Development and validation of a subjective end-of-life health literacy scale

Personal health literacy is the ability of an individual to find, understand, and use information and services to inform health-related decisions and actions for oneself and others. The end of life is commonly characterized by the occurrence of one or several diseases, the use of many different types of healthcare services, and a need to make complex medical decisions that may involve challenging tradeoffs, such as choices between quality and length of life. Although end-of-life care issues concern most people at some point in life, individuals’ competencies to deal with those questions have rarely been explored. This study aims to introduce, develop, and validate an instrument to measure individuals’ self-assessed competencies to deal with end-of-life medical situations, the Subjective End-Of-Life Health Literacy Scale (S-EOL-HLS), in a sample of older adults aged 50+ living in Switzerland who participated in wave 8 (2019/2020) of the Survey of Health, Ageing, and Retirement in Europe. The S-EOL-HLS uses a series of questions on self-rated difficulties in understanding end-of-life medical jargon, defining in advance which end-of-life medical treatments to receive or refuse, and communicating related choices. Aside from conducting exploratory and confirmatory factor analysis to evaluate the construct validity, we compared measurements from the S-EOL-HLS to respondents’ general health literacy measured with the European Health Literacy Survey questionnaire. We obtained a three-factor model with acceptable fit properties (CFI = 0.993, TLI = 0.992, RMSEA = 0.083, SRMR = 0.061) and high reliability (α = 0.93). The partial associations between the health literacy scores from the two scales and respondents’ sociodemographic characteristics were similar; however, individuals with higher end-of-life health literacy scores appeared to have more positive attitudes towards end-of-life care planning outcomes. The S-EOL-HLS demonstrates reliable and consistent results, making the instrument suitable for older adults in population surveys.