BMJ supportive & palliative care
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BMJ Support Palliat Care · Jun 2017
Randomized Controlled Trial Multicenter StudySpecialist palliative care improves the quality of life in advanced neurodegenerative disorders: NE-PAL, a pilot randomised controlled study.
This study analysed the impact on palliative care outcomes of a new specialist palliative care service for patients severely affected by amyotrophic lateral sclerosis (ALS/MND), multiple sclerosis, Parkinson's disease and related disorders (multiple system atrophy progressive supranuclear palsy, MSA-PSP). ⋯ This exploratory RCT provides evidence that no harm was experienced by SPCS for patients severely affected by neurodegenerative disorders. There was an improvement in quality of life and physical symptoms for neurological patients in palliative care. Caregiver burden was not affected by the service.
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BMJ Support Palliat Care · Jun 2017
Validation of the MD Anderson Symptom Inventory-Head-and-Neck-Filipino (MDASI-HN-F): clinical utility of symptom screening among patients with head-and-neck cancer.
Symptom burden and quality of life (QOL) are of particular importance in head-and-neck cancer treatment. The MD Anderson Symptom Inventory-Head-and-Neck (MDASI-HN) is a simple symptom assessment tool practicable for patient follow-up, but a validated Filipino translation was previously unavailable. ⋯ The MDASI-HN-F is valid, reliable and sensitive. The sensitivity of the MDASI core-F is demonstrated, and its validity and reliability reaffirmed. Moderate and severe head-and-neck symptoms are prevalent in early-stage and advanced-stage head-and-neck cancers, reflecting the utility of symptom screening for improvement of symptom management, QOL and compliance to treatment.
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BMJ Support Palliat Care · Jun 2017
Preferred and actual place of death in haematological malignancy.
Home is considered the preferred place of death for many, but patients with haematological malignancies (leukaemias, lymphomas and myeloma) die in hospital more often than those with other cancers and the reasons for this are not wholly understood. We examined preferred and actual place of death among people with these diseases. ⋯ Many patients discussed their preferred place of death, but a substantial proportion did not and hospital deaths were common in this latter group. There is scope to improve practice, particularly among those dying soon after diagnosis. We found evidence that some people opted to die in hospital; the extent to which this compares with other cancers is of interest.
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BMJ Support Palliat Care · Jun 2017
Palliative care patients' perceptions of the work involved in understanding and managing the network of care provision surrounding them.
To explore the work carried out for cancer palliative care patients in understanding and dealing with the often large network of care provision surrounding them. ⋯ The number and variety of people contributing to the care of a cancer palliative care patient can be difficult for patients and family to comprehend. Work is required by patients or family on their behalf to achieve the level of understanding required to become accomplished at navigating the system and project managing their care organisation, and is probably influenced by role expectations and previous experience. Much of this additional, often hidden, workload for patients and family could probably be reduced with clear, timely information provision by health professionals.
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BMJ Support Palliat Care · Jun 2017
Use of podcast technology to facilitate education, communication and dissemination in palliative care: the development of the AmiPal podcast.
Podcasts have the potential to facilitate communication about palliative care with researchers, policymakers and the public. Some podcasts about palliative care are available; however, this is not reflected in the academic literature. Further study is needed to evaluate the utility of podcasts to facilitate knowledge-transfer about subjects related to palliative care. The aims of this paper are to (1) describe the development of a palliative care podcast according to international recommendations for podcast quality and (2) conduct an analysis of podcast listenership over a 14-month period. ⋯ A palliative care podcast is a method to facilitate palliative care discussion with global audience. Podcasts offer the potential to develop educational content and promote research dissemination. Future work should focus on content development, quality metrics and impact analysis, as this form of digital communication is likely to increase and engage wider society.