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BACKGROUND: Palliative care is recommended for all people with dementia from diagnosis through end-of-life. However, palliative care needs and effective elements of palliative care are not well-defined for the earlier stages of dementia. OBJECTIVE: To systematically map current research on palliative care early in the disease trajectory of dementia. DESIGN: Scoping review of scientific literature. DATA SOURCES: PubMed, CINAHL, EMBASE, Cochrane, PsycINFO, Web of Science REVIEW METHODS: We included studies published in English over the last decade (through March 2022) that focused on palliative care in early stages of dementia and targeted outcomes in palliative care domains. Two authors independently screened abstracts and full texts and scored the quality of included studies using tools by the Joanna Briggs Institute. RESULTS: Among the 77 papers reviewed, few addressed early stages of dementia specifically. We found that: 1) While "early" palliative care was not well-defined in the literature, evidence indicated that palliative care needs were present at or before diagnosis and across the trajectory. Notable opportunities for palliative care arise at 'tipping points' (i.e., when symptoms, functional status, or caregiving needs change). 2) Palliative care needs in early dementia include advocacy for goal-aligned care in the future, reassurance against the threat of negligence and abandonment by caregivers, planning for future scenarios of care (practical, individual, and relational needs), and establishing of long-term relationships with providers entrusted for care later in disease. 3) Elements of effective palliative care in early dementia could include dementia-specific ACP and goals of care discussions, navigation for building a network of support, provision of tools and resources for family, tailored care and knowledge of the person, and well-prepared dementia-care providers. The scarcity of palliative care studies aimed at early disease indicates a gap in the evidence in dementia care. CONCLUSION: The literature on palliative care in early dementia is sparse. Future studies should focus on assessment tools for optimizing timing of palliative care in early dementia, gaining better understanding of patient and family needs during early phases of disease, and providing training for providers and families in long-term relationships and communication around goals of care and future planning.
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OBJECTIVES: Although improving the average patient experience is at the center of recent efforts to make cancer care more patient centered, extreme experiences may be more informative for quality improvement. Little is known about the most deeply dissatisfying experiences that predispose disengagement and negatively influence patient outcomes. We sought to establish a framework for emotionally adverse patient experiences and identify the range of common causes. STUDY DESIGN: Qualitative study including in-depth interviews and free-text survey comments. METHODS: Thematic analysis of 20 open-ended patient interviews and 2389 free-text survey comments collected in a medical center's cancer clinics. RESULTS: Emotionally adverse experiences were rarely reported in survey comments (96; 4.0%) but more frequently discussed in interviews (12 interview participants). Such experiences were identified through explicit statements of negative emotion, language, syntax, and tone. Among these rare comments, hostility as an indicator was easiest to identify, whereas passive expressions of fear or hopelessness were less reliably identified. We identified 3 mutually inclusive high-level domains of triggers of negative emotion-system issues, technical processes, and interpersonal processes-and 10 themes within those domains. There was wide variation in the causes of emotionally adverse experiences and evidence of a complex interplay of patient expectations and preconditions that influenced the perception of negative experiences. CONCLUSIONS: This study presents a taxonomy for classifying emotionally adverse patient experiences expressed in free-text format. Further research should test how perceptions of adverse experiences correspond to recorded ratings of patient satisfaction and subsequent enrollment or utilization.
