Abstract

BackgroundA new caregiver burden questionnaire for heart failure (CBQ-HF v1.0) was developed based on previously conducted qualitative interviews with HF caregivers and with input from HF clinical experts. Version 1.0 of the CBQ-HF included 41 items measuring the burden associated with caregiving in the following domains: physical, emotional/psychological, social, and impact on caregiver’s life. Following initial development, the next stage was to evaluate caregivers’ understanding of the questionnaire items and their conceptual relevance.MethodsTo evaluate the face and content validity of the new questionnaire, cognitive interviews were conducted with caregivers of heart failure patients. The cognitive interviews included a “think aloud” exercise as the patient completed the CBQ-HF, followed by more specific probing questions to better understand caregivers’ understanding, interpretation and the relevance of the instructions, items, response scales and recall period.ResultsEighteen caregivers of heart failure patients were recruited. The mean age of the caregivers was 50 years (SD = 10.2). Eighty-three percent of caregivers were female and most commonly the patient was either a spouse (44%) or a parent (28%). Among the patients 55% were NYHA Class 2 and 45% were NYHA Class 3 or 4. The caregiver cognitive interviews demonstrated that the CBQ-HF was well understood, relevant and consistently interpreted. From the initial 41 item questionnaire, fifteen items were deleted due to conceptual overlap and/or item redundancy. The final 26-item CBQ-HF (v3.0) uses a 5-point Likert severity scale, assessing 4 domains of physical, emotional/psychological, social and lifestyle burdens using a 4-week recall period.ConclusionsThe CBQ-HF (v3.0) is a comprehensive and relevant measure of subjective caregiver burden with strong content validity. This study has established that the CBQ-HF (v3.0) has strong face and content validity and should be valuable as an outcomes measure to help understand and monitor the relationship between patient heart failure severity and caregiver burden. A Translatability AssessmentSM of the measure has since been performed confirming the cultural appropriateness of the measure and psychometric validation is planned for the future to further explore the reliability, and validity of the new questionnaire in a larger caregiver sample.

Highlights

  • A new caregiver burden questionnaire for heart failure (CBQ-Heart Failure (HF) v1.0) was developed based on previously conducted qualitative interviews with HF caregivers and with input from HF clinical experts

  • Quality of life in HF patients is significantly impaired, predominantly as a result of the physical limitations imposed by the disease which can lead to social limitations and emotional problems [3,4]

  • Qualitative interviews were conducted with 18 HF caregivers to evaluate the face and content validity of version 1.0 of the CBQ-HF

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Summary

Introduction

A new caregiver burden questionnaire for heart failure (CBQ-HF v1.0) was developed based on previously conducted qualitative interviews with HF caregivers and with input from HF clinical experts. Version 1.0 of the CBQ-HF included 41 items measuring the burden associated with caregiving in the following domains: physical, emotional/psychological, social, and impact on caregiver’s life. Quality of life in HF patients is significantly impaired, predominantly as a result of the physical limitations imposed by the disease which can lead to social limitations and emotional problems [3,4]. The importance of effective caregivers on HF patient outcomes has been shown in improved quality of life [8], lower hospitalization rates [9,10] and reduced mortality [9,10,11]. The measurement of caregiver burden is becoming increasingly important, as the role of caregivers in supporting individuals with chronic illnesses such as HF is increasingly recognised by wider society and the scientific community [17]

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