Palliative medicine
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Palliative medicine · Jul 2022
Preferences of patients with palliative care needs and their families for engagement with service improvement work within the hospital setting: A qualitative study.
There is growing recognition of the importance of involving patients and families with lived experiences of illness in healthcare service quality improvement, research and implementation initiatives. Ensuring input from people with palliative care needs is important, but how to enable this is not well understood. ⋯ Enabling meaningful consumer input to quality improvement requires careful consideration due to the unique requirements of the palliative care population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focussed opportunities for input into service improvement may best foster improvements in inpatient palliative care, founded in what matters most for people requiring this care.
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Palliative medicine · Jul 2022
Face and content validity, acceptability, feasibility, and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries.
The Children's Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. ⋯ C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.
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Palliative medicine · Jul 2022
Exploring the prevalence, impact and experience of cardiac cachexia in patients with advanced heart failure and their caregivers: A sequential phased study.
Cardiac Cachexia is a wasting syndrome that has a significant impact on patient mortality and quality of life world-wide, although it is poorly understood in clinical practice. ⋯ Cardiac cachexia has a debilitating effect on patients and caregivers. Future work should focus on establishing a specific definition and clinical pathway to enhance patient and caregiver support.