The role of nurses for patients with Parkinson’s disease at home: a scoping review

This study was conducted to provide an overview of what is known about the role of nurses in caring for patients with PD at home, and to determine the differences between nurses and PDNSs caring for these patients. Nine main roles were identified: overall assessment and support, treatment management, safety assessment regarding falls, care for non-motor symptoms, palliative care, support for caregivers, education for care home staff, multidisciplinary collaboration, and provision of information on social resources. Most of the roles were similar to those associated with nursing care at home for patients in general [36] and were performed by both nurses and PD nurses. The results suggest that the main role of PD nurses at home is to manage medication and educate care staff. While these are also important roles for PD nurses in clinics, PD nurses in the home environment can provide superior support because they understand patients’ daily lives. The results of this study will help nurses prepare by providing them with the knowledge and skills needed to help patients with PD, leading to more reliable care for patients, especially in countries lacking a PD nurse system.

Because the basic treatment for PD is oral medication, medication management by nurses, subsuming medication adherence and dosage adjustment considering side effects and timing, is considered to be particularly important in supporting home care. Most patients with PD, particularly those with early stage disease, engage in medication non-adherence behaviors, often intentionally [21, 37]. One common reason for hospitalization among patients with PD is falls or fractures caused by motor symptoms; in fact, this accounts for 65% of all falls [38]. For preventing hospitalization, nurses should be aware that patients are likely to show non-adherence behaviors, and they should aim to prevent missed or incorrectly taken medications by using medication boxes, building a relationship in which the patient feels free to ask for help regarding medication problems, and possibly providing guidance to family members and other support persons. The role of medication dosage adjustment was extracted only from the studies about PD nurses included in this review. It would be particularly meaningful for PD nurses to be involved in this aspect of care because they might spend more time with patients than other professionals; they can assess side effects and the need to add, subtract, or change medication doses at particular times, as well as explain the situation to the physician. In addition to oral medication, nurses are responsible for the daily management of apomorphine in homebound patients and are supported by guidance from PD nurses [27]. Novel non-oral medications may emerge in the future as alternatives to apomorphine, LCIG, and non-pharmacological treatments such as DBS. PD nurses may be required to advise nurses and to make suggestions to the patient’s physician regarding changes in administration methods and treatments, including implementing other non-pharmacologic therapies.

When patients with PD have difficulty living at home, they may be considered for admission to a care home, especially if they have advanced PD or comorbidities that significantly increase the possibility of admission, such as hip fracture or dementia [39, 40]. Care needs for admitted patients with PD may not be met if staff knowledge of PD-related problems is insufficient [41]. In addition to the complexity of oral medications for PD, patients take medicines for the treatment of comorbidities as needed, which may make it difficult for care home staff without sufficient knowledge to assist patients in taking their medications. Therefore, education of care staff by PD nurses is necessary to ensure the safety of patients with PD.

Other roles of nurses related to motor and non-motor symptoms in patients with PD at home are generally applicable to patients with other diseases as well. Specific details of the nurse’s role regarding constipation, which is one of the non-motor symptoms of PD, were not extracted from the studies included in this review. However, the frequency of constipation varied among the studies, from 7 to 70%, and constipation is considered a common symptom in patients with PD because of the effects of the both the disease itself and oral medications [42]. In the management of constipation, dietary intervention with probiotics and prebiotics and the use of lubiprostone and macrogol have been suggested to be potentially effective, whereas the evidence for the efficacy of abdominal massage is considered insufficient [43, 44]. A nurse intervention program for constipation in patients with PD has been created in China [45], and its results suggests that support for defecation is one of the forms of care that nurses should provide. Sleep medications are sometimes used to treat sleep problems, which are classified as non-motor symptoms. However, in patients with PD, only the dopamine agonist rotigotine has been shown to be effective; evidence for the efficacy of other drugs is insufficient [44]. Among older patients with PD, 18.6% were prescribed hypnotics, with benzodiazepines being reported to increase the risk of injury significantly, and melatonin receptor agonists reportedly significantly increasing the risk of femoral fractures [46]. Therefore, it is important to understand the treatments for non-motor symptoms and to provide nursing care while considering their side effects. This can be expected to improve the quality of life of patients with PD.

In addition to nursing care to address the symptoms of patients with PD at home, we found that nurses need to play roles in multidisciplinary collaborations and provide information on social resources. There are differences among countries and regions in terms of the granting of qualifications and the tasks performed in accordance therewith. This study found that there are PD nurses in the United Kingdom, Italy, Germany, Sweden, Australia, the United States, and China, and a competency framework for nurses working in PD management has been created in the United Kingdom [7]. In the Netherlands, which was not covered by this study, professional qualifications have been granted, and guidelines have been created [47]. Nurse-led community care is also provided in Singapore, particularly for patients with severe motor impairments and those without a caregiver; patients are visited by a PD nurse and, if necessary, referred to relevant community services [48]. In these countries, PD nurses take the lead in supporting patients, which is essential for patients to live at home. By contrast, in Japan, for example, nurses at hospitals and clinics only provide care within their departments, and home-visiting nurses only provide care to patients at home or in care homes. As such, some countries are not able to provide nursing care across all inpatient, outpatient, and home care settings. Instead, Japan has a national qualification for public health nurses, who are mainly affiliated with government agencies, playing a liaison role by providing information on available social services and communicating with various agencies. However, they do not provide patient support under the orders of a physician and cannot provide medical assistance. The introduction of PD nurses in countries such as Japan will require that they be given PD-specific roles in accordance with the national system. Clarifying the roles of each type of care provider in every country may increase the likelihood that patients with PD can continue to live at home.

This review has some limitations. First, we only included articles written in English; references written in other languages or included in databases from other countries were not extracted. On the basis of the distribution of the included studies by country, selection bias is plausible given that the countries with multiple references were all English-speaking countries. Second, no studies in this review described in detail the differences between the roles of PD nurses and other nurses in countries where PD nurses are qualified, and the relative impact on patients of interventions implemented by the different types of nurses was not evaluated. Interventions implemented by PD nurses may lead to greater improvements in patients’ symptom control and quality of life compared with those implemented by nurses. Therefore, further research focusing on the differences in nursing roles and outcomes is needed.