Articles: palliative-care.
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Review
Referral criteria to palliative care for patients with Parkinson's disease: a systematic review.
This systematic review aimed to identify the referral criteria for palliative care in patients with Parkinson's disease. ⋯ The 14 themes identified in this systematic review were categorized into disease- and needs-based criteria. These themes show the wide range of referral timing and procedures. Further studies should be conducted to reveal standardized referral criteria.
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Background: The importance of dignity in health care is well described, yet limited interventions exist to improve dignity, particularly patient-driven interventions. Objectives: To test the hypothesis that patient-selected photographs at the bedside would impact patients' sense of dignity and clinicians' sense of meaningful work, stimulate conversation between patients and clinicians, and serve as a visual and patient-driven complement to the Patient Dignity Question (PDQ). Methods: Patients admitted to three units at an academic medical center displayed photographs above their head of bed and were interviewed for this study. ⋯ Notably, analysis of the clinician surveys (n = 40) yielded six similar themes: conveying goals, joy, stimulating conversation and meaningful connections, humanizing the patient, meaningful work, and compassion and empathy. Conclusions: Patient-selected photographs at the bedside impact both patients and clinicians by stimulating conversation and meaningful connections, humanizing patients, and fostering meaning and joy in work. Photographs and the PDQ provide a similar window into personhood, thereby supporting the use of a photograph as a visual and patient-driven complement to the PDQ.
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Palliative medicine · Feb 2023
A qualitative service evaluation of patient and caregiver experiences of CAR-T therapy: Recommendations for service development and implications for palliative care teams.
Chimeric Antigen-Receptor-T-cell (CAR-T) therapy is a potentially life-saving treatment for refractory haematological malignancies. Internationally, CAR-T services are undergoing rapid development. Despite this, research on the lived experiences of patients receiving novel immunotherapies is limited. Little is known about their supportive care needs. Consequently, dedicated palliative and supportive care services may not be considered. ⋯ Patients and caregivers would benefit from early and ongoing support from palliative care, allied-health professionals and psychology. As indications for CAR-T therapy expand, there is an urgent need for multi-centre studies incorporating patient-reported outcome data to ensure patient-centred service delivery.
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Palliative medicine · Feb 2023
Challenges developing an electronic patient-reported outcome measurement for palliative home care: A qualitative interview and focus group study.
Patient-reported outcome measures have the potential to improve outcomes, quality, and effectiveness of care. Digital use of patient-reported outcome measures could be an option to foster implementation in palliative care. The Palli-MONITOR study focused on developing and testing an electronic patient-reported outcome measure in specialised palliative home care. As part of this study, we examined setting-specific challenges for the development of the measure. ⋯ Our results provide a multifaceted picture of challenges developing electronic systems for patient-reported outcome measurement in palliative home care on the individual and organisational level. The study underpins the benefit of stakeholder involvement creating digital health innovations and emphasises the importance to therefore mind setting specific culture.
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Background: Different sets of barriers have been identified to explain the difficulties in the access and availability of opioid analgesics in palliative care, particularly in low- and middle-income countries, including Latin America. Objective: To validate a structured questionnaire for the access to opioid medicines and to investigate the perception of health professionals regarding access barriers to opioid analgesics in 17 countries of the Latin American Region. Design: Survey to identify the domains and barriers of access to opioid medicines according to health professionals, including physicians, nurses, and pharmacists affiliated to institutions that provide palliative care in Latin America between August 2019 and October 2020. ⋯ The median age was 44 years old (ranging from 23 to 73 years) with an average experience in palliative care of 10 years (range: 1-35), 71.8% were women, and 49.8% were affiliated to specialized health care facilities of urban areas (94.6%). The main barriers perceived to be extremely relevant by the respondents were "belief that patients can develop addiction" and "financial limitations of patients" for the patient's domain and the "appropriate education, instruction, and training of professionals" for health professional's domain. Conclusions: It is necessary to develop strategies to strengthen less-developed health systems of the region to review legal frameworks, ensure integrated palliative care systems, and deploy multidisciplinary strategies for sensitizing, training, and raising the awareness of patients, caregivers and, particularly, health professionals regarding appropriate prescription and rational use of opioid analgesics.