The ParkinsonNet concept: Development,implementation and initial experience

The quality and efficiency of allied health care in Parkinson's disease (PD) must be improved. We have developed the ParkinsonNet concept: a professional regional network within the catchment area of hospitals. ParkinsonNet aims to: (1) improve PD‐specific expertise among allied health personnel, by training a selected number of therapists according to evidence‐based guidelines; (2) enhance the accuracy of referrals by neurologists; (3) boost patient volumes per therapist, by stimulating preferred referral to ParkinsonNet therapists; and (4) stimulate collaboration between therapists, neurologists, and patients. We describe the procedures for developing a ParkinsonNet network. Our initial experience with this new concept is promising, showing an increase in PD‐specific and a steady rise in the patient volume of individual therapists. © 2010 Movement Disorder Society     

Physical therapy in Parkinson's disease: Evolution and future challenges

Even with optimal medical management using drugs or neurosurgery, patients with Parkinson's disease (PD) are faced with progressively increasing mobility problems. For this reason, many patients require additional physical therapy. Here, we review the professional evolution and scientific validation of physical therapy in PD, and highlight several future challenges. To gain insight in ongoing, recently completed or published trials and systematic reviews, we performed a structured literature review and contacted experts in the field of physical therapy in PD. Following publication of the first controlled clinical trial in 1981, the quantity and quality of clinical trials evaluating the efficacy of physical therapy in PD has evolved rapidly. In 2004 the first guideline on physical therapy in PD was published, providing recommendations for evidence‐based interventions. Current research is aiming to gather additional evidence to support specific intervention strategies such as the prevention of falls, and to evaluate the implementation of evidence into clinical practice. Although research focused on physical therapy for PD is a relatively young field, high‐quality supportive evidence is emerging for specific therapeutic strategies. We provide some recommendations for future research, and discuss innovative strategies to improve the organization of allied health care in PD, making evidence‐based care available to all PD patients. © 2008 Movement Disorder Society     

The ParkinsonNet trial: Design and baseline characteristics

The companion paper describes how implementation of professional networks (ParkinsonNet) may improve the quality and efficiency of allied health care in Parkinson's disease (PD). We designed a cluster‐randomized controlled trial to evaluate this ParkinsonNet concept for one allied health discipline, namely physical therapy. Here we describe the study design and baseline characteristics. The design fully complies with the CONSORT criteria. Sixteen regions in the Netherlands were randomly divided into eight experimental regions where a ParkinsonNet was implemented, and eight control regions where the organization of care was left unchanged (usual care). Participating patients were followed for 6 months to evaluate the implementation process, health benefits and costs of the intervention. In the ParkinsonNet regions, 46 therapists were trained and 358 patients were included. In the usual care regions, 341 patients were included. Baseline characteristics of participants in the ParkinsonNet and control clusters were comparable. With 699 participating patients, this is the largest allied health study in PD to date. © 2010 Movement Disorder Society     

Allied health care interventions and complementary therapies in Parkinson's disease

Allied health care and complementary therapies are used by many patients with Parkinson's disease (PD). For allied health care, supportive scientific evidence is gradually beginning to emerge, and interventions are increasingly integrated in the treatment programs for PD patients. To evaluate whether such multidisciplinary programs are justifiable, we review the literature of allied health care and complementary therapies in PD. According to the level of available evidence, we provide recommendations for clinical practice. Finally, we discuss the need for an improved organization of allied health care, and identify topics for future research to further underpin the pros and cons of allied health care and complementary therapies in PD.     

The role of music therapy in paediatric rehabilitation

Meeting the needs of the child in rehabilitation requires an interdisciplinary approach, whereby a variety of health care professionals are called upon to work together in planning and coordinating each patient's programme. The Registered music therapist is one of the allied health professionals who plays an integral role in this team approach. Music therapy is a recognized allied health profession, which is becoming acknowledged in the expanding world of health care as a therapy able to meet the expansive needs of the patient in rehabilitation. This article will present a literature review which advocates the role of music therapy in rehabilitation, with particular focus on the needs of the paediatric patient. Case vignettes will be used as further evidence to support the role of music therapy in this context, together with considerations for future research.     

Incorporating oral health into interprofessional care teams for patients with Parkinson's disease

Parkinson's disease (PD) is a progressive neurodegenerative disorder that primarily affects the motor system. However, non-motor symptoms such as cognitive, autonomic, sleep-related and sensory dysfunctions are often reported. A subgroup of non-motor symptoms, oropharyngeal problems, also affects these patients in ways that greatly deteriorate quality of life. Each patient may develop a different set of non-motor symptoms, making interprofessional collaboration among health care providers a must to treat patients with PD. In this review, we argue that dental health professionals must be included in this interprofessional health care team. Patients with PD are at a higher risk for developing oral health problems that can exacerbate or be exacerbated by other non-motor symptoms, such as mental health and dysphagia This accelerates decline in quality of life and even increases the risk of death by aspiration pneumonia. Dentists can create preventive oral health plans as soon as a diagnosis is made and promptly treat a patient's dental problems, preventing them from affecting other health areas. We describe major oral health concerns and how health professionals and dentists can participate and collaborate to improve the health of patients with PD.     

The effectiveness of allied health care in patients with ataxia: a systematic review

Many patients with cerebellar ataxia have serious disabilities in daily life, while pharmacological treatment options are absent. Therefore, allied health care is considered to be important in the management of these patients. The goal of this review is to evaluate scientific evidence for allied health care in cerebellar ataxia, to identify effective treatment strategies, and to give recommendations for clinical practice and further research. A systematic search for clinical trials concerning allied health care in cerebellar ataxias was conducted using the electronic databases of PubMed, Medline, Embase, Cinahl and Pedro, and references lists of articles, in the time period from 1980 up to and including December 2011 in English and Dutch. We identified 14 trials, of which the four best studies were formally of moderate methodological quality. There was a wide variation in disease entities and interventions. The combined data indicate that physical therapy may lead to an improvement of ataxia symptoms and daily life functions in patients with degenerative cerebellar ataxia (level 2), and in other diseases causing cerebellar ataxia (level 3). When added to physical therapy, occupational therapy might improve global functional status, and occupational therapy alone may diminish symptoms of depression (level 3). There are insufficient data for speech and language therapy. Despite the widespread use of allied health care interventions in cerebellar ataxia, there is a lack of good quality studies that have evaluated such interventions. We found some support for the implementation of physical therapy and occupational therapy, but more research is needed to develop recommendations for clinical practice.     

Developing clinical practice guidelines for epilepsy: A report from the ILAE Epilepsy Guidelines Working Group

Clinical practice guidelines (CPGs) contain evidence‐based recommendations to guide clinical care, policy development, and quality of care improvement. A recent systematic review of epilepsy guidelines identified considerable variability in the quality of available guidelines. Although excellent frameworks for CPG development exist, processes are not followed uniformly internationally, and resources to develop CPGs may be limited in certain settings. An International League Against Epilepsy (ILAE) working group was charged with proposing methodology to guide the development of future epilepsy‐specific CPGs. A comprehensive literature search (1985–2014) identified articles related to CPG development and handbooks. Guideline handbooks were included if they were publicly available, and if their methodology had been used to develop CPGs. The working group's expertise also informed the creation of methodologies and processes to develop future CPGs for the ILAE. Five handbooks from North America (American Academy of Neurology), Europe (Scottish Intercollegiate Guidelines Network & National Institute for Health and Care Excellence), Australia (National Health and Medical Research Council), World Health Organization (WHO), and additional references were identified to produce evidence‐based, consensus‐driven methodology for development of epilepsy‐specific CPGs. Key components of CPG development include the following: identifying the topic and defining the scope; establishing a working group; identifying and evaluating the evidence; formulating recommendations and determining strength of recommendations; obtaining peer reviews; dissemination, implementation, and auditing; and updating and retiring the CPG. A practical handbook and toolkit was developed. The resulting CPG development toolkit should facilitate the development of high‐quality ILAE CPGs to improve the care of persons with epilepsy.     

The past,present, and future of telemedicine for Parkinson's disease

Travel distance, growing disability, and uneven distribution of doctors limit access to care for most Parkinson's disease (PD) patients worldwide. Telemedicine, the use of telecommunications technology to deliver care at a distance, can help overcome these barriers. In this report, we describe the past, present, and likely future applications of telemedicine to PD. Historically, telemedicine has relied on expensive equipment to connect single patients to a specialist in pilot programs in wealthy nations. As the cost of video conferencing has plummeted, these efforts have expanded in scale and scope, now reaching larger parts of the world and extending the focus from care to training of remote providers. Policy, especially limited reimbursement, currently hinders the growth and adoption of these new care models. As these policies change and technology advances and spreads, the following will likely develop: integrated care networks that connect patients to a wide range of providers; education programs that support patients and health care providers; and new research applications that include remote monitoring and remote visits. Together, these developments will enable more individuals with PD to connect to care, increase access to expertise for patients and providers, and allow more‐extensive, less‐expensive participation in research. © 2014 International Parkinson and Movement Disorder Society     

A roadmap for implementation of patient‐centered digital outcome measures in Parkinson's disease obtained using mobile health technologies

Obtaining reliable longitudinal information about everyday functioning from individuals with Parkinson's disease (PD) in natural environments is critical for clinical care and research. Despite advances in mobile health technologies, the implementation of digital outcome measures is hindered by a lack of consensus on the type and scope of measures, the most appropriate approach for data capture (eg, in clinic or at home), and the extraction of timely information that meets the needs of patients, clinicians, caregivers, and health care regulators. The Movement Disorder Society Task Force on Technology proposes the following objectives to facilitate the adoption of mobile health technologies: (1) identification of patient‐centered and clinically relevant digital outcomes; (2) selection criteria for device combinations that offer an acceptable benefit‐to‐burden ratio to patients and that deliver reliable, clinically relevant insights; (3) development of an accessible, scalable, and secure platform for data integration and data analytics; and (4) agreement on a pathway for approval by regulators, adoption into e‐health systems and implementation by health care organizations. We have developed a tentative roadmap that addresses these needs by providing the following deliverables: (1) results and interpretation of an online survey to define patient‐relevant endpoints, (2) agreement on the selection criteria for use of device combinations, (3) an example of an open‐source platform for integrating mobile health technology output, and (4) recommendations for assessing readiness for deployment of promising devices and algorithms suitable for regulatory approval. This concrete implementation guidance, harmonizing the collaborative endeavor among stakeholders, can improve assessments of individuals with PD, tailor symptomatic therapy, and enhance health care outcomes. © 2019 International Parkinson and Movement Disorder Society     

Clinical problems in the hospitalized Parkinson's disease patient: Systematic review

The problems Parkinson's disease (PD) patients encounter when admitted to a hospital, are known to be numerous and serious. These problems have been inventoried through a systematic review of literature on reasons for emergency and hospital admissions in PD patients, problems encountered during hospitalization, and possible solutions for the encountered problems using the Pubmed database. PD patients are hospitalized in frequencies ranging from 7 to 28% per year. PD/parkinsonism patients are approximately one and a half times more frequently and generally 2 to 14 days longer hospitalized than non‐PD patients. Acute events occurring during hospitalization were mainly urinary infection, confusion, and pressure ulcers. Medication errors were also frequent adverse events. During and after surgery PD patients had an increased incidence of infections, confusion, falls, and decubitus, and 31% of patients was dissatisfied in the way their PD was managed. There are only two studies on medication continuation during surgery and one analyzing the effect of an early postoperative neurologic consultation, and numerous case reports, and opinionated views and reviews including other substitutes for dopaminergic medication intraoperatively. In conclusion, most studies were retrospective on small numbers of patients. The major clinical problems are injuries, infections, poor control of PD, and complications of PD treatment. There are many (un‐researched) proposals for improvement. A substantial number of PD patients' admissions might be prevented. There should be guidelines concerning the hospitalized PD patients, with accent on early neurological consultation and team work between different specialities, and incorporating nonoral dopaminergic replacement therapy when necessary. © 2011 Movement Disorder Society     

Developing and implementing future stroke therapies: the potential of telemedicine

Stroke is a major public health concern with few positive phase III clinical trials and a shortage of stroke care expertise. Drug development likely can be enhanced by adapting new outcome measures and following guidelines generated by consensus groups. To enhance rates of drug implementation and to improve stroke care, some states are requiring that acute care hospitals obtain primary stroke center certification, and this mandate necessitates that smaller hospitals join larger ones in stroke care networks. Cutting-edge technology in the form of telemedicine is being implemented in stroke care networks to combat the lack of stroke care expertise by extending the availability of physician stroke expertise. The telemedicine network can be used to transmit real-time data from stroke care-certified community hospitals (spokes) to a tertiary center (hub). Telemedicine can be used to educate physicians in spoke hospitals about new stroke treatments. The advent and development of telemedicine has the potential to ensure that patients with stroke have a greater opportunity to receive the full range of therapeutic options currently available and those that will become available in the future. The implementation of future drug therapies through telemedicine-organized stroke networks will likely substantially influence the future of acute stroke therapy.     

A U.S. survey of patients with Parkinson's disease: Satisfaction with medical care and support groups

Relatively little is known about patient satisfaction with Parkinson's disease (PD) care and the use of support groups in the United States. We surveyed members of the Muhammad Ali Parkinson's Disease Registry to assess satisfaction with medical care and to evaluate support group use. Satisfaction was measured on a 5‐point Likert scale, with high satisfaction defined as a four or five. We used multiple logistic regression to identify factors associated with high satisfaction and support group use. The response rate was 38% (726 of 1923). Most (57%) expressed high satisfaction with PD care. Individuals were most satisfied with the time their provider spent with them (61%) and PD education (56%) but least satisfied with prognostic information (35%) and information about non‐drug interventions (28%). Patients seeing a PD specialist were three times more satisfied with their care than those seeing a general neurologist (OR = 3.00, 95% CI: 1.92–4.71; P < 0.0001). Support group use is common, and 61% of survey respondents had attended one at any point. Caucasian race (OR = 2.85, 95% CI: 1.45–5.61), PD duration (OR = 1.05 per year, CI: 1.01–1.10), and PD specialist care (OR = 1.80, CI: 1.16–2.77) were associated with greater support group attendance. Overall, 49% reported high satisfaction with their support group. The greatest concerns were specific needs not being addressed (15%) and insufficient expertise within the group (14%). Most individuals with Parkinson's disease expressed high levels of satisfaction, especially with specialist care. Specialty care and improved education, in the clinic or through support groups, may enhance satisfaction and health care quality. © 2010 Movement Disorder Society     

Specialized Versus Generic Allied Health Therapy and the Risk of Parkinson's Disease Complications

Background

Specialized versus generic physiotherapy (PT) reduces Parkinson's disease (PD)–related complications. It is unclear (1) whether other specialized allied heath disciplines, including occupational therapy (OT) and speech and language therapy (S<), also reduce complications; (2) whether there is a synergistic effect among multiple specialized disciplines; and (3) whether each allied health discipline prevents specific complications.

Objectives

To longitudinally assessed whether the level of expertise (specialized vs. generic training) of PT, OT, and S< was associated with the incidence rate of PD-related complications.

Methods

We used claims data of all insured persons with PD in the Netherlands between January 1, 2010, and December 31, 2018. ParkinsonNet-trained therapists were classified as specialized, and other therapists as generic. We used mixed-effects Poisson regression models to estimate rate ratios adjusting for sociodemographic and clinical characteristics.

Results

The population of 51,464 persons with PD (mean age, 72.4 years; standard deviation 9.8) sustained 10,525 PD-related complications during follow-up (median 3.3 years). Specialized PT was associated with fewer complications (incidence rate ratio [IRR] of specialized versus generic = 0.79; 95% confidence interval, [0.74–0.83]; P < 0.0001), as was specialized OT (IRR = 0.88 [0.77–0.99]; P = 0.03). We found a trend of an association between specialized S< and a lower rate of PD-related complications (IRR = 0.88 [0.74–1.04]; P = 0.18). The inverse association of specialized OT persisted in the stratum, which also received specialized PT (IRR = 0.62 [0.42–0.90]; P = 0.001). The strongest inverse association of PT was seen with orthopedic injuries (IRR = 0.78 [0.73–0.82]; P < 0.0001) and of S< with pneumonia (IRR = 0.70 [0.53–0.93]; P = 0.03).

Conclusions

These findings support a wider introduction of specialized allied health therapy expertise in PD care and conceivably for other medical conditions. © 2022 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.     

Clinical and subthreshold panic disorder

Background: Panic disorder (PD) is a highly prevalent and disabling condition, and subthreshold cases may be even more prevalent. This study examined psychiatric comorbidities, work functioning, and health‐care utilization of individuals with subthreshold panic. The purpose of this study was to add to the accumulating evidence of significant comorbidity and disability associated with subthreshold PD. Methods: Data are drawn from the Health Care for Communities study, a national household survey of the United States' adult, civilian, noninstitutionalized population (N=9585). Data assessing psychiatric disorders, employment and work productivity, and health‐care utilization were collected. Seven categories of panic and subthreshold panic were created. Results: The prevalence of clinical and subthreshold panic in the general population was 40%. Subthreshold panic was associated with increased odds of several comorbid disorders, including depression, dysthymia, psychosis, generalized anxiety disorder, bipolar disorder, and alcohol and drug use disorders. Subthreshold panic was also associated with greater likelihood of health‐care service utilization but not with the intensity of mental health services. Conclusion: Psychiatric comorbidities and health‐care utilization are common among patients with subthreshold panic. The relationship between varying degrees of panic symptomology and other mental health problems and indices of functioning impairment warrants further investigation. These results inform further research focusing on the course of subthreshold PD and its impact on quality of life. Depression and Anxiety, 2010. © 2009 Wiley‐Liss, Inc.     

Paramedical treatment in primary dystonia: A systematic review

Dystonia is a disabling movement disorder with a significant impact on quality of life. The current therapeutic armamentarium includes various drugs, botulinum toxin injections, and occasionally (neuro)surgery. In addition, many patients are referred for paramedical (including allied health care) interventions. An enormous variation in the paramedical treatment is provided, largely because evidence‐based, accepted treatment regimes are not available. We have conducted a systematic review of studies that explored the effect of various paramedical interventions in primary dystonia. Only studies that have used clinical outcome measures were included. There were no class A1 or A2 studies and therefore, level 1 or 2 practice recommendations for a specific intervention could not be deducted. Many papers were case reports, mostly with a very limited number of patients and a clear publication bias for beneficial effects of a particular paramedical intervention. Some potentially interesting interventions come from class B studies, which include physical therapy in addition to botulinum toxin injections (BoNT‐A) in cervical dystonia; sensorimotor training and transcutaneous electrical nerve stimulation (TENS) in writer's cramp; and speech therapy added to BoNT‐A injections in laryngeal dystonia. Good quality clinical studies are therefore warranted, which should have the aim to be generally applicable. A design in which the paramedical intervention is added to a current gold standard, for example, BoNT‐A injections in cervical dystonia, is recommended. © 2009 Movement Disorder Society     

Implementation of Treatment Guidelines for Specialist Mental Health Care

Although treatment guidelines are commonly employed in healthcare settings, it remains unclear whether their use has any positive impact on the performance of mental health services or whether they improve patient outcomes. This systematic review is based on a search carried out in March 2012 and includes 5 randomized studies that examined the effectiveness of guideline implementation strategies in improving healthcare services and outcomes for people with mental illness. The 5 studies were generally at unclear risk of bias, and all evidence in the “Summary of Findings” table was graded by review authors as of very low quality. Although single studies provided initial evidence that implementation of treatment guidelines may achieve small changes in mental health practice, with only 5 studies meeting inclusion criteria, and with limited usable information, it is not possible to arrive at definitive conclusions. A gap in knowledge still exists about how guideline implementation strategies might improve patient outcomes and health services. This leaves scant information for people with mental health problems, health professionals, and policy makers. More large-scale, well-designed and well-conducted studies are necessary to fill this gap in knowledge.Key words: guidelines/, implementation/, schizophrenia     

Economic burden of Parkinson’s disease in Singapore

Background: This study was carried out to evaluate the economic burden of Parkinson’s disease (PD) and factors independently associated with individual components of total cost in Singapore. Methods: A consecutive sample of 195 patients with PD (mean age: 68.2, men: 51.8%) attending a tertiary neuroscience clinic were identified and interviewed using standardized questionnaires including a financial burden questionnaire, two Health Related Quality of Life (HRQoL) questionnaires and the Beck Depression Inventory questionnaire. Results: Annual total cost of PD from a societal perspective was SGD11345 (USD10129) per patient, with direct cost accounted for 38.5% and indirect cost 61.5%. The main cost components for direct medical cost, direct non‐medical cost, and indirect cost was pharmacotherapy (50.4%), home care (76.1%), and productivity loss (97.9%), respectively. In multiple linear regression analysis, higher education, younger age and longer duration of PD were associated with higher total cost. Conclusions: Parkinson’s disease exerts a considerable burden on patients, health care system and society in Singapore. As productivity loss accounts for a large share of the economic burden imposed by PD, treatments and health care programmes with potential for returning patients to higher productivity are urgently needed.     

An exploratory study into health care policy for persons with intellectual disabilities in Taiwan

Background Although Taiwan has already had a higher quality of health care compared with other countries, there still is a need to review the quality and effectiveness of services provided. The lack of health care policy for persons with disabilities is a reflection of health care provision in Taiwan. Health care provision problems will limit persons with disabilities in their access to the health care system. The purpose of the present study was to examine the general beliefs about the current health care policies for persons with intellectual disabilities (ID) in Taiwan. Methods Data were obtained from two sources, namely government policies analysis and interviews with representatives for key stakeholders in the field of ID. Results The results illustrate that health care service problems for persons with ID include: how to enforce the discovery system and early intervention service, disability evaluation system, National Health Insurance medical payment and medical care resource development are still confining their quality of care. Furthermore, the links between social welfare, education and health care have been lost because the different roles and perspectives of people in these fields are fundamentally at odds with one another. Health care professionals have become less reform‐minded as a consequence of the conditions of their work. Consequently, a complete and coordinated health care policy for persons with ID has become unattainable in society. The present paper draws on evidence from research and policies to explore the problems and potential of service development for persons with ID, and to identify review and action points for managing its implementation.     

Short‐ and long‐term cost and utilization of health care resources in Parkinson's disease in the UK

Background: There is currently no robust long‐term data on costs of treating patients with Parkinson's disease. The objective of this study was to report levels of health care utilization and associated costs in the 10 years after diagnosis among PD patients in the United Kingdom. Methods: We undertook a retrospective population‐based cohort study using linked data from the UK Clinical Practice Research Datalink and Hospital Episode Statistics databases. Total health care costs of PD patients were compared with those of a control group of patients without PD selected using 1:1 propensity score matching based on age, sex, and comorbidity. Results: Between 1994 and 2013, 7271 PD patients who met study inclusion criteria were identified in linked Clinical Practice Research Datalink‐Hospital Episode Statistics; 7060 were matched with controls. The mean annual health care cost difference (at 2013 costs) between PD patients and controls was £2471 (US$3716) per patient in the first year postdiagnosis (P < 0.001), increasing to £4004 (US$6021) per patient (P < 0.001) 10 years following diagnosis because of higher levels of use across all categories of health care utilization. Costs in patients with markers of advanced PD (ie, presence of levodopa‐equivalent daily dose > 1100 mg, dyskinesias, falls, dementia, psychosis, hospital admission primarily due to PD, or nursing home placement) were on average higher by £1069 (US$1608) per patient than those with PD without these markers. Conclusions: This study provides comprehensive estimates of health care costs in PD patients based on routinely collected data. Health care costs attributable to PD increase in the year following diagnosis and are higher for patients with indicators of advanced disease. © 2018 International Parkinson and Movement Disorder Society