Wide variation in care for Parkinson’s disease across Dutch outpatient clinics provides opportunities for optimization: Results of a cross-sectional survey among healthcare providers

Wide variation in care for Parkinson’s disease across Dutch outpatient clinics provides opportunities for optimization: Results of a cross-sectional survey among healthcare providers | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Wide variation in care for Parkinson’s disease across Dutch outpatient clinics provides opportunities for optimization: Results of a cross-sectional survey among healthcare providers Anke Wijers, Gerrit Tissingh, Silvia MAA Evers, Ghislaine APG van Mastrigt This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8514159/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 6 You are reading this latest preprint version Abstract Background Management of Parkinson’s disease (PD) requires adequate monitoring and long-term specialized care. The rising PD-prevalence makes this increasingly difficult to attain. Detailed information on the organization of care for people with PD (PWP) can help identify which aspects of care can be improved. This study aims to provide a detailed description of the outpatient care for PWP in the Netherlands. Methods We conducted a cross-sectional survey study among healthcare professionals in Dutch hospitals treating PWP. Data were described using frequency, mean, median, interquartile range, or range, depending on the type and distribution of the variable. Between-group comparisons were calculated using the Mann-Whitney U-test. Results Between February 2023 and September 2024, 32 of 69 hospitals responded (46%). Each year, PWP had on average 2.1 outpatient visits with a neurologist and 2.2 with a PD nurse. This adds up to two hours of face-to-face contact per year (range: 39–226 minutes). Contact time is longer in academic hospitals (mean: 165 minutes; range: 129–183 minutes) and shorter in hospitals using telemonitoring (mean: 84 minutes; range 39–126 minutes). Telemonitoring is part of routine care in 16% of hospitals. Ninety-one percent of hospitals participate in a multidisciplinary team (MDT), although less than 10% of PWP are discussed yearly, and the variation in composition of MDTs is substantial. PWP admitted to a nursing home often stop receiving neurological care. Conclusions This study provides important new insights into how outpatient care for PWP is organized in the Netherlands and how it can be made more sustainable. We observed substantial variation between hospitals in visit frequency, consultation duration, MDT composition, and the organization of care provided to PWP in nursing homes. Telemonitoring, although currently used in fewer than one in five hospitals, is associated with lower outpatient contact time and may help streamline follow-up and improve efficiency. By mapping these variations, this study identifies clear opportunities to optimize and future-proof PD-care. Parkinson disease PD clinical pathway outpatient clinics outpatient care hospital the Netherlands Figures Figure 1 Figure 2 Background Parkinson’s disease (PD) is a chronic neurodegenerative disorder. It mainly affects elderly people, although 25% of people with PD (PWP) are younger than 65 years old at the time of diagnosis. Presentation before the age of 40 is rare. The disease is most well-known for its motor symptoms, such as bradykinesia, tremor, rigidity, and gait difficulties. However, PWP can suffer from a large variety of other symptoms, including mood disorders, anxiety, hallucinations, fatigue, cognitive decline, and autonomic dysfunction, among others. Several pharmacological and surgical treatment options exist to alleviate PD symptoms. However, there is currently no cure or disease-modifying treatment, and the disease follows a progressive course. 1 The prevalence of PD increased by 274% worldwide between 1991 and 2020. 2 This is thought to be partly caused by an aging population, but also to be related to declining smoking rates and the by-products of industrialization. 3 Specifically, epidemiologic studies have shown solvents, heavy metals, and pesticides to be associated with the development of PD. 4,5 The disease has a high burden, with a yearly loss of 7.5 million disability-adjusted life years throughout the world. 2 Recent Dutch and European data indicate that the societal and healthcare costs of PD are substantial: in the Netherlands, care expenditure for PD and other parkinsonisms was estimated at €136 million in 2019 6 , while recent cost-of-illness studies report total societal costs of approximately €14,500–€22,500 per patient per year in the Netherlands and comparable Western European countries. Healthcare costs typically account for 45–55% of total costs and there is substantial cross-country variation. 7 – 9 Adequate monitoring and long-term specialized care are highly recommended to properly manage PD. 1 Regular contact with a movement disorder specialist both improves clinical outcomes and reduces healthcare costs in relation to PD. 10,11 However, due to its rising prevalence, it is increasingly difficult to provide this care for all PWP. For example, in the United Kingdom, some PWP are only reviewed by a movement disorders specialist once every 12–18 months due to insufficient resources in the national health service. 12 It will likely be necessary to organize neurological care more efficiently to keep it accessible for a growing group of PWP. Various guidelines on the management of PD mention aspects of healthcare organization. 13 – 16 These include the importance of appointing a care coordinator, network medicine, treatment by specialized healthcare workers, and the notion that PWP require ongoing medical care and consultation with neurologists from disease onset until the end of life. However, these guidelines hardly specify how this should be implemented in practice, and no recommendations are provided on aspects such as the frequency or duration of consultations. Other guidelines for PD offer no advice on healthcare organization at all. 17 – 19 Detailed information on the current organization of care for PWP is also lacking, which makes it difficult to determine where improvements are possible. For almost ten years, telemedicine has been suggested as a possible solution to reduce the costs of care for PWP, limit its burden on healthcare systems, and improve the quality of care. 20 , 21 Telemedicine is defined as “the remote diagnosis and treatment of patients using telecommunications technology” 22 and is also referred to as ‘telehealth’ or ‘eHealth’. It exists in various forms, including web portals, mobile applications, wearables, video conferencing, robotics, and home automation. Systems for long-term home monitoring of patients are called ‘telemonitoring’. The results of several studies regarding eHealth initiatives for PD support the promise of telemedicine. For example, in the Netherlands, telemonitoring using online questionnaires was associated with a reduction in outpatient healthcare consumption. 23 In the United Kingdom, monitoring of PD using the Parkinson’s KinetiGraph led to lower total healthcare costs and an improvement in quality-adjusted life years. 24 The positive effects of telemedicine have also been described for various other chronic diseases. 25 , 26 However, detailed information about the current organization of care for PWP and the use of telemedicine is lacking, making it difficult to replicate best practices. A clear description of the organization of PD care might provide insights into where telemedicine can be used most effectively. In summary, given the increasing number of PWP combined with persistent workforce shortages and rising healthcare costs, strategic choices must be made to organize care as efficiently as possible. Recent European reports show substantial variation in access to specialized PD care and highlight shortages of clinicians trained in PD management. 27 Moreover, demand for integrated, multidisciplinary care is growing as the clinical complexity of PD increases over time. 28 Therefore, for PD, it is crucial to map how care is currently organized, identify what works well in existing care pathways, and determine what could be improved. In addition, gaining insights into the current use of telemonitoring is valuable because digital health tools may help relieve workforce pressure, improve continuity of care, and enable earlier detection of complications. This approach increasingly recognized in PD care strategies. 27 . 29 This study aims to provide a comprehensive description of outpatient care delivery for PWP in Dutch hospitals. Such an overview can reveal where opportunities lie to organize this care more efficiently, with or without the support of telemonitoring, for example, by optimizing follow-up intervals, interdisciplinary collaboration, or remote monitoring. Mapping the current situation is an essential first step toward making well-founded decisions on how to ensure that PD care remains sustainable and future-proof in the coming decades. Context In the Netherlands, PD is managed primarily by neurologists, who work together closely with specialized nurses, nurse practitioners, or physician assistants. For the sake of readability, the term ‘PD nurse’ will be used for the remainder of this article to refer to these three groups of healthcare professionals. PWP usually have several outpatient clinic appointments per year, often alternating between the neurologist and PD nurse. In addition, in most cases, paramedics are involved in the care of PWP, in particular physiotherapists, speech therapists, occupational therapists, and dieticians. These paramedics mostly work outside of the hospital and generally belong to a network of specialized PD care providers. If necessary, other healthcare providers such as a psychologist, rehabilitation physician, or geriatrician can also be involved. Many hospitals have a multidisciplinary team (MDT) meeting in which various healthcare providers jointly consider best care for a PWP. This is generally engaged when there is a multitude of problems or if a PWP is considered for device-aided therapy. The general practitioner is not involved in the substantive treatment of PD but often plays a role in the guidance of PWP. Methods We designed a survey study with a cross-sectional descriptive design to gain insights into the outpatient care of PWP. The study adhered to the Consensus-Based Checklist for Reporting of Survey Studies (CROSS 30 ; see additional file 1 for the completed reporting guideline). It was conducted between February 2023 and September 2024, although most participants were included between June and August 2024. Ethical approval was obtained from the Zuyderland-Zuyd Medical Ethical Committee (METCZ20220058). All participants provided written informed consent prior to inclusion in the study. Approaching participants Questionnaires could be completed by either a neurologist – preferably a movement disorders specialist – or a PD nurse from any hospital in the Netherlands. A call for participation was issued at the spring symposium of the Movement Disorders Working Group of the Dutch Society of Neurology (Nederlandse Vereniging voor Neurologie, NVN). Additionally, this call was disseminated through the NVN newsletter. If no response had been received from a hospital, one or more (movement disorder) neurologists were personally approached. This was done directly if their contact details were known to the authors, and otherwise via the hospital where they worked. When no response was received, a second and – if necessary – third attempt at contact was made. Due to the limited number of hospitals in the Netherlands, we aimed to include every hospital. Questionnaire content A questionnaire was developed by the authors based on their clinical expertise and aimed to gain information on the organization of outpatient care for PWP in the Netherlands. This Dutch-language questionnaire contained eighteen questions and up to six sub-questions, depending on the answers previously given. An English translation of the questionnaire can be found in the online supplement (see additional file 2). The following items were included: type of hospital; number of PWP receiving treatment; number of movement disorder specialists and PD nurses; frequency and duration of outpatient appointments; frequency of telephone appointments; use of telemedicine, treatment of PWP living in a nursing home; existence and organization of an MDT; and an open question inquiring about any other relevant aspects of care. Questionnaire completion Participants could complete the questionnaire online or via a telephonic interview. When choosing to complete the questionnaire online, participants were sent an e-mail with a personalized link that led directly to Research Manager©, the electronic case report form (eCRF) used in Zuyderland Medical Center, where the questionnaire could be filled out. When choosing a telephonic interview, the answers given were entered into the eCRF by a researcher (AW). The eCRF was only accessible by two members of the study team (AW and GT) and only via secure servers from the Zuyderland Medical Center. Exports made for data analysis were stored on the same secure servers with the same limited accessibility. Limits were set on the numeric values to minimize human error in data entry. If someone wanted to enter a value outside this range, this could only be done after confirmation that the number entered was correct. Items could not be skipped to avoid missing data. To prevent multiple inputs from the same hospital, participants were asked to supply the name of their hospital. This information was used solely to identify duplications and was deleted before the analysis of the results began. Statistical analysis Data were described using frequency, mean, median, interquartile range, or range, depending on the type and distribution of the variable. Some data were narratively summarized. Between-group comparisons were calculated using the Mann-Whitney U-test due to the non-parametric distribution of the data. Statistical significance was set at p < 0.05 (two-tailed). No sensitivity analyses were conducted. Subgroup analyses were performed based on hospital type (academic vs. non-academic), center-of-expertise status, and the use of telemonitoring to examine differences in outpatient visit duration and total outpatient contact time. All analyses were conducted using Microsoft Excel® (Office 365 ProPlus). Results All 70 hospitals in the Netherlands were approached, but one of them did not treat PWP. The response rate was 46.4% (32 hospitals included/69 hospitals treating PWP). Three declined to participate, and 21 did not respond. Forty-six healthcare professionals agreed to participate, of whom 33 (71.7%) completed the questionnaire. One hospital returned two questionnaires, one from each of its main locations, whereby this data was combined before the analyses. See Fig. 1 for the flow diagram. Hospitals that did not complete the questionnaire did not differ from the participating ones regarding hospital type. The data contained information from three academic medical centers, fifteen top clinical hospitals, and fourteen peripheral hospitals. Nine hospitals (28.1%) describe themselves as centers of expertise regarding movement disorders. Number of patients and staff Table 1 summarizes the primary results of the survey. The average number of PWP treated is 542 per hospital (range: 200–1,300). PWP are treated by movement disorder specialists in all hospitals but one. Most hospitals have two or three neurologists specialized in movement disorders, with a range of one to five. There is one outlier (an academic center of expertise) with nine movement disorder specialists (including fellows). All hospitals have at least one PD nurse supporting the treatment of PWP. Most employ one or two, although this can increase to four in large hospitals. The same outlier mentioned above has eight. Table 1 – Primary results Type of hospital N (% of total) Academic medical center 3 (9.4%) Top clinical hospital 15 (46.9%) Peripheral hospital 14 (43.8%) Movement disorders center of excellence 9 (28.1%) Number of patients and staff per hospital median (IQR) Number of PWP treated 500 (265–735) Number of movement disorder specialists † 2 (2–3) Number of PD nurses 2 (1–2) Number of visits per patient per year N (% of total) Planned based on disease severity 21 (65.6%) Planned in more or less fixed frequency 11 (34.4%) median (IQR) Neurologist In person 2 (1,5 − 3) Telephonic 2 (1–2) PD nurse In person 2 (2–2) Telephonic 2 (2–4) Duration of outpatient visits median (IQR) Neurologist First visit 30 (30–30) Repeat visit 15 (15–20) PD nurse First visit 60 (45–60) Repeat visit 30 (30–45) Total duration of outpatient visits per patient per year median (IQR) Neurologist 31.5 (27.3–53.3) PD nurse 63.8 (61.5-107.3) Total 114.5 (93-146.8) Use of telemedicine ‡ N (% of total) e-mail 25 (78.1%) Online portal Hospital-wide 19 (59.3%) PD specific 3 (9.4%) Mobile app linking to online portal, with message functionality 6 (18.8%) Telemonitoring 5 (15.6%) Other 4 (12.1%) Treatment of patients admitted to a nursing home N (% of total) Lost to follow-up 18 (56.3%) Seen at the outpatient clinic 4 (12.5%) Regular consultation with nursing home physician § 4 (12.5%) Patients admitted to nursing home are visited by neurologist and/or PD nurse ¶ 6 (18.8%) Short-term admission to a nursing home or rehabilitation center N (% of total) Available 5 (15.6%) Currently being established 1 (3.1%) Not available 26 (81.3%) N = number, IQR = interquartile range, † = based on 31 hospitals, ‡ = multiple types of telemedicine per hospital possible, § = 25–50% of patients are discussed at least once per year, ¶ = approximately 10% of patients are visited at least once per year. Outpatient visits In eleven hospitals (35.5%), patients are seen at a more or less fixed frequency. In the others, the number of visits depends on the disease severity. Patients have on average 2.1 outpatient appointments per year with a neurologist and 2.2 with a PD nurse (range: 1–4 for both). This amounts to approximately two hours of face-to-face contact per year. However, the duration of these contacts strongly varies between hospitals (See Fig. 2 ). Use of telemedicine All hospitals in this study use some type of telemedicine in the care of PWP, most commonly e-mail (78.1%) or a hospital-wide patient portal (59,4%). Thirteen hospitals (40.6%) – all non-academic hospitals – use one or multiple more intensive telemedicine methods, including a mobile app that links to the patient portal and allows patients to communicate directly with their healthcare provider (n = 6) or a PD-specific patient portal (n = 3). Five hospitals (15.6%) have implemented a telemonitoring system in their daily practice. Multidisciplinary team meeting The majority (90.6%) of the hospitals in this study participate in an MDT meeting, where PWP are discussed in case of concerns or special circumstances (see Table 2 ). An estimated 9% of PWP are discussed at least once per year. The composition of the MDTs strongly varies. Apart from a hospital’s neurologist and PD nurse, there is an average of almost four other participants. However, 18 different types of healthcare providers take part in the various MDT meetings. The most commonly included entity is a center of expertise (51.7%), followed by a physiotherapist (44.8%), an occupational therapist (41.4%), a speech therapist (37.9%), or another hospital that is not a center of expertise (34.5%). Table 2 – Multidisciplinary team meeting N (percentage) Hospitals participating in a MDT meeting 29 (90.6%) Mean (range) Percentage of patients discussed in MDT meeting at least yearly† 8.1 (1–25) Number of participants in MDT meeting (besides neurologist and PD nurse) 3.8 (1–14) Participants in multidisciplinary team meeting N (percentage) Hospital Center of expertise 15 (51.7%) Other hospital, not a center of expertise 10 (34.5%) Auxiliary therapist Physiotherapist 13 (44.8%) Occupational therapist 12 (41.4%) Speech therapist 11 (37.9%) Psychologist 7 (24.1%) Dietician 4 (13.8%) Physician Rehabilitation physician 8 (27.6%) Nursing home physician 7 (24.1%) Psychiatrist 6 (20.7%) Primary care physician 5 (17.2%) Geriatric specialist (not a nursing home physician) 2 (6.9%) Clinical geriatrician 1 (3.4%) Pharmacist 1 (3.4%) Other Primary care PD nurse 2 (6.9%) Social work 1 (3.4%) Patient 1 (3.4%) Informal care giver 1 (3.4%) Participation in and design of multidisciplinary team meetings for PD. † based on n = 24 (five hospitals did not provide an estimate), MDT = multidisciplinary team, PD = Parkinson’s disease. Treatment of PWP in nursing homes If PWP are admitted to a nursing home, the follow-up is discontinued in 56.3% of hospitals. In the others, they are either visited in the nursing home by the neurologist and/or PD nurse (18.8%) or seen at the outpatient clinic, the same as any other patient (12.5%). Four (12.5%) hospitals have regular consultations with the nursing home physicians in their region to discuss any questions or particular details regarding their PD. Six hospitals (18.8%) offer the option of short-stay admission in a local nursing home or rehabilitation facility for individuals with dysregulated PD, or are in the process of establishing such a ward. Subgroup analyses Table 3 displays the results of the subgroup analyses. There is strong variation between hospitals in terms of both the duration of outpatient consultations and the total outpatient contact time per year. Most notably, academic hospitals have a significantly longer average duration of an outpatient visit with a neurologist – for both new patients (p < .001) and repeat visits (p < .01) – compared to other hospitals. Total outpatient contact time per year with a neurologist and overall (p < .01 and < .05, respectively) is also longer in academic hospitals. The duration of a first visit with a neurologist in a center of expertise is longer than in a non-expertise center. However, this difference can be explained by the fact that all academic hospitals – which have a longer visit duration – in this study are centers of expertise. Table 3 – Results of subgroup analyses Duration of outpatient consultations (min) Total outpatient contact time (min/year) First consultation with neurologist Repeat consultation with neurologist First consultation with PD-nurse Repeat consultation with PD-nurse Contact time with neurologist Contact time with PD-nurse Total contact time Subgroup analyses Academic Hospital Yes (n=3) 60.0 *** (60.0-60.0) 26.7 ** (20.0-30.0) 60.0 (45.0-75.0) 45.0 (30.0-60.0) 73.3 ** (63.0-93.0) 91.5 (64.5-120.0) 164.8 * (128.5-183.0) No (n=29) 30.3 *** (20.0-45.0) 15.6 ** (10.0-20.0) 54.1 (30.0-90.0) 37.2 (15.0-60.0) 35.9 ** (16.5-81.0) 80.7 (22.5-180.0) 116.6 * (39.0-225.5) Center of expertise Yes (n=9) 40.6 *† (30.0-60.0) 20.0 (15.0-30.0) 56.7 (30.0-90.0) 38.3 (15.0-60.0) 52.6 (16.5-93.0) 78.5 (45.0-123.0) 131.1 (76.5-128.5) No (n=23) 30.2 *† (20.0-45.0) 16.5 (10.0-20.0) 53.9 (30.0-90.0) 37.8 (20.0-60.0) 34.3 (16.5-62.5) 82.9 (22.5-180.0) 117.2 (39.0-225.5) Use of tele-monitoring Yes (n=5) 32.0 (25.0-40.0) 17.0 (15.0-20.0) 54.0 (30.0-90.0) 34.0 (20.0-45.0) 26.5 (16.5-31.5) 57.0 (22.5-94.5) 83.5 * (39.0-126.0) No (n=27) 33.3 (20.0-60.0) 17.6 (10.0-30.0) 54.8 (30.0-90.0) 38.7 (15.0-60.0) 41.9 (16.5-93.0) 86.2 (42,5-180.0) 128.1 * (76.5-225.5) All outcomes are presented as mean (range). * = difference is significant at p < .05, ** = difference is significant at p < .01, *** = difference is significant at p < .001, † = difference can be explained in full due to all included academic hospitals being a center of expertise; min = minutes, n = number. In this study, telemonitoring is associated with less total outpatient contact time (p < .05). Hospitals using a telemonitoring system have on average 45 minutes less total outpatient contact time per patient per year compared to hospitals that do not make use of telemonitoring. Use of telemonitoring was only reported by non-academic hospitals. When removing the academic hospitals from the analysis, a statistically significant difference remains between hospitals that use telemonitoring and those that do not (p < .05). Discussion This is the first study to investigate the organization of outpatient care for PWP in the Netherlands. PWP have on average just over two hours per year of face-to-face contact with their neurologist or PD nurse and all hospitals indicate that they see their patients on average at least twice a year at the outpatient clinic. In addition, the vast majority of hospitals take part in MDT meetings. Our overall impression is that it is currently well organized, with sufficient time for the patient. However, it can be noted that despite being promising in scientific literature, the use of telemonitoring has only been implemented in regular care in less than 20% of hospitals. There is substantial variation between hospitals regarding the number of outpatient consultations and their duration. The total contact time per year differs by a factor of 5.8 between the hospitals devoting the least and most time per patient. On average, academic hospitals and those that do not make use of telemonitoring have a higher total contact time per patient per year. There are also substantive differences regarding the design of MDTs. Seven out of eighteen (38.9%) types of participants only take part in one or two MDTs. Current literature provides several indications that telemonitoring can help to improve care for PWP. Our study shows that PWP have outpatient contact for on average two hours per year, which means that they spent 8.758 hours per year elsewhere, where healthcare providers have no insight into how they are doing. Furthermore, it has previously been shown that a hospital assessment often does not reflect how a PWP functions at home. 31 Telemonitoring can help healthcare professionals to obtain a better and more continuous picture of the functioning of PWP and thus make better-informed treatment suggestions. Even more importantly, many PWP themselves want to use digital technologies to actively manage living with PD. 32 When they have access to their data and receive personalized feedback, PWP can be optimally supported in their self-management. Additionally, telemonitoring might be a solution for the PWP in nursing homes that currently have no contact with a PD specialist. Although many of them would like to have a neurologist or PD nurse involved in their care, they can be hesitant to pay visits to an outpatient clinic due to mobility issues. 33 Telemonitoring might be able to bridge this gap. In addition to improving the quality of care, the results of this study provide an indication that telemonitoring might also make the care for PWP more sustainable. The prevalence of PD is expected to increase by 112% between 2021 and 2050. 34 Many additional PD nurses and neurologists would have to be trained to maintain the current way of care for these people, which reflects a huge challenge given the shortage of healthcare professionals. 35 In our study, the average outpatient contact time per year is 34.8% lower in hospitals that use telemonitoring compared to hospitals that do not. Even if only part of this relationship is causal, wider use of telemonitoring might help alleviate the growing pressure on care for PWP. Furthermore, if telemonitoring can help reduce the number of outpatient contacts by one per year – as our data suggests – this would have a positive effect on both costs and environmental impact, as a decrease in travel movements reduces CO 2 emissions. The precise magnitude of this effect is difficult to calculate, partly because it is necessary to consider the energy consumption of devices and data centers for telemonitoring. It is positive to note that several hospitals have realized a short-stay department for PWP in their region or are working on it. It has previously been shown that such an admission can reduce the complaints of PWP, improve their daily functioning, and postpone a definitive nursing home admission. 36 A detailed description of what such a department should look like can be found in the German “Parkinson's disease” guideline. 15 When a PWP is eventually admitted to a nursing home, follow-up is discontinued in the majority of cases. Unfortunately, this has not improved compared to ten years ago, when it was already shown that many PWP in nursing homes in the Netherlands are undertreated and would benefit from guidance by a neurologist. 33 , 37 This is particularly striking given that since 2020, the Dutch guideline on Parkinson’s disease has explicitly recommended involving neurologists and PD nurses in care when a PWP is admitted to a nursing home. 14 This study’s main strength is that it includes data from nearly half of the hospitals treating PD in the Netherlands, with a representative distribution across the different types of hospitals. Additionally, there are no missing data within the completed surveys, and a reporting guideline (i.e. CROSS) was used. Furthermore, it is the first study to provide information on the differences between the various hospitals in the Netherlands regarding the organization of care for PWP. However, it is also necessary to acknowledge several limitations of this study. First, like in every survey-based study, there is a risk of response bias; for instance, centers of expertise for PD might be more inclined to respond to a questionnaire on this topic. Second, all results are based on survey responses from neurologists and PD nurses. We could not verify these data. Third, two-thirds of respondents indicate that the frequency of outpatient visits in their center depends on disease severity. In our questionnaire, we asked for the average number of yearly visits per patient, which means we lack information about this variation. Fourth, the results of this study are specific to the Netherlands. Notwithstanding this, the variability between hospitals and the reasons why telemonitoring can improve care for PWP are likely generalizable to many Western countries. The strong variation in outpatient healthcare organization for PWP that this study shows provides several opportunities for optimizing care. Although the number of contact moments and the time per consultation required are naturally influenced by the complexity of a specific person’s situation, it might be useful to agree on what is considered a realistic duration for an outpatient clinic visit for a PWP and a reasonable number of visits per year. At present, no recommendations of this kind are provided in any of the guidelines for PD. 13–19 Additionally, it might be worth considering that future guidelines not only mention that working in multidisciplinary teams is desirable but also make a recommendation about who should be included in such an MDT. Finally, our focus should gradually shift from developing new ways of telemonitoring for PD to implementing the existing methods in daily practice. To support this, the financing of care should be modified. It must not include fee-for-service payments but rather stimulates efficient and effective care. This includes organizing it in such a way that it does not matter whether patients are inside or outside the hospital walls. Future research should include a qualitative analysis of the underlying explanations for the variation in the organization of care for PD. The added value of telemonitoring should also be analyzed more broadly and preferably prospectively. Conclusion This nationwide study provides the first comprehensive overview of outpatient care for PWP in the Netherlands. Although care is generally well organized, we observed substantial variation between hospitals in consultation frequency, visit duration, total outpatient contact time, and MDT composition. Telemonitoring, despite strong evidence and patient interest, is used in fewer than one in five hospitals, yet its use is associated with markedly lower outpatient contact time and may help improve continuity of care, reduce workforce pressure, and support more sustainable care delivery. These findings point to clear opportunities for optimizing outpatient care. Developing consensus on appropriate consultation lengths, annual visit frequencies, and MDT composition could help reduce unwarranted variation. PD guidelines should also more explicitly address these organizational aspects and encourage the implementation of telemonitoring, supported by financing models that reward efficient, high-quality care. Future research should investigate the reasons for organizational variation and prospectively assess the broader impact of telemonitoring on care quality, resource use, and sustainability. Abbreviations CROSS consensus-based checklist for reporting of survey studies eCRF electronic case report form MDT multidisciplinary team PD Parkinson’s disease PWP people with Parkinson’s disease Declarations Ethical approval and consent to participate The study was conducted in accordance with the Declaration of Helsinki. Ethical approval was obtained from the Zuyderland-Zuyd Medical Ethical Committee (METCZ20220058). All participants provided written informed consent prior to inclusion in the study. Consent for publication Not applicable Availability of data and materials The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request. Competing interests The authors declare that they have no competing interests. Funding The authors received no financial support for the research, authorship, and/or publication of this article. Authors’ contributions AW: Conceptualization (equal); investigation (lead); data curation (lead); formal analysis (lead); methodology (equal); writing – original draft (lead) GT: Conceptualization (equal);investigation (supporting);writing – review and editing (equal) SE: Methodology (supporting); writing – review and editing (supporting) GvM : Methodology (equal); writing – review and editing (equal) All authors read and approved the final manuscript. Acknowledgments The authors would like to thank all healthcare providers who completed our survey for their participation in this study. References Bloem BR, Okun MS, Klein C. Parkinson’s disease. Lancet. 2021;397(10291):2284–303. Steinmetz JD, Seeher KM, Schiess N, et al. Global, regional, and national burden of disorders affecting the nervous system, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021. Lancet Neurol. 2024;23(4):344–81. Dorsey ER, Sherer T, Okun MS, Bloem BR. The emerging evidence of the Parkinson pandemic. J Parkinsons Dis. 2018;8:S3–8. Goldman SM. Environmental toxins and Parkinson's disease. Annu Rev Pharmacol Toxicol. 2014;54:141–64. Santos JR, Mendes MC, Dallabrida KG, Gonçalves R, Sampaio TB. Pesticide exposure and the development of Parkinson disease: a systematic review of Brazilian studies. Cad Saude Publica. 2025;41(4):e00011424. Centraal Bureau voor de Statistiek (Statistics Netherlands). Zorgrekeningen 2019: Zorguitgaven naar diagnosegroep (Healthcare accounts 2019: Healthcare expenditure by diagnosis group). 2021. Wijers A, Ravi A, Evers SM, Tissingh G, van Mastrigt GA. Systematic review of the cost of illness of Parkinson's disease from a societal perspective. Mov Disord. 2024;39(11):1938–51. Wijers A, Evers SM, Tissingh G, van Mastrigt GA. A Bottom-Up Analysis of the Cost of Illness of Parkinson's Disease in the Netherlands from a Societal Perspective. Mov Disord Clin Prac. 2025;12(11):1849–58. Eurostat. Healthcare expenditure by function and disease category in EU member states. Publications Office of the European Union; 2023. Fujita T, Babazono A, Kim S, et al. Effects of physician visit frequency for Parkinson’s disease treatment on mortality, hospitalization, and costs: A retrospective cohort study. BMC Geriatr. 2021;21(1):707. Willis AW, Schootman M, Tran R, et al. Neurologist-associated reduction in PD-related hospitalizations and health care expenditures. Neurology. 2012;79:1774–80. Kehagia AA, Chowienczyk S, van Helena M, et al. Real-world evaluation of the feasibility, acceptability and safety of a remote, self-management Parkinson's disease care pathway: A healthcare improvement initiative. J Parkinsons Dis. 2024;14(1):197–208. NG71. Parkinson’s disease in adults. London: NICE; 2017. https://www.nice.org.uk/guidance/ng71/chapter/Recommendations . Accessed on 18 Apr 2025. Guideline Committee of the Dutch Association for Neurology (NVN). Guideline on Parkinson’s disease by the Dutch Federation of Medical Specialist, section on organization of care. https://richtlijnendatabase.nl/richtlijn/ziekte_van_parkinson/organisatie_van_zorg_bij_de_ziekte_van_parkinson.html . Accessed on 18 Apr 2025. Tönges L, Buhmann C, Eggers C, Lorenzl S, Warnecke T, German Parkinson Guideline Group. Guideline Parkinson's disease of the German Society of Neurology (Deutsche Gesellschaft für Neurologie): concepts of care. J Neurol. 2024;271(12):7377–86. Swedish national guidelines for care for multiple sclerosis and Parkinson's disease. 2022. https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/nationella-riktlinjer/2022-11-8202.pdf Accessed on 18 Apr 2025. Ferreira JJ, Katzenschlager R, Bloem BR, et al. Summary of the recommendations of the EFNS/MDS-ES review on therapeutic management of Parkinson's disease. Eur J Neurol. 2013;20(1):5–15. 2014. (Clinical Practice Guideline for the Management of Patients with Parkinson’s Disease, Spain.) https://portal.guiasalud.es/wp-content/uploads/2018/12/GPC_546_Parkinson_IACS_comp_en.pdf Accessed on 18 Apr 2025. Pringsheim T, Day GS, Smith DB, et al. Dopaminergic therapy for motor symptoms in early Parkinson disease practice guideline summary: a report of the AAN guideline subcommittee. Neurology. 2021;97(20):942–57. Schneider RB, Biglan KM. The promise of telemedicine for chronic neurological disorders: The example of Parkinson's disease. Lancet Neurol. 2017;16(7):541–51. Dorsey ER, Vlaanderen FP, Engelen LJ, et al. Moving Parkinson care to the home. Mov Disord. 2016;31(9):1258–62. Oxford E, Dictionary. available at https://www.oed.com Wijers A, Hochstenbach L, Tissingh G. Telemonitoring via questionnaires reduces outpatient healthcare consumption in Parkinson's disease. Mov Disorders Clin Pract. 2021;8(7):1075–82. Chaudhuri KR, Hand A, Obam F, Belsey J. Cost-effectiveness analysis of the Parkinson's KinetiGraph and clinical assessment in the management of Parkinson's disease. J Med Econ 2022 Jan-Dec;25(1):774–82. Eze ND, Mateus C, Cravo Oliveira Hashiguchi T. Telemedicine in the OECD: An umbrella review of clinical and cost-effectiveness, patient experience and implementation. PLoS ONE. 2020;15(8):e0237585. Gentili A, Failla G, Melnyk A, et al. The cost-effectiveness of digital health interventions: A systematic review of the literature. Front Public Health. 2022;10:787135. Parkinson’s Europe. Call to Action: Enhancing Parkinson’s Care in Europe. 2024. Bloem BR, Henderson EJ, Dorsey ER, et al. Integrated and patient-centred management of Parkinson's disease: a network model for reshaping chronic neurological care. Lancet Neurol. 2022;19(7):623–34. Shalash A, Spindler M, Cubo E. Global Perspective on Telemedicine for Parkinson's Disease. J Park Dis. 2021;11(s1):S11–8. Sharma A, Minh Duc NT, Luu Lam Thang T, et al. A Consensus-Based Checklist for Reporting of Survey Studies (CROSS). J Gen Int Med. 2021;36(10):3179–87. Burq M, Rainaldi E, Ho KC, et al. Virtual exam for Parkinson's disease enables frequent and reliable remote measurements of motor function. NPJ Digit Med. 2022;5(1):65. Riggare S, Stamford J, Hägglund M. A long way to go: Patient perspectives on digital health for Parkinson's disease. J Parkinsons Dis. 2021;11(s1):S5–10. van Rumund A, Weerkamp N, Tissingh G, et al. Perspectives on Parkinson disease care in Dutch nursing homes. J Am Med Dir Assoc. 2014;15(10):732–7. Su D, Cui Y, He C et al. l. Projections for prevalence of Parkinson’s disease and its driving factors in 195 countries and territories to 2050: Modelling study of Global Burden of Disease Study 2021. BMJ. 2025; 388 . OECD/European Commission. Health at a glance: Europe 2024: State of health in the EU Cycle, Publishing OECD. Paris. 2024. https://doi.org/10.1787/b3704e14-en Steendam-Oldekamp E, Weerkamp N, Vonk JM, Bloem BR, van Laar T. Combined multidisciplinary in/outpatient rehabilitation delays definite nursing home admission in advanced Parkinson's disease patients. Front Neurol. 2023;14:1128891. Weerkamp NJ, Zuidema SU, Tissingh G, et al. Motor profile and drug treatment of nursing home residents with Parkinson's disease. J Am Geriatr Soc. 2012;60(12):2277–82. Additional Declarations No competing interests reported. Supplementary Files Additionalfile1ChecklistforReportingOfSurveyStudiesCROSS.docx Additional File 1: Checklist for Reporting Of Survey Studies (CROSS) Additionalfile2QuestionnaireonassessmentoftheoutpatientcarepathwayforParkinsonsdisease.docx Additional File 2: Questionnaire on assessment of the outpatient care pathway for Parkinson's Disease Cite Share Download PDF Status: Under Review Version 1 posted Reviewers agreed at journal 16 Feb, 2026 Reviewers invited by journal 05 Feb, 2026 Editor invited by journal 13 Jan, 2026 Editor assigned by journal 12 Jan, 2026 Submission checks completed at journal 12 Jan, 2026 First submitted to journal 04 Jan, 2026 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-8514159","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":588374761,"identity":"3e0d0a53-c025-4047-bf91-3677d7a8bcb1","order_by":0,"name":"Anke Wijers","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA+ElEQVRIie3PMWuDQBTA8QuWTC/c+qTFfIWTgKSTX+WFQKcOgotDBiHgFMgaSD6EWTq/ItjlIKtDyNI1g9A91Gi7no6F3p/jPI77cacQNtsfjbGZ5H0FQjw1HyVENIC4aUegI2rAVYqHEpmCz/PkEs5OOsBrcgG5X+dOZCDIoBh1vHhjHbgHHQOey8jZmR7Gk5zdjCh43wSPk4xAVK/KAQOZtuRG4WwNDbkRTPuIaklKo3x8JymB6iN+IWvGkhY7PY6fDyWBX71EhYl4H9nyC1cUym1xrK4r8rxqefyExPD7TjOwWz7g7yYbQNuo/tF130mbzWb7n30DlxxMSktz21gAAAAASUVORK5CYII=","orcid":"","institution":"Zuyderland Medisch Centrum","correspondingAuthor":true,"prefix":"","firstName":"Anke","middleName":"","lastName":"Wijers","suffix":""},{"id":588374762,"identity":"36d05964-22bd-4128-aed2-f101bf88d867","order_by":1,"name":"Gerrit Tissingh","email":"","orcid":"","institution":"Zuyderland Medisch Centrum","correspondingAuthor":false,"prefix":"","firstName":"Gerrit","middleName":"","lastName":"Tissingh","suffix":""},{"id":588374763,"identity":"3c93dedf-c87d-41ee-a898-67c4351f96a2","order_by":2,"name":"Silvia MAA Evers","email":"","orcid":"","institution":"Maastricht University","correspondingAuthor":false,"prefix":"","firstName":"Silvia","middleName":"MAA","lastName":"Evers","suffix":""},{"id":588374764,"identity":"f15a4a22-354f-4871-91a7-eea711ad7924","order_by":3,"name":"Ghislaine APG van Mastrigt","email":"","orcid":"","institution":"Maastricht University","correspondingAuthor":false,"prefix":"","firstName":"Ghislaine","middleName":"APG van","lastName":"Mastrigt","suffix":""}],"badges":[],"createdAt":"2026-01-04 15:38:14","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8514159/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8514159/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":102321298,"identity":"8ec230b7-ea50-4371-9e4e-be2b07165f9a","added_by":"auto","created_at":"2026-02-10 13:43:56","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":58766,"visible":true,"origin":"","legend":"\u003cp\u003eFlow diagram of study-participants\u003c/p\u003e\n\u003cp\u003eLegend: PWP = Person with Parkinson’s disease, † At the time of data collection there were 70 hospitals in the Netherlands. Due to a hospital merger, this number has since been reduced to 69, however we chose to present the situation as it was at the time of study.\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-8514159/v1/4a38237e8b83ba01977ab93f.png"},{"id":102321299,"identity":"c92c4f98-2dbf-4573-aa0b-2c14e7e78062","added_by":"auto","created_at":"2026-02-10 13:43:56","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":67817,"visible":true,"origin":"","legend":"\u003cp\u003eYearly outpatient contact time\u003c/p\u003e\n\u003cp\u003eLegend: Average contact time per patient per year with the neurologist, the PD nurse and total contact time. PD = Parkinson’s disease.\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-8514159/v1/01104a0690b0a2df3d6a508d.png"},{"id":102399046,"identity":"3ea3b5d2-08f0-41c1-abfa-7edb0db3dc32","added_by":"auto","created_at":"2026-02-11 10:32:34","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1094183,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8514159/v1/3edb3d8f-0533-48c0-b548-449917b877f0.pdf"},{"id":102397456,"identity":"2f2d07d0-5ee7-44e1-a736-cd2e2527b8fd","added_by":"auto","created_at":"2026-02-11 10:17:03","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":23180,"visible":true,"origin":"","legend":"\u003cp\u003eAdditional File 1: Checklist for Reporting Of Survey Studies (CROSS)\u003c/p\u003e","description":"","filename":"Additionalfile1ChecklistforReportingOfSurveyStudiesCROSS.docx","url":"https://assets-eu.researchsquare.com/files/rs-8514159/v1/594126950c36700870397250.docx"},{"id":102321300,"identity":"453cf1e2-a05e-446a-b08f-be2f9404b8ca","added_by":"auto","created_at":"2026-02-10 13:43:56","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":17551,"visible":true,"origin":"","legend":"\u003cp\u003eAdditional File 2: Questionnaire on assessment of the outpatient care pathway for Parkinson's Disease\u003c/p\u003e","description":"","filename":"Additionalfile2QuestionnaireonassessmentoftheoutpatientcarepathwayforParkinsonsdisease.docx","url":"https://assets-eu.researchsquare.com/files/rs-8514159/v1/be7d2b8572dcebabb189b853.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Wide variation in care for Parkinson’s disease across Dutch outpatient clinics provides opportunities for optimization: Results of a cross-sectional survey among healthcare providers","fulltext":[{"header":"Background","content":"\u003cp\u003eParkinson\u0026rsquo;s disease (PD) is a chronic neurodegenerative disorder. It mainly affects elderly people, although 25% of people with PD (PWP) are younger than 65 years old at the time of diagnosis. Presentation before the age of 40 is rare. The disease is most well-known for its motor symptoms, such as bradykinesia, tremor, rigidity, and gait difficulties. However, PWP can suffer from a large variety of other symptoms, including mood disorders, anxiety, hallucinations, fatigue, cognitive decline, and autonomic dysfunction, among others. Several pharmacological and surgical treatment options exist to alleviate PD symptoms. However, there is currently no cure or disease-modifying treatment, and the disease follows a progressive course.\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThe prevalence of PD increased by 274% worldwide between 1991 and 2020.\u003csup\u003e\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u003c/sup\u003e This is thought to be partly caused by an aging population, but also to be related to declining smoking rates and the by-products of industrialization.\u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e Specifically, epidemiologic studies have shown solvents, heavy metals, and pesticides to be associated with the development of PD.\u003csup\u003e4,5\u003c/sup\u003e The disease has a high burden, with a yearly loss of 7.5\u0026nbsp;million disability-adjusted life years throughout the world.\u003csup\u003e\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eRecent Dutch and European data indicate that the societal and healthcare costs of PD are substantial: in the Netherlands, care expenditure for PD and other parkinsonisms was estimated at \u0026euro;136\u0026nbsp;million in 2019\u003csup\u003e6\u003c/sup\u003e, while recent cost-of-illness studies report total societal costs of approximately \u0026euro;14,500\u0026ndash;\u0026euro;22,500 per patient per year in the Netherlands and comparable Western European countries. Healthcare costs typically account for 45\u0026ndash;55% of total costs and there is substantial cross-country variation.\u003csup\u003e\u003cspan additionalcitationids=\"CR8\" citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eAdequate monitoring and long-term specialized care are highly recommended to properly manage PD.\u003csup\u003e1\u003c/sup\u003e Regular contact with a movement disorder specialist both improves clinical outcomes and reduces healthcare costs in relation to PD.\u003csup\u003e10,11\u003c/sup\u003e However, due to its rising prevalence, it is increasingly difficult to provide this care for all PWP. For example, in the United Kingdom, some PWP are only reviewed by a movement disorders specialist once every 12\u0026ndash;18 months due to insufficient resources in the national health service.\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eIt will likely be necessary to organize neurological care more efficiently to keep it accessible for a growing group of PWP. Various guidelines on the management of PD mention aspects of healthcare organization.\u003csup\u003e\u003cspan additionalcitationids=\"CR14 CR15\" citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e These include the importance of appointing a care coordinator, network medicine, treatment by specialized healthcare workers, and the notion that PWP require ongoing medical care and consultation with neurologists from disease onset until the end of life. However, these guidelines hardly specify how this should be implemented in practice, and no recommendations are provided on aspects such as the frequency or duration of consultations. Other guidelines for PD offer no advice on healthcare organization at all.\u003csup\u003e\u003cspan additionalcitationids=\"CR18\" citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u003c/sup\u003e Detailed information on the current organization of care for PWP is also lacking, which makes it difficult to determine where improvements are possible.\u003c/p\u003e \u003cp\u003eFor almost ten years, telemedicine has been suggested as a possible solution to reduce the costs of care for PWP, limit its burden on healthcare systems, and improve the quality of care.\u003csup\u003e\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e,\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e Telemedicine is defined as \u0026ldquo;the remote diagnosis and treatment of patients using telecommunications technology\u0026rdquo;\u003csup\u003e22\u003c/sup\u003e and is also referred to as \u0026lsquo;telehealth\u0026rsquo; or \u0026lsquo;eHealth\u0026rsquo;. It exists in various forms, including web portals, mobile applications, wearables, video conferencing, robotics, and home automation. Systems for long-term home monitoring of patients are called \u0026lsquo;telemonitoring\u0026rsquo;. The results of several studies regarding eHealth initiatives for PD support the promise of telemedicine. For example, in the Netherlands, telemonitoring using online questionnaires was associated with a reduction in outpatient healthcare consumption.\u003csup\u003e\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u003c/sup\u003e In the United Kingdom, monitoring of PD using the Parkinson\u0026rsquo;s KinetiGraph led to lower total healthcare costs and an improvement in quality-adjusted life years.\u003csup\u003e\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u003c/sup\u003e The positive effects of telemedicine have also been described for various other chronic diseases.\u003csup\u003e\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e,\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u003c/sup\u003e However, detailed information about the current organization of care for PWP and the use of telemedicine is lacking, making it difficult to replicate best practices. A clear description of the organization of PD care might provide insights into where telemedicine can be used most effectively.\u003c/p\u003e \u003cp\u003eIn summary, given the increasing number of PWP combined with persistent workforce shortages and rising healthcare costs, strategic choices must be made to organize care as efficiently as possible. Recent European reports show substantial variation in access to specialized PD care and highlight shortages of clinicians trained in PD management.\u003csup\u003e\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u003c/sup\u003e Moreover, demand for integrated, multidisciplinary care is growing as the clinical complexity of PD increases over time.\u003csup\u003e\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eTherefore, for PD, it is crucial to map how care is currently organized, identify what works well in existing care pathways, and determine what could be improved. In addition, gaining insights into the current use of telemonitoring is valuable because digital health tools may help relieve workforce pressure, improve continuity of care, and enable earlier detection of complications. This approach increasingly recognized in PD care strategies.\u003csup\u003e\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e.\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThis study aims to provide a comprehensive description of outpatient care delivery for PWP in Dutch hospitals. Such an overview can reveal where opportunities lie to organize this care more efficiently, with or without the support of telemonitoring, for example, by optimizing follow-up intervals, interdisciplinary collaboration, or remote monitoring. Mapping the current situation is an essential first step toward making well-founded decisions on how to ensure that PD care remains sustainable and future-proof in the coming decades.\u003c/p\u003e\n\u003ch3\u003eContext\u003c/h3\u003e\n\u003cp\u003eIn the Netherlands, PD is managed primarily by neurologists, who work together closely with specialized nurses, nurse practitioners, or physician assistants. For the sake of readability, the term ‘PD nurse’ will be used for the remainder of this article to refer to these three groups of healthcare professionals. PWP usually have several outpatient clinic appointments per year, often alternating between the neurologist and PD nurse. In addition, in most cases, paramedics are involved in the care of PWP, in particular physiotherapists, speech therapists, occupational therapists, and dieticians. These paramedics mostly work outside of the hospital and generally belong to a network of specialized PD care providers. If necessary, other healthcare providers such as a psychologist, rehabilitation physician, or geriatrician can also be involved. Many hospitals have a multidisciplinary team (MDT) meeting in which various healthcare providers jointly consider best care for a PWP. This is generally engaged when there is a multitude of problems or if a PWP is considered for device-aided therapy. The general practitioner is not involved in the substantive treatment of PD but often plays a role in the guidance of PWP.\u003c/p\u003e "},{"header":"Methods","content":"\u003cp\u003eWe designed a survey study with a cross-sectional descriptive design to gain insights into the outpatient care of PWP. The study adhered to the Consensus-Based Checklist for Reporting of Survey Studies (CROSS\u003csup\u003e\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e\u003c/sup\u003e; see additional file 1 for the completed reporting guideline). It was conducted between February 2023 and September 2024, although most participants were included between June and August 2024. Ethical approval was obtained from the Zuyderland-Zuyd Medical Ethical Committee (METCZ20220058). All participants provided written informed consent prior to inclusion in the study.\u003c/p\u003e\n\u003ch3\u003eApproaching participants\u003c/h3\u003e\n\u003cp\u003eQuestionnaires could be completed by either a neurologist \u0026ndash; preferably a movement disorders specialist \u0026ndash; or a PD nurse from any hospital in the Netherlands. A call for participation was issued at the spring symposium of the Movement Disorders Working Group of the Dutch Society of Neurology (Nederlandse Vereniging voor Neurologie, NVN). Additionally, this call was disseminated through the NVN newsletter. If no response had been received from a hospital, one or more (movement disorder) neurologists were personally approached. This was done directly if their contact details were known to the authors, and otherwise via the hospital where they worked. When no response was received, a second and \u0026ndash; if necessary \u0026ndash; third attempt at contact was made. Due to the limited number of hospitals in the Netherlands, we aimed to include every hospital.\u003c/p\u003e\n\u003ch3\u003eQuestionnaire content\u003c/h3\u003e\n\u003cp\u003eA questionnaire was developed by the authors based on their clinical expertise and aimed to gain information on the organization of outpatient care for PWP in the Netherlands. This Dutch-language questionnaire contained eighteen questions and up to six sub-questions, depending on the answers previously given. An English translation of the questionnaire can be found in the online supplement (see additional file 2). The following items were included: type of hospital; number of PWP receiving treatment; number of movement disorder specialists and PD nurses; frequency and duration of outpatient appointments; frequency of telephone appointments; use of telemedicine, treatment of PWP living in a nursing home; existence and organization of an MDT; and an open question inquiring about any other relevant aspects of care.\u003c/p\u003e\n\u003ch3\u003eQuestionnaire completion\u003c/h3\u003e\n\u003cp\u003eParticipants could complete the questionnaire online or via a telephonic interview. When choosing to complete the questionnaire online, participants were sent an e-mail with a personalized link that led directly to Research Manager\u0026copy;, the electronic case report form (eCRF) used in Zuyderland Medical Center, where the questionnaire could be filled out. When choosing a telephonic interview, the answers given were entered into the eCRF by a researcher (AW). The eCRF was only accessible by two members of the study team (AW and GT) and only via secure servers from the Zuyderland Medical Center. Exports made for data analysis were stored on the same secure servers with the same limited accessibility.\u003c/p\u003e \u003cp\u003eLimits were set on the numeric values to minimize human error in data entry. If someone wanted to enter a value outside this range, this could only be done after confirmation that the number entered was correct. Items could not be skipped to avoid missing data. To prevent multiple inputs from the same hospital, participants were asked to supply the name of their hospital. This information was used solely to identify duplications and was deleted before the analysis of the results began.\u003c/p\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eStatistical analysis\u003c/h2\u003e \u003cp\u003eData were described using frequency, mean, median, interquartile range, or range, depending on the type and distribution of the variable. Some data were narratively summarized. Between-group comparisons were calculated using the Mann-Whitney U-test due to the non-parametric distribution of the data. Statistical significance was set at p\u0026thinsp;\u0026lt;\u0026thinsp;0.05 (two-tailed). No sensitivity analyses were conducted. Subgroup analyses were performed based on hospital type (academic vs. non-academic), center-of-expertise status, and the use of telemonitoring to examine differences in outpatient visit duration and total outpatient contact time. All analyses were conducted using Microsoft Excel\u0026reg; (Office 365 ProPlus).\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eAll 70 hospitals in the Netherlands were approached, but one of them did not treat PWP. The response rate was 46.4% (32 hospitals included/69 hospitals treating PWP). Three declined to participate, and 21 did not respond. Forty-six healthcare professionals agreed to participate, of whom 33 (71.7%) completed the questionnaire. One hospital returned two questionnaires, one from each of its main locations, whereby this data was combined before the analyses. See Fig.\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e for the flow diagram. Hospitals that did not complete the questionnaire did not differ from the participating ones regarding hospital type. The data contained information from three academic medical centers, fifteen top clinical hospitals, and fourteen peripheral hospitals. Nine hospitals (28.1%) describe themselves as centers of expertise regarding movement disorders.\u003c/p\u003e\n\u003ch3\u003eNumber of patients and staff\u003c/h3\u003e\n\u003cp\u003eTable\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e summarizes the primary results of the survey. The average number of PWP treated is 542 per hospital (range: 200\u0026ndash;1,300). PWP are treated by movement disorder specialists in all hospitals but one. Most hospitals have two or three neurologists specialized in movement disorders, with a range of one to five. There is one outlier (an academic center of expertise) with nine movement disorder specialists (including fellows). All hospitals have at least one PD nurse supporting the treatment of PWP. Most employ one or two, although this can increase to four in large hospitals. The same outlier mentioned above has eight.\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n\u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n\u003ctable id=\"Tab1\" border=\"1\"\u003e\u003ccaption\u003e\n\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\n\u003cdiv class=\"CaptionContent\"\u003e\n\u003cp\u003e\u0026ndash; Primary results\u003c/p\u003e\n\u003c/div\u003e\n\u003c/caption\u003e\n\u003cthead\u003e\n\u003ctr\u003e\n\u003cth colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eType of hospital\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eN (% of total)\u003c/p\u003e\n\u003c/th\u003e\n\u003c/tr\u003e\n\u003c/thead\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eAcademic medical center\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e3 (9.4%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eTop clinical hospital\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e15 (46.9%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003ePeripheral hospital\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e14 (43.8%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eMovement disorders center of excellence\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e9 (28.1%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eNumber of patients and staff per hospital\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003emedian (IQR)\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eNumber of PWP treated\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e500 (265\u0026ndash;735)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eNumber of movement disorder specialists\u003csup\u003e\u0026dagger;\u003c/sup\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e2 (2\u0026ndash;3)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eNumber of PD nurses\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e2 (1\u0026ndash;2)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eNumber of visits per patient per year\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eN (% of total)\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003ePlanned based on disease severity\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e21 (65.6%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003ePlanned in more or less fixed frequency\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e11 (34.4%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003emedian (IQR)\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eNeurologist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eIn person\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e2 (1,5\u0026thinsp;\u0026minus;\u0026thinsp;3)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eTelephonic\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e2 (1\u0026ndash;2)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"2\" align=\"left\"\u003e\n\u003cp\u003ePD nurse\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eIn person\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e2 (2\u0026ndash;2)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eTelephonic\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e2 (2\u0026ndash;4)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eDuration of outpatient visits\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003emedian (IQR)\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eNeurologist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eFirst visit\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e30 (30\u0026ndash;30)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eRepeat visit\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e15 (15\u0026ndash;20)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"2\" align=\"left\"\u003e\n\u003cp\u003ePD nurse\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eFirst visit\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e60 (45\u0026ndash;60)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eRepeat visit\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e30 (30\u0026ndash;45)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eTotal duration of outpatient visits per patient per year\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003emedian (IQR)\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eNeurologist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e31.5 (27.3\u0026ndash;53.3)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003ePD nurse\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e63.8 (61.5-107.3)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eTotal\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e114.5 (93-146.8)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eUse of telemedicine\u003c/strong\u003e\u003csup\u003e\u0026Dagger;\u003c/sup\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eN (% of total)\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003ee-mail\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e25 (78.1%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eOnline portal\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eHospital-wide\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e19 (59.3%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePD specific\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e3 (9.4%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eMobile app linking to online portal, with message functionality\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e6 (18.8%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eTelemonitoring\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e5 (15.6%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eOther\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e4 (12.1%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eTreatment of patients admitted to a nursing home\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eN (% of total)\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eLost to follow-up\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e18 (56.3%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eSeen at the outpatient clinic\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e4 (12.5%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eRegular consultation with nursing home physician\u003csup\u003e\u0026sect;\u003c/sup\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e4 (12.5%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003ePatients admitted to nursing home are visited by neurologist and/or PD nurse\u003csup\u003e\u0026para;\u003c/sup\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e6 (18.8%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eShort-term admission to a nursing home or rehabilitation center\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eN (% of total)\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eAvailable\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e5 (15.6%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eCurrently being established\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1 (3.1%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eNot available\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e26 (81.3%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eN\u0026thinsp;=\u0026thinsp;number, IQR\u0026thinsp;=\u0026thinsp;interquartile range, \u0026dagger; = based on 31 hospitals, \u0026Dagger; = multiple types of telemedicine per hospital possible, \u0026sect; = 25\u0026ndash;50% of patients are discussed at least once per year, \u0026para; = approximately 10% of patients are visited at least once per year.\u003c/p\u003e\n\u003c/div\u003e\n\u003ch3\u003eOutpatient visits\u003c/h3\u003e\n\u003cp\u003eIn eleven hospitals (35.5%), patients are seen at a more or less fixed frequency. In the others, the number of visits depends on the disease severity. Patients have on average 2.1 outpatient appointments per year with a neurologist and 2.2 with a PD nurse (range: 1\u0026ndash;4 for both). This amounts to approximately two hours of face-to-face contact per year. However, the duration of these contacts strongly varies between hospitals (See Fig.\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e\n\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\n\u003ch2\u003eUse of telemedicine\u003c/h2\u003e\n\u003cp\u003eAll hospitals in this study use some type of telemedicine in the care of PWP, most commonly e-mail (78.1%) or a hospital-wide patient portal (59,4%). Thirteen hospitals (40.6%) \u0026ndash; all non-academic hospitals \u0026ndash; use one or multiple more intensive telemedicine methods, including a mobile app that links to the patient portal and allows patients to communicate directly with their healthcare provider (n\u0026thinsp;=\u0026thinsp;6) or a PD-specific patient portal (n\u0026thinsp;=\u0026thinsp;3). Five hospitals (15.6%) have implemented a telemonitoring system in their daily practice.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\n\u003ch2\u003eMultidisciplinary team meeting\u003c/h2\u003e\n\u003cp\u003eThe majority (90.6%) of the hospitals in this study participate in an MDT meeting, where PWP are discussed in case of concerns or special circumstances (see Table\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e). An estimated 9% of PWP are discussed at least once per year. The composition of the MDTs strongly varies. Apart from a hospital\u0026rsquo;s neurologist and PD nurse, there is an average of almost four other participants. However, 18 different types of healthcare providers take part in the various MDT meetings. The most commonly included entity is a center of expertise (51.7%), followed by a physiotherapist (44.8%), an occupational therapist (41.4%), a speech therapist (37.9%), or another hospital that is not a center of expertise (34.5%).\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n\u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n\u003ctable id=\"Tab2\" border=\"1\"\u003e\u003ccaption\u003e\n\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\n\u003cdiv class=\"CaptionContent\"\u003e\n\u003cp\u003e\u0026ndash; Multidisciplinary team meeting\u003c/p\u003e\n\u003c/div\u003e\n\u003c/caption\u003e\n\u003cthead\u003e\n\u003ctr\u003e\n\u003cth colspan=\"2\" align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eN (percentage)\u003c/p\u003e\n\u003c/th\u003e\n\u003c/tr\u003e\n\u003c/thead\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eHospitals participating in a MDT meeting\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e29 (90.6%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eMean (range)\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003ePercentage of patients discussed in MDT meeting at least yearly\u0026dagger;\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e8.1 (1\u0026ndash;25)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eNumber of participants in MDT meeting (besides neurologist and PD nurse)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e3.8 (1\u0026ndash;14)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eParticipants in multidisciplinary team meeting\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003eN (percentage)\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"2\" align=\"left\"\u003e\n\u003cp\u003eHospital\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eCenter of expertise\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e15 (51.7%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eOther hospital, not a center of expertise\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e10 (34.5%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"5\" align=\"left\"\u003e\n\u003cp\u003eAuxiliary therapist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePhysiotherapist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e13 (44.8%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eOccupational therapist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e12 (41.4%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eSpeech therapist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e11 (37.9%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePsychologist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e7 (24.1%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eDietician\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e4 (13.8%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"7\" align=\"left\"\u003e\n\u003cp\u003ePhysician\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eRehabilitation physician\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e8 (27.6%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eNursing home physician\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e7 (24.1%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePsychiatrist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e6 (20.7%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePrimary care physician\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e5 (17.2%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eGeriatric specialist (not a nursing home physician)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e2 (6.9%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eClinical geriatrician\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1 (3.4%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePharmacist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1 (3.4%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd rowspan=\"4\" align=\"left\"\u003e\n\u003cp\u003eOther\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePrimary care PD nurse\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e2 (6.9%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eSocial work\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1 (3.4%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePatient\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1 (3.4%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eInformal care giver\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1 (3.4%)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003ctfoot\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"3\"\u003eParticipation in and design of multidisciplinary team meetings for PD. \u0026dagger; based on n\u0026thinsp;=\u0026thinsp;24 (five hospitals did not provide an estimate), MDT\u0026thinsp;=\u0026thinsp;multidisciplinary team, PD\u0026thinsp;=\u0026thinsp;Parkinson\u0026rsquo;s disease.\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tfoot\u003e\n\u003c/table\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\n\u003ch2\u003eTreatment of PWP in nursing homes\u003c/h2\u003e\n\u003cp\u003eIf PWP are admitted to a nursing home, the follow-up is discontinued in 56.3% of hospitals. In the others, they are either visited in the nursing home by the neurologist and/or PD nurse (18.8%) or seen at the outpatient clinic, the same as any other patient (12.5%). Four (12.5%) hospitals have regular consultations with the nursing home physicians in their region to discuss any questions or particular details regarding their PD. Six hospitals (18.8%) offer the option of short-stay admission in a local nursing home or rehabilitation facility for individuals with dysregulated PD, or are in the process of establishing such a ward.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\n\u003ch2\u003eSubgroup analyses\u003c/h2\u003e\n\u003cp\u003eTable\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e3\u003c/span\u003e displays the results of the subgroup analyses. There is strong variation between hospitals in terms of both the duration of outpatient consultations and the total outpatient contact time per year. Most notably, academic hospitals have a significantly longer average duration of an outpatient visit with a neurologist \u0026ndash; for both new patients (p\u0026thinsp;\u0026lt;\u0026thinsp;.001) and repeat visits (p\u0026thinsp;\u0026lt;\u0026thinsp;.01) \u0026ndash; compared to other hospitals. Total outpatient contact time per year with a neurologist and overall (p\u0026thinsp;\u0026lt;\u0026thinsp;.01 and \u0026lt;\u0026thinsp;.05, respectively) is also longer in academic hospitals. The duration of a first visit with a neurologist in a center of expertise is longer than in a non-expertise center. However, this difference can be explained by the fact that all academic hospitals \u0026ndash; which have a longer visit duration \u0026ndash; in this study are centers of expertise.\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n\u003ctable id=\"Tab3\" border=\"1\"\u003e\u003ccaption\u003e\n\u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e\n\u003cdiv class=\"CaptionContent\"\u003e\n\u003cp\u003e\u0026ndash; Results of subgroup analyses\u003c/p\u003e\n\u003c/div\u003e\n\u003c/caption\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 213px;\" colspan=\"3\" rowspan=\"2\"\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 392px;\" colspan=\"4\"\u003e\n\u003cp\u003e\u003cstrong\u003eDuration of outpatient consultations (min) \u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 266.357px;\" colspan=\"3\"\u003e\n\u003cp\u003e\u003cstrong\u003eTotal outpatient contact time (min/year) \u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003eFirst consultation with neurologist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003eRepeat consultation with neurologist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003eFirst consultation with PD-nurse\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003eRepeat consultation with PD-nurse\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 86px;\"\u003e\n\u003cp\u003eContact time with neurologist\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 82px;\"\u003e\n\u003cp\u003eContact time with PD-nurse\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 88.3565px;\"\u003e\n\u003cp\u003eTotal contact time\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 59px;\" rowspan=\"6\"\u003e\n\u003cp\u003e\u003cstrong\u003eSubgroup analyses\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 80px;\" rowspan=\"2\"\u003e\n\u003cp\u003e\u003cstrong\u003eAcademic Hospital\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 74px;\"\u003e\n\u003cp\u003eYes (n=3)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003e60.0\u003csup\u003e***\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e(60.0-60.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003e26.7\u003csup\u003e**\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e(20.0-30.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003e60.0\u003c/p\u003e\n\u003cp\u003e(45.0-75.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003e45.0\u003c/p\u003e\n\u003cp\u003e(30.0-60.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 86px;\"\u003e\n\u003cp\u003e73.3\u003csup\u003e**\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e(63.0-93.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 82px;\"\u003e\n\u003cp\u003e91.5\u003c/p\u003e\n\u003cp\u003e(64.5-120.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 88.3565px;\"\u003e\n\u003cp\u003e164.8\u003csup\u003e*\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e(128.5-183.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 74px;\"\u003e\n\u003cp\u003eNo (n=29)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003e30.3\u003csup\u003e***\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e(20.0-45.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003e15.6\u003csup\u003e**\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e(10.0-20.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003e54.1\u003c/p\u003e\n\u003cp\u003e(30.0-90.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003e37.2\u003c/p\u003e\n\u003cp\u003e(15.0-60.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 86px;\"\u003e\n\u003cp\u003e35.9\u003csup\u003e**\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e(16.5-81.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 82px;\"\u003e\n\u003cp\u003e80.7\u003c/p\u003e\n\u003cp\u003e(22.5-180.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 88.3565px;\"\u003e\n\u003cp\u003e116.6\u003csup\u003e*\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e(39.0-225.5)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 80px;\" rowspan=\"2\"\u003e\n\u003cp\u003e\u003cstrong\u003eCenter of expertise\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 74px;\"\u003e\n\u003cp\u003eYes (n=9)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003e40.6\u003csup\u003e*\u0026dagger;\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e(30.0-60.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003e20.0\u003c/p\u003e\n\u003cp\u003e(15.0-30.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003e56.7\u003c/p\u003e\n\u003cp\u003e(30.0-90.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003e38.3\u003c/p\u003e\n\u003cp\u003e(15.0-60.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 86px;\"\u003e\n\u003cp\u003e52.6\u003c/p\u003e\n\u003cp\u003e(16.5-93.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 82px;\"\u003e\n\u003cp\u003e78.5\u003c/p\u003e\n\u003cp\u003e(45.0-123.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 88.3565px;\"\u003e\n\u003cp\u003e131.1\u003c/p\u003e\n\u003cp\u003e(76.5-128.5)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 74px;\"\u003e\n\u003cp\u003eNo (n=23)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003e30.2\u003csup\u003e*\u0026dagger;\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e(20.0-45.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003e16.5\u003c/p\u003e\n\u003cp\u003e(10.0-20.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003e53.9\u003c/p\u003e\n\u003cp\u003e(30.0-90.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003e37.8\u003c/p\u003e\n\u003cp\u003e(20.0-60.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 86px;\"\u003e\n\u003cp\u003e34.3\u003c/p\u003e\n\u003cp\u003e(16.5-62.5)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 82px;\"\u003e\n\u003cp\u003e82.9\u003c/p\u003e\n\u003cp\u003e(22.5-180.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 88.3565px;\"\u003e\n\u003cp\u003e117.2\u003c/p\u003e\n\u003cp\u003e(39.0-225.5)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 80px;\" rowspan=\"2\"\u003e\n\u003cp\u003e\u003cstrong\u003eUse of tele-monitoring\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 74px;\"\u003e\n\u003cp\u003eYes (n=5)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003e32.0\u003c/p\u003e\n\u003cp\u003e(25.0-40.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003e17.0\u003c/p\u003e\n\u003cp\u003e(15.0-20.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003e54.0\u003c/p\u003e\n\u003cp\u003e(30.0-90.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003e34.0\u003c/p\u003e\n\u003cp\u003e(20.0-45.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 86px;\"\u003e\n\u003cp\u003e26.5\u003c/p\u003e\n\u003cp\u003e(16.5-31.5)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 82px;\"\u003e\n\u003cp\u003e57.0\u003c/p\u003e\n\u003cp\u003e(22.5-94.5)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 88.3565px;\"\u003e\n\u003cp\u003e83.5\u003csup\u003e*\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e(39.0-126.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd style=\"width: 74px;\"\u003e\n\u003cp\u003eNo (n=27)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003e33.3\u003c/p\u003e\n\u003cp\u003e(20.0-60.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 101px;\"\u003e\n\u003cp\u003e17.6\u003c/p\u003e\n\u003cp\u003e(10.0-30.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003e54.8\u003c/p\u003e\n\u003cp\u003e(30.0-90.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 95px;\"\u003e\n\u003cp\u003e38.7\u003c/p\u003e\n\u003cp\u003e(15.0-60.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 86px;\"\u003e\n\u003cp\u003e41.9\u003c/p\u003e\n\u003cp\u003e(16.5-93.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 82px;\"\u003e\n\u003cp\u003e86.2\u003c/p\u003e\n\u003cp\u003e(42,5-180.0)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"width: 88.3565px;\"\u003e\n\u003cp\u003e128.1\u003csup\u003e*\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e(76.5-225.5)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eAll outcomes are presented as mean (range). * = difference is significant at p \u0026lt; .05, ** = difference is significant at p \u0026lt; .01, *** = difference is significant at p \u0026lt; .001, \u0026dagger; = difference can be explained in full due to all included academic hospitals being a center of expertise; \u0026nbsp;min = minutes, n = number.\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eIn this study, telemonitoring is associated with less total outpatient contact time (p\u0026thinsp;\u0026lt;\u0026thinsp;.05). Hospitals using a telemonitoring system have on average 45 minutes less total outpatient contact time per patient per year compared to hospitals that do not make use of telemonitoring. Use of telemonitoring was only reported by non-academic hospitals. When removing the academic hospitals from the analysis, a statistically significant difference remains between hospitals that use telemonitoring and those that do not (p\u0026thinsp;\u0026lt;\u0026thinsp;.05).\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003e This is the first study to investigate the organization of outpatient care for PWP in the Netherlands. PWP have on average just over two hours per year of face-to-face contact with their neurologist or PD nurse and all hospitals indicate that they see their patients on average at least twice a year at the outpatient clinic. In addition, the vast majority of hospitals take part in MDT meetings. Our overall impression is that it is currently well organized, with sufficient time for the patient.\u003c/p\u003e \u003cp\u003eHowever, it can be noted that despite being promising in scientific literature, the use of telemonitoring has only been implemented in regular care in less than 20% of hospitals. There is substantial variation between hospitals regarding the number of outpatient consultations and their duration. The total contact time per year differs by a factor of 5.8 between the hospitals devoting the least and most time per patient. On average, academic hospitals and those that do not make use of telemonitoring have a higher total contact time per patient per year. There are also substantive differences regarding the design of MDTs. Seven out of eighteen (38.9%) types of participants only take part in one or two MDTs.\u003c/p\u003e \u003cp\u003eCurrent literature provides several indications that telemonitoring can help to improve care for PWP. Our study shows that PWP have outpatient contact for on average two hours per year, which means that they spent 8.758 hours per year elsewhere, where healthcare providers have no insight into how they are doing. Furthermore, it has previously been shown that a hospital assessment often does not reflect how a PWP functions at home.\u003csup\u003e\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e\u003c/sup\u003e Telemonitoring can help healthcare professionals to obtain a better and more continuous picture of the functioning of PWP and thus make better-informed treatment suggestions. Even more importantly, many PWP themselves want to use digital technologies to actively manage living with PD.\u003csup\u003e32\u003c/sup\u003e When they have access to their data and receive personalized feedback, PWP can be optimally supported in their self-management. Additionally, telemonitoring might be a solution for the PWP in nursing homes that currently have no contact with a PD specialist. Although many of them would like to have a neurologist or PD nurse involved in their care, they can be hesitant to pay visits to an outpatient clinic due to mobility issues.\u003csup\u003e\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e\u003c/sup\u003e Telemonitoring might be able to bridge this gap.\u003c/p\u003e \u003cp\u003eIn addition to improving the quality of care, the results of this study provide an indication that telemonitoring might also make the care for PWP more sustainable. The prevalence of PD is expected to increase by 112% between 2021 and 2050.\u003csup\u003e\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e\u003c/sup\u003e Many additional PD nurses and neurologists would have to be trained to maintain the current way of care for these people, which reflects a huge challenge given the shortage of healthcare professionals.\u003csup\u003e\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e\u003c/sup\u003e In our study, the average outpatient contact time per year is 34.8% lower in hospitals that use telemonitoring compared to hospitals that do not. Even if only part of this relationship is causal, wider use of telemonitoring might help alleviate the growing pressure on care for PWP. Furthermore, if telemonitoring can help reduce the number of outpatient contacts by one per year \u0026ndash; as our data suggests \u0026ndash; this would have a positive effect on both costs and environmental impact, as a decrease in travel movements reduces CO\u003csub\u003e2\u003c/sub\u003e emissions. The precise magnitude of this effect is difficult to calculate, partly because it is necessary to consider the energy consumption of devices and data centers for telemonitoring.\u003c/p\u003e \u003cp\u003eIt is positive to note that several hospitals have realized a short-stay department for PWP in their region or are working on it. It has previously been shown that such an admission can reduce the complaints of PWP, improve their daily functioning, and postpone a definitive nursing home admission.\u003csup\u003e\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e\u003c/sup\u003e A detailed description of what such a department should look like can be found in the German \u0026ldquo;Parkinson's disease\u0026rdquo; guideline.\u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e When a PWP is eventually admitted to a nursing home, follow-up is discontinued in the majority of cases. Unfortunately, this has not improved compared to ten years ago, when it was already shown that many PWP in nursing homes in the Netherlands are undertreated and would benefit from guidance by a neurologist.\u003csup\u003e\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e,\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e\u003c/sup\u003e This is particularly striking given that since 2020, the Dutch guideline on Parkinson\u0026rsquo;s disease has explicitly recommended involving neurologists and PD nurses in care when a PWP is admitted to a nursing home.\u003csup\u003e\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThis study\u0026rsquo;s main strength is that it includes data from nearly half of the hospitals treating PD in the Netherlands, with a representative distribution across the different types of hospitals. Additionally, there are no missing data within the completed surveys, and a reporting guideline (i.e. CROSS) was used. Furthermore, it is the first study to provide information on the differences between the various hospitals in the Netherlands regarding the organization of care for PWP.\u003c/p\u003e \u003cp\u003eHowever, it is also necessary to acknowledge several limitations of this study. First, like in every survey-based study, there is a risk of response bias; for instance, centers of expertise for PD might be more inclined to respond to a questionnaire on this topic. Second, all results are based on survey responses from neurologists and PD nurses. We could not verify these data. Third, two-thirds of respondents indicate that the frequency of outpatient visits in their center depends on disease severity. In our questionnaire, we asked for the average number of yearly visits per patient, which means we lack information about this variation. Fourth, the results of this study are specific to the Netherlands. Notwithstanding this, the variability between hospitals and the reasons why telemonitoring can improve care for PWP are likely generalizable to many Western countries.\u003c/p\u003e \u003cp\u003eThe strong variation in outpatient healthcare organization for PWP that this study shows provides several opportunities for optimizing care. Although the number of contact moments and the time per consultation required are naturally influenced by the complexity of a specific person\u0026rsquo;s situation, it might be useful to agree on what is considered a realistic duration for an outpatient clinic visit for a PWP and a reasonable number of visits per year. At present, no recommendations of this kind are provided in any of the guidelines for PD.\u003csup\u003e13\u0026ndash;19\u003c/sup\u003e Additionally, it might be worth considering that future guidelines not only mention that working in multidisciplinary teams is desirable but also make a recommendation about who should be included in such an MDT. Finally, our focus should gradually shift from developing new ways of telemonitoring for PD to implementing the existing methods in daily practice. To support this, the financing of care should be modified. It must not include fee-for-service payments but rather stimulates efficient and effective care. This includes organizing it in such a way that it does not matter whether patients are inside or outside the hospital walls.\u003c/p\u003e \u003cp\u003eFuture research should include a qualitative analysis of the underlying explanations for the variation in the organization of care for PD. The added value of telemonitoring should also be analyzed more broadly and preferably prospectively.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis nationwide study provides the first comprehensive overview of outpatient care for PWP in the Netherlands. Although care is generally well organized, we observed substantial variation between hospitals in consultation frequency, visit duration, total outpatient contact time, and MDT composition. Telemonitoring, despite strong evidence and patient interest, is used in fewer than one in five hospitals, yet its use is associated with markedly lower outpatient contact time and may help improve continuity of care, reduce workforce pressure, and support more sustainable care delivery.\u003c/p\u003e \u003cp\u003eThese findings point to clear opportunities for optimizing outpatient care. Developing consensus on appropriate consultation lengths, annual visit frequencies, and MDT composition could help reduce unwarranted variation. PD guidelines should also more explicitly address these organizational aspects and encourage the implementation of telemonitoring, supported by financing models that reward efficient, high-quality care.\u003c/p\u003e \u003cp\u003eFuture research should investigate the reasons for organizational variation and prospectively assess the broader impact of telemonitoring on care quality, resource use, and sustainability.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eCROSS\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003econsensus-based checklist for reporting of survey studies\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eeCRF\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eelectronic case report form\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eMDT\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003emultidisciplinary team\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003ePD\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eParkinson\u0026rsquo;s disease\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003ePWP\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003epeople with Parkinson\u0026rsquo;s disease\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cu\u003eEthical approval and consent to participate\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe study was conducted in accordance with the Declaration of Helsinki. Ethical approval was obtained from the Zuyderland-Zuyd Medical Ethical Committee (METCZ20220058). All participants provided written informed consent prior to inclusion in the study.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eConsent for publication\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eAvailability of data and materials\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eCompeting interests\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eFunding\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe authors received no financial support for the research, authorship, and/or publication of this article.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eAuthors’ contributions\u0026nbsp;\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAW:\u003c/strong\u003e Conceptualization (equal); investigation (lead); data curation (lead); formal analysis (lead); methodology (equal); writing – original draft (lead)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eGT:\u0026nbsp;\u003c/strong\u003eConceptualization (equal);investigation (supporting);writing – review and editing (equal)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSE:\u0026nbsp;\u003c/strong\u003eMethodology (supporting); writing – review and editing (supporting)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eGvM\u003c/strong\u003e: Methodology (equal); writing – review and editing (equal)\u003c/p\u003e\n\u003cp\u003eAll authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eAcknowledgments\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to thank all healthcare providers who completed our survey for their participation in this study.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eBloem BR, Okun MS, Klein C. Parkinson\u0026rsquo;s disease. Lancet. 2021;397(10291):2284\u0026ndash;303.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSteinmetz JD, Seeher KM, Schiess N, et al. Global, regional, and national burden of disorders affecting the nervous system, 1990\u0026ndash;2021: a systematic analysis for the Global Burden of Disease Study 2021. Lancet Neurol. 2024;23(4):344\u0026ndash;81.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDorsey ER, Sherer T, Okun MS, Bloem BR. The emerging evidence of the Parkinson pandemic. J Parkinsons Dis. 2018;8:S3\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGoldman SM. Environmental toxins and Parkinson's disease. Annu Rev Pharmacol Toxicol. 2014;54:141\u0026ndash;64.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSantos JR, Mendes MC, Dallabrida KG, Gon\u0026ccedil;alves R, Sampaio TB. Pesticide exposure and the development of Parkinson disease: a systematic review of Brazilian studies. Cad Saude Publica. 2025;41(4):e00011424.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCentraal Bureau voor de Statistiek (Statistics Netherlands). Zorgrekeningen 2019: Zorguitgaven naar diagnosegroep (Healthcare accounts 2019: Healthcare expenditure by diagnosis group). 2021.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWijers A, Ravi A, Evers SM, Tissingh G, van Mastrigt GA. Systematic review of the cost of illness of Parkinson's disease from a societal perspective. Mov Disord. 2024;39(11):1938\u0026ndash;51.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWijers A, Evers SM, Tissingh G, van Mastrigt GA. A Bottom-Up Analysis of the Cost of Illness of Parkinson's Disease in the Netherlands from a Societal Perspective. 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Paris. 2024. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1787/b3704e14-en\u003c/span\u003e\u003cspan address=\"10.1787/b3704e14-en\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSteendam-Oldekamp E, Weerkamp N, Vonk JM, Bloem BR, van Laar T. Combined multidisciplinary in/outpatient rehabilitation delays definite nursing home admission in advanced Parkinson's disease patients. Front Neurol. 2023;14:1128891.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWeerkamp NJ, Zuidema SU, Tissingh G, et al. Motor profile and drug treatment of nursing home residents with Parkinson's disease. J Am Geriatr Soc. 2012;60(12):2277\u0026ndash;82.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Parkinson disease, PD, clinical pathway, outpatient clinics, outpatient care, hospital, the Netherlands","lastPublishedDoi":"10.21203/rs.3.rs-8514159/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8514159/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eManagement of Parkinson\u0026rsquo;s disease (PD) requires adequate monitoring and long-term specialized care. The rising PD-prevalence makes this increasingly difficult to attain. Detailed information on the organization of care for people with PD (PWP) can help identify which aspects of care can be improved. This study aims to provide a detailed description of the outpatient care for PWP in the Netherlands.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eWe conducted a cross-sectional survey study among healthcare professionals in Dutch hospitals treating PWP. Data were described using frequency, mean, median, interquartile range, or range, depending on the type and distribution of the variable. Between-group comparisons were calculated using the Mann-Whitney U-test.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eBetween February 2023 and September 2024, 32 of 69 hospitals responded (46%). Each year, PWP had on average 2.1 outpatient visits with a neurologist and 2.2 with a PD nurse. This adds up to two hours of face-to-face contact per year (range: 39\u0026ndash;226 minutes). Contact time is longer in academic hospitals (mean: 165 minutes; range: 129\u0026ndash;183 minutes) and shorter in hospitals using telemonitoring (mean: 84 minutes; range 39\u0026ndash;126 minutes). Telemonitoring is part of routine care in 16% of hospitals. Ninety-one percent of hospitals participate in a multidisciplinary team (MDT), although less than 10% of PWP are discussed yearly, and the variation in composition of MDTs is substantial. PWP admitted to a nursing home often stop receiving neurological care.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003e This study provides important new insights into how outpatient care for PWP is organized in the Netherlands and how it can be made more sustainable. We observed substantial variation between hospitals in visit frequency, consultation duration, MDT composition, and the organization of care provided to PWP in nursing homes. Telemonitoring, although currently used in fewer than one in five hospitals, is associated with lower outpatient contact time and may help streamline follow-up and improve efficiency. By mapping these variations, this study identifies clear opportunities to optimize and future-proof PD-care.\u003c/p\u003e","manuscriptTitle":"Wide variation in care for Parkinson’s disease across Dutch outpatient clinics provides opportunities for optimization: Results of a cross-sectional survey among healthcare providers","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-02-10 13:43:51","doi":"10.21203/rs.3.rs-8514159/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"reviewerAgreed","content":"167749199339041941041280042535419797679","date":"2026-02-16T09:09:38+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-02-05T16:16:58+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-01-13T10:06:03+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-01-12T09:07:48+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-01-12T09:05:15+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Health Services Research","date":"2026-01-04T15:33:33+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"69152225-d085-4cf4-9c80-d9478e4f43ec","owner":[],"postedDate":"February 10th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-02-10T13:43:51+00:00","versionOfRecord":[],"versionCreatedAt":"2026-02-10 13:43:51","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8514159","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8514159","identity":"rs-8514159","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}