The development and validation of a shorter version of the Canadian Health Care Evaluation Project Questionnaire (CANHELP Lite): a novel tool to measure patient and family satisfaction with end-of-life care

Context: The recently developed Canadian Health Care Evaluation Project (CANHELP) questionnaire, which can be used to assess both patient and family satisfaction with end-of-life care, takes 40-60 minutes to complete. The length of the interview may limit its uptake and clinical utility; a shorter version would make its use more feasible.

Objectives: The purpose of this study was to develop and validate a shorter version of the CANHELP questionnaire.

Methods: Data were collected using a cross-sectional survey of patients with advanced medical diseases and their family members. Participants completed the long version of CANHELP, a global rating of satisfaction with care (GRS), the FAMCARE scale (family members only), and a quality-of-life (QOL) questionnaire. We reduced the items on the long version based on their relationship to the GRS, the frequency of missing data, the distribution of responses, the redundancy of the items, and focus groups with frontline users. With the remaining items, we assessed internal consistency using Cronbach's alpha, and evaluated construct validity by describing the correlation of the new CANHELP Lite with the full version of CANHELP, GRS, FAMCARE, and the QOL questionnaire scores.

Results: A total of 363 patients and 193 family members participated in this study. The patient version was reduced from 37 items to 20 items and the caregiver version was reduced from 38 items to 21 items. Cronbach's alphas ranged from 0.68 to 0.93 for all domains of both the patient and caregiver questionnaires. We observed a high degree of correlation between CANHELP Lite domains and overall scores and the same domains and overall scores for the full version of CANHELP. In addition, we observed moderate to strong correlation between the CANHELP Lite overall satisfaction scores and the GRS questions. There was moderate correlation between the overall family member CANHELP Lite score and overall FAMCARE score (r = 0.45) and this was similar to the correlation between the full version of CANHELP and FAMCARE scores (r = 0.41). CANHELP Lite correlated more strongly with the QOL subscale on health care than the other QOL subscales.

Conclusion: The CANHELP Lite questionnaire is a valid and internally consistent instrument to measure satisfaction with end-of-life care.