The role of Parkinson’s nurses and their care of patients with Parkinson’s disease and other forms of parkinsonism: a survey

Introduction 

Parkinson’s disease is the most common form of parkinsonism. It is a progressive, neurodegenerative disorder that affects more than six million people worldwide (1, 2). According to the Norwegian Parkinson’s Registry, 11,829 people were registered with Parkinson’s disease and 419 with other parkinsonian disorders in Norway in 2023 (3).

The prevalence of Parkinson’s disease increases with age (1). The ageing population means that a further increase in the number of cases is expected in the coming years (3, 4).

Parkinson’s disease is caused by degeneration of dopamine-producing neurons in the substantia nigra, leading to dysfunction of the basal ganglia and impaired motor control (1). Clinically, the disease manifests with characteristic motor symptoms such as rigidity, resting tremor, bradykinesia and postural instability (see fact box). 

Parkinson’s disease is associated with a wide range of non-motor symptoms, such as sleep disturbances, depression and cognitive impairment, which can affect functioning and quality of life (1, 5, 6).

The heterogeneous course of the condition requires person-centred, multidisciplinary, long-term care, in which the Parkinson’s nurse plays a key role (5–7). International studies show that guidelines for Parkinson’s nurses and practices vary (5, 7).

In Norway, Parkinson’s nurses are specialist nurses affiliated with neurological departments within the specialist health service. They provide outpatient care and offer telephone consultations (8). A Parkinson’s nurse serves as a link between different levels of health care and helps ensure continuity in multidisciplinary care (8). 

The 2023 annual report of the Norwegian Parkinson’s Registry states that only one-third of patients with Parkinson’s disease and other forms of parkinsonism received care from a Parkinson’s nurse nationwide (3). A Parkinson’s nurse has the competence to support patients throughout the entire course of their illness (9).

The Parkinson’s nurse plays an important role in guiding and supporting patients, coordinating responsibility for multidisciplinary care, collaborating with neurologists and helping to improve patients’ health literacy (6, 10, 11). Studies have shown that Parkinson’s nurses have a positive effect on patients’ well-being and quality of life (5, 7, 12).

In Norway, Parkinson’s nurses’ competence has long been regarded as an important resource in the multidisciplinary care of this patient group (13, 14). Nevertheless, Norwegian research on the role and function of Parkinson’s nurses and their care of patients with Parkinson’s disease and other parkinsonian disorders is limited. 

Objective of the study  

The objective of the study was to map the extent to which patients with Parkinson’s disease and other forms of parkinsonism receive care from Parkinson’s nurses at the different hospital trusts in South-Eastern Norway Regional Health Authority, as well as to examine the role and function of Parkinson’s nurses in relation to this patient group. Our research questions were as follows:

• What is a Parkinson’s nurse’s role and function in relation to patients with Parkinson’s disease and other forms of parkinsonism?
• What proportion of respondents with Parkinson’s disease and other forms of parkinsonism have contact with a Parkinson’s nurse in South-Eastern Norway Regional Health Authority?
• Is there an association between patient age, disease duration, hospital catchment area, living situation, follow-up by a neurologist, and whether the patient has contact with a Parkinson’s nurse?

Method 

Design 

This is a cross-sectional study, with data based on secondary data from a questionnaire survey developed and conducted by ParkinsonNet. We followed the EQUATOR guidelines, using the STROBE checklist for cross-sectional studies in our reporting (15).

Sample

Members of the Norwegian Parkinson’s Association in the South-Eastern Norway Regional Health Authority with a diagnosis of Parkinson’s disease or other form of parkinsonism were invited to participate in the survey. Those with an unconfirmed diagnosis were also invited, as this patient group displays symptoms of parkinsonism and requires clinical evaluation and follow-up.

Respondents who consented to participate were included in the study. There were no exclusion criteria for participation, and reminders were sent a total of four times. 

Data collection

The survey was conducted in the online Nettskjema platform (16). A link to the questionnaire and an invitation to participate were posted on the Norwegian Parkinson’s Association’s website and Facebook page. The survey was conducted between December 2022 and February 2023. Of the 2255 people invited to participate, 1228 responded and were included in the study (response rate 54%).

Questionnaire and variables

The survey was developed when ParkinsonNet was commissioned by the South-Eastern Norway Regional Health Authority to identify which occupational groups patients with Parkinson’s disease and other parkinsonian disorders receive care from.

The questionnaire and items included were developed for this purpose by ParkinsonNet in a multidisciplinary collaboration. The questionnaire was not validated.

The questionnaire consisted of 47 closed-ended questions with no option for free-text responses. The questions covered participants’ sociodemographic characteristics, hospital catchment area and the occupational groups that patients had contact with. We selected the relevant questions relating to Parkinson’s nurses and neurologists with a view to addressing the research questions. The following questions from the survey were used: 

• What is your age?
• Which county do you live in? Or hospital catchment area?
• How long ago were you diagnosed?
• What is your current living situation?
• How often do you see a neurologist for follow-up of your Parkinson’s diagnosis?
• Are you in contact with a Parkinson’s nurse at the hospital?
• If not, why do you not have contact with a Parkinson’s nurse at the hospital?
• If you are, what does the Parkinson’s nurse help you with? 

Current living situation and hospital catchment area were treated as nominal categorical variables. For example, current living situation included: living alone in own home, living in own home with one or more family members, living in assisted housing, living in a nursing home/institution.

Age, disease duration and follow-up by a neurologist were treated as ordinal categorical variables. For example, age categories were: under 40 years, 41–54 years, 55–70 years, 71–84 years and over 85 years.

The outcome variable, contact with a Parkinson’s nurse, is a dichotomous categorical variable (yes/no) (17). Questions about why respondents did not have contact, or what the Parkinson’s nurse helps patients with had multiple choice responses. 

Statistical analyses 

There was no missing data in the study’s dataset. We therefore used raw data to analyse the results. Descriptive statistics were employed to describe the sample, with the proportion of patients receiving care from a Parkinson’s nurse reported as frequency and percentage. Chi-square tests were used to examine associations between variables.

A logistic regression analysis was performed to investigate the extent to which age, hospital catchment area, disease duration, current living situation and follow-up by a neurologist were associated with the outcome variable contact with a Parkinson’s nurse at the hospital.

All variables from the unadjusted analyses were included in the regression model. Age was categorised into two groups to examine the odds of follow-up for patients under 40 years, using those over 40 years as the reference group. Statistical analyses were performed using IBM SPSS version 29 (18), with a significance level set at p ≤ 0.05.

Research ethics considerations 

The survey only used anonymous data, as this could not be linked to individual participants directly or indirectly via email, IP addresses or scrambling keys. The use of Nettskjema ensured anonymity (16). Since the study only used anonymous data and no personal data, it was not subject to notification to Sikt – Norwegian Agency for Shared Services in Education and Research (19).

Respondents were informed about the survey and its purpose in an accompanying letter from ParkinsonNet in South-Eastern Norway Regional Health Authority. By completing the questionnaire in Nettskjema, respondents provided their consent to participate. 

Results 

Table 1 shows the characteristics of the sample (N = 1228). Most respondents reported having Parkinson’s disease (87%). The majority were aged 55–84 years (91%). Most lived in their own home, either alone or with at least one family member. Half of the respondents reported a disease duration of 0–4 years.

Ten per cent of respondents received assistance from others to complete the questionnaire, with this proportion increasing with age. Among the over 70s, 78% received help.

Role and function of the Parkinson’s nurse 

When respondents were asked what the Parkinson’s nurse helped them with, approximately one-third reported receiving treatment follow-up, information, patient education and telephone consultations (Figure 1).

Twenty per cent reported receiving help with managing and coping with various symptoms and challenges associated with the disease. Fifteen per cent reported receiving help to identify and access various services. For some respondents, the Parkinson’s nurse also provided support for their family.

Contact with a Parkinson’s nurse 

The frequency analysis revealed that only one-third of respondents (n = 400) had contact with a Parkinson’s nurse. Among those who did not have contact, half reported that they were not aware of the service, and 32% indicated that they did not feel they needed follow-up (Figure 2).

Unadjusted analyses 

The unadjusted analyses showed a statistically significant association between the independent variables hospital catchment area, follow-up by a neurologist and the dependent variable contact with a Parkinson’s nurse at the hospital (Table 2). This indicates that the patient’s hospital was associated with whether they had contact with a Parkinson’s nurse.

The proportion of patients receiving care from a Parkinson’s nurse was particularly high at Innlandet Hospital Trust and Telemark Hospital Trust, while the lowest rates were observed at Oslo University Hospital and the hospitals in Drammen and Bærum.

There was also an association between the frequency of follow-up by a neurologist and whether patients received care from a Parkinson’s nurse. Among those who were seldom followed up by a neurologist (once a year or less), a higher proportion had contact with a Parkinson’s nurse.

No statistically significant associations were found between the independent variables age, disease duration, living situation and contact with a Parkinson’s nurse at the hospital.

Adjusted analyses 

In the multivariable analyses, we adjusted for age, hospital catchment area, current living situation and follow-up by a neurologist (Table 3). Only hospital catchment area and age were significantly associated with the outcome of whether patients had contact with a Parkinson’s nurse. We found that patients under 40 years had 11 times higher odds of receiving care from a Parkinson’s nurse compared with patients over 40 years (OR = 11.6; 95% CI [2.7–49.5]).

Compared with Oslo University Hospital, patients at all hospitals except Drammen and Bærum had significantly higher odds of receiving care from a Parkinson’s nurse. The proportion was notably higher at Innlandet Hospital Trust and Telemark Hospital Trust compared with Oslo University Hospital.

At Innlandet Hospital Trust, the odds of receiving care from a Parkinson’s nurse were 16 times higher (OR 16.89; 95% CI [9.34–30.55]), and at Telemark Hospital Trust, the odds were 25 times higher compared with Oslo University Hospital (OR 25.87; 95% CI [12.68–52.80]).  

Discussion 

In this study, we found that the role and function of Parkinson’s nurses in caring for patients with Parkinson’s disease and other forms of parkinsonism is multifaceted. Treatment follow-up, information, patient education and telephone consultations were among the most important functions. In South-Eastern Norway Regional Health Authority, only one-third of respondents had contact with a Parkinson’s nurse. 

Differences in care

Substantial regional differences were identified in the study, with respondents in the catchments areas of hospitals in or near Oslo being less likely to have contact with a Parkinson’s nurse. We also observed a significant association with patient age, as a higher proportion of patients under 40 years had contact with a Parkinson’s nurse compared with older patients.

Patients who were in contact with a Parkinson’s nurse were less frequently followed up by a neurologist (once a year or less) than those without contact.

In a randomised controlled trial, Connor et al. (20) investigated the effect of telephone consultations as an intervention, with nurses serving as a consistent point of contact. They found that telephone consultations provided supportive care and were beneficial when access to specialists was limited (20). 

In our study, we also found that several respondents made use of telephone consultations with a Parkinson’s nurse. Literature review articles report that Parkinson’s nurses make a major contribution to patient education, adherence to medical treatment and the provision of ongoing support when patients encounter difficulties (21, 22). Half of the respondents in our study who did not receive care from a Parkinson’s nurse were unaware of the service.

One-third of those without contact with a Parkinson’s nurse reported that they did not need follow-up. One possible reason for this is that they may not have been familiar with the role and function of the Parkinson’s nurse. More patient knowledge about the work of a Parkinson’s nurse may boost the uptake of this follow-up service. Respondents who reported receiving care privately may have had this need met.

To develop more comprehensive health care and address society’s growing need for efficiency, more Parkinson’s nurses are needed so that care can be offered more widely to patients across all health trusts and hospitals. This finding aligns with the vision of the South-Eastern Norway Regional Health Authority: ‘High-quality, equitable healthcare services for all who need them, when they need them’ (23, p. 5). 

This requires equal access to resources, such as care from a Parkinson’s nurse. The specialist health service has a special responsibility to apply its expertise and ensure continued preventive care following disease onset (23). The specialist health service should engage more actively in preventive health care, as this is not solely the responsibility of other parts of the health service (23).

Competence requirements

Increasingly advanced symptomatic treatments are now being offered to this patient group, requiring more specialised care by Parkinson’s nurses. Various pump-based therapies and deep brain stimulation (DBS) are examples of advanced treatments that require close follow-up by a multidisciplinary team, in which Parkinson’s nurses play a key role (24, 25).

The development of more advanced medical treatments necessitates both specialist and primary care services to provide care and requires a high level of professional competence within these services (26). Another study shows the importance of having clearly defined roles and responsibilities within the patient care pathway (27). Qualitative studies based on interviews with patients with Parkinson’s disease have provided insight into patients’ experiences and perspectives (12, 25, 28).

Patients emphasise the importance of having access to a Parkinson’s nurse with specialised knowledge of the disease, who provides person-centred care and can offer guidance while the patient is under the care of a multidisciplinary team (12, 25, 28). The Norwegian Parkinson’s Registry shows high levels of satisfaction among patients who had access to a Parkinson’s nurse (3).

We identified major regional differences in the care of patients with Parkinson’s disease and other forms of parkinsonism in the South-Eastern Norway Regional Health Authority. Among respondents at Oslo University Hospital, Drammen Hospital and Bærum Hospital, 13% were in contact with a Parkinson’s nurse. In Telemark and Innlandet, the corresponding proportions were 79% and 69%, respectively, despite Oslo and Drammen having a higher population density (29).

The Norwegian Parkinson’s Registry (3) describes variations in practice and access to Parkinson’s nurses across health trusts. These findings are clinically relevant, as they indicate potential differences in the access to care based on hospital catchment area. Although the same level of follow-up care should be expected throughout the country, these findings reveal considerable variation (23, 30).

We found an association between patient age and care from a Parkinson’s nurse, with younger patients more likely to receive such care. A possible explanation is that younger patients often have different life circumstances from older patients, as they are more likely to be in employment and have young children. In addition, this group often receives more advanced treatment (31). The need for close multidisciplinary follow-up may therefore be greater in this population (31).

A literature review by van Laar et al. (32) reports that advanced infusion therapies are recommended early in the disease course when motor fluctuations occur. Such treatments require meticulous patient care and patient education (32).

Follow-up by a neurologist

In our study, we found that patients who were followed up less frequently by a neurologist were more likely to have contact with a Parkinson’s nurse. There may be several reasons for this, including the need for closer follow-up by a Parkinson’s nurse among patients who receive less frequent neurological care.

Another possibility is that a Parkinson’s nurse may address some of the patients’ needs that would otherwise require a neurologist, reducing the need for frequent follow-up by a neurologist. This finding is supported by a previous literature review (21), which shows that Parkinson’s nurses make a major contribution to patient education, adherence to medical treatment, are readily available and provide ongoing support when patients encounter difficulties. By doing so, Parkinson’s nurses help relieve the workload of doctors (21). 

Patient health literacy

Bloem et al. (4) note that a proactive approach to this patient group is beneficial, allowing preventive measures to be implemented earlier in order to optimise treatment and prevent complications (4, 21).

Parkinson’s nurses can help improve patients’ health literacy through patient education, equipping them to adhere to prescribed medications, to manage equipment and to recognise symptoms, which can facilitate independence in daily life (23).

Parkinson’s nurses provide person-centred care, which is particularly important given the complex and highly individual nature of Parkinson’s. These nurses can give specialised advice tailored to each patient (6, 12, 25, 28).

Strengths and limitations of the study  

A strength of the study is that the sample was representative in terms of age, living situation and the distribution between Parkinson’s disease and other forms of parkinsonism, when compared with data from the Norwegian Parkinson Registry (3).

In the hospital catchment areas within South-Eastern Norway Regional Health Authority, only between 9% and 18% of patients presumed to have Parkinson’s disease responded, which may limit the generalisability of the findings. The study included 1228 respondents, and there were no missing data related to the questionnaire. There are few previous studies that have examined the role and function of the Parkinson’s nurse in Norway.

This study adds to the existing knowledge base about the care of patients with parkinsonian disorders in a Norwegian context. The questionnaire was not validated, and it is unknown whether the questions were clear and interpreted uniformly, which could impact on the validity of the study (17). 

Ten per cent of the questionnaires in the study were completed by someone other than the participant. This facilitated the inclusion of participants who would otherwise have been unable to take part, thereby enhancing sample representativeness. However, differences in the quality of assistance may have impacted on the responses, for example if the helper misunderstood questions or was not completely objective. It was not possible to control for gender, education or treatment, as these variables were not included in the questionnaire.

The questionnaire was in Norwegian and distributed electronically, which may have excluded respondents with limited digital literacy or who did not understand Norwegian. We also observed that respondents were predominantly patients who had had the condition for four years or less.

As there were no exclusion criteria in the study, we cannot rule out that some respondents may have developed cognitive impairment. We have no data on those who did not participate in the study and are therefore unable to identify the reasons for non-participation.

Conclusion   

The findings provide insight into the role and function of the Parkinson’s nurse in relation to this patient group. Respondents reported primarily receiving support with treatment follow-up, information and patient education, as well as telephone consultations. Only one-third of respondents reported having contact with a Parkinson’s nurse in the South-Eastern Norway Regional Health Authority.

The study shows an association between hospital catchment area, patient age and contact with a Parkinson’s nurse, as well as between follow-up by a neurologist and contact with a Parkinson’s nurse.

The findings highlight the need for a more uniform approach to the care of patients with Parkinson’s disease and other forms of parkinsonism in Norway. Further insight is needed into why the allocation of resources differs between hospital trusts and the implications of the varying levels of care provided by Parkinson’s nurses.

Acknowledgements

We would like to thank the respondents who completed the questionnaire for their valuable contribution to the study. We also extend our thanks to Milada Hagen, a statistician at Oslo Metropolitan University, for her invaluable assistance with the statistical analyses.

The authors declare no conflicts of interest.

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