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

Abstract

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.

End-of-life health literacy, knowledge and behaviours towards advance care planning among older adults: cross-sectional evidence from Switzerland

“…The first dimension, functional EOL health literacy, measures individuals' comprehension of common EOL medical terms. 35 This dimension appeared to be the least influential, as its associations with EOL knowledge and behaviours towards ACP were not statistically significant. These nonsignificant results show that merely possessing the basic skills to understand EOL medical terms may be insufficient for individuals to have higher EOL knowledge and to engage in the ACP process.…”

“…To fill this gap, the present study uses the recently validated Subjective End-of-life Health Literacy Scale (S-EOL-HLS) 35 to investigate the associations between individuals' EOL health literacy and their knowledge and behaviours toward ACP among a population-based sample of adults aged 58+ years in Switzerland. The new measure of EOL health literacy was the first instrument developed to assess the level of competencies individuals perceive in dealing with EOL care situations and decision-making.…”

“…The tool was demonstrated to be a reliable and valid instrument for measuring older adults' self-perceived EOL health literacy. 35 In this study, we define EOL health literacy as the capacity to obtain, process and understand basic health information and services needed to make appropriate EOL decisions. In contrast, EOL knowledge refers to an individual's understanding of specific aspects of EOL care, such as palliative care options, legal aspects of ACP and medical interventions commonly used at the EOL.…”

“…The Swiss Paper-and-Pencil questionnaire included the items from the S-EOL-HLS, 35 a novel instrument designed to measure individuals' self-perceived competencies in managing EOL care situations and decision-making. The scale was previously developed and validated, demonstrating that the S-EOL-HLS is a reliable and valid tool for measuring EOL health literacy, and offers insights into individuals' readiness to engage in EOL planning and decision-making.…”

“…The validation paper also highlighted the potential of the S-E-OL-HLS to identify individuals with limited EOL health literacy and guide interventions aimed at enhancing their understanding and engagement in EOL care planning. 35 The instrument consists of 18 items (see online supplemental appendix 2) divided into three dimensions (1) functional EOL health literacy, where respondents have to rate their level of understanding EOL medical terms; (2) interactive EOL health literacy, which assesses respondents' self-rated ease in defining treatment goals, in finding information on EOL planning options and in communicating about EOL issues; and (3) critical EOL health literacy, which asks respondents to indicate their self-rated competency in choosing medical treatments. Respondents evaluate each item on a 4-point Likert scale with answers ranging from 'very easy', 'fairly easy', 'fairly difficult', to 'very difficult'.…”