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

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 Sum

SUBMITTER: Schwartz CE 

PROVIDER: S-EPMC5548839 | biostudies-literature | 2017 Sep

REPOSITORIES: biostudies-literature