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Contains fulltext : 294543.pdf (Publisher’s version ) (Open Access) 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.

Highlights•Parkinson’s disease studies historically focus on selective subgroups and motor symptoms.•We examined 33 Parkinson’s disease studies at a single center between 2003 and 2021.•We observed no temporal changes in adequate representation by sex, age or ethnicity.•It was equivocal whether assessment of non-motor symptoms increased over time.•Improved representation and non-motor assessments are warranted in future studies.AbstractBackgroundFemales, 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.ObjectiveThis 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.MethodsCharacteristics 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).ResultsResults 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.ConclusionStudy 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.

Item does not contain fulltext Deep Brain Stimulation (DBS) is an effective intervention for Parkinson's disease if drug therapy with dopaminergic medication has become insufficient. Current post-operative care focuses on optimizing the neurostimulator in combination with medication. We believe that the success rate of DBS surgery can be enhanced if more attention is paid to the (psychosocial) adjustment problems of patients and their families. Finding a new balance after surgery, in the relationship, family and work, is not easy and can be complicated by postoperative non-motor changes. Care for psychosocial adjustment may improve the quality of life and as such increase the overall outcome after surgery. We present two cases to illustrate these psychosocial adjustment problems. One case describes the impact of stimulation-related behavioural changes on relationships, while the other case describes difficulties in resuming work despite successful surgery. Psychosocial support appeared helpful for both cases to find their new balance in life.

Contains fulltext : 118353.pdf (Publisher’s version ) (Closed access) 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. (c) 2012 Movement Disorder Society.

Contains fulltext : 97891.pdf (Publisher’s version ) (Closed access) 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.

Contains fulltext : 81804.pdf (Publisher’s version ) (Closed access) AIM: The aim of this study was to develop quality indicators for physiotherapy in Parkinson's disease (PD) according to international criteria. METHODS: Indicators were based on an evidence-based guideline for physiotherapy in PD. Guideline recommendations were transformed into indicators and rated for their relevance by an expert panel. Relevant indicators were incorporated into a questionnaire termed ''Quality Indicators for Physiotherapy in PD'' (QIP-PD). The QIP-PD was piloted among 105 physiotherapists. The adjusted version was evaluated in 46 physiotherapists with specific expertise in PD and in 795 general physiotherapists. The following clinimetric aspects of the QIP-PD were tested: completeness of answers, response distribution, internal consistency, and discriminative power. The reliability of the QIP-PD was evaluated by interviews among a randomly selected cohort of 32 PD experts and 32 general physiotherapists. RESULTS: The expert panel selected 16 indicators, which were transformed into an adjusted 17-item QIP-PD. The adjusted QIP-PD was completed by 41 expert physiotherapists and 286 general physiotherapists. Comple-teness of item scores ranged from 95-98%. Six items were excluded from the final analyses as they showed ceiling effect among both groups, or lacked discriminative power. The total QIP-PD score for the 11 items was significantly higher for expert physiotherapists (35.1+/-4.2) compared to general physiotherapists (22.2+/-7.7; P=0.01). Internal consistency was good (Crohnbach's alpha 0.84). QIP-PD scores of therapists and interviewers (correlated using Intraclass Correlations Coefficients) ranged from 0.63 to 0.75. CONCLUSIONS: The QIP-PD is a relevant, feasible, valid, discriminative and reliable instrument to measure adherence to guidelines for physiotherapy in PD. In addition, the results underscore that quality improvement interventions for physiotherapy in PD are needed, as guideline adherence is suboptimal in physiotherapists without specific PD expertise.

Contains fulltext : 81942.pdf (Publisher’s version ) (Closed access) 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.

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© 2015 The Cochrane Collaboration. This is the protocol for a review and there is no abstract. The objectives are as follows: To assess the effects of interventions designed to reduce the incidence of falls in people with Parkinson's disease. ispartof: Cochrane Database of Systematic Reviews vol:2015 issue:3 pages:1-7 status: published

Contains fulltext : 155108.pdf (Publisher’s version ) (Closed access) 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 euro125 lower for patients, euro29 lower for caregivers, and euro122 higher for patient-caregiver pairs (differences not significant). At a value of euro40,000 per quality-adjusted life-year gained (reported threshold for PD), the net monetary benefit of the intervention per patient was euro305 (P = 0.74), per caregiver euro866 (P = 0.01) and per patient-caregiver pair euro845 (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.

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Contains fulltext : 118354.pdf (Publisher’s version ) (Open Access) 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.

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