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. 2017 Sep;26(9):2551-2562.
doi: 10.1007/s11136-017-1572-y. Epub 2017 Apr 25.

Measuring hemophilia caregiver burden: validation of the Hemophilia Caregiver Impact measure

Carolyn E Schwartz  1   2 , Victoria E Powell  3 , Adi Eldar-Lissai  4
Affiliations

Measuring hemophilia caregiver burden: validation of the Hemophilia Caregiver Impact measure

Carolyn E Schwartz et al. Qual Life Res. 2017 Sep.

Abstract

Aims: The purpose of this article is to describe the psychometric development of the Hemophilia Caregiver Impact measure.

Methods: Qualitative interviews (n = 22) and a cross-sectional web-based study (n = 458) were implemented with caregivers of people with hemophilia. Classical test theory and item response theory analyses were implemented to evaluate the psychometric characteristics of the measure.

Results: The study sample had a mean age of 39 and a median level of college education. It was predominantly female (88%), and had an average of two children. 85% of this study sample had at least one child with hemophilia. The final 36-item Hemophilia Caregiver Impact measure is composed of seven subscales assessing relevant negative aspects of caregiver impact (Burden Summary) as well as one subscale reflecting a positive aspect of caregiver impact (Positive Emotions). These two summary scores are orthogonal and can be used together in analyses examining negative and positive aspects of caregiver impact. The items included within each subscale reflect a unidimensional construct, demonstrate good item information and trace lines, and lack of local dependence. The resulting subscales demonstrate high reliability, and good construct validity. They show moderate incremental and discriminant validity.

Conclusions: The Hemophilia Caregiver Impact measure is a useful new tool for clinical research on hemophilia. In addition to having eight relevant subscales, the measure can also be summarized with two scores. This versatility can be useful in analyzing studies with very small samples, which is to be expected when dealing with a rare condition like hemophilia.

Keywords: Burden; Caregiver; Hemophilia; Item response theory; Measure; Psychometrics.

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Conflict of interest statement

Dr. Schwartz and Ms. Powell declare that they have no conflict of interest. Dr. Eldar-Lissai was an employee and shareholder of Biogen.

Figures

Fig. 1
Fig. 1
Conceptual model for the Hemophilia Caregiver Impact measure. The negative (‘yin’) and positive (‘yang’) aspects of the hemophilia caregiver experience are captured by the eight subscale domains
Fig. 2
Fig. 2
Evidence for incremental validity. The pseudo-R 2 is shown for hierarchical models explaining hemophilia severity. The PedsQL alone explained the least variance. Explained variance increased when the Burden Summary score was added, and when the Positive Emotions score was added. It was highest when both the Burden Summary and Positive Emotions scores were added to model along with the PedQL score
See this image and copyright information in PMC

References

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