Journal of palliative medicine
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Background: Family caregivers of bedridden or homebound patients are at risk of adverse physical and psychological outcomes. There is a need for a culturally adapted and valid instrument for measuring caregiver burden in palliative care programs. Objective: To develop a reliable and valid instrument to measure the self-perceived burden of informal caregivers of patients with serious health-related suffering. ⋯ Two sub-scales-consequences of caregiving and lack of financial security-were derived. The final nine-item Likert-type Achutha Menon Centre-Caregiver Burden Inventory (AMC-CBI) had a content validity index of 0.77, Cronbach's alpha of 0.82, and high test-retest reliability (ρ = 0.87, p < 0.001). Conclusion: The AMC-CBI is a valid and reliable instrument for burden assessment of caregivers of patients served by the home-based palliative care program in Kerala, India.
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Multicenter Study
A Yet Unrealized Promise: Structured Advance Care Planning Elements in the Electronic Health Record.
Background: Electronic health records (EHRs) may help enable reliable, rapid data management for many uses, such as facilitating communication of advance care planning (ACP). However, issues with validity and accuracy of EHRs hinder the use of ACP information for practical applications. Design: We present a cross-sectional pilot study of 433 older adults with cancer from three large health care systems, participating in an ongoing multisite pragmatic trial (4UH3AG060626-02). ⋯ Conclusion: Structured ACP data in EHRs were frequently incorrect. This represents a problem for patients and their families, as well as quality improvement and research efforts. Clinical Trials Registration: NCT03609177.
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Randomized Controlled Trial Observational Study
Association of Race with End-of-Life Treatment Preferences in Older Adults with Cancer Receiving Outpatient Palliative Care.
Background: End-of-life discussions and documentation of preferences are especially important for older cancer patients who are at high risk of morbidity and mortality. Objective: To evaluate influence of demographic factors such as religiosity, education, income, race, and ethnicity on treatment preferences for end-of-life care. Methods: A retrospective observational study was performed on baseline data from a multisite randomized clinical trial of Dignity Therapy in 308 older cancer patients who were receiving outpatient palliative care (PC). ⋯ Discussion: Race was significantly associated with all three markers for aggressive care in bivariate analysis and with two out of three markers in multiple regression analysis, with minorities preferring aggressive care and whites preferring less aggressive care. Contrary to our hypothesis, income was not significantly associated with treatment preferences, whereas religion was significantly associated with all markers for aggressive care in bivariate models, but not in multiple regression models. Clinical Trial Registration Number NCT03209440.
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Background: Advance care planning (ACP) is recommended to align treatment with patient goals, although there has been little study of the impact of ACP on in-hospital stroke treatment. Objective: To examine the association between ACP and transitions to comfort measures after stroke. Design: Prospective cohort study. ⋯ There was no difference between formal documentation and informal conversations on time to comfort measures (HR 0.80, 95% CI: 0.40-1.63). Conclusions: There was no additional association of formal ACP documentation over informal conversations on time to transition to comfort measures after stroke. Further study of formal ACP is warranted.
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Multicenter Study Observational Study
The Act of Consoling Helps Those Who Console: A Multicenter Observational Survey Study in Hospice Services.
Background: The contemporary scientific literature documents a lack of attention toward the act of consoling put into practice by health care professionals (HCPs) in hospice services. Objective: To describe the act of consoling and its meaning for hospice-employed HCPs. Design: A multicenter observational survey study was performed through a paper-based questionnaire. ⋯ The results showed that most HCPs consider the practice of consoling to be essential to their profession, but they also underscored the extreme complexity of the process. Conclusion: The act of consoling is not simply a professional duty defined in contractual clauses. Rather, it is a set of specific communicative practices and skills required of HCPs.