Palliative care for Parkinson's disease: suggestions from a council of patient and carepartners.
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ABSTRACT:
SUBMITTER: Hall K
PROVIDER: S-EPMC5460163 | biostudies-other | 2017
REPOSITORIES: biostudies-other
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Palliative care for Parkinson's disease: suggestions from a council of patient and carepartners.
Hall Kirk K Sumrall Malenna M Thelen Gil G Kluger Benzi M BM
NPJ Parkinson's disease 20170522
In 2015, the Parkinson's Disease Foundation sponsored the first international meeting on Palliative Care and Parkinson's disease and the Patient Centered Outcomes Research Institute funded the first comparative effectiveness trial of palliative care for Parkinson's disease. A council of Parkinson's disease patients and carepartners was engaged to assist with both projects. This council wrote the following manuscript as an opinion piece addressed to the clinical and research community on how pall ...[more]
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Project description:The aim of this study was to investigate the knowledge, attitudes, and previous training of Irish health care workers (HCWs) in palliative care in end-stage Parkinson's disease (PD). A survey was distributed to HCWs, including neurologists, geriatricians, general practitioners, nurses, and allied health professionals, in acute and community settings in the Republic of Ireland. Three-hundred and six surveys were returned (32% average response rate). Most HCWs (90%) believed that people with PD have palliative care needs; however, 76% of HCWs also said that these needs are "never" or only "sometimes" met. These unmet needs are reflected in relatively few people with PD being referred to specialist palliative care; 48% of hospital consultants had referred no patients in the previous 6 months, and just 7% had referred more than 10. Just 8% of the HCWs surveyed reported having any training on the palliative care aspects of PD, and 97% expressed an interest in receiving further education. Respondents wanted all topics pertinent to palliative care in PD covered, and many felt that they also needed further information on PD in general. People with PD are seen to have palliative care needs; however, the findings suggest that these needs are not being met. There is a discrepancy between best practice recommendations for palliative care in PD and the beliefs and practices of HCWs. Further education in palliative care in PD is needed to ensure better quality of care for people with PD.
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Project description:Nursing homes are important locations for palliative care. Through comprehensive geriatric assessments (CGAs), evaluations can be made of palliative care needs of nursing home residents. The interRAI Palliative Care instrument (interRAI PC) is a CGA that evaluates diverse palliative care needs of adults in all healthcare settings. The evaluation results in Client Assessment Protocols (CAPs: indications of problems that need addressing) and Scales (e.g. Palliative Index for Mortality (PIM)) which can be used to design, evaluate and adjust care plans. This study aims to examine the effect of using the interRAI PC on the quality of palliative care in nursing homes. Additionally, it aims to evaluate the feasibility and validity of the interRAI PC.This study covers phases 0, I and II of the Medical Research Council (MRC) framework for designing and evaluating complex interventions, with a longitudinal, quasi-experimental pretest-posttest design and with mixed methods of evaluation. In phase 0, a systematic literature search is conducted. In phase I, the interRAI PC is adapted for use in Belgium and implemented on the BelRAI-website and a practical training is developed. In phase II, the intervention is tested in fifteen nursing homes. Participating nursing homes fill out the interRAI PC during one year for all residents receiving palliative care. Using a pretest-posttest design with quasi-random assignment to the intervention or control group, the effect of the interRAI PC on the quality of palliative care is evaluated with the Palliative care Outcome Scale (POS). Psychometric analysis is conducted to evaluate the predictive validity of the PIM and the convergent validity of the CAP 'Mood' of the interRAI PC. Qualitative data regarding the usability and face validity of the instrument are collected through focus groups, interviews and field notes.This is the first study to evaluate the validity and effect of the interRAI PC in nursing homes, following a methodology based on the MRC framework. This approach improves the study design and implementation and will contribute to a higher generalizability of results. The final result will be a psychometrically evaluated CGA for nursing home residents receiving palliative care.ClinicalTrials.gov NCT02281032. Registered October 30th, 2014.
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