Development and pilot testing of a decision aid for the initiation of antipsychotic medications in persons with dementia in long-term care using a systematic approach: a study protocol.

INTRODUCTION: Antipsychotic medications are commonly used in long-term care to treat neuropsychiatric symptoms of dementia despite concerns that their risks (eg, infection, falls, death) may outweigh their benefits. This study protocol outlines the development and pilot testing of a decision aid for antipsychotic medications that is tailored to the information needs of residents with dementia in long-term care and family caregivers (or decision makers). The goals of the decision aid are to help residents and caregivers (1) better understand the risks and benefits of antipsychotic medications in long-term care, and (2) make informed decisions about their use (or non-use). METHODS AND ANALYSIS: This multiphased study is being conducted between October 2016 and September 2018. In phase I, the decision aid will be developed after consultation with a steering group, review of scientific evidence on outcomes associated with pharmacological treatments for neuropsychiatric symptoms of dementia in long-term care, review of guidelines for the use of antipsychotic medications in long-term care, and review of guidelines for writing health information for patients and families. The decision aid will also be alpha-tested and redrafted, as necessary, in phase I. In phase II, implementation and reporting guidelines for the decision aid will be developed in collaboration with Directors of Care in long-term care. In phase III, the decision aid will be (1) beta-tested with residents with dementia in long-term care and caregivers not involved in the design phase, and (2) assessed by an external panel of experts. ETHICS AND DISSEMINATION: Ethical approval for this study has been granted by the Research Ethics Board at the University of Saskatchewan, approval number Beh 16-465. Findings from this study will be disseminated via conference presentations, publications, presentations to policy makers and plain language summaries to residents with dementia in long-term care and their caregivers.

A review of health literacy: Definitions, interpretations, and implications for policy initiatives.

Definitions and interpretations of 'health literacy' have important implications for the delivery of health care and for health policy-related initiatives. We conducted a systematic review and critical analysis to determine the extent to which definitions of health literacy differ in the academic literature, the similarities and differences across definitions, and possible interpretations for the most commonly used definitions. We identified 250 different definitions of health literacy and grouped them into three categories: (i) most commonly used definitions (n=6), (ii) modified versions of these most commonly used definitions (n=133), and (iii) 'other' definitions (n=111). We found the most commonly used definitions to be open to multiple interpretations and to reflect underlying assumptions that are not always justifiable. Attention is needed to the ways in which differing definitions and interpretations of health literacy may affect patient care and the delivery of health literacy-related policy initiatives.Journal of Public Health Policy advance online publication, 19 May 2016; doi:10.1057/jphp.2016.18.

Empirical relationships between numeracy and treatment decision making: A scoping review of the literature.

OBJECTIVES: To determine what is known from the existing literature about empirical relationships between numeracy and the three stages of the treatment decision making process (information exchange, deliberation, and deciding on the treatment to implement). We also examined if, and how, numeracy was mentioned in relation to health literacy. METHODS: A search of four databases returned 2772 records. After de-duplication and three levels of relevance screening, 38 primary studies were included in this review. RESULTS: Relationships between numeracy and the information exchange stage have received greater attention than relationships between numeracy and the deliberation and deciding on the treatment to implement stages. The lack of overlap in the empirical relationships examined in studies, the measure(s) of numeracy used, and the characteristics of study populations, made findings difficult to compare. Multiple knowledge gaps and measurement-related problems were identified. Numeracy and health literacy have largely been treated as separate concepts. CONCLUSION: More research is needed to better understand the importance of numeracy and health literacy to treatment decision making. PRACTICE IMPLICATIONS: Decision aids designed for patients with different levels of health literacy may not meet the needs of patients with different levels of numeracy. The numeracy skills of health professionals require attention.

Empirical relationships between health literacy and treatment decision making: a scoping review of the literature.

OBJECTIVES: This study asked: What is known from the existing literature about the empirical relationships between health literacy (HL) and the three stages of the treatment decision making (TDM) process: information exchange, deliberation, and deciding on the treatment to implement? METHODS: A scoping review of the literature was conducted. Four databases were searched and a total of 2772 records were returned. After de-duplication and three levels of relevance screening, 41 primary studies were included. RESULTS: Relationships between HL and information exchange were studied more often than relationships between HL and deliberation and deciding on the treatment to implement. Across the 41 studies, there was little overlap in terms the measure(s) of HL adopted, the aspect of TDM considered, and the characteristics of the study populations--making comparisons of the findings difficult. Multiple knowledge gaps and measurement-related problems were identified; including, the possibility that the process of TDM influences HL. CONCLUSION: The importance of HL to the three stages of TDM is unclear because of the knowledge gaps and measurement-related problems that exist. PRACTICE IMPLICATIONS: There are many uncertainties about how TDM, or the design and use of patient decision aids, should respond to patients with different levels of HL.

Lifelong educational practices and resources in enabling health literacy among older adults.

OBJECTIVE: The goal of this study is to examine the role of lifelong educational and learning practices and resources in enabling health literacy. METHOD: A subsample of older adults (n = 2,979) derived from the 2003 seven country IALSS (Canadian survey) was used. An expanded Andersen-Newman model that included lifelong learning enabling factors was used to develop predictors of health literacy. RESULTS: The formal education, lifelong and lifewide learning enabling factors exhibited the most robust associations with health literacy. These included education level; self-study in the form of reading manuals, reference books and journals; computer/Internet use, use of the library; leisure reading of books; reading letters, notes and e-mails; and volunteerism. DISCUSSION: Findings are discussed in relation to the development and maintenance of health literacy over the life course. Programs and policies that encourage lifelong and lifewide educational resources and practices by older persons are needed.