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.

Online monitoring of focal spasticity treatment with botulinum toxin in people with chronic stroke or hereditary spastic paraplegia: a feasibility study.

OBJECTIVE: To investigate the feasibility and usability of an online spasticity monitoring tool amongst people with hereditary spastic paraplegia or chronic stroke receiving botulinum toxin treatment, and their healthcare providers. METHODS: Mixed methods cohort study, measuring recruitment success and adherence to the monitoring in 3 rehabilitation institutions. In addition, the System Usability Scale (SUS) and interviews with patients and their healthcare providers were used for quantitative and qualitative analysis, respectively. A deductive directed content analysis was used for qualitative evaluation. RESULTS: Of the 19 persons with hereditary spastic paraplegia and 24 with stroke who enrolled in the study, recruitment success and adherence were higher amongst people with hereditary spastic paraplegia compared with stroke. Usability was found "marginal" by rehabilitation physicians and "good" by patients and physical therapists (SUS scores 69, 76, and 83, respectively). According to all participant groups, online monitoring potentially contributes to spasticity management if it is tailored to the actual needs and capabilities of patients, and if it can easily be integrated into the daily/working routines of all users. CONCLUSION: Online monitoring of spasticity in people with hereditary spastic paraplegia or stroke receiving treatment with botulinum toxin may be feasible, provided that the monitoring tool is tailored to the needs of all users.

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.

Experienced Respiratory Symptoms and the Impact on Daily Life from the Perspective of People with Parkinson's Disease: A Grounded Theory.

BACKGROUND: Abnormal respiratory function tests can be observed early in the course of Parkinson's disease (PD). A better understanding of the impact of respiratory dysfunction on daily life in PD is needed to prevent later occurring complications as a (aspiration) pneumonia. OBJECTIVE: To explain which respiratory symptoms people with PD or a form of atypical parkinsonism experience and how these symptoms impact on their daily lives. METHODS: This qualitative study used a grounded theory approach. A purposeful sample strategy was used to capture information-rich cases. Data were collected in semi-structured interviews with participants diagnosed with either PD (n = 11) or atypical parkinsonism (n = 3), all of whom had confirmed respiratory symptoms. Data were analyzed using grounded theory analysis by creating codes, categories, theoretical themes, and, ultimately, a conceptual model. RESULTS: Four respiratory profiles emerged, describing different types of respiratory dysfunction, with various positive and negative influencing factors. First, a loss of breathing automatism was experienced. Second, episodes of breathlessness or a rapid, shallow breathing pattern were triggered by either physical exertion, fatigue, or postural deformities. Third, stress and anxiety also triggered episodes of breathlessness. Fourth, a decreased cough strength and frequent coughing. Based on these findings, we constructed a conceptual model that visualizes the relations between these four types of respiratory dysfunction and their impact on daily life, with 'discomfort' and 'avoidance of social activities' as crucial elements. CONCLUSION: A tailored approach for each profile of respiratory dysfunction is recommended to improve respiratory dysfunction and to reduce its social impact in people with PD.

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

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

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.

Experienced consequences of spasticity and effects of botulinum toxin injections: a qualitative study amongst patients with disabling spasticity after stroke.

PURPOSE: Chronic spasticity poses a major burden on patients after stroke. Intramuscular botulinum toxin injections constitute an important part of the treatment for patients suffering from troublesome focal spasticity. This study explores the experienced consequences of chronic spasticity amongst patients after stroke regarding physical impairments and activities, the experienced effects of botulinum toxin treatment on these domains, and whether current spasticity management addresses patients' needs. MATERIALS AND METHODS: Fourteen participants with chronic spasticity after stroke who were treated with cyclical botulinum toxin injections in the upper and/or lower extremity muscles were interviewed. Inductive thematic analysis generated representative themes. RESULTS: Analyses of the interviews revealed three themes: (1) spasticity-related impairments and activity limitations; (2) fluctuations in spasticity related to botulinum toxin; (3) need for professional support and feedback. Besides motor impairments, participants experienced activity limitations in many domains of everyday life, with considerable day-to-day fluctuations. Moreover, treatment with botulinum toxin led to cyclical fluctuations in spasticity-related symptoms, which differed across participants. The participants called for shared responsibility for treatment, particularly regarding optimising the timing of injections. CONCLUSION: Incorporating patient-relevant outcomes into the current assessment of spasticity and monitoring these outcomes may improve spasticity management, particularly regarding the timing of botulinum toxin injections.Implications for rehabilitationBecause chronic spasticity after stroke impacts on almost all domains of everyday life, professionals should identify and target the most relevant problems in each individual patient.Monitoring patient-reported outcomes may help patients and professionals to get insight in the fluctuations of spasticity-related symptoms and may help to evaluate the effects of botulinum toxin injections from the patient's perspective.Patient education and providing insight in the fluctuations of spasticity-related symptoms may support self-management and shared decision-making in spasticity management.

Biphasic (Subtherapeutic) Levodopa-Induced Respiratory Dysfunction in Parkinson Disease.

OBJECTIVE: To evaluate 3 cases illustrating a rarely recognized phenotype of Parkinson disease (PD), namely, biphasic levodopa-induced respiratory dysfunction manifesting as dyspnea. METHODS: To appreciate the nature of the fluctuations of respiratory function in response to levodopa, we measured changes in respiratory muscle control before and after the best therapeutic response to levodopa in 3 PD patients with fluctuating dyspnea. RESULTS: Episodes of breathlessness were accompanied by shallow tachypnea and reduced respiratory muscle control, as measured by maximal expiratory pressure, peak cough flow, and forced expiratory volume in 1 second. CONCLUSIONS: The spectrum of respiratory dysfunction in PD includes a biphasic reduced respiratory muscle control accompanying periods when the effect of levodopa is subtherapeutic. This biphasic levodopa-related complication represents a rarely recognized nonmotor phenomenon in PD. Management requires increasing the levodopa dose, shortening the interdose interval, or implementing a program of continuous dopaminergic stimulation.

Healthcare needs, expectations, utilization, and experienced treatment effects in patients with hereditary spastic paraplegia: a web-based survey in the Netherlands.

BACKGROUND: We aimed to identify healthcare needs, expectations, utilization, and the experienced treatment effects in a population of Dutch patients with hereditary spastic paraplegia (HSP). METHODS: We distributed an online questionnaire among 194 adult persons with HSP in the Netherlands, of which 166 returned a fully completed version. After applying predefined exclusion criteria, 109 questionnaires from persons with pure HSP were analysed. RESULTS: Healthcare needs and expectations were primarily focused on the relief of muscle stiffness and reduction of balance and gait impairments (65-80%), but many participants also expressed needs regarding relief of non-motor symptoms (e.g. pain, fatigue), emotional problems, impaired sleep and self-care capacity, and participation problems (> 60%). Remarkably, despite these frequent needs, relatively few participants (< 33%) expected to be able to improve in these additional domains. Rehabilitation physicians and physiotherapists were more frequently consulted than neurologists and occupational therapists, respectively. Physiotherapy was the most often proposed non-pharmacological intervention (85%), followed by orthopedic footwear (55%) and splints (28%). Approximately one third of the participants was never offered any pharmacological (spasmolytic) treatment. Spasmolytic oral drugs, injections, and intrathecal baclofen were given to 41%, 26%, and 5% of the participants, respectively. Independent of the type of pharmacological intervention, 35-46% of these participants experienced decreased spastiticy and improved general fitness. Other experienced effects differed per type of intervention. CONCLUSIONS: Based on this web-based survey in the Netherlands, there seems to be ample room for improvement to meet and attune the healthcare needs and expectations of people with HSP concerning both their motor and non-motor symptoms and functional limitations. In addition, the provision of adequate information about non-pharmacological and pharmacological interventions seems to be insufficient for many patients to allow shared decision making. These conclusions warrant a more pro-active attitude of healthcare providers as well as an interdisciplinary approach for a substantial proportion of the HSP population, also involving professionals with a primary occupational and/or psychosocial orientation.

The ParkinsonNet concept: development, implementation and initial experience.

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

The ParkinsonNet trial: design and baseline characteristics.

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

Why People With Parkinson's Disease Experience Near-Drowning-and How to Prevent It.

View Supplementary Video S1 View Supplementary Video S2 View Supplementary Video S3.

The Effects of Respiratory Training in Parkinson's Disease: A Systematic Review.

BACKGROUND: Signs of respiratory dysfunction can be present already early in the course of Parkinson's disease (PD). Respiratory training could alleviate this, but its effectiveness is not well understood. OBJECTIVE: The purpose of this systematic review is to review the efficacy of different respiratory training interventions in PD. METHODS: A search strategy was performed in four databases: PubMed, Physiotherapy Evidence Database (PEDro), Cochrane Library, and Cumulative Index to Nursing and Allied Health Literature (CINAHL). Methodological quality of original full-text articles was assessed using the Cochrane Risk of Bias tool for randomized controlled trials (RCTs) and the Risk Of Bias In Non-randomized Studies of Interventions (ROBINS-I) tool for the controlled trials (CTs). Levels of evidence were rated by the Grading of Recommendation Assessment, Development and Evaluation (GRADE) approach. RESULTS: Six papers reporting on four randomized controlled trials and another four controlled trials were included. Positive effects were reported for inspiratory muscle strength training (IMST), expiratory muscle strength training (EMST), air stacking, breath-stacking, incentive spirometry and postural training on respiratory muscle strength, swallowing safety, phonatory aspects and chest wall volumes. Best methodological quality was found for breath-stacking and incentive spirometry. Best levels of evidence were found for EMST, IMST and EMST plus air stacking. CONCLUSION: Respiratory training shows positive effects and should be considered when people with PD experience respiratory dysfunction. Future studies should focus on standardizing both training devices, instruments to measure outcomes and intervention protocols to further increase the level of evidence.

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.

Stumbling, struggling, and shame due to spasticity: a qualitative study of adult persons with hereditary spastic paraplegia.

Purpose: Little is known concerning the impact of chronic spasticity on physical activities, social participation, and well-being, and whether patients' needs are addressed by current treatments. This study aims to investigate these lacunas in persons with a pure form of hereditary spastic paraplegia (HSP), in whom spasticity is a prominent symptom.Methods: Fourteen patients with a pure form of HSP were interviewed. These interviews were recorded, verbally transcribed, and thematically analyzed.Results: Four themes were identified which can be reflected by the phrases: (1) 'I stumble', (2) 'I struggle', (3) 'I feel ashamed', and (4) 'I need support'. Balance and gait problems led to limitations in domestic activities, employment, and recreation. 'Stumbling' also occurred due to pain, stiffness, and fatigue. Struggling was related to the continuous need for adaptation strategies, including the abandonment of some activities. Participants further reported feelings of shame, fear, and frustration. Lastly, they needed more support in daily activities than currently provided.Conclusion: Besides treating spasticity-related motor impairments, patients with HSP need practical support for optimizing their physical activities and social participation. They also seek attention for the non-motor consequences of their chronic spasticity to improve their well-being. Patient-reported outcomes might help to address these needs.Implications for rehabilitationAccording to patients with hereditary spastic paraplegia, interventions for spasticity should not only be aimed at reducing motor impairments, but also on reducing pain and fatigue, improving nighttime rest and general well-being, and optimizing the performance of relevant personal activities.Medical, role and emotional management in patients with hereditary spastic paraplegia can be improved only when individual needs are identified and monitored over the course of the disease.Besides assessment of bodily functions and physical capacities, systematic evaluation of patient-reported outcomes will help both patients and professionals to monitor the functional impact of disease progression and to evaluate the effects of interventions aimed at retarding this progression.

Physical therapy in Parkinson's disease: evolution and future challenges.

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

Allied health care in Parkinson's disease: referral, consultation, and professional expertise.

There is evidence for the efficacy of allied health care in Parkinson's disease (PD). However, barriers exist that hamper implementation of evidence into daily practice. We conducted a survey to investigate: (1) to what extent PD patients currently utilize allied health care for relevant problems in the core areas of allied health care and (2) the level of PD-specific expertise among allied health professionals. Questionnaires were sent to 260 patients and 297 allied health professionals. Referral rates were 63% for physical therapy, 9% for occupational therapy, and 14% for speech therapy. PD patients with problems that can potentially be alleviated by input from allied health professionals are often not being referred. Furthermore, most patients were treated by allied health professionals who lacked PD-specific expertise. Current referral to and delivery of allied health care in PD are suboptimal. Evidence-based guidelines for allied health care in PD and active implementation of these guidelines are needed.

Clinimetrics of freezing of gait.

The clinical assessment of freezing of gait (FOG) provides great challenges. Patients often do not realize what FOG really is. Assessing FOG is further complicated by the episodic, unpredictable, and variable presentation, as well as the complex relationship with medication. Here, we provide some practical recommendations for a standardized clinical approach. During history taking, presence of FOG is best ascertained by asking about the characteristic feeling of "being glued to the floor." Detection of FOG is greatly facilitated by demonstrating what FOG actually looks like, not only to the patient but also to the spouse or other carer. History taking further focuses on the specific circumstances that provoke FOG and on its severity, preferably using standardized questionnaires. Physical examination should be done both during the ON and OFF state, to judge the influence of treatment. Evaluation includes a dedicated "gait trajectory" that features specific triggers to elicit FOG (gait initiation; a narrow passage; dual tasking; and rapid 360 degrees axial turns in both directions). Evaluating the response to external cues has diagnostic importance, and helps to determine possible therapeutic interventions. Because of the tight interplay between FOG and mental functions, the evaluation must include cognitive testing (mainly frontal executive functions) and judgment of mood. Neuroimaging is required for most patients in order to detect underlying pathology, in particular lesions of the frontal lobe or their connections to the basal ganglia. Various quantitative gait assessments have been proposed, but these methods have not proven value for clinical practice.

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

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