Assessing the validity of a Parkinson's care evaluation: the PRIME-NL study.

INTRODUCTION: The PRIME-NL study prospectively evaluates a new integrated and personalized care model for people with parkinsonism, including Parkinson's disease, in a selected region (PRIME) in the Netherlands. We address the generalizability and sources of selection and confounding bias of the PRIME-NL study by examining baseline and 1-year compliance data. METHODS: First, we assessed regional baseline differences between the PRIME and the usual care (UC) region using healthcare claims data of almost all people with Parkinson's disease in the Netherlands (the source population). Second, we compared our questionnaire sample to the source population to determine generalizability. Third, we investigated sources of bias by comparing the PRIME and UC questionnaire sample on baseline characteristics and 1-year compliance. RESULTS: Baseline characteristics were similar in the PRIME (n = 1430) and UC (n = 26,250) source populations. The combined questionnaire sample (n = 920) was somewhat younger and had a slightly longer disease duration than the combined source population. Compared to the questionnaire sample in the PRIME region, the UC questionnaire sample was slightly younger, had better cognition, had a longer disease duration, had a higher educational attainment and consumed more alcohol. 1-year compliance of the questionnaire sample was higher in the UC region (96%) than in the PRIME region (92%). CONCLUSION: The generalizability of the PRIME-NL study seems to be good, yet we found evidence of some selection bias. This selection bias necessitates the use of advanced statistical methods for the final evaluation of PRIME-NL, such as inverse probability weighting or propensity score matching. The PRIME-NL study provides a unique window into the validity of a large-scale care evaluation for people with a chronic disease, in this case parkinsonism.

Effects of dual-task interference on dexterity performance in people with mild to moderately severe Parkinson's disease: An observational analysis.

BACKGROUND: Debilitating problems with hand function experienced by people with Parkinson's disease (PD) can worsen during multitasking. PURPOSE: To investigate the effects of dual-task interference on a pegboard task in people with mild to moderately severe PD. STUDY DESIGN: Descriptive analysis. METHODS: A secondary analysis of baseline data from the ParkinsonNet physiotherapy study conducted in 2006 in the Netherlands. The 9-hole peg test was performed with the more affected hand under single- and dual-task conditions. In dual-task trials, a cognitive task was added. The patient specific index-Parkinson's disease identified two functional priority groups-those reporting arm and hand problems as a priority for allied health management ("upper extremity priority") and those prioritizing other issues ("other priority"). We investigated differences in single- and dual-task performance at different levels of disease severity (Hoehn and Yahr stage) and for the two priority groups, and calculated the dual-task effect. RESULTS: Participants were 566 people with PD (Hoehn and Yahr stages I-IV). Dual-task interference occurred at each disease stage. Significant interactions existed between the task condition and disease severity (F (3, 559) = 4.28, p = 0.005) and task condition and priority group (F (1, 561) = 4.44, p = 0.036). Dual-task interference was greater in participants with more advanced disease or those prioritizing upper extremity problems. CONCLUSION: We described the effects of dual-task interference on more affected hand performance of a standardized dexterity test in a broad sample of people with PD. Dual-task interference may impact the daily lives of people with PD, especially those with more severe disease or who report arm and hand problems. It is important for clinicians to consider dual-task interference during upper extremity assessment and treatment.

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.

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.

From trials to clinical practice: Temporal trends in the coverage of specialized allied health services for Parkinson's disease.

BACKGROUND AND PURPOSE: To determine how the coverage of specialized allied health services for patients with Parkinson's disease (PD) has developed in the Netherlands since the publication of trials that demonstrated cost-effectiveness. METHODS: We used healthcare expenditure-based data on all insured individuals in the Netherlands to determine the annual proportion of patients with PD who received either specialized or generic allied health services (physiotherapy, occupational therapy, speech-language therapy) in 2 calendar years separated by a 5-year interval (2012 and 2017). Specialized allied health services were delivered through the ParkinsonNet approach, which encompassed professional training and concentration of care among specifically trained professionals. RESULTS: Between 2012 and 2017, there was an increase in the number of patients with any physiotherapy (from 17,843 [62% of all patients with PD that year] to 22,282 [68%]), speech-language therapy (from 2171 [8%] to 3378 [10%]), and occupational therapy (from 2813 [10%] to 5939 [18%]). Among therapy-requiring patients, the percentage who were treated by a specialized therapist rose substantially for physiotherapy (from 36% in 2012 to 62% in 2017; χ2  = 2460.2; p < 0.001), speech-language therapy (from 59% to 85%; χ2  = 445.4; p < 0.001), and occupational therapy (from 61% to 77%; χ2  = 231.6; p < 0.001). By contrast, the number of patients with generic therapists did not change meaningfully. By 2017, specialized care delivery had extended to regions that had been poorly covered in 2012, essentially achieving nationwide coverage. CONCLUSIONS: Following the publication of positive trials, specialized allied healthcare delivery was successfully scaled for patients with PD in the Netherlands, potentially serving as a template for other healthcare innovations for patients with PD elsewhere.

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.

Palliative care for persons with Parkinson's disease: a qualitative study on the experiences of health care professionals.

BACKGROUND: Parkinson's disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms. The risk of complications increases with progression of the disease. These complications have a tremendous impact on the quality of life of people with PD. The aim of this study was to examine health care professionals' experiences of potential barriers and facilitators in providing palliative care for people with PD in the Netherlands. METHODS: This was a qualitative descriptive study. The data were collected from 10 individual in-depth interviews and three focus groups (n = 29) with health care professionals. Health care professionals were selected based on a positive answer to the question: "In the past 2 years, did you treat or support a person with PD who subsequently died?" The data were analyzed by thematic text analysis. RESULTS: Health care professionals supported the development of a palliative care system for PD but needed to better understand the essence of palliative care. In daily practice, they struggled to identify persons' needs due to interfering PD-specific symptoms such as cognitive decline and communication deficits. Timely addressing the personal preferences for providing palliative care was identified as an important facilitator. Health care professionals acknowledged being aware of their lack of knowledge and of their little competence in managing complex PD. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity. CONCLUSIONS: Health care professionals experienced several facilitators and barriers to the provision of palliative care to people with PD. There is a need to improve the knowledge on complex PD and the continuity of information, as well as optimize coordination and deliver care based on a persons' preferences. Additional training can help to become more knowledgeable and confident.

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.

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.

Protocol for a randomized comparison of integrated versus consecutive dual task practice in Parkinson's disease: the DUALITY trial.

BACKGROUND: Multiple tasking is an integral part of daily mobility. Patients with Parkinson's disease have dual tasking difficulties due to their combined motor and cognitive deficits. Two contrasting physiotherapy interventions have been proposed to alleviate dual tasking difficulties: either to discourage simultaneous execution of dual tasks (consecutive training); or to practice their concurrent use (integrated training). It is currently unclear which of these training methods should be adopted to achieve safe and consolidated dual task performance in daily life. Therefore, the proposed randomized controlled trial will compare the effects of integrated versus consecutive training of dual tasking (tested by combining walking with cognitive exercises). METHODS AND DESIGN: Hundred and twenty patients with Parkinson's disease will be recruited to participate in this multi-centered, single blind, randomized controlled trial. Patients in Hoehn & Yahr stage II-III, with or without freezing of gait, and who report dual task difficulties will be included. All patients will undergo a six-week control period without intervention after which they will be randomized to integrated or consecutive task practice. Training will consist of standardized walking and cognitive exercises delivered at home four times a week during six weeks. Treatment is guided by a physiotherapist twice a week and consists of two sessions of self-practice using an MP3 player. Blinded testers will assess patients before and after the control period, after the intervention period and after a 12-week follow-up period. The primary outcome measure is dual task gait velocity, i.e. walking combined with a novel untrained cognitive task to evaluate the consolidation of learning. Secondary outcomes include several single and dual task gait and cognitive measures, functional outcomes and a quality of life scale. Falling will be recorded as a possible adverse event using a weekly phone call for the entire study period. DISCUSSION: This randomized study will evaluate the effectiveness and safety of integrated versus consecutive task training in patients with Parkinson's disease. The study will also highlight whether dual task gait training leads to robust motor learning effects, and whether these can be retained and carried-over to untrained dual tasks and functional mobility. TRIAL REGISTRATION: Clinicaltrials.gov NCT01375413.

Delivering Multidisciplinary Rehabilitation Care in Parkinson's Disease: An International Consensus Statement.

BACKGROUND: Parkinson's disease (PD) is a complex neurodegenerative disorder impacting everyday function and quality of life. Rehabilitation plays a crucial role in improving symptoms, function, and quality of life and reducing disability, particularly given the lack of disease-modifying agents and limitations of medications and surgical therapies. However, rehabilitative care is under-recognized and under-utilized in PD and often only utilized in later disease stages, despite research and guidelines demonstrating its positive effects. Currently, there is a lack of consensus regarding fundamental topics related to rehabilitative services in PD. OBJECTIVE: The goal of the international Parkinson's Foundation Rehabilitation Medicine Task Force was to develop a consensus statement regarding the incorporation of rehabilitation in PD care. METHODS: The Task Force, comprised of international multidisciplinary experts in PD and rehabilitation and people directly affected by PD, met virtually to discuss topics such as rehabilitative services, existing therapy guidelines and rehabilitation literature in PD, and gaps and needs. A systematic, interactive, and iterative process was used to develop consensus-based statements on core components of PD rehabilitation and discipline-specific interventions. RESULTS: The expert-based consensus statement outlines key tenets of rehabilitative care including its multidisciplinary approach and discipline-specific guidance for occupational therapy, physical therapy, speech language pathology/therapy, and psychology/neuropsychology across all PD stages. CONCLUSIONS: Rehabilitative interventions should be an essential component in the comprehensive treatment of PD, from diagnosis to advanced disease. Greater education and awareness of the benefits of rehabilitative services for people with PD and their care partners, and further evidence-based and scientific study are encouraged.

Effectiveness of multidisciplinary care for Parkinson's disease: a randomized, controlled trial.

Multidisciplinary care is considered an optimal model to manage Parkinson's disease (PD), but supporting evidence is limited. We performed a randomized, controlled trial (RCT) to establish whether a multidisciplinary/specialist team offers better outcomes, compared to stand-alone care from a general neurologist. Patients with PD were randomly allocated to an intervention group (care from a movement disorders specialist, PD nurses, and social worker) or a control group (care from general neurologists). Both interventions lasted 8 months. Clinicians and researchers were blinded for group allocation. The primary outcome was the change in quality of life (Parkinson's Disease Questionnaire; PDQ-39) from baseline to 8 months. Other outcomes were the UPDRS, depression (Montgomery-Asberg Depression Scale; MADRS), psychosocial functioning (Scales for Outcomes in Parkinson's disease-Psychosocial; SCOPA-PS), and caregiver strain (Caregiver Strain Index; CSI). Group differences were analyzed using analysis of covariance adjusted for baseline values and presence of response fluctuations. A total of 122 patients were randomized and 100 completed the study (intervention, n = 51; control, n = 49). Compared to controls, the intervention group improved significantly on PDQ-39 (difference, 3.4; 95% confidence interval [CI]: 0.5-6.2) and UPDRS motor scores (4.1; 95% CI: 0.8-7.3). UPDRS total score (5.6; 95% CI: 0.9-10.3), MADRS (3.7; 95% CI: 1.4-5.9), and SCOPA-PS (2.1; 95% CI: 0.5-3.7) also improved significantly. This RCT gives credence to a multidisciplinary/specialist team approach. We interpret these positive findings cautiously because of the limitations in study design. Further research is required to assess teams involving additional disciplines and to evaluate cost-effectiveness of integrated approaches. © 2012 Movement Disorder Society.

Parkinson's disease and osteoporosis.

BACKGROUND: patients with Parkinson's disease (PD) have a high risk of sustaining osteoporotic fractures as a result of falls and reduced bone mass. OBJECTIVE: to summarise the underlying pathophysiological mechanisms of bone loss in PD by reviewing the available literature. METHODS: a Medline search was performed for articles published between January 1975 and January 2011, using the keywords 'bone mineral density', 'bone loss', 'bone metabolism', 'osteoporosis', 'osteopenia', 'Parkinson's disease' and 'Parkinsonism'. RESULTS: PD patients have a lower bone mineral density (BMD) than age-matched controls. Bone loss in PD is multifactorial, resulting from immobility, decreased muscle strength, and low body weight. Vitamin D deficiency is also important, not only because it reduces BMD, but also because cell function in the substantia nigra depends on vitamin D. Lastly, hyperhomocysteinaemia, an independent risk factor for osteoporosis, is common in PD, due to levodopa use, as well as vitamin B12 and folic acid deficiency. A few studies have demonstrated that treatment with bisphosphonates, vitamin D and calcium can increase BMD and reduce fractures in PD patients. CONCLUSION: bone loss in PD is multifactorial. It is clinically important because of the concomitant risk of fractures. Screening for osteoporosis should be considered more often, and therapeutic interventions should be initiated.

The impact of occupational therapy in Parkinson's disease: a randomized controlled feasibility study.

AIM: To evaluate the feasibility of a randomized controlled trial including process and potential impact of occupational therapy in Parkinson's disease. DESIGN: Process and outcome were quantitatively and qualitatively evaluated in an exploratory multicentre, two-armed randomized controlled trial at three months. PARTICIPANTS: Forty-three community-dwelling patients with Parkinson's disease and difficulties in daily activities, their primary caregivers and seven occupational therapists. INTERVENTION: Ten weeks of home-based occupational therapy according to the Dutch guidelines of occupational therapy in Parkinson's disease versus no occupational therapy in the control group. MAIN MEASURES: Process evaluation measured accrual, drop-out, intervention delivery and protocol adherence. Primary outcome measures of patients assessed daily functioning: Canadian Occupational Performance Measure (COPM) and Assessment of Motor and Process Skills. Primary outcome for caregivers was caregiver burden: Zarit Burden Inventory. Participants' perspectives of the intervention were explored using questionnaires and in-depth interviews. RESULTS: Inclusion was 23% (43/189), drop-out 7% (3/43) and unblinding of assessors 33% (13/40). Full intervention protocol adherence was 74% (20/27), but only 60% (71/119) of baseline Canadian Occupational Performance Measure priorities were addressed in the intervention. The outcome measures revealed negligible to small effects in favour of the intervention group. Almost all patients and caregivers of the intervention group were satisfied with the results. They perceived: 'more grip on the situation' and used 'practical advices that make life easier'. Therapists were satisfied, but wished for a longer intervention period. CONCLUSIONS: The positive perceived impact of occupational therapy warrants a large-scale trial. Adaptations in instructions and training are needed to use the Canadian Occupational Performance Measure as primary outcome measure.

Recognition of physiotherapists' expertise in Parkinson's disease.

BACKGROUND: Publicly available information comparing performance across quality and costs has proliferated in recent years, both about individual healthcare professionals and hospitals. This type of information is now becoming increasingly available for physiotherapists with expertise in Parkinson's disease (PD). Our study aimed to explore the ability of people with Parkinson's disease to recognise expertise, and to what extent respondents selectively choose such expert physiotherapists. METHODS: We used claim data from the period 2009-2010 to select customers with PD who claimed physiotherapy. A random sample of 500 eligible respondents received a paper-based survey. We used descriptive statistics to compare the respondent characteristics, a qualitative programme to analyse the qualitative items, and univariate and multivariate regression. RESULTS: Most respondents (89%) took their referring physician's advice when selecting a physiotherapist, although this advice rarely was supported with arguments. The remaining respondents (11%) searched for comparative performance information about physiotherapists. Respondents who recognised the added value of PD expertise among physiotherapists were 3.28 times as likely to search for comparative performance information as those who did not understand. Respondents were willing to switch to an expert physiotherapist (68%), and this willingness increased if they recognised the value of PD expertise (p < .001). CONCLUSION: The participants were able to recognise certain aspects of expertise. Though they showed relatively few signs of selectively choice behaviour for expert physiotherapists. Both respondents and referring professionals need more understanding about the added value of an expert physiotherapist, to foster selective provider choice.

Using online health communities to deliver patient-centered care to people with chronic conditions.

BACKGROUND: Our health care system faces major threats as the number of people with multiple chronic conditions rises dramatically. OBJECTIVE: To study the use of Online Health Communities (OHCs) as a tool to facilitate high-quality and affordable health care for future generations. METHODS: OHCs are Internet-based platforms that unite either a group of patients, a group of professionals, or a mixture of both. Members interact using modern communication technologies such as blogs, chats, forums, and wikis. We illustrate the use of OHCs for ParkinsonNet, a professional network for Parkinson disease whose participants-both patients and professionals-use various types of OHCs to deliver patient-centered care. RESULTS: We discuss several potential applications in clinical practice. First, due to rapid advances in medical knowledge, many health professionals lack sufficient expertise to address the complex health care needs of chronic patients. OHCs can be used to share experiences, exchange knowledge, and increase disease-specific expertise. Second, current health care delivery is fragmented, as many patients acquire relationships with multiple professionals and institutions. OHCs can bridge geographical distances and enable interdisciplinary collaboration across institutions and traditional echelons. Third, chronic patients lack adequate tools to self-manage their disease. OHCs can be used to actively engage and empower patients in their health care process and to tailor care to their individual needs. Personal health communities of individual patients offer unique opportunities to store all medical information in one central place, while allowing transparent communication across all members of each patient's health care team. CONCLUSIONS: OHCs are a powerful tool to address some of the challenges chronic care faces today. OHCs help to facilitate communication among professionals and patients and support coordination of care across traditional echelons, which does not happen spontaneously in busy practice.

Case management interventions in chronic disease reduce anxiety and depressive symptoms: A systematic review and meta-analysis.

BACKGROUND: There is no systematic insight into the effect of case management on common complications of chronic diseases, including depressive symptoms and symptoms of anxiety. This is a significant knowledge gap, given that people with a chronic disease such as Parkinson Disease or Alzheimer's Disease have identified care coordination as one of their highest priorities. Furthermore, it remains unclear whether the putative beneficial effects of case management would vary by crucial patient characteristics, such as their age, gender, or disease characteristics. Such insights would shift from "one size fits all" healthcare resource allocation to personalized medicine. OBJECTIVE: We systematically examined the effectiveness of case management interventions on two common complications associated PD and other chronic health conditions: Depressive symptoms and symptoms of anxiety. METHODS: We identified studies published until November 2022 from PubMed and Embase databases using predefined inclusion criteria. For each study, data were extracted independently by two researchers. First, descriptive and qualitative analyses of all included studies were performed, followed by random-effects meta-analyses to assess the impact of case management interventions on anxiety and depressive symptoms. Second, meta-regression was performed to analyze potential modifying effects of demographic characteristics, disease characteristics and case management components. RESULTS: 23 randomized controlled trials and four non-randomized studies reported data on the effect of case management on symptoms of anxiety (8 studies) or depressive symptoms (26 studies). Across meta-analyses, we observed a statistically significant effect of case management on reducing symptoms of anxiety (Standardized Mean Difference [SMD] = - 0.47; 95% confidence interval [CI]: -0.69, -0.32) and depressive symptoms (SMD = - 0.48; CI: -0.71, -0.25). We found large heterogeneity in effect estimates across studies, but this was not explained by patient population or intervention characteristics. CONCLUSIONS: Among people with chronic health conditions, case management has beneficial effects on symptoms of depressive symptoms and symptoms of anxiety. Currently, research on case management interventions are rare. Future studies should assess the utility of case management for potentially preventative and common complications, focusing on the optimal content, frequency, and intensity of case management.

Proactive and Integrated Management and Empowerment in Parkinson's Disease protocol for a randomised controlled trial (PRIME-UK) to evaluate a new model of care.

BACKGROUND: People living with Parkinson's disease experience progressive motor and non-motor symptoms, which negatively impact on health-related quality of life and can lead to an increased risk of hospitalisation. It is increasingly recognised that the current care models are not suitable for the needs of people with parkinsonism whose care needs evolve and change as the disease progresses. This trial aims to evaluate whether a complex and innovative model of integrated care will increase an individual's ability to achieve their personal goals, have a positive impact on health and symptom burden and be more cost-effective when compared with usual care. METHODS: This is a single-centre, randomised controlled trial where people with parkinsonism and their informal caregivers are randomised into one of two groups: either PRIME Parkinson multi-component model of care or usual care. Adults ≥18 years with a diagnosis of parkinsonism, able to provide informed consent or the availability of a close friend or relative to act as a personal consultee if capacity to do so is absent and living in the trial geographical area are eligible. Up to three caregivers per patient can also take part, must be ≥18 years, provide informal, unpaid care and able to give informed consent. The primary outcome measure is goal attainment, as measured using the Bangor Goal Setting Interview. The duration of enrolment is 24 months. The total recruitment target is n=214, and the main analyses will be intention to treat. DISCUSSION: This trial tests whether a novel model of care improves health and disease-related metrics including goal attainment and decreases hospitalisations whilst being more cost-effective than the current usual care. Subject to successful implementation of this intervention within one centre, the PRIME Parkinson model of care could then be evaluated within a cluster-randomised trial at multiple centres.

Time trends in demographic characteristics of participants and outcome measures in Parkinson's disease research: A 19-year single-center experience.

Background: Females, people with young-onset PD and older individuals, and non-white populations are historically underrepresented in clinical Parkinson's disease (PD) research. Furthermore, research traditionally focused predominantly on motor symptoms of PD. Including a representative and diverse group of people with PD and also studying non-motor symptoms is warranted to better understand heterogeneity in PD and to generalize research findings. Objective: This project aimed to determine whether, within a consecutive series of PD studies performed within a single center in the Netherlands: (1) the proportion of included females, mean age and proportion of native Dutch people changed over time; and 2) reports of the ethnicity of participants and the proportion of studies with non-motor outcomes changed over time. Methods: Characteristics of participants and non-motor outcomes were analyzed using a unique dataset of summary statistics of studies with a large number of participants conducted at a single center during a 19-year period (2003-2021). Results: Results indicate no relationship between calendar time and proportion of females (mean 39 %), mean age (66 years), proportion of studies that reported ethnicity, and proportion of native Dutch people in studies (range 97-100 %). The proportion of participants in whom non-motor symptoms were assessed increased, but this difference was consistent with chance. Conclusion: Study participants in this center reflect the PD population in the Netherlands in terms of sex, but older individuals and non-native Dutch individuals are under-represented. We have still a lot to do in ensuring adequate representation and diversity in PD patients within our research.

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.