Abstract

Historically, improving EOL care has been hampered by a lack of validated tools to measure quality EOL care. Recently, we developed a novel measurement tool, the CANadian Health care EvaLuation Project (CANHELP) questionnaire, which can be used to assess both patient and family satisfaction with EOL care. Whilst this instrument is reliable, valid, and comprehensively measures the patient (and families) experience with EOL, it takes 40-60 minutes to complete. The length of the interview may preclude its uptake; a shorter version would be more desirable. The purpose of this study is to develop and begin to validate a shorter version of the CANHELP questionnaire. Data were collected by a cross-sectional survey of patients (n=361) with advanced illnesses and their family members (n=255), who completed the long version of CANHELP, a global rating of satisfaction (GRS), FAMCARE (family members only), and a quality of life (QOL) questionnaire. We reduced the items on the long version of CANHELP based on derived importance of individual items and their relationship to global ratings of overall satisfaction, the frequency of missing data, the distribution of responses and focus groups with front line users. With the remaining items, we evaluated construct validity by describing the correlation of the new CANHELP Lite with full version of CANHELP, GRS, FAMCARE, and the QOL questionnaire scores and found it to be satisfactory. The CANHELP Lite questionnaire is a shorter version of the full CANHELP instrument and is a valid instrument to measure satisfaction with EOL care.