Umer Akbar, Sandhya Seshadri, Megan Dini, Peggy Auinger, Sally A Norton, Jodi S Holtrop, Benzi M Kluger
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引用次数: 0
Abstract
Background and objectives: To assess the current structures, knowledge, and readiness to integrate palliative care (PC) into Parkinson disease (PD) care at Parkinson's Foundation Centers of Excellence (COE) in the United States.
Methods: Three unique surveys were administered to health care professionals/staff at COEs to assess PC (1) resources, (2) knowledge and comfort, (3) clinical experience and processes, (4) barriers, and (5) readiness for implementation.
Results: Response rates for the 3 surveys were 97%, 98%, and 56%. In total, 41% of COEs have access to outpatient PC specialists, 71% have mental health counseling, 82% have support groups, and 9% had very limited PC resources. Overall, 74% of providers believed persons with advanced PD should receive PC, and knowledge of PC fundamentals was good across providers. For high-needs persons with PD (PWP), only 16% of physicians and 24% of advanced practice providers made referrals to PC specialists ≥75% of the time, while 9% and 16% never made such referrals. Limited time, space, financing, and staffing were seen as major barriers to PC implementation. In total, 37% of providers were satisfied with their COE's ability to provide PC services. Most COEs report a culture open to change and appear well-positioned to implement PC in a more comprehensive fashion.
Discussion: These results demonstrate the emergence of structures and processes to provide PC to persons with PD at COEs. They also identify concrete opportunities to strengthen integration of PC through educational, quality improvement, and advocacy efforts.
期刊介绍:
Neurology® Genetics is an online open access journal publishing peer-reviewed reports in the field of neurogenetics. The journal publishes original articles in all areas of neurogenetics including rare and common genetic variations, genotype-phenotype correlations, outlier phenotypes as a result of mutations in known disease genes, and genetic variations with a putative link to diseases. Articles include studies reporting on genetic disease risk, pharmacogenomics, and results of gene-based clinical trials (viral, ASO, etc.). Genetically engineered model systems are not a primary focus of Neurology® Genetics, but studies using model systems for treatment trials, including well-powered studies reporting negative results, are welcome.