Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology, Nijmegen, The Netherlands.
Department of Anaesthesiology, Pain and Palliative Care, Radboud University Medical Center, Nijmegen, The Netherlands.
J Parkinsons Dis. 2017;7(4):749-754. doi: 10.3233/JPD-171195.
Parkinson's Disease Nurse Specialists (PDNS) play an important role in the care for patients with Parkinson's disease (PD) and their caregivers. Until now, there were no nursing guidelines in PD, and interventions were based solely on daily clinical practice because there is no evidence to support the merits of nursing interventions. Consequently, there is little uniformity in current care delivery.
Developing a guideline for PDNS.
We developed a guideline based on a questionnaire among PDNS and a literature review, supplemented with expert opinion plus the input of patients and caregivers. The questionnaire was filled in by 97 PDNS and 51 generic nurses with knowledge of PD to identify barriers in PD nursing care. Subsequently, we did a systematic literature search and transformed these sources of information into practice recommendations, which were developed according to international standards for guideline development.
Based on the results of the questionnaire we identified seven specific core areas: defining the role of PDNS in terms of caseload, education, competences and care coordination; medication adherence; provision of information and education; coping; caregiver support; urogenital function and orthostatic hypotension. The systematic literature search identified 186 studies, of which 33 studies were finally analyzed. Furthermore, we developed practice recommendations based on good clinical practice for the following areas: self-care, mental functioning, mobility, nutrition, sexuality, work, sleep, palliative care and complementary (integrative) care.
This guideline provide ground to harmonize care delivery by PDNS in clinical practice, and offer a foundation for future research.
帕金森病护士专家（PDNS）在帕金森病（PD）患者及其照护者的护理中发挥着重要作用。到目前为止，PD 还没有护理指南，干预措施仅基于日常临床实践，因为没有证据支持护理干预的优点。因此，目前的护理服务缺乏一致性。
制定 PDNS 指南。
我们基于 PDNS 的问卷调查和文献回顾制定了一份指南，辅之以专家意见以及患者和照护者的意见。该问卷由 97 名 PDNS 和 51 名具有 PD 知识的普通护士填写，以确定 PD 护理中的障碍。随后，我们进行了系统的文献检索，并将这些信息来源转化为实践建议，这些建议是根据国际指南制定标准制定的。
根据问卷的结果，我们确定了七个特定的核心领域：根据工作量、教育、能力和护理协调来定义 PDNS 的角色；药物依从性；提供信息和教育；应对；照护者支持；泌尿生殖功能和直立性低血压。系统的文献检索确定了 186 项研究，其中 33 项研究最终被分析。此外，我们还根据良好的临床实践制定了以下领域的实践建议：自我护理、心理功能、移动能力、营养、性行为、工作、睡眠、姑息治疗和补充（综合）治疗。
本指南为 PDNS 在临床实践中协调护理提供了依据，并为未来的研究奠定了基础。
