Caregiver burden in Parkinson's disease: a mixed-methods study.

BACKGROUND: Providing informal care for a person with Parkinson's disease (PD) can be a demanding process affecting several dimensions of a caregiver's life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden. METHODS: We conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson's Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson's Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively. RESULTS: A total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism. CONCLUSIONS: The burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.

Density of Patient-Sharing Networks: Impact on the Value of Parkinson Care.

BACKGROUND: Optimal care for Parkinson's disease (PD) requires coordination and collaboration between providers within a complex care network. Individual patients have personalised networks of their own providers, creating a unique informal network of providers who treat ('share') the same patient. These 'patient-sharing networks' differ in density, ie, the number of identical patients they share. Denser patient-sharing networks might reflect better care provision, since providers who share many patients might have made efforts to improve their mutual care delivery. We evaluated whether the density of these patient-sharing networks affects patient outcomes and costs. METHODS: We analysed medical claims data from all PD patients in the Netherlands between 2012 and 2016. We focused on seven professional disciplines that are commonly involved in Parkinson care. We calculated for each patient the density score: the average number of patients that each patient's providers shared. Density scores could range from 1.00 (which might reflect poor collaboration) to 83.00 (which might reflect better collaboration). This score was also calculated at the hospital level by averaging the scores for all patients belonging to a specific hospital. Using logistic and linear regression analyses we estimated the relationship between density scores and health outcomes, healthcare utilization, and healthcare costs. RESULTS: The average density score varied considerably (average 6.7, SD 8.2). Adjusted for confounders, higher density scores were associated with a lower risk of PD-related complications (odds ratio [OR]: 0.901; P<.001) and with lower healthcare costs (coefficients: -0.018, P=.005). Higher density scores were associated with more frequent involvement of neurologists (coefficient 0.068), physiotherapists (coefficient 0.052) and occupational therapists (coefficient 0.048) (P values all <.001). CONCLUSION: Patient sharing networks showed large variations in density, which appears unwanted as denser networks are associated with better outcomes and lower costs.

Rationale and design to evaluate the PRIME Parkinson care model: a prospective observational evaluation of proactive, integrated and patient-centred Parkinson care in The Netherlands (PRIME-NL).

BACKGROUND: Culminating evidence shows that current care does not optimally meet the needs of persons with parkinsonism, their carers and healthcare professionals. Recently, a new model of care was developed to address the limitations of usual care: Proactive and Integrated Management and Empowerment in Parkinson's Disease (PRIME Parkinson). From 2021 onwards, PRIME Parkinson care will replace usual care in a well-defined region in The Netherlands. The utility of PRIME Parkinson care will be evaluated on a single primary endpoint (parkinsonism-related complications), which reflects the health of people with parkinsonism. Furthermore, several secondary endpoints will be measured for four dimensions: health, patient and carer experience, healthcare professional experience, and cost of healthcare. The reference will be usual care, which will be continued in other regions in The Netherlands. METHODS: This is a prospective observational study which will run from January 1, 2020 until December 31, 2023. Before the new model of care will replace the usual care in the PRIME Parkinson care region all baseline assessments will take place. Outcomes will be informed by two data sources. We will use healthcare claims-based data to evaluate the primary endpoint, and costs of healthcare, in all persons with parkinsonism receiving PRIME Parkinson care (estimated number: 2,000) and all persons with parkinsonism receiving usual care in the other parts of The Netherlands (estimated number: 48,000). We will also evaluate secondary endpoints by performing annual questionnaire-based assessments. These assessments will be administered to a subsample across both regions (estimated numbers: 1,200 persons with parkinsonism, 600 carers and 250 healthcare professionals). DISCUSSION: This prospective cohort study will evaluate the utility of a novel integrated model of care for persons with parkinsonism in The Netherlands. We anticipate that the results of this study will also provide insight for the delivery of care to persons with parkinsonism in other regions and may inform the design of a similar model for other chronic health conditions.

Hand dexterity assessment in Parkinson's disease: construct validity of the 9-Hole peg test for the more affected hand.

PURPOSE: There is limited understanding of the characteristics and evaluation of more affected hand dexterity loss in Parkinson's disease. We described 9-Hole Peg Test performance for the more affected hand and examined the construct validity of these pegboard scores in mild to severe Parkinson's disease. Methods: This observational study analysed baseline data from a cluster-randomised controlled trial.Participants (n = 582) completed the pegboard with their more affected hand, the Patient-Specific Index-Parkinson's Disease and Self-assessment Parkinson's Disease Disability Scale. Mean pegboard performance was summarised at each disease stage. To investigate known groups validity, we explored differences in pegboard scores between participants identifying upper limb problems in their 'top three' functional limitations, and those prioritising other limitations. Convergent validity investigated correlations between pegboard performance and self-reported hand function. RESULTS: Pegboard performance was reduced compared with normative values, and problems with hand activities were reported at each disease stage. Significant differences in pegboard performance between the two functional limitation priority groups (p < 0.05), and moderate correlations between pegboard dexterity and hand function (Self-assessment Parkinson's Disease Disability Scale) provided evidence for construct validity. CONCLUSIONS: People with mild to severely disabling Parkinson's disease have reduced dexterity and problems with hand function. Evidence supported the construct validity of 9-Hole Peg Test more affected hand performance.IMPLICATIONS FOR REHABILITATIONPeople with mild to severely disabling PD experience dexterity loss and problems with hand function.It is important for clinicians to assess dexterity and hand function in people with this movement disorder.Evidence supports the construct validity of 9-Hole Peg Test for measuring more affected hand performance in Parkinson's disease.

Personalized Care Management for Persons with Parkinson's Disease.

There is a growing awareness that delivery of integrated and personalized care is necessary to meet the needs of persons living with Parkinson's disease. In other chronic diseases than Parkinson's disease, care management models have been deployed to deliver integrated and personalized care, yielding positive effects on patients' health outcomes, quality of life and health care utilization. However, care management models have been highly heterogeneous, as there is currently no clear operationalization of its core elements. In addition, most care management models are disease-specific and not tailored to the individual needs and preferences of a patient. In this viewpoint we present an integrated and personalized care management model for persons with Parkinson's disease costing of five core elements: (1) care coordination, (2) patient navigation, (3) information provision, (4) early detection of signs and symptoms through proactive monitoring and (5) process monitoring. Following the description of each core element, implications for implementing the model into practice are discussed. Finally, we provide clinical and methodological considerations on the evaluation of care management models.

Recommendations for the Organization of Multidisciplinary Clinical Care Teams in Parkinson's Disease.

BACKGROUND: Optimal management in expert centers for Parkinson's disease (PD) usually involves pharmacological and non-pharmacological interventions, delivered by a multidisciplinary approach. However, there is no guideline specifying how this model should be organized. Consequently, the nature of multidisciplinary care varies widely. OBJECTIVE: To optimize care delivery, we aimed to provide recommendations for the organization of multidisciplinary care in PD. METHODS: Twenty expert centers in the field of multidisciplinary PD care participated. Their leading neurologists completed a survey covering eight themes: elements for optimal multidisciplinary care; team members; role of patients and care partners; team coordination; team meetings; inpatient versus outpatient care; telehealth; and challenges towards multidisciplinary care. During a consensus meeting, outcomes were incorporated into concept recommendations that were reviewed by each center's multidisciplinary team. Three patient organizations rated the recommendations according to patient priorities. Based on this feedback, a final set of recommendations (essential elements for delivery of multidisciplinary care) and considerations (desirable elements) was developed. RESULTS: We developed 30 recommendations and 10 considerations. The patient organizations rated the following recommendations as most important: care is organized in a patient-centered way; every newly diagnosed patient has access to a core multidisciplinary team; and each team has a coordinator. A checklist was created to further facilitate its implementation. CONCLUSION: We provide a practical tool to improve multidisciplinary care for persons with PD at the organizational level. Future studies should focus on implementing these recommendations in clinical practice, evaluating their potential applicability and effectiveness, and comparing alternative models of PD care.

The cost-effectiveness of specialized nursing interventions for people with Parkinson's disease: the NICE-PD study protocol for a randomized controlled clinical trial.

BACKGROUND: Current guidelines recommend that every person with Parkinson's disease (PD) should have access to Parkinson's disease nurse specialist (PDNS) care. However, there is little scientific evidence of the cost-effectiveness of PDNS care. This hampers wider implementation, creates unequal access to care, and possibly leads to avoidable disability and costs. Therefore, we aim to study the (cost-)effectiveness of specialized nursing care provided by a PDNS compared with usual care (without PDNS) for people with PD in all disease stages. To gain more insight into the deployed interventions and their effects, a preplanned subgroup analysis will be performed on the basis of disease duration (diagnosis < 5, 5-10, or > 10 years ago). METHODS: We will perform an 18-month, single-blind, randomized controlled clinical trial in eight community hospitals in the Netherlands. A total of 240 people with PD who have not been treated by a PDNS over the past 2 years will be included, independent of disease severity or duration. In each hospital, 30 patients will randomly be allocated in a 1:1 ratio to receive either care by a PDNS (who works according to a recent guideline on PDNS care) or usual care. We will use two co-primary outcomes: quality of life (measured with the Parkinson's Disease Questionnaire-39) and motor symptoms (measured with the Movement Disorders Society-sponsored revision of the Unified Parkinson's Disease Rating Scale part III). Secondary outcomes include nonmotor symptoms, health-related quality of life, experienced quality of care, self-management, medication adherence, caregiver burden, and coping skills. Data will be collected after 12 months and 18 months by a blinded researcher. A healthcare utilization and productivity loss questionnaire will be completed every 3 months. DISCUSSION: The results of this trial will have an immediate impact on the current care of people with PD. We hypothesize that by offering more patients access to PDNS care, quality of life will increase. We also expect healthcare costs to remain equal because increases in direct medical costs (funding additional nurses) will be offset by a reduced number of consultations with the general practitioner and neurologist. If these outcomes are reached, wide implementation of PDNS care will be warranted. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03830190. Registered February 5, 2019 (retrospectively registered).

Psychosocial needs of patients and spouses justify a position of psychosocial health professionals in the multidisciplinary care for Parkinson's disease.

INTRODUCTION: Living a life with Parkinson's Disease (PD) is a challenge for both patients and spouses. Patients have to cope with an increasing limitation in all domains of their daily life and spouses need to adjust to these changes. The focus of this study is on exploring, both quantitatively and qualitatively, the psychosocial needs of both patients with PD and spouses. METHODS: An online survey with 11 themes, related to dealing with a chronic disease, was sent by an email to patients and spouses and two focus groups were planned, one with patients and one with spouses. Data from the survey were quantitatively analysed and audiotapes from the focus groups were transcribed verbatim and combined with notes. RESULTS: Percentages of relevance are higher than 50% for all the themes, whereas those of the need for and received support are all lower than 50%. Focus groups revealed a negative image of psychosocial therapy and associations with failure, but also difficulties in signalling problems by professionals, little attention for spouses and limited access to specialized psychosocial care. CONCLUSION: Based on this exploration, there appears to be a threshold to ask for psychosocial support on the one hand and to find the right professional on the other hand. A permanent position for psychosocial health professionals in the multidisciplinary Parkinson teams and networks may close the gap between 'supply and demand'.

Effectiveness and costs of specialised physiotherapy given via ParkinsonNet: a retrospective analysis of medical claims data.

BACKGROUND: Parkinson's disease is a complex condition that is best managed by specialised professionals. Trials show that specialised allied health interventions are cost-effective, as compared with usual care. We aimed to study the long-term benefits of specialised physiotherapy using the ParkinsonNet approach in real-world practice. METHODS: We did an observational study, retrospectively analysing a database of health insurance claims that included a representative population of Dutch patients with Parkinson's disease, who were followed for up to 3 years (Jan 1, 2013, to Dec 31, 2015). Eligibility criteria included having both a diagnosis of Parkinson's disease and having received physiotherapy for the disease. Allocation to specialised or usual care physiotherapy was based on the choices of patients and referring physicians. We used a mixed-effects model to compare health-care use and outcomes between patients treated by specialised or usual care physiotherapists. The primary outcome was the percentage of patients with a Parkinson's disease-related complication (ie, visit or admission to hospital because of fracture, other orthopaedic injuries, or pneumonia) adjusted for baseline variables. We compared physiotherapist caseload, the number of physiotherapy sessions, physiotherapy costs, and total health-care costs (including hospital care, but excluding community care, long-term care, and informal care) between the groups, and used a Cox's proportional hazard model for survival time to establish whether mortality was influenced by treatment by a specialised physiotherapist. FINDINGS: We analysed 2129 patients (4649 observations) receiving specialised physiotherapy and 2252 patients (5353 observations) receiving usual care physiotherapy. Significantly fewer patients treated by a specialised physiotherapist had a Parkinson's disease-related complication (n=368 [17%]) than patients treated by a usual care physiotherapist (n=480 [21%]; odds ratio 0·67, 95% CI 0·56-0·81, p<0·0001). The annual caseload of patients per therapist was significantly higher for specialised physiotherapists (mean 3·89 patients per therapist [SD 3·91]) than usual care physiotherapists (1·48 [1·24]). Patients who saw specialised physiotherapists received fewer treatment sessions (mean 33·72 [SD 26·70]) than usual care physiotherapists (47·97 [32·11]). Consequently, expenditure was lower for specialised than usual care physiotherapists, both for direct costs (mean €933 [SD 843] vs €1329 [1021]; annual difference €395, 95% CI 358-432, p<0·0001) and total health-care expenditure (€2056 [3272] vs €2586 [3756]; €530, 391-669, p<0·0001). Mortality risk was lower for patients receiving specialised physiotherapy (134 [6%]) compared with patients receiving usual care physiotherapy (205 [9%], p=0·001) before correction for baseline variables, although Cox's survival model showed no significant difference between the two (hazard ratio 0·86, 95% CI 0·69-1·07, p=0·195). INTERPRETATION: These results confirm the findings from controlled trials, and offer evidence that specialised physiotherapy as delivered through ParkinsonNet is associated with fewer Parkinson's disease-related complications and lower costs in real-world practice. Neurologists can facilitate specialised physiotherapy by specific referral to such experts. FUNDING: None.

Using Medical Claims Analyses to Understand Interventions for Parkinson Patients.

The scientific evidence to support the value of a range of non-pharmacological interventions for people with Parkinson's disease (PD) is increasing. However, showing unequivocally that specific interventions are better than usual care is not straightforward because of generic drawbacks of clinical trials. Here, we address these challenges, specifically related to the context of evaluating complex non-pharmacological interventions for people with PD. Moreover, we discuss the potential merits of undertaking "real world" analyses using medical claims data. We illustrate this approach by discussing an interesting recent publication in The Lancet Neurology, which used such an approach to demonstrate the value of specialized physiotherapy for PD patients, over and above usual care physiotherapy.

ParkinsonNet: A Low-Cost Health Care Innovation With A Systems Approach From The Netherlands.

ParkinsonNet, a low-cost innovation to optimize care for patients with Parkinson disease, was developed in 2004 as a network of physical therapists in several regions in the Netherlands. Since that time, the network has achieved full national reach, with 70 regional networks and around 3,000 specifically trained professionals from 12 disciplines. Key elements include the empowerment of professionals who are highly trained and specialized in Parkinson disease, the empowerment of patients by education and consultation, and the empowerment of integrated multidisciplinary teams to better address and manage the disease. Studies have found that the ParkinsonNet approach leads to outcomes that are at least as good as, if not better than, outcomes from usual care. One study found a 50 percent reduction in hip fractures and fewer inpatient admissions. Other studies suggest that ParkinsonNet leads to modest but important cost savings (at least US$439 per patient annually). These cost savings outweigh the costs of building and maintaining the network. Because of ParkinsonNet's success, the program has now spread to several other countries and serves as a model of a successful and scalable frugal innovation.

Palliative care for patients with Parkinson's disease: study protocol for a mixed methods study.

BACKGROUND: Parkinson's disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and - if needed - the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD. METHODS/DESIGN: We will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5-15 patients with PD and their family caregiver will be followed prospectively for 8-12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver. DISCUSSION: This study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research.

Hidden Treasures and Secret Pitfalls: Application of the Capability Approach to ParkinsonNet.

In the Netherlands, the largest health technology assessment (HTA) program funds mainly (cost-)effectiveness studies and implementation research. The cost-effectiveness studies are usually controlled clinical trials which simultaneously collect cost data. The success of a clinical trial typically depends on the effect size for the primary outcome, such as health gains or mortality rates. A drawback is that in case of a negative primary outcome, relevant other (and perhaps more implicit) benefits might be missed. Conversely, positive trials can contain adverse outcomes that may also remain hidden. The capability approach (developed by Nobel Prize winner and philosopher Sen) is an instrument that may reveal such "hidden treasures and secret pitfalls" that lie embedded within clinical trials, beyond the more traditional outcomes. Here, we exemplify the possible merits of the capability approach using a large clinical trial (funded by the HTA program in the Netherlands) that aimed to evaluate the ParkinsonNet concept, an innovative network approach for Parkinson patients. This trial showed no effects for the primary outcome, but the ParkinsonNet concept tested in this study was nevertheless met with great enthusiasm and was rapidly implemented throughout an entire country, and meanwhile also internationally. We applied the capability approach to the ParkinsonNet concept, and this analysis yielded additional benefits within several capability domains. These findings seems to substantiate the claim that richer policy debates may ensue by applying the capability approach to clinical trial data, in addition to traditional outcomes.

Economic evaluation of occupational therapy in Parkinson's disease: A randomized controlled trial.

BACKGROUND: A large randomized clinical trial (the Occupational Therapy in Parkinson's Disease [OTiP] study) recently demonstrated that home-based occupational therapy improves perceived performance in daily activities of people with Parkinson's disease (PD). The aim of the current study was to evaluate the cost-effectiveness of this intervention. METHODS: We performed an economic evaluation over a 6-month period for both arms of the OTiP study. Participants were 191 community-dwelling PD patients and 180 primary caregivers. The intervention group (n = 124 patients) received 10 weeks of home-based occupational therapy; the control group (n = 67 patients) received usual care (no occupational therapy). Costs were assessed from a societal perspective including healthcare use, absence from work, informal care, and intervention costs. Health utilities were evaluated using EuroQol-5d. We estimated cost differences and cost utility using linear mixed models and presented the net monetary benefit at different values for willingness to pay per quality-adjusted life-year gained. RESULTS: In our primary analysis, we excluded informal care hours because of substantial missing data for this item. The estimated mean total costs for the intervention group compared with controls were €125 lower for patients, €29 lower for caregivers, and €122 higher for patient-caregiver pairs (differences not significant). At a value of €40,000 per quality-adjusted life-year gained (reported threshold for PD), the net monetary benefit of the intervention per patient was €305 (P = 0.74), per caregiver €866 (P = 0.01) and per patient-caregiver pair €845 (P = 0.24). CONCLUSION: In conclusion, occupational therapy did not significantly impact on total costs compared with usual care. Positive cost-effectiveness of the intervention was only significant for caregivers.

Perspectives on Parkinson disease care in Dutch nursing homes.

INTRODUCTION: Parkinson's disease (PD) is a complex and disabling disorder. Ultimately, 20% to 40% of patients are admitted to a nursing home, and neurologists often lose track of these patients. Care and treatment of these institutionalized patients have not been addressed comprehensively, but anecdotal reports suggest it is suboptimal. We conducted a qualitative study to analyze the quality of PD care in Dutch nursing homes from the perspective of residents, caregivers, and health care workers. METHODS: Experiences and (unmet) needs of 15 nursing home residents with PD and parkinsonism (90% Hoehn and Yahr stage 4 and 5) and 15 informal caregivers were assessed using semistructured interviews. Furthermore, 5 focus group discussions were organized with 13 nurses and 22 other health care professionals to explore the experiences and barriers of PD care. RESULTS: Three core unmet needs were identified: (1) unsatisfactory empathy and emotional support, according to residents and informal caregivers; (2) insufficient staff knowledge on PD-related issues, such as motor fluctuations, leading to poorly timed administration of levodopa; (3) suboptimal organization of care with limited access to neurologists and specialized PD nurses. CONCLUSIONS: PD care in Dutch nursing homes is suboptimal according to residents, informal caregivers, and health care workers. Three core areas for improvement were identified, including greater attention for psychosocial problems, improved PD-specific knowledge among nursing home staff, and better collaboration with hospital staff trained in movement disorders.

Effectiveness of occupational therapy in Parkinson's disease: study protocol for a randomized controlled trial.

BACKGROUND: Occupational therapists may have an added value in the care of patients with Parkinson's disease whose daily functioning is compromised, as well as for their immediate caregivers. Evidence for this added value is inconclusive due to a lack of rigorous studies. The aim of this trial is to evaluate the (cost) effectiveness of occupational therapy in improving daily functioning of patients with Parkinson's disease. METHODS/DESIGN: A multicenter, assessor-blinded, two-armed randomized controlled clinical trial will be conducted, with evaluations at three and six months. One hundred ninety-two home-dwelling patients with Parkinson's disease and with an occupational therapy indication will be assigned to the experimental group or to the control group (2:1). Patients and their caregivers in the experimental group will receive ten weeks of home-based occupational therapy according to recent Dutch guidelines. The intervention will be delivered by occupational therapists who have been specifically trained to treat patients according to these guidelines. Participants in the control group will not receive occupational therapy during the study period. The primary outcome for the patient is self-perceived daily functioning at three months, assessed with the Canadian Occupational Performance Measure. Secondary patient-related outcomes include: objective performance of daily activities, self-perceived satisfaction with performance in daily activities, participation, impact of fatigue, proactive coping skills, health-related quality of life, overall quality of life, health-related costs, and effectiveness at six months. All outcomes at the caregiver level will be secondary and will include self-perceived burden of care, objective burden of care, proactive coping skills, overall quality of life, and care-related costs. Effectiveness will be evaluated using a covariance analysis of the difference in outcome at three months. An economic evaluation from a societal perspective will be conducted, as well as a process evaluation. DISCUSSION: This is the first large-scale trial specifically evaluating occupational therapy in Parkinson's disease. It is expected to generate important new information about the possible added value of occupational therapy on daily functioning of patients with Parkinson's disease. TRIAL REGISTRATION: Clinicaltrials.gov: NCT01336127.

Freezer or non-freezer: clinical assessment of freezing of gait.

INTRODUCTION: Freezing of gait (FOG) is both common and debilitating in patients with Parkinson's disease (PD). Future pathophysiology studies will depend critically upon adequate classification of patients as being either 'freezers' or 'non-freezers'. This classification should be based ideally upon objective confirmation by an experienced observer during clinical assessment. Given the known difficulties to elicit FOG when examining patients, we aimed to investigate which simple clinical test would be the most sensitive to provoke FOG objectively. METHODS: We examined 50 patients with PD, including 32 off-state freezers (defined as experiencing subjective 'gluing of the feet to the floor'). Assessment including a FOG trajectory (three trials: normal speed, fast speed, and with dual tasking) and several turning variants (180° vs. 360° turns; leftward vs. rightward turns; wide vs. narrow turning; and slow vs. fast turns). RESULTS: Sensitivity of the entire assessment to provoke FOG in subjective freezers was 0.74, specificity was 0.94. The most effective test to provoke FOG was rapid 360° turns in both directions and, if negative, combined with a gait trajectory with dual tasking. Repeated testing improved the diagnostic yield. The least informative tests included wide turns, 180° turns or normal speed full turns. Sensitivity to provoke objective FOG in subjective freezers was 0.65 for the rapid full turns in both directions and 0.63 for the FOG trajectory. DISCUSSION: The most efficient way to objectively ascertain FOG is asking patients to repeatedly make rapid 360° narrow turns from standstill, on the spot and in both directions.

Reproducibility and validity of patient-rated assessment of speech, swallowing, and saliva control in Parkinson's disease.

OBJECTIVE: To report on the development and psychometric evaluation of the Radboud Oral Motor Inventory for Parkinson's Disease (ROMP), a newly developed patient-rated assessment of speech, swallowing, and saliva control in patients with Parkinson's disease (PD). DESIGN: Reliability and validity study. SETTING: Tertiary-care Parkinson center for multidisciplinary assessment. PARTICIPANTS: Consecutive community-dwelling patients with PD (n=129) or atypical parkinsonism (AP; n=49; mean ± SD age, 64±9.8y; mean ± SD disease duration, 7y; median Hoehn and Yahr [HY] stage, 2.5). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: To evaluate reproducibility, 60 patients completed the ROMP twice within a mean of 24±12 days. To study validity, another cohort of 118 patients who had completed the ROMP was assessed by both a neurologist (HY stage, Unified Parkinson's Disease Rating Scale III) and speech-language pathologist (severity of dysarthria, dysphagia, drooling) who were blinded to ROMP scores. RESULTS: Confirmatory factor analysis identified the 3 a priori-designed ROMP domains of speech, swallowing, and saliva control. Internal consistency was .95 for the total ROMP and .87 to .94 for the 3 domains or subscales. Intraclass correlation coefficients for reproducibility were .94 and .83 to .92 for the subscales. Construct validity was substantial to good with correlations ranging from .36 to .82. The ROMP differentiated significantly (P<.001) between patients indicated for speech therapy (based on independent assessment) and those who were not and between mild, moderate, and severe PD according to HY stage. CONCLUSIONS: The ROMP provides a reliable and valid instrument to evaluate patient-perceived problems with speech, swallowing, and saliva control in patients with PD or AP.

Evaluation of the falls telephone: an automated system for enduring assessment of falls.

OBJECTIVES: To evaluate the reliability and user experiences of an automated telephone system to monitor falls during a prolonged period of time. DESIGN: Prospective cohort study. SETTING: Four neurological outpatient clinics in the Netherlands. PARTICIPANTS: One hundred nineteen community-dwelling people with Parkinson's disease without dementia, because falls are common in this population. MEASUREMENTS: Clinical and demographic data were obtained. The Falls Telephone is a computerized telephone system through which participants can enter the number of falls during a particular period. During a follow-up of 1 to 40 weekly calls, 2,465 calls were made. In total, 173 no-fall entries and 115 fall entries were verified using personal telephone interviews. User experiences were evaluated in 90 of the 119 participants using structured telephone interviews. RESULTS: All no-fall entries and 78% of fall entries were confirmed to be correct. Sensitivity to detect falls was 100%, and specificity was 87%. Users regarded the Falls Telephone as a convenient tool to monitor falls. CONCLUSION: The Falls Telephone is a convenient and reliable instrument to monitor falls. The automated system has high specificity, obviating the need for time-consuming personal follow-up calls in the majority of nonfallers. As such, the Falls Telephone lends itself well to data collection in large trials with prolonged follow-up in participants with Parkinson's disease.

Efficacy of community-based physiotherapy networks for patients with Parkinson's disease: a cluster-randomised trial.

BACKGROUND: Many patients with Parkinson's disease are treated with physiotherapy. We have developed a community-based professional network (ParkinsonNet) that involves training of a selected number of expert physiotherapists to work according to evidence-based recommendations, and structured referrals to these trained physiotherapists to increase the numbers of patients they treat. We aimed to assess the efficacy of this approach for improving health-care outcomes. METHODS: Between February, 2005, and August, 2007, we did a cluster-randomised trial with 16 clusters (defined as community hospitals and their catchment area). Clusters were randomly allocated by use of a variance minimisation algorithm to ParkinsonNet care (n=8) or usual care (n=8). Patients were assessed at baseline and at 8, 16, and 24 weeks of follow-up. The primary outcome was a patient preference disability score, the patient-specific index score, at 16 weeks. Health secondary outcomes were functional mobility, mobility-related quality of life, and total societal costs over 24 weeks. Analysis was by intention to treat. This trial is registered, number NCT00330694. FINDINGS: We included 699 patients. Baseline characteristics of the patients were comparable between the ParkinsonNet clusters (n=358) and usual-care clusters (n=341). The primary endpoint was similar for patients within the ParkinsonNet clusters (mean 47.7, SD 21.9) and control clusters (48.3, 22.4). Health secondary endpoints were also similar for patients in both study groups. Total costs over 24 weeks were lower in ParkinsonNet clusters compared with usual-care clusters (difference euro727; 95% CI 56-1399). INTERPRETATION: Implementation of ParkinsonNet networks did not change health outcomes for patients living in ParkinsonNet clusters. However, health-care costs were reduced in ParkinsonNet clusters compared with usual-care clusters. FUNDING: ZonMw; Netherlands Organisation for Scientific Research; Dutch Parkinson's Disease Society; National Parkinson Foundation; Stichting Robuust.