2) semistructured interviews in different Ibero-American countries; (3) exploratory qualitative content analysis of the interviews; (4) definition of the construct being evaluated; (5) generation of preliminary items; (6) interjudgment ratings of the items, by both patients and experts, to assess comprehension and review items; and (7) psychometric testing of an international sample of 342 patients with hemophilia.
Exploratory qualitative study allowed the development of an initial pool of items which adress salient life domains related to well-being. Interjudment ratings led to improvents in the wording and comprehensibilty of the preliminary pool of questions. Psychometric testing allowed items to be reviewed according to empirical criteria. The assessment of the underlying structure of the questionnaire by exploratory factor analysis (generalized least squares) showed a unidimensional model explaining 59.7 % of variance. Adequate internal consistency (0.91) and test–retest reliability (0.82) were observed for the instrument. Associations with other outcome measures and clinical indicators also provided a range of evidence for the instrument’s validity.
This study presents a new disease-specific tool which is able to assess subjective well-being in hemophilia patients.The instrument is available in Spanish, Portuguese (Brazilian), and English language versions for use in future research.
KeywordsWell-being Mental health Measurement Hemophilia HWBI Adults
The author wishes to thank the experts, health professionals, and voluntary patients from the Ibero-American countries who took part in the study and carried out data collection as part of this work. The present study was partially supported by grants to the author from “Centro de Estudios para América Latina (UAM),” reference PD 02-541A-Q-640 (during the period 2002–2004), and “Consejería de Educación, Comunidad de Madrid/UAM,” reference CCG08-UAM/HUM-4462 (during the period 2009–2010).
Conflict of Interest
The author has no interests that might be perceived as posing a conflict or bias.
- 1.World Federation of Hemophilia. Guidelines for the management of hemophilia. Quebec: WFH; 2005.Google Scholar
- 7.Remor E. Development of a disease-specific measure to the assessment of quality of life in adult patients living with hemophilia in Latin America: the HemoLatin-QoL. Interam J Psychol. 2005;39:211–20.Google Scholar
- 8.Remor, E. Predictors of treatment difficulties and satisfaction with haemophilia therapy in adult patients. Haemophilia. 2011;17. doi: 10.1111/j.1365-2516.2011.02578.x.
- 10.Bullinger M. Quality of life—definition, conceptualization and implications—a methodologist’s view. Theor Surg. 1991;6:143–9.Google Scholar
- 14.Nunnally JC, Bernstein IH. Psychometric theory. 3rd ed. New York: McGraw-Hill; 1994.Google Scholar
- 15.The EuroQol Group. EuroQol—a new facility for the measurement of health-related quality of life. The EuroQol Group. Health Policy. 1990;16(3):199–208.Google Scholar
- 16.Ware JE, Kosinski M, Bjorner JB, Turner-Bowker DM, Gandek B, Maruish ME. User’s manual for the SF-36v2 Health Survey. 2nd ed. Lincoln: QualityMetric Incorporated; 2007.Google Scholar
- 17.Corbin JM, Strauss AC. Basics of qualitative research: techniques and procedures for developing grounded theory. 3rd ed. London: Sage; 2008.Google Scholar
- 18.Lord FM, Novick MR. Statistical theories of mental tests scores. Reading: Addison-Wesley; 1968.Google Scholar
- 19.Anastasi A, Urbina S. Psychological testing. Englewood Cliffs: Prentice Hall; 1997.Google Scholar
- 22.Brow TA. Confirmatory factor analysis for applied research. New York: Guilford; 2006.Google Scholar