13. ParkinsonNet, the Netherlands

Parkinson’s disease is a progressive neurodegenerative disorder mostly affecting people in later years of life (Sveinbjornsdottir, 2016[1]). It is the second most common neurodegenerative disease worldwide and affects roughly 1% of people over 60. Parkinson’s disease has a complex presentation, which includes motor symptoms (e.g. slowness of movements, muscular rigidity, tremors, postural instability, speech disturbances) and non-motor symptoms (e.g. apathy, sleep problem, memory complaints, loss of smell and taste, mood disturbances, excessive sweating, fatigue and pain).

There is no available treatment that will halt or stop progression of the disease (Sveinbjornsdottir, 2016[1]). Treatment with dopaminergic drugs aims to correct the motor disturbances. Surgical therapy using deep brain electrical stimulation can sometimes be used when drug therapy fails to control the motor symptoms.

However, medical management is only partially effective in controlling the symptoms of Parkinson’s disease. Allied health treatments, such as physiotherapy, occupational therapy and speech therapy, can help people with Parkinson’s disease in their daily activities and participation in society (Radder et al., 2017[2]). Nevertheless, among allied health professionals there often is a lack of expertise and experience in treating patients with Parkinson’s disease (Ypinga et al., 2018[3]).

ParkinsonNet was developed in 2004 at Radboud University Medical Centre in the Netherlands to deliver high quality, specialist care for Parkinson’s disease. Through regional networks, allied health interventions are delivered by specifically trained therapists who work according to evidence-based guidelines. These specialised therapists become highly experienced as they manage a high caseload of patients with Parkinson’s disease (Ypinga et al., 2018[3]).

There are over 70 regional ParkinsonNet networks covering the whole of the Netherlands. They bring together over 3 500 specialists healthcare professionals, including neurologists, physical therapists, occupational therapists, speech-language therapists, Parkinson’s nurses, dietitians and social workers. A regional co-ordination (generally a physiotherapist) manages each network, which comes together three times a year for continuing education. The regional co-ordinators meet yearly at a national level, to exchange knowledge and experiences.

In addition to organising national meetings, a central ParkinsonNet team supports the regional networks by providing consultancy services on how to set up and maintain a disease-specific care network, various forms of education on Parkinson’s disease and its treatment, and a one-year “Train the Trainer” curriculum. These trainers also benefit from a yearly skills lab, bringing together experts from around the world to exchange ideas and knowledge on Parkinson’s disease.

The ParkinsonNet programme has also developed evidence-based guidelines for Parkinson’s disease, including in the fields of nutrition, physiotherapy, occupational therapy, speech and language therapy, and for self-management of the disease.

This section analyses ParkinsonNet against the five criteria within OECD’s Best Practice Identification Framework – Effectiveness, Efficiency, Equity, Evidence-base and Extent of coverage (see Box 13.1 for a high-level assessment of ParkinsonNet). Further details on the OECD Framework can be found in Annex A.

There are a number of studies evaluating the effectiveness of ParkinsonNet, which look at health outcomes, continuity of care, and daily functioning. Results from prominent studies are summarised below.

One analysis of claims data showed a 50% reduction in the rate of hip fractures as a result of ParkinsonNet treatment (Bloem et al., 2017[4]). Another retrospective analysis of claims data found that people who were treated by a specialised physiotherapist had significantly fewer Parkinson’s disease-related hospital admissions than those who received care from a general physiotherapist: 17% of people versus 21%. This was despite receiving fewer treatment sessions – 33.7 compared to 48.0 per year (Ypinga et al., 2018[3]).

This same study also showed how ParkinsonNet improved the continuity of care: people who received specialised care saw the same therapist for 93% of visits, compared to 81% for people receiving usual care (Ypinga et al., 2018[3]).

A randomised controlled trial (RCT) compared people receiving ParkinsonNet’s specialised occupational therapy to people receiving no occupational therapy, and found that it led to an improvement in self-perceived performance in daily activities in patients with Parkinson’s disease, as measured using the evidence-based Canadian Occupational Performance Measure (Sturkenboom et al., 2014[5]).

The start-up cost of building ParkinsonNet nationwide are estimated at nearly EUR 3 million over five years (see Table 13.1) (Bloem et al., 2017[4]). After this initial start-up period, the annual cost are estimated at around EUR 1 million per year. For the Netherlands, where around 3 000 trained professionals collectively serve a total potential volume of 40 000 Parkinson patients, these ongoing annual cost equate to roughly EUR 25 per patient per year.

ParkinsonNet has been associated with cost savings, as it results in (Bloem et al., 2017[4]):1

  • Greater efficiency of care, as ParkinsonNet patients require fewer treatment sessions;

  • Reductions in disease complications (specifically, fewer inpatient admissions); and

  • Improved patient self-management, reducing dependence on medical services.

The retrospective analysis of claims data found that people who were treated by a specialised physiotherapist had significantly fewer Parkinson’s disease-related complications than those who received care from a general physiotherapist, despite receiving fewer treatment sessions (33.7 compared to 48.0 per year) (Ypinga et al., 2018[3]). As a result, people receiving physiotherapy from specialised therapists had lower direct cost related to physiotherapy (EUR 933 per year versus EUR 1 329), as well as lower overall Parkinson’s related healthcare cost (EUR 2056 versus EUR 2 586).

An earlier cluster randomised trial found that total costs over 24 weeks were EUR 727 lower in ParkinsonNet clusters compared with usual-care clusters (roughly EUR 1 400 per year) (Munneke et al., 2010[6]). This was driven mostly by lower informal care cost (EUR 313) and day-hospital rehabilitation (EUR 123).

Comparing these savings of between EUR 500 and EUR 1 400 per patient per year to ParkinsonNet’s ongoing running cost of EUR 25 per patient per year suggests that this is a cost-saving, efficient intervention.

An analysis of claims data from a large Dutch health insurer (CZ Groep, which has a market share of 21%) selected all patients with a diagnosis for Parkinson’s disease, and who had received treatment by any physiotherapist (specialised or usual care) for Parkinson’s disease during at least one of the three observation years (2013-15) (Ypinga et al., 2018[3]). This sample could be representative of the wider population, as around 23% of the overall Dutch population with Parkinson’s disease was covered by CZ Groep (similar to their market share), and neither CZ Groep nor any other Dutch health insurer applied selective contracting during the study period.

Analysis of this sample shows some demographic differences in patients receiving specialised physiotherapy versus usual care physiotherapy (Table 13.2). Patients receiving specialised physiotherapy were slightly younger, more likely to be male, of a lower socio-economic status, less likely to be depressed and on fewer drugs for Parkinson’s disease. However, differences were small and likely not clinically meaningful.

Several studies evaluating ParksinonNet are available. For the purpose of this case study, the study undertaken by Ypinga et al. (2018[3]) has been used to assess the quality of the evidence-base. This study was chosen because it is recent, it recorded statistically significant results; and it looks at both effectiveness and efficiency. While there is also an RCT looking at ParkinsonNet – generally considered the gold standard in study design – this study compared people receiving ParkinsonNet’s specialised occupational therapy to people receiving no occupational therapy at all (Sturkenboom et al., 2014[5]). Therefore, the effect it measures will be partially due to having any occupational therapy, rather than specialised occupational therapy.

The Quality Assessment Tool for Quantitative Studies rates this study as “strong” in many areas (see Table 13.3) (Effective Public Health Pratice Project, 1998[7]). While it was not a blinded RCT, the researchers adjusted for all confounders and used a large, representative real-life population.

Analysis of claims data shows that between 2012 and 2017, the percentage of people with Parkinson’s disease who receive specialists physiotherapy, occupational therapy or speech therapy, defined as therapy delivered by therapists participating in ParkinsonNet, has increased considerably (see Figure 13.1) (Bloem et al., 2021[8]). For both physiotherapy and speech-language therapy, the overall increase in patients receiving therapy was driven solely by an increase in specialised therapy. For occupational therapy, there was a small increase in the number of people receiving generic therapy, but the increase in specialised occupational therapy far outweighed this. The number of people with Parkinson’s receiving specialised physiotherapy, speech therapy and occupational therapy increased by 147%, 157% and 187%, respectively, over the five years studied.

Across the country, the proportion of people receiving specialised therapy has increased (Bloem et al., 2021[8]). In 2017, most regions saw more than 60% of people receiving specialised speech-language and occupational therapy. The coverage of physiotherapy is lower, but relatively uniformly distributed over the country.

In this section, recommendations are given for ParkinsonNet administrators, as well as policy makers in other countries who are considering implementing a similar programme, as to how the performance of the programme could be further enhanced.

In the Netherlands, which is relatively densely populated, it has generally been possible to increase the number of Parkinson’s patients one specialists sees while keeping the average travel time limited. However, this may not be possible in more sparsely populated areas. In this case, the possibilities for using telehealth could be explored to ensure patients still receive specialised care (Bloem et al., 2020[9]). Telehealth can also help increase efficiency by reducing travel time for staff or patients, for example. Previous studies support the use of telehealth to treat patients with Parkinson’s disease (e.g. (Chen et al., 2018[10])).

For some parts of the care team and process (e.g. neurologist consultations, personal care managers, peer-to-peer consultations between specialists), this may be more straightforward than for physiotherapy, which is generally more hands-on. To deliver physiotherapy using telehealth solutions, the following considerations should be taken into account (Cottrell and Russell, 2020[11]):

  • Triage: patient factors such as age, co-morbidities, mobility or balance deficits, language barriers and visual, hearing, or cognitive impairments may determine the eligible for telehealth. For complex patients, a hybrid approach where an in-person assessment is performed initially and subsequent management provided via telehealth may be more successful. Other factors such as the availability of a private space in the patient’s residence and internet connection also play an important part.

  • Platform selection: it is recommended to choose a single videoconferencing platform or software, to limit the amount of training needed for staff and patients. This platform needs to be carefully selected to meet the needs of the service. For example, for physiotherapy a platform offering a wide field of vision may be required. Moreover, some software solutions offer measurement tools (e.g. goniometry) that may be of use. It should also be easy to use for patients with Parkinson’s, who may exhibit symptoms such as tremors or speech disturbances, which can complicate the use of teleconferencing software.

  • Physical environment: the physical environment also needs to be considered to ensure the success of physiotherapy teleconsultations. This includes, for example, ensuring a large enough space free from clutter, where the required equipment is available (e.g. chair, bed, weights). To improve the video and audio quality, it may be necessary to use a headset, eliminate background noise, improve lighting and choose a neutral background.

  • Ethical and professional considerations: it is important to consider ethical and professional concerns around telehealth for physiotherapy, such as the scope of services that can be delivered remotely, and whether professional indemnity insurance policies explicitly cover the provision of healthcare via telehealth. Patients may need to provide specific consent, or require information on telehealth. As with in-person care, privacy and confidentiality need to assured.

While the analysis of claims data from 2013-15 did not show major differences in patients in and outside the programme, the programme has since expanded significantly, and the picture may be different now. Moreover, the regional approach of the programme means that there may be local differences in process and outcomes.

A register of participants could provide the data needed for an in-depth analysis of the differences in outcomes across population groups. Contrary to claims data, the register can be designed specifically for the research question, and provide better insights on severity of the disease, treatments received, and demographic factors, as well as collect medical, health, well-being and satisfaction outcomes (Box 13.2). Claims data could be used to create an artificial control group.

This section explores the transferability of the ParkinsonNet programme from the Netherlands to other OECD and non-OECD EU countries and is broken into three components: 1) an examination of previous transfers; 2) a transferability assessment using publicly available data; and 3) additional considerations for policy makers interested in transferring ParkinsonNet.

ParkinsonNet has been transferred to a number of other countries and regions, including California, Luxembourg, the Czech Republic and Norway. A transfer to the Niederrhein region in Germany was less successful, but resulted in valuable lessons learned (see Box 13.3).

Relative to other integrated care models, in particular, macro-level models that change affect multiple levels of care, ParkinsonNet is transferable given it does not require major infrastructure changes or new technologies. However, to ensure ParkinsonNet achieves the same outcomes in a different setting, it must be adapted to suit the needs of the population, health professionals and other stakeholders affected. Further, it is necessary to keep the programme’s core features, in particular ensuring health professional are highly trained in delivering care to patients with Parkinson’s disease.

The following section outlines the methodological framework to assess transferability and results from the assessment.

Details on the methodological framework to assess transferability can be found in Annex A.

Indicators from publicly available datasets to assess the transferability of ParkinsonNet are listed in Table 13.4. Please note, the assessment is intentionally high level given the availability of public data covering OECD and non-OECD European countries.

ParkinsonNet in the Netherlands benefits from a high number of physiotherapists and a high population density (Table 13.5). Moreover, there is a relatively high prevalence of Parkinson’s disease. All of these factors support the model of specialised care with a large Parkinson’s disease caseload for specialists. Many other countries have significantly lower population densities and fewer physiotherapists – which should be considered before implementing ParkinsonNet.

While a single-payer health system allows the payer to capitalise on the savings generated by the network through greater efficiency of care and fewer disease complications, in some cases other financial models may work as well. In the Netherlands, ParkinsonNet managed to establish agreements with the major insurers in the country. In California, ParkinsonNet is part of Kaiser Permanente, an integrated managed care consortium.

To help consolidate findings from the transferability assessment above, countries have been clustered into one of three groups, based on indicators reported in Table 13.4. Countries in clusters with more positive values have the greatest transfer potential. For further details on the methodological approach used, please refer to Annex A.

Key findings from each of the clusters are below with further details in Figure 13.2 and Table 13.6:

  • Countries in cluster one have population and economic factors that are beneficial for the transfer of ParkinsonsNet. On average, these countries have a high population density, a high prevalence of Parkinson’s disease, and a single-payer health system. However, a relatively low density of physiotherapists may mean that it is not possible for them to specialise fully.

  • Countries in cluster two have a relatively high number of physiotherapists, as well as favourable payment systems. However, before transferring these countries should explore whether the population density and care demand allows for specialisation of care.

  • Countries in cluster three score high on both the population and sector factors, but generally do not have a single-payer health system. This means that other ways of capitalising on the econonomic benefit of ParkinsonNet need to be found. The Netherlands, which is the owner of this intervention, falls under this cluster.

Data from publicly available datasets is not ideal to assess the transferability of ParkinsonNet. For example, no internationally comparable data is available on the use of allied health services in the treatment of Parkinson’s disease, nor on the political landscape around the condition. Box 13.4 outlines information policy makers should consider before transferring ParkinsonNet.

ParkinsonNet delivers high quality, specialist care for Parkinson’s disease. Through regional networks, allied health interventions, such as physiotherapy, occupational therapy and speech therapy, are delivered by specifically trained therapists who work according to evidence-based guidelines. These specialised therapists manage a high caseload of patients with Parkinson’s disease and thus become highly experienced.

Evidence shows that specialised care offered through ParkinsonNet lowers complications such as falls, fractures and hospitalisations. This, combined with a fewer treatment sessions needed, results in considerable cost-savings. The network has expanded quickly to reach national coverage: between 2012 and 2017 the proportion of people with Parkinson’s disease receiving specialised physiotherapy, speech therapy and occupational therapy increased by 147%, 157% and 187%, respectively.

While the Netherlands benefits from a high population density, making it possible to increase the number of Parkinson’s patients one specialists sees while keeping the average travel time limited, this might not be the case in other countries. The possibilities for using telehealth could be explored to ensure patients still receive specialised care. A register of participants could help understand who is receiving care, and the outcomes for different population groups.

Box 13.5 outlines next steps for policy makers and funding agencies regarding ParkinsonNet.


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← 1. Of the 10 studies evaluating cost savings, only two showed no significant changes in cost saving.

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