Journal of palliative medicine
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Background: Patients with chronic obstructive pulmonary disease (COPD) seldom discuss preferences for future care/treatments with clinicians. The lack of discussions prevents the delivery of care grounded on patient preferences. Instead, treatments become increasingly burdensome as disease progresses and patients approach the end of life. ⋯ Earlier patient-centered discussions may reduce their emotional impact and enable patients to participate fully, while enabling clinicians to provide timely and accurate information on illness progression and appropriate self-management techniques. Conclusion: Current approaches toward palliative care discussions in COPD do not guarantee that patients' preferences are met. Early and gradual patient-centered discussions may enable patients to fully express their care preferences as they evolve over time, while minimizing the impact of symptom and treatment burden.
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Background: An increasing number of life-limiting conditions (LLCs) is diagnosed prenatally, presenting providers with the ability to present perinatal palliative care (PnPC) services as an option. Objective: To (1) determine the profile characteristics of patients referred for prenatal palliative care counseling to Charité Universitätsmedizin Berlin, Germany; (2) evaluate pregnancy outcome; and (3) analyze the additional human resources per family required to provide specialized PnPC. Methods: Retrospective chart review of pregnant women and infants with potentially LLCs referred for prenatal palliative care counseling between 2016 and 2020. ⋯ Total human resources (median, range) provided were 563 (0-2940) minutes for psychosocial and 300 (0-720) minutes for medical specialized PnPC per referral. Conclusions: Our data confirm previously observed characteristics of diagnoses, referrals, and outcomes. The provision of specialized and interprofessional PnPC services accounted for ∼14 hours per case of additional human resources.
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Background: Although palliative care programs are beneficial to patients and families, most of the public is unfamiliar with and underutilizes palliative services. TikTok, a fast-growing social media platform worldwide, allows users to share short live-recorded videos and could be used to educate the public about palliative care. Objective: This study characterized palliative care TikTok videos and determined characteristics associated with higher user engagement metrics (views, likes, comments, and shares). ⋯ Caregivers' videos were most likely to be viewed (p = 0.003) and liked (p < 0.001), whereas health care professionals' videos were most frequently shared (p = 0.01). Engagement was highest among videos describing personal experiences (views: p < 0.001, likes: p = 0.002, shares: p = 0.003) and educating (views: p = 0.005, likes: p = 0.002, comments: p = 0.02, shares: p < 0.001). Conclusion: TikTok provides an interactive platform for patients, professionals, and caregivers to share information and experiences about palliative care, making it potentially valuable for explaining palliative care to the public.
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Background: Family caregivers are essential to the care of patients with serious illness and supporting caregivers alongside patients is a core tenet of palliative care. While there is increasing recognition of the need to support family caregivers, there are limited resources to assess and support their needs in a systematic way in outpatient palliative care practice. Objectives: The aim of this study is to develop an approach to conducting assessments of routine needs and support of family caregivers in outpatient palliative care practice using a quality improvement framework. ⋯ Most caregivers reported feeling moderately or very well supported, most commonly by family, friends, and faith/spirituality. Caregivers rated the supportive tool kit an 8.4 on a 10-point usefulness scale and 92% would recommend it to others. Conclusions: We successfully developed and piloted practical clinical tools for routine family caregiver screening and support.
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Purpose: Individual genetic variation can affect both pain expression and opioid response. Large cohort datasets are required to validate evidence influencing genomic factors in opioid response. This study examined the feasibility of establishing an opioid pharmacogenomics registry for cancer patients containing longitudinal matched clinical, symptom, pharmacological, and genomic data, with an a priori feasibility target of 50 participants within 12 months. ⋯ Fifty-eight participants were recruited (median age 63.7, 45% female, 83% complete data), with the most frequent diagnosis being lung cancer (n = 18, 33%) and oxycodone the most frequently prescribed opioid (n = 30, 52%). Qualitative data indicated positive engagement from both patients and clinicians. Conclusion: Establishing a longitudinal opioid pharmacogenomic registry in patients with cancer receiving palliative care is feasible and readily acceptable.