ObjectiveWe conducted a systematic review to evaluate questionnaires about patient’s values and preferences to provide information on the most appropriate questionnaires to be used when developing clinical practice guidelines.MethodsA systematic literature search of the Cochrane Library, MEDLINE, Embase, Web of Science, Chinese Biomedical Database, China National Knowledge Infrastructure, and the Wanfang Database was performed to identify studies on questionnaires evaluating patient’s values and preferences. The articles that used fully structured questionnaires or scales with standardized questions and answer options were included. We assessed the questionnaires’ construction and content with a psychometric methodology and summarized the domains and items about patient’s preferences and values.ResultsA total of 7,008 records were retrieved by the search strategy and scanned, and 20 articles were finally included. Of these, 10 (50%) articles described the process of item generation and only four questionnaires (20%, 4/20) mentioned the pilot testing. Regarding “validity”, seven questionnaires (35%, 7/20) assessed validity and only one (5%, 1/20) questionnaire assessed internal consistency, with Cornbrash’s α values of 0.74–0.87. For “acceptability”, the time to complete the questionnaires ranged from 10 to 30 minutes and only nine studies (45%, 9/20) reported the response rates. In addition, the results of domains and items about patient’s preferences and values showed that the “effectiveness” domain was the most considered item in the patient’s value questionnaire followed by “safety”, “prognosis”, and others, whereas the least considered domain was “physician’s experience”.ConclusionOnly a few studies have developed questionnaires with rigorous psychometric methods to measure patient’s preferences and values. Currently, still there is no valid or reliable questionnaire for patient’s preferences and values for use when developing clinical practice guidelines. Further study should be conducted to develop standardized instruments to measure patient’s preferences and values. This study provides the domains and items that may be used in formulating questionnaires about patient’s preferences and values.
Objectives Describe important thematic differences between patients and family caregivers concerning the discussion of religion and spirituality in serious illness conversations with providers. Describe implications for palliative care practice and research related to religion and spirituality in patient-provider discussions about treatment plans, values, and end-of-life preferences. Original Research Background. Religion and spirituality (R/S) plays a critical role in how African-Americans (AAs) cope with end-of-life yet is often omitted in patient-provider communication. Research Objectives. To identify potential ways to include R/S in discussions with providers about serious illness from the perspectives of 1) AA patients with advanced heart failure (HF) and 2) their family caregivers (FCGs).
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