Articles: palliative-care.
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Background: Research on health-related quality of life (HRQoL) is crucial for developing comprehensive palliative care in idiopathic pulmonary fibrosis (IPF). Objectives: To study IPF patients' HRQoL compared with general population and its association with dyspnea in a longitudinal follow-up. Design: Assessment of IPF patients' HRQoL by a generic tool. ⋯ Seven and two dimensions of HRQoL significantly declined in the categories of MMRC <2 and MMRC ≥2, respectively. Conclusions: Patients with IPF, especially if dyspnea limits everyday life, suffer from widely impaired HRQoL, although self-assessed mental capability is preserved. Integrated palliative care is supported to face the multiple needs of IPF patients.
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Palliative medicine · Oct 2023
Motor neurone disease: A point-prevalence study of patient reported symptom prevalence, severity and palliative care needs.
Motor neurone disease is a rare but debilitating illness with incomplete evidence regarding patients' symptom burden. Palliative care and generalist clinicians are often in-experienced in caring for these patients and assessing their needs. ⋯ Patients with motor neurone disease report high symptom burden. A validated motor neurone disease-specific symptom assessment tool is needed to accurately assess patients, including important variations in symptom clusters according to phenotype. Further research must focus on evidence-based treatment guidelines for symptoms experienced commonly and severely.
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Observational Study
Changes in the Place of Death and Implications for End-of-Life Care Policy: A Population-Based Observational Study.
Background: Death in hospital rather than at home is becoming more prevalent, even among terminally ill patients receiving home-based care. Identifying trends in places of death is crucial to care policy, especially for aging populations as in Taiwan. Aim: To identify changes in the places of natural death of Taiwanese individuals for various causes of death. ⋯ We applied the joinpoint regression model to estimate trend changes in places of death. During the study period, the places of death in Taiwan changed significantly, the average annual percent changes for hospital deaths over the 21-year period was 2.54% (confidence interval [CI]: 2.04 to 3.03), and for home deaths was -2.69% (CI: -3.26 to -2.13). Conclusions: The detailed findings of this national study can offer insight into potential future clinical burdens and lead to better health policy decisions for Taiwan.
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Palliative medicine · Oct 2023
Understanding the experiences of mothers receiving perinatal palliative care: A qualitative study.
Despite the diagnosis of life-limiting foetal conditions, some mothers choose to continue their pregnancies. The experiences of these individuals are relatively unknown, making it difficult for perinatal palliative services to be targeted towards their needs. ⋯ Continuing a pregnancy despite the diagnosis of a life-limiting foetal condition can be challenging for mothers. To better meet their needs during this difficult period, perinatal palliative care must be patient-centred, multidisciplinary and non-judgmental. Efforts must be made to streamline the healthcare delivery process.
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J Pain Symptom Manage · Oct 2023
Development of a guide to multidimensional needs assessment in the palliative care initial encounter (MAP).
Ensuring patient-centered palliative care requires a comprehensive assessment of needs beginning in the initial encounter. However, there is no generally accepted guide for carrying out this multidimensional needs assessment as a first step in palliative intervention. ⋯ MAP is an expert panel-endorsed semi-structured clinical interview guide for the comprehensive, systematic, and proactive initial assessment to efficiently assess multiple domains while adjusting to the needs of each patient. A future study will assess the feasibility of using the MAP guide within the timeframe of the palliative care initial encounter.