Concept Mapping to Define Components for an Occupation-Based Intervention for Parkinson's Disease and Anxiety.

BACKGROUND: Anxiety, a common symptom of Parkinson's disease (PD), results in reduced life quality, reduced participation in meaningful roles and daily activities, and increased health burden. There are no evidence-based interventions to reduce the impact of anxiety in PD on participation. OBJECTIVE: This study aimed to identify the key components required for the co-production of an occupation- and community-based intervention for people with PD-related anxiety. METHODS: A participatory mixed-methods research study was conducted using online Group Concept Mapping methodology that included five stages: brainstorming, idea synthesis, sorting activity, rating activity, and analysis. A cluster map, pattern match, and 'go-zone' charts were created through multivariate statistical analysis based on participants' responses. The stages were guided by questions generated by the research team working with stakeholders. RESULTS: Eighty-three people participated, with 64 taking part in more than one activity. Participants included people with PD (n = 72), care partners (n = 6), and occupational therapists (n = 5). The final map contained 119 statements with eight clusters (stress value 0.252): exercise, lifestyle changes, self-help, coping, access to information, professional help, peers and groups, support from others. Significant agreement existed between the importance and feasibility rating activities (r = -0.07). 'Go-zone' charts highlighted the priority statements for intervention development. CONCLUSIONS: This novel participatory study highlighted priority components that provide starting points for future development of an occupation- and community-based intervention for people with PD-related anxiety.

Characteristics of Occupational Therapy Interventions for Community-Dwelling Adults With Anxiety: Protocol for a Scoping Review.

BACKGROUND: Anxiety is linked to decreased life quality and well-being. Living with an anxiety disorder results in higher personal and societal financial expenditure. Occupational therapists work with people living with anxiety in a variety of settings. A preliminary database search was conducted, and no current or underway systematic or scoping reviews on the topic were identified. Developing an overview of studies of occupational therapy interventions for people with anxiety is a necessary first step to understanding the existing knowledge and to increase the impact of future interventions. This scoping review will build on the findings of a previously conducted systematic review. OBJECTIVE: This scoping review will identify the following: (1) what occupational therapy interventions exist for adults with anxiety and (2) the intervention characteristics including outcomes used and impact observed. METHODS: This protocol was reviewed by an occupational therapist as part of a patient and public involvement consultation. The review will consider all studies and publications of occupational therapy that include community-dwelling adults with a diagnosis of anxiety who are aged 18 years and older and diagnosed with an anxiety disorder (Diagnostic and Statistical Manual of Mental Disorders [DSM-5-TR] criteria). Databases to be searched are MEDLINE, CINAHL, Cochrane Library, Science Direct, PsycArticles, Psychology & Behavioural Sciences Collection, Embase, PubMed, TRIP, Proquest, Social Care Online, JBI EBP database, OpenGrey, and OALster. Titles and abstracts will be screened against the inclusion criteria using Rayyan Qatar Computing Research Institute. Potentially relevant studies will be retrieved in full and assessed against the inclusion criteria. Articles published in English will be included. No date limiters will be used. Study selection will be completed by 2 independent reviewers. Data will be extracted using a data extraction tool. RESULTS: Data will be charted using the Template for Intervention Description and Replication (TIDieR) checklist in alignment with the review objectives. The scoping review will be reported in accordance with the Preferred Reporting Items for Systematic review and Meta-Analysis Protocols statement. CONCLUSIONS: This scoping review will produce valuable information about community-based interventions used to improve participation, life quality, and well-being for adults with anxiety to support the development of occupational therapy interventions. The findings will be disseminated through professional and National Health Service bodies, employer organizations, conferences, and research articles. The findings will be of value to health care professionals and researchers working to improve the lives of people living with anxiety. TRIAL REGISTRATION: Open Science Framework DOI 10.17605/OSF.IO/JS549; https://osf.io/js549/. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/41230.

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.

Managing Fatigue in Parkinson's Disease: Protocol for a Pilot Randomized Controlled Trial.

Background. Fatigue is a disabling symptom of Parkinson's disease (PD). Managing Fatigue: A Six-Week Energy Conservation Intervention was developed to improve the occupational performance of people with fatigue. Efficacy of this program has not been established in PD. Purpose. This study will assess feasibility of the Managing Fatigue: Individual Program (MFIP) delivered via videoconference, the Randomized Controlled Trial (RCT) protocol, and the preliminary effectiveness of the MFIP. Methods. A mixed-methods approach nested in a pilot RCT, randomizing 54 participants 1:1 to usual care or MFIP arms, will be employed to evaluate the feasibility and preliminary effectiveness of MFIP. Qualitative and quantitative data will be collected simultaneously. Implications. Results will identify evidence for establishing protocol requirements for a full-scale RCT. Knowledge of the effectiveness of the one-to-one videoconference delivery format of the program has the potential to enhance the accessibility and the quality of care of the PD population.

Perception and Use of Compensation Strategies for Gait Impairment by Persons With Parkinson Disease.

BACKGROUND: Gait impairments are common and disabling in Parkinson's disease (PD). Applying compensation strategies helps to overcome these gait deficits. Clinical observations suggest that the efficacy of different compensation strategies varies depending on both individual patient characteristics and the context in which the strategies are applied. This has never been investigated systematically, hampering the ability of clinicians to provide a more personalized approach to gait rehabilitation. OBJECTIVE: We had three aims: (1) to evaluate patients' awareness and actual use of compensation categories for gait impairments in PD; (2) to investigate the patient-rated efficacy of the various compensation strategies, and whether this efficacy depends on the context in which the strategies are applied; and (3) to explore differences in the efficacy between subgroups based on sex, age, disease duration, freezing status, and ability to perform a dual task. METHODS: A survey was conducted among 4,324 adults with PD and self-reported disabling gait impairments. RESULTS: The main findings are: (1) compensation strategies for gait impairments are commonly used by persons with PD, but their awareness of the full spectrum of available strategies is limited; (2) the patient-rated efficacy of compensation strategies is high, but varies depending on the context in which they are applied; and (3) compensation strategies are useful for all types of PD patients, but the efficacy of the different strategies varies per person. CONCLUSIONS: The choice of compensation strategies for gait impairment in PD should be tailored to the individual patient, as well as to the context in which the strategy needs to be applied. CLASSIFICATION OF EVIDENCE: This data provides Class IV evidence that compensation strategies are an effective treatment for gait impairment in Parkinson's disease patients with gait impairment.

Perceptions of Compensation Strategies for Gait Impairments in Parkinson's Disease: A Survey Among 320 Healthcare Professionals.

Compensation strategies are an essential part of managing gait impairments in people with Parkinson's disease (PD). We conducted an online survey among 320 healthcare professionals with specific expertise in PD management, to evaluate their knowledge of compensation strategies for gait impairments in people with PD, and whether they applied these in daily practice. Only 35% of professionals was aware of all categories of compensation strategies. Importantly, just 23% actually applied all seven available categories of strategies when treating people with PD in clinical practice. We discuss the clinical implications, and provide recommendations to overcome this knowledge gap.

Applied cognitive strategy behaviours in people with parkinson's disease during daily activities: A cross-sectional study.

OBJECTIVE: To explore the use of applied cognitive strategy behaviours during performance of daily activities in people with Parkinson's disease. DESIGN: Quantitative cross-sectional design. METHODS: A total of 190 persons living at home with non-dementing Parkinson's disease were videotaped while performing a self-chosen activity in their natural environment. The videotaped performance was scored using the "Perceive, Recall, Plan and Perform System of Task Analysis" to measure: (i) performance mastery; and (ii) effective use of 34 cognitive strategy behaviours covering: attention and sensory processing (Perceive), accessing task-related knowledge (Recall), response planning and evaluation (Plan) and performance control (Perform). Mean performance mastery and a hierarchy of least to most effective applied cognitive strategy behaviours were determined for the total group and for 2 sub-groups based on disease severity. A multi-faceted Rasch model was used for data analysis. RESULTS: Mean performance mastery was 56% (standard deviation (SD) 28). Least efficient cognitive strategy behaviours were those used for planning, evaluating and controlling performance and most efficient strategies were those used for sensory discrimination and recalling factual information. More advanced disease indicated less efficient use of applied cognition. CONCLUSION: The results suggest that the efficiency of applied cognitive strategy behaviours is compromised in a certain pattern in people with Parkinson's disease, and that it declines with disease progression.

The Perceive, Recall, Plan and Perform (PRPP) system for persons with Parkinson's disease: a psychometric study.

BACKGROUND: The Perceive, Recall, Plan & Perform (PRPP) system of task analysis might be feasible to evaluate occupational performance and information processing strategies for persons with Parkinson's disease (PD). AIM: To evaluate: (1) the random error between raters (inter-rater study), (2) the random error within raters (intra-rater study), and (3) the internal consistency of the PRPP. MATERIALS AND METHODS: (1) video-recorded performance of meaningful activities of 13 Dutch persons with PD, scored independently by 38 Dutch PRPP trained occupational therapists were included in the analysis. The random error between raters was analyzed with two-way random Intraclass Correlation Coefficients (ICC). (2) Four videos were scored twice by 30 raters (6 week time interval). The random error within raters was analyzed using one-way random ICC's. (3) Internal consistency study: data of 190 persons with PD were analyzed using Cronbach's alpha (α). RESULTS: Inter-rater reliability ranged from slight to moderate (ICC= 0.06-0.43). The mean intra-rater reliability ranged from moderate to almost perfect (ICC= 0.60-0.83). Internal consistency is good (α = 0.60-0.86). CONCLUSION: The limited inter-rater reliability but adequate intra-rater reliability and internal consistency show the feasibility of the PRPP when used for persons with PD. Implications for reliable clinical use are discussed.

Physical therapy and occupational therapy in Parkinson's disease.

Current medical management is only partially effective in controlling the symptoms of Parkinson's disease. As part of comprehensive multidisciplinary care, physical therapy and occupational therapy aim to support people with Parkinson's disease in dealing with the consequences of their disease in daily activities. In this narrative review, we address the limitations that people with Parkinson's disease may encounter despite optimal medical management, and we clarify both the unique and shared approaches that physical therapists and occupational therapists can apply in treating these limitations.

The construct validity of the Dutch version of the activity card sort.

PURPOSE: Establishing construct validity of the ACS-NL in individuals with Parkinson's disease (PD). METHOD: Discriminative validity was established in 191 community-dwelling individuals with PD using an extreme groups design (Hoehn and Yahr stages 1 and 3). Convergent validity was determined by relating the performance scores of the ACS-NL to the scores of the Canadian Occupational Performance Measure (COPM) and the Parkinson's Disease Questionnaire (PDQ-39) scores, and relating ACS-NL satisfaction scores to the COPM scores and to the Utrecht Scale for Evaluation of Rehabilitation Participation (USER-P). RESULTS: The ACS-NL discriminated between individuals with PD with H&Y stages 1 and 3 (U = 524.5, Z = -5.453). ACS-NL performance scores correlated weakly with COPM scores (r = (0).19) and moderately with PDQ-39 scores (r = 0.44-0.55). The ACS-NL satisfaction scores correlated weakly with COPM scores (r = 0.23), and moderately with USER-P scores (r ≥ 0.40). CONCLUSIONS: This study contributed to the validation of the ACS-NL. The assessment enhances the possibility of monitoring participation in activities in individuals with PD. Implications for Rehabilitation The ACS-NL appears to hold good potential for use in the assessment of participation in activities in individuals with PD. The ACS-NL has added value parallel to administration of other instruments measuring participation (COPM) and quality of life (PDQ-39). This study demonstrates the capacity of the ACS to measure a unique construct of participation and helps to improve the psychometric properties and administration of the ACS-NL in practice.

A process evaluation of a home-based occupational therapy intervention for Parkinson's patients and their caregivers performed alongside a randomized controlled trial.

OBJECTIVE: To evaluate fidelity, treatment enactment and the experiences of an occupational therapy intervention in Parkinson's disease, to identify factors that affect intervention delivery and benefits. DESIGN: Mixed methods alongside a randomized controlled trial. SUBJECTS: These include 124 home-dwelling Parkinson's disease patients and their primary caregivers (recipients), and 18 occupational therapists. INTERVENTION: Ten-week home-based intervention according to the Dutch guidelines for occupational therapy in Parkinson's disease. MAIN MEASURES: Data were collected on intervention dose, protocol process, content of treatment (fidelity), offered and performed strategies (treatment enactment), and recipients' experiences. Therapists' experiences were collected through case note analyses and focus group interviews. RESULTS: Mean intervention dose was 9.3 (SD 2.3) hours. Mean protocol process adherence was high (93%; SD 9%), however the intervention did not (fully) address the goal for 268 of 617 treatment goals. Frequencies of offered and performed strategies appeared similar, apart from 'using other tools and materials' which showed a drop from 279 advised to 149 used. The recipients were satisfied overall with the intervention (mean score 8 out of 10). The therapists noted positive or negative influencing factors on both process and benefits: the research context, the socio-political healthcare context, the recipients' personal and contextual factors, and the therapists' competence. CONCLUSION: We found some prerequisite factors in equipment provision and available dose important for treatment delivery. Other elicited factors related to, or affected, the required professional competencies and tools to tailor interventions to the complexity of interacting personal and contextual factors of patients and caregivers.

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.

Efficacy of occupational therapy for patients with Parkinson's disease: a randomised controlled trial.

BACKGROUND: There is insufficient evidence to support use of occupational therapy interventions for patients with Parkinson's disease. We aimed to assess the efficacy of occupational therapy in improving daily activities of patients with Parkinson's disease. METHODS: We did a multicentre, assessor-masked, randomised controlled clinical trial in ten hospitals in nine Dutch regional networks of specialised health-care professionals (ParkinsonNet), with assessment at 3 months and 6 months. Patients with Parkinson's disease with self-reported difficulties in daily activities were included, along with their primary caregivers. Patients were randomly assigned (2:1) to the intervention or control group by a computer-generated minimisation algorithm. The intervention consisted of 10 weeks of home-based occupational therapy according to national practice guidelines; control individuals received usual care with no occupational therapy. The primary outcome was self-perceived performance in daily activities at 3 months, assessed with the Canadian Occupational Performance Measure (score 1-10). Data were analysed using linear mixed models for repeated measures (intention-to-treat principle). Assessors monitored safety by asking patients about any unusual health events during the preceding 3 months. This trial is registered with ClinicalTrials.gov, NCT01336127. FINDINGS: Between April 14, 2011, and Nov 2, 2012, 191 patients were randomly assigned to the intervention group (n=124) or the control group (n=67). 117 (94%) of 124 patients in the intervention group and 63 (94%) of 67 in the control group had a participating caregiver. At baseline, the median score on the Canadian Occupational Performance Measure was 4·3 (IQR 3·5-5·0) in the intervention group and 4·4 (3·8-5·0) in the control group. At 3 months, these scores were 5·8 (5·0-6·4) and 4·6 (4·6-6·6), respectively. The adjusted mean difference in score between groups at 3 months was in favour of the intervention group (1·2; 95% CI 0·8-1·6; p<0·0001). There were no adverse events associated with the study. INTERPRETATION: Home-based, individualised occupational therapy led to an improvement in self-perceived performance in daily activities in patients with Parkinson's disease. Further work should identify which factors related to the patient, environmental context, or therapist might predict which patients are most likely to benefit from occupational therapy. FUNDING: Prinses Beatrix Spierfonds and Parkinson Vereniging.

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.

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.

Healing care? Rehabilitation of female immigrant patients with chronic pain from a family perspective.

PURPOSE: This pilot study aimed to address the social context of rehabilitation by exploring the perspectives of family members regarding rehabilitation of female immigrant patients with a chronic pain condition. METHOD: In-depth semi-structured, face-to-face interviews were conducted with family members of nine patients. The interviews were transcribed and subsequently coded and analysed according to themes. RESULTS: All participants acknowledged that their respective relative experiences pain. Pain is considered a symptom of the malfunctioning body and different explanatory notions are given. Participants regarded medication, warmth, rest or gentle exercise to be appropriate treatment options. Most participants had limited awareness of, and involvement in, rehabilitation. The role of family members in illness management lies mainly in providing advice and in taking over or assisting in domestic activities. CONCLUSION: The importance of considering the patient's social context and involving family in the treatment process is indicated in the literature. However, awareness of the aim and content of rehabilitation was limited among most participating family members as was their involvement in the rehabilitation process of their relative. It is recommended that further research needs to look at factors influencing involvement of family members before effective strategies for involving family members of patients of various socio-economic and/or cultural backgrounds can be developed.