A Delphi Panel of People With Parkinson's Disease Regarding Responsibility: Toward a Preliminary Taxonomy.

IMPORTANCE: A sense of agency is associated with complex occupation-related responsibilities. A taxonomy can guide clinicians in enhancing responsibility in patients with Parkinson's disease (PwPD). OBJECTIVE: To (1) discover levels of responsibility in occupations for PwPD and (2) propose a taxonomy for occupations. DESIGN: A two-round Delphi study with PwPD and a one-round Delphi study with international experts. SETTING: Electronic survey. PARTICIPANTS: PwPD (N = 75) and international experts (N = 8). OUTCOMES AND MEASURES: PwPD expressed their levels of an inherent sense of responsibility for each occupation (1 = very low responsibility, 5 = very high responsibility). International experts rated their level of agreement (5 = strongly agree, 1 = strongly disagree) with each dimension of the taxonomy. A consensus was determined to have been reached if the interquartile range was ≤1 and 70% agreement in two adjacent categories was achieved. RESULTS: Thirty-three occupation categories were deemed as having very high to moderate responsibility for PwPD. Consequences of actions and the presence of others made up the two-dimensional responsibility taxonomy. Occupations have more challenging responsibility characteristics when they are performed with free choice, a level of high physical effort, alone, and with moral consequences. CONCLUSIONS AND RELEVANCE: This study yielded the first consensus among PwPD regarding responsibility in occupations as well as a classification system for charting the complexity of responsibility in occupations. The occupation list we have created can be beneficial to health care professionals when providing interventions or conducting outcome assessments. Plain-Language Summary: When planning interventions for patients with Parkinson's disease, it can be helpful for clinicians to be aware of patients' perspectives regarding their sense of responsibility to perform occupations. The use of a systematic sequence of challenging occupations with responsibility attributes ranging from less complex to more complex can help enhance patient occupational participation.

A comparison of the effects of occupation-based interventions with and without responsibility feedback and conventional interventions on participation in people with idiopathic Parkinson's disease: study protocol for a randomized controlled trial.

BACKGROUND: Parkinson's disease (PD) is a neurodegenerative disorder with debilitating motor and non-motor symptoms which affect participation in meaningful occupations. Occupation-based interventions can improve participation in people with PD. Evidence for incorporating structured and intensive occupational therapy by considering the concept of responsibility is lacking for this population. This trial will compare the effects of occupation-based interventions with and without responsibility feedback and conventional interventions on participation in people with idiopathic PD. METHODS: A total of 45 people with PD, between 35 and 85 years old and Hoehn and Yahr stages between I to III, will be recruited from movement disorder centers for this three-armed study. Participants will be randomized into three groups (occupation-based interventions with responsibility feedback, occupation-based interventions without responsibility feedback, and conventional interventions). All participants will receive intervention for 24 sessions during a period of 12 weeks (2 sessions per week). The primary outcome measure will be participation satisfaction. Participation frequency and restriction, self-perceived performance, performance satisfaction, motivation, volition, sense of agency, responsibility, physical activity, community integration, activities of daily living (ADL), instrumental ADL, upper extremity function, balance, fatigue, and quality of life will be measured as secondary outcome measures. All outcomes will be measured at baseline, session 9, session 17, post-intervention (week 13), and follow-up (week 25). DISCUSSION: This home-based high-intensity, structured, client-centered, and occupation-based intervention will be conducted by utilizing the concept of responsibility. This proposed trial may result in enhanced participation that would benefit other motor and non-motor symptoms in people living with PD. Findings from this proposed study are expected to expand the knowledge of clinicians and help them in evidence-based decision-making processes. TRIAL REGISTRATION: Iranian Registry of Clinical Trials IRCT20140304016830N13. Registered on August 19, 2022.

Consensus on Feedback Statements That Create Responsibility Among People With Parkinson's Disease: A Delphi Study.

IMPORTANCE: Sense of agency is associated with a sense of responsibility, which is essential to performing goal-directed occupations. OBJECTIVE: To reach consensus on a set of extrinsic feedback statements that have the potential to create a sense of responsibility among patients with neurological disorders in the course of performing daily or social occupations. DESIGN: Anonymous Delphi study with two rounds with international experts and one round with Irani patients with Parkinson's disease (PD). SETTING: Electronic survey. PARTICIPANTS: One hundred experts and 73 patients with idiopathic PD. OUTCOMES AND MEASURES: Experts and patients anonymously rated (5 = strongly agree/very effective, 4 = agree/effective, 3 = neither agree nor disagree/uncertain, 2 = disagree/ineffective, 1 = strongly disagree/very ineffective) their level of agreement with each survey statement and the effectiveness of each statement in creating a sense of responsibility in the course of performing daily or social occupations. Consensus was set as an interquartile range of ≤1 and ≥70% agreement in two adjacent categories of a Likert scale. RESULTS: In the experts' first round, consensus was reached on the level of agreement and effectiveness of 18 statements. In the second round, final consensus was achieved on all statements. In the one patient round, patients reached consensus on all statements. Finally, 34 statements were rated as 4 or 5 in terms of agreement and effectiveness, based on the opinions of experts and patients. CONCLUSIONS AND RELEVANCE: This study has produced a collection of feedback statements that might be useful in occupation-based interventions. What This Article Adds: Extrinsic responsibility feedback delivered while administering occupation-based interventions may increase volition, motivation, and engagement.

Occupations to Enhance Responsibility Among Patients With Parkinson's Disease: An International Delphi Study.

IMPORTANCE: The ability to perform voluntary actions is disrupted in Parkinson's disease (PD). Voluntary activities play a critical role in generating sense of agency, which underpins the concept of responsibility for people's daily occupations and their outcomes. According to this concept, the dearth of research regarding the concept of responsibility in rehabilitation hampers practitioners in delivering evidence-based care. OBJECTIVE: To generate a list of occupations that enhance an inherent sense of responsibility among people with PD that is based on consensus among experts. DESIGN: An anonymous and iterative Delphi study with two rounds. SETTING: Electronic survey. PARTICIPANTS: One hundred sixteen experts participated in the first round of the study, and 95 participated in the second round. OUTCOMES AND MEASURES: Panelists rated the level of inherent responsibility in each occupation and the importance of types of patient-related information on a 5-point Likert scale. Consensus was defined as reaching an interquartile range of >1. RESULTS: In the first round, consensus was reached on 19 occupations and all 38 types of patient-related information. Also, an additional 15 occupations and 16 types of patient-related information were added to the lists. Consensus was reached for all occupations and patient-related information presented in the second round. CONCLUSIONS AND RELEVANCE: Our results indicate that 61 occupations were deemed to enhance a moderate to a very high inherent sense of responsibility among people with PD. In addition, a wide range of patient-related information is considered very important or important while these occupation-focused interventions are delivered. What This Article Adds: Subjective knowledge of one's actions and their consequences lies behind people's daily occupations. Considering this knowledge when administering occupation-focused interventions can be beneficial for individuals with PD.

Validation and diagnostic accuracy of coin rotation task for manual dexterity and coordination in children with specific learning disorder.

BACKGROUND: This study aimed at determining validity, reliability, and diagnostic accuracy of Coin Rotation Task (CRT) in assessing manual dexterity and coordination of children with specific learning disorder (SLD). METHODS: In this non-experimental cross-sectional study, 120 children (typically developing children = 60, children with SLD = 60, mean age ± SD =9.18 ± 0.55) were recruited. Test-retest reliability and construct validity of CRT were assessed. Multivariate regression analysis was performed on CRT scores by considering age and gender as covariates and children with SLD with mild dexterity impairment and severe dexterity impairment (SDI) as outcome variables. Receiver-operating characteristics (ROC) curve analysis was carried out to derive validity parameters. RESULTS: Test-retest reliability of the CRT scores in both subtests were excellent in children with SLD (ICC2,1: 0.93-0.95) and good to excellent in typically developing children (ICC2,1: 0.72-0.82). Acceptable construct validity of CRT was also found. The CRT cut-off points were 23 (sensitivity= 89.29%, specificity= 70.37%) and 28 (sensitivity= 80.33%, specificity= 86.36%) for discriminating children with SLD and SDI from typically developing children in dominant and non-dominant hand, respectively. CONCLUSIONS: The present study indicated good to excellent test-retest reliability, acceptable validity, and high diagnostic accuracy for diagnosing children with SLD based on their dexterity impairment level.Implications for RehabilitationThe Coin Rotation Task (CRT) was modified and validated for use in children.The CRT is a reliable and valid tool with high diagnostic accuracy.The CRT has a good ability for discriminating children with specific learning disorder with severe dexterity impairment form typically developing children.Treatment plans and research designs can be performed by using this valid, reliable, and easy to administer tool.

Psychometric features of brief pain inventory for Parkinson's disease during medication states.

PURPOSE: Patients with idiopathic Parkinson's disease (PD) suffer from different non-motor symptoms, including pain. The present study aimed to measure the psychometric properties of the Brief Pain Inventory (BPI) in patients with PD during ON- and OFF-states. METHODS: We recruited 460 patients with PD and 100 non-PD controls. The pain was assessed by the BPI, King's Parkinson's disease Pain Scale (KPPS), Neuropathic Pain Symptom Inventory (NPSI), Visual Analogue Scale-Pain (VAS-pain), and short-form McGill Pain Questionnaire-2 (SF-MPQ-2) in both medication states. Internal consistency and test-retest reliability was examined using Cronbach's alpha coefficient and intra-class correlation coefficient (ICC). Dimensionality and convergent validity of BPI were also investigated. Diagnostic accuracy and discriminative validity were determined by Receiver Operating Characteristics (ROC) curve analysis and Area Under the Curve (AUC). RESULTS: Cronbach's alpha was satisfactory (α = 0.91-0.97) in both states. The ICC values were 0.85-0.96 in ON- and OFF-state. Factor analysis revealed two factors. A high correlation was obtained between BPI subscales and other scales. AUC >0.91, sensitivity, and specificity> 0.77 were observed for discriminating different pain levels. Furthermore, appropriate diagnostic accuracy was found (AUC, sensitivity, and specificity >0.67) between non-PD control and PD patients. CONCLUSION: The BPI has acceptable psychometric features as well as diagnostic accuracy for patients with PD.Implications for rehabilitationPain as a non-motor symptom in PD can affect daily and social activities.The BPI is used to assess pain severity and interference in activities.For better treatment, pain should be assessed in off-state like to on-state.BPI has satisfactory reliability and validity in different medication states in PD.

Validity and Reliability of the Persian Version of Parkinson's Disease Sleep Scale-2.

OBJECTIVE: Sleep problems are nonmotor symptoms in Parkinson's disease that should be carefully evaluated for better management and treatment. Parkinson's Disease Sleep Scale (PDSS-2) is one of the most reliable tools for measuring sleep difficulties in people with Parkinson's disease. This study investigated the psychometric properties of the Persian version of PDSS-2. METHODS: Four hundred and fifty-six people with Parkinson's disease with a mean age ±standard deviation of 60.7 ± 11.3 years were engaged in this study. Acceptability was assessed by floor and ceiling effects. Dimensionality was measured by exploratory factor analysis. The convergent validity of PDSS-2 with the Hospital Anxiety and Depression Scale (HADS) was assessed. Internal consistency and test-retest reliability were assessed with Cronbach's alpha and intraclass correlation coefficient (ICC), respectively. RESULTS: No noticeable ceiling and floor effect was detected. The dimensionality analysis showed three factors. A high correlation was obtained between PDSS-2 and HADS (anxiety subscale). Excellent internal consistency with α = 0.94, and good test-retest reliability with ICC = 0.89 were obtained. CONCLUSION: This study showed that the Persian version of Parkinson's Disease Sleep Scale has acceptable validity and reliability for measuring sleep disturbances in people with Parkinson's disease.

Clinimetrics of the Freezing of Gait Questionnaire for Parkinson Disease During the "off" State.

INTRODUCTION: Freezing of gait, a common PD motor symptom, could increase the risk of falling. This study aimed to investigate the clinimetric attributes of the Freezing of Gait Questionnaire (FOGQ) for people with Parkinson disease in the "off" state. METHODS: A total of 115 patients with Parkinson disease (PD; mean age, 60.25 years) were included. Acceptability, internal consistency (by the Cronbach alpha, and test-retest by Intraclass Correlation [ICC]), and reliability of the Persian-translated version of the FOGQ were examined. Dimensionality was estimated by Exploratory Factor Analysis (EFA). Fall efficacy scale-international, unified Parkinson disease rating scale-II, Berg balance scale, functional reach test, and Parkinson disease questionnaire-39 were applied to determine the convergent validity. Diagnostic accuracy for obtaining optimal cutoff point, separating faller and non-faller groups, was analyzed by Receiver Operating Characteristics (ROC) curve analysis and Area Under the Curve (AUC). All tests were carried out in an "off" state. RESULTS: The Cronbach alpha was high (α=0.92). The test-retest showed high reliability (ICC=0.89). The FOGQ was unidimensional according to the EFA and had acceptable convergent validity with moderate to high correlation with other clinical scales. The optimal cutoff point to discriminate fallers from non-fallers during the "off" state was 9/10, with an AUC of 0.92. CONCLUSION: Our results suggest that the FOGQ has appropriate reliability, validity, and discriminative ability for measuring FOG in patients with PD during the "off" state.

Anxiety and cognitive load affect upper limb motor control in Parkinson's disease during medication phases.

Anxiety is among the most debilitating nonmotor symptoms of Parkinson's disease (PD). This study aimed to determine how PD patients with low and high levels of anxiety (LA-PD and HA-PD, respectively) compare with age- and sex-matched controls at the level of motor control of reach-to-grasp movements during single- and dual-task conditions with varying complexity. Reach-to-grasp movement kinematics were assessed in 20 LA-PD, 20 HA-PD, and 20 sex- and age-matched healthy controls under single- as well as easy and difficult dual-task conditions. Assessment of PD patients was performed during both the on- and off-drug phases. The results obtained during dual-task conditions reveal deficits in both reach and grasp components for all three groups (e.g., decreased peak velocity and delayed maximum hand opening). However, these deficits were significantly greater in the PD groups, especially in the HA-PD group. Although dopaminergic medication improved reach kinematics, it had no effect on grasp kinematics. The results of our study indicated that high levels of anxiety may enhance the inefficiency of upper limb motor control in PD patients, especially during high demanding cognitive conditions, and should, therefore, be considered in the assessment and planning of interventions for upper limb function in these patients.

Falls Efficacy Scale and Single Item Question: Screening Accuracy for Older Adults Residing in Nursing Homes.

Objectives: The Falls Efficacy Scale (FES) has been developed to evaluate self-efficacy in avoiding falling during Basic Activities of Daily Living (BADL) and Single Item Question (SIQ) evaluates fear of falling (FOF) by asking a single question. These tools have some pros and cons, therefore, the present study aimed to evaluate and compare screening accuracy of Falls Efficacy Scale (FES) and Single Item Question (SIQ) in measuring FOF for older adults.Methods: A total of 100 older adult residents of nursing homes (males: N = 63) were evaluated with Falls Efficacy Scale-International (FES-I), FES, and SIQ via interview. Cutoff points and validity parameters were calculated for the FES and SIQ by using FES-I as a criterion measure.Results: In a moderate FOF threshold, the sensitivity rate of 81.82% and 43.18% were obtained for FES and SIQ, respectively. High sensitivity and specificity rate were obtained for both FES (sensitivity and specificity: 100%) and SIQ (sensitivity: 94.44%; specificity: 90%) in severe FOF threshold.Conclusions: The results of this study indicated that, compared to the SIQ, the FES is a better tool to identify FOF in both moderate and severe thresholds in first screening.Clinical Implications: The FES is a valid and sensitive tool to identify FOF in older adults.

The Persian Handwriting Assessment Tool for Primary School-Aged Children: Further Validation.

BACKGROUND: Handwriting problems are one of the common problems among students in the early years of education. The current study aimed to determine further validation aspects of the Persian Handwriting Assessment Tool (PHAT) in primary school-aged children. METHODS: The current methodological study was conducted on 452 healthy 8-10-year-old students in Tehran, Iran, selected via random cluster sampling method. Inclusion criteria were native Persian-speaking and no documented physical and mental impairments. Construct and structural validities were established by exploratory factor analysis (EFA) using principal axis factoring with Promax rotation and confirmatory factor analysis (CFA), respectively. Criterion validity was examined by expert opinion as the gold standard using Pearson correlation test. Internal consistency, test-retest, and inter-rater reliability were examined using Cronbach's alpha and intra-class correlation (ICC). Test-retest had a seven-day interval. RESULTS: The EFA results indicated two separate factors in the copying and dictation domains. Speed and orthographic error and size were considered as separate items. The CFA confirmed the factor structure. Criterion validity revealed low to moderate correlation (formation: 0.548, P<0.001; 0.503, P<0.001, spacing: 0.553, P<0.001; 0.307, P=0.030, alignment: 0.442, P<0.001; 0.358, P=0.011, size: -0.376, P=0.007; -0.445, P<0.001, and slant: 0.360, P=0.010; 0.372, P=0.008) in copying and dictation domain, respectively. Acceptable internal consistency (Cronbach's alpha: 0.72-0.99), excellent test-retest (ICC: 0.76-0.99), excellent inter-rater reliability between teachers (ICC: 0.86-0.95), and good to excellent inter-rater reliability between teachers and the occupational therapist (ICC: 0.60-0.95) were reported. CONCLUSION: The results indicated that the PHAT was a valid and reliable tool for assessing handwriting in primary school-aged children.

Barthel Index and modified Rankin Scale: Psychometric properties during medication phases in idiopathic Parkinson disease.

BACKGROUND: Independence in activities of daily living (ADL) is one of the most important aspects in planning treatment for people with Parkinson disease (PD). The Barthel Index (BI) and modified Rankin Scale (mRS) are commonly used in neurological diseases. OBJECTIVE: This study was conducted to confirm the validity and reliability of the BI and mRS in PD during ON and OFF medication phases. METHODS: We included 260 individuals with a diagnosis of idiopathic PD. The disability in ADL was measured by the BI, mRS, Parkinson's Disease Questionnaire-39 (PDQ-39), Unified Parkinson Disease Rating Scale-Activities of Daily Living (UPDRS-ADL), and Schwab and England ADL scale (SE). Test-retest, inter-rater reliability, and internal consistency were assessed by the intra-class correlation (ICC) and Cronbach α coefficients. Dimensionality was evaluated by factor analysis. Convergent validity was assessed by the SE, Berg Balance Scale (BBS), PDQ-39 and UPDRS-ADL. RESULTS: For the 260 participants (187 [71.9%] males; mean [SD] age 60.3 [12.3] years), both the BI and mRS achieved an acceptable level of test-retest and inter-rater reliability (ICC=0.77 to 0.91) in ON and OFF medication phases. The Cronbach α for BI was 0.85 and 0.88, respectively. We found 1 and 2 factors for BI in ON and OFF phases, respectively. Investigation of convergent validity showed moderate to high correlation for the BI with the UPDRS-ADL, SE, PDQ-39 (ADL), BBS and mRS scores in ON and OFF phases (ρ=0.51-0.74) and mRS with SE, UPDRS-ADL, PDQ-39 (ADL) and BBS scores (ρ=0.48-0.82). CONCLUSION: The BI and mRS showed acceptable validity and reliability to measure the degree of disability in patients with PD in daily activities in both ON and OFF medication phases.