Health Literacy and Shared Decision Making--- Meaning of Involvement to Caner Patients and Implications for Patient Decision Aids across Different Health Literacy Groups

BACKGROUND: In recent years, informed consent and shared decision making are widely regarded as an important feature of good-quality healthcare. Policy-makers have been particularly concerned to ensure that patients are informed about and enabled to choose between relevant treatment options, but it is not clear how patients understand and value involvement. In addition, patients with low health literacy potentially limit their ability to be involved in decisions about their treatment, which in turn result in poor healthcare outcomes. Effective approaches such as patient decisions aids have been developed to support patient involvement into clinical decisions. By using qualitative and questionnaire survey methods, this 2-years proposal aims to 1) develop a health literacy instrument similar to the Newest Vital Sign (NVS) and to establish its psychometric properties and feasibility for clinical practice; 2) to explore the meaning and experience of involvement in treatment decision making to cancer patients across different levels of health literacy; and 3) to examine whether cancer patients with limited health literacy will be more likely to participate in decision making and achieve higher-quality decisions after exposed to patient decision aids. METHODS: In study 1, a new NVS-format will be developed and administered to 300 patients. Internal consistency will be calculated and convergent validity will be assessed by correlating with the Mandarin Health Literacy Scale (MHLS). The final instrument will be used in the following studies to assess health literacy of cancer patients. In study 2, a total of 100 cancer patients with varying education and health literacy levels will be recruited from a medical center of northern Taiwan. Participants will be interviewed in depth to explore their experience of involvement in treatment decision making. The transcripts were analyzed using the 'Framework' approach, a matrix-based method of thematic analysis. Study 3, using a quasi-experimental design, examines the effectiveness of a newly developed cancer patient decision aids according to the needs of patients obtained from Study 2. A total of 120 cancer patients with varying health literacy will be recruited and evenly distributed to the experimental and control group. In the experimental group, the participants are exposed to patient decision aids while those in the control group received conventional health education materials. All the participants are surveyed to estimate the relationship among levels of health literacy, personal decision preferences, decision conflict, risk perception, and satisfaction about physician-patient relationship. It is hypothesized that patients with limited health literacy in the experimental group are more likely to participate in decision making and achieve higher-quality decisions. CONCLUSIONS: The proposal aims to examine factors (e.g. health literacy) relevant to the process of shared decision making. The results have practical implications for how to involve patients with different literacy levels in treatment decision making, and highlight the important roles of health literacy and the patient-practitioner relationship in the process of decision making.

Project ID:PF9907-7035
External Project ID:NSC99-2410-H182-010-MY2