Real-World Evaluation of the Feasibility, Acceptability and Safety of a Remote, Self-Management Parkinson's Disease Care Pathway: A Healthcare Improvement Initiative.

BACKGROUND: There is significant unmet need for effective and efficiently delivered care for people with Parkinson's disease (PwP). We undertook a service improvement initiative to co-develop and implement a new care pathway, Home Based Care (HBC), based on supported self-management, remote monitoring and the ability to trigger a healthcare contact when needed. OBJECTIVE: To evaluate feasibility, acceptability and safety of Home Based Care. METHODS: We evaluated data from the first 100 patients on HBC for 6 months. Patient monitoring, performed at baseline and 6-monthly, comprised motor (MDS-UPDRS II and accelerometer), non-motor (NMSQ, PDSS-2, HADS) and quality of life (PDQ) measures. Care quality was audited against Parkinson's UK national audit standards. Process measures captured feasibility. Acceptability was assessed using a mixed-methods approach comprising questionnaires and semi-structured interviews. RESULTS: Between October 2019 and January 2021, 108 PwP were enrolled onto HBC, with data from 100 being available at 6 months. Over 90% of all questionnaires were returned, 97% were complete or had < 3 missing items. Reporting and communications occurred within agreed timeframes. Compared with baseline, after 6m on HBC, PD symptoms were stable; more PwP felt listened to (90% vs. 79%) and able to seek help (79% vs. 68%). HBC met 93% of national audit criteria. Key themes from the interviews included autonomy and empowerment. CONCLUSIONS: We have demonstrated acceptability, feasibility and safety of our novel remotely delivered Parkinson's care pathway. Ensuring scalability will widen its reach and realize its benefits for underserved communities, enabling formal comparisons with standard care and cost-effectiveness evaluation.

Introducing the Parkinson's KinetiGraph into Routine Parkinson's Disease Care: A 3-Year Single Centre Experience.

In an effort to provide timely clinical input for people with Parkinson's disease (PD) in the face of increasing demand and resource limitation in our UK based service, we introduced remote management in place of clinic appointment, including the use of the Parkinson's KinetiGraph (PKG™), a wrist-worn device that provides a continuous measure of movement. We evaluated our reporting methods and findings, the nature of unmet need we identified, our treatment recommendations and the degree of their implementation in our patients whose feedback guided our service developments. Our evaluation highlighted opportunities and challenges associated with incorporating digital data into care traditionally delivered via in-person contact.

Assessing lower limb position sense in stroke using the gradient discrimination test (GradDT™) and step-height discrimination test (StepDT™): a reliability and validity study.

Purpose: To evaluate the psychometric properties of two novel tests of lower limb position sense.Methods: Our newly developed tests assess the discrimination thresholds of under-foot slope and step height perception using a two alternative forced choice approach. Stroke participants (n = 32) and age matched controls (n = 32) were tested. Inter- and intra-rater reliability and agreement, sensitivity and specificity, discriminant and convergent validity were evaluated.Results: Intra-rater reliability for both variants of the gradient discrimination test was excellent; intraclass correlation coefficients (ICC) =0.91 and 0.89. The step height discrimination test had excellent intra-rater reliability and agreement: ICC =0.95. Inter-rater reliability was also excellent in both tests (ICC= 0.85-0.93). Discriminant validity was demonstrated with significant differences in test performance between stroke and control participants (p < 0.001). Our novel tests did not significantly correlate with the proprioceptive component of the Erasmus modified Nottingham Sensory Assessment. Receiver Operating Characteristic curve analysis indicated both novel tests to have greater sensitivity and specificity than the proprioceptive component of the Erasmus modified Nottingham Sensory Assessment in predicting the presence of self-reported sensory impairments. Functional reach test, 10 meter walk test, centre of pressure measurement and reported falls showed significant and moderate to strong correlations with novel test performance (r = 0.40-0.60); the Erasmus modified Nottingham Sensory Assessment did not.Conclusions: Our novel, functionally oriented tests of lower limb position sense are reliable, valid and feasible for use in an ambulatory chronic stroke and elderly population.Implications for rehabilitationThe GradDT™ and StepDT are two novel tests of lower limb position sense which are reliable and valid in a chronic stroke sample.They offer clinicians and researchers sensitive, accurate and clinically usable measures of lower limb position sense.

"A non-person to the rest of the world": experiences of social isolation amongst severely impaired people with multiple sclerosis.

Purpose: To gain insight into the experiences of, and potential solutions to, social isolation amongst severely impaired people with multiple sclerosis.Methods: A phenomenological research approach using face-to-face, in-depth semi-structured, audio-recorded interviews. Data were transcribed and analyzed thematically.Results: Sixteen severely impaired people with multiple sclerosis were interviewed (Expanded Disability Status Scale >6.5); aged 38-72 years, nine female, time since diagnosis ranged 3-30 years). Four key themes were generated in line with the study objectives, each with further sub-themes. The themes were (1) Definitions of isolation (2) Causes of isolation (3) Impact of isolation, and (4) Potential eases of isolation.Conclusions: Data portrayed social isolation as complex and multi-factorial in its definitions, its causes, and its impact. Isolation is not just about being lonely or left on one's own, but represents a spiral of impacts. Physical deterioration can lead to reduced choice and control regarding access to, and interaction with others and society, affecting personal identity. Sometimes this leads to further self-isolation. Personalised psychosocial support, with improved ease of access, focused on helping people with severe multiple sclerosis regain a sense of self and their place in the world may ease social isolation.Implications for rehabilitationPeople with severe multiple sclerosis can experience a sense of powerlessness, a lack of choice and control over daily life, leading to changes in self-identity and social isolation.Peoples' experiences are very personal, and any approach to help deal with social isolation needs to be based in considering how to think positively about how life can be lived and how to make that work.Multiple sclerosis support groups should not be assumed to alleviate feelings of social isolation.Interventions should focus on personalized psychosocial input aimed at helping the person with multiple sclerosis regain a sense of self and their place in the world.

Lower Limb Somatosensory Discrimination Is Impaired in People With Parkinson's Disease: Novel Assessment and Associations With Balance, Gait, and Falls.

BACKGROUND: People with Parkinson's disease (PD) have often compromised walking and balance. This may be the result of the impaired lower limb tactile and proprioceptive sensation. Existing clinical measures may not be sufficiently sensitive to uncover these sensory impairments. OBJECTIVE: To determine whether novel measures of lower limb somatosensory discrimination are psychometrically robust and associated with mobility outcomes in people with PD. METHODS: Lower limb somatosensation was assessed on 2 occasions, 3 to 7 days apart, using the following 3 novel tests: gradient discrimination, roughness discrimination, and step height discrimination. Static and dynamic balance (Brief Balance Evaluations Systems Test), falls incidence, falls confidence (Falls Efficacy Scale), and gait (speed and step length) were also obtained. The participants were 27 people with PD and 27 healthy controls. RESULTS: Novel tests showed good to excellent intrarater reliability (intraclass correlation coefficient = 0.72-0.92). Significantly higher gradient and step height discrimination thresholds (P < 0.01) were demonstrated in the participants with PD when compared with the healthy controls, indicating worse position sense at the ankle, knee, and hip. Significant correlations were identified between gradient discrimination and falls incidence (r = 0.55), falls confidence (r = 0.44), and balance (r = 0.63), but not gait (r = 0.21). Step height discrimination was significantly correlated with balance (r = 0.54). Foot roughness discrimination was not significantly different between people with PD and healthy controls and was not significantly correlated with mobility measures (P > .05). CONCLUSION: These novel tests are psychometrically robust and identify impaired lower limb position sense, which was associated with balance and falls in this sample of PD patients. Interventions targeting somatosensory processing in PD may improve aspects of balance and reduce falls risk. Further research is warranted.

Assessing Plantar Sensation in the Foot Using the Foot Roughness Discrimination Test (FoRDT): A Reliability and Validity Study in Stroke.

BACKGROUND: The plantar foot represents a sensory dynamometric map and is essential for balance and gait control. Sensory impairments are common, yet often difficult to quantify in neurological conditions, particularly stroke. A functionally oriented and quantifiable assessment, the Foot Roughness Discrimination Test (FoRDT), was developed to address these shortcomings. OBJECTIVE: To evaluate inter- and intrarater reliability, convergent and discriminant validity of the FoRDT. DESIGN: Test-retest design. SETTING: Hospital outpatient. PARTICIPANTS: Thirty-two people with stroke (mean age 70 years) at least 3 months after stroke, and 32 healthy, age-matched controls (mean age 70). MAIN OUTCOME MEASURES: Roughness discrimination thresholds were quantified utilizing acrylic foot plates, laser cut to produce graded spatial gratings. Stroke participants were tested on three occasions, and by two different raters. Inter- and intrarater reliability and agreement were evaluated with Intraclass Correlation Coefficients and Bland-Altman plots. Convergent validity was evaluated through Spearman rank correlation coefficients (rho) between the FoRDT and the Erasmus modified Nottingham Sensory Assessment (EmNSA). RESULTS: Intra- and interrater reliability and agreement were excellent (ICC =0.86 [95% CI 0.72-0.92] and 0.90 [95% CI 0.76-0.96]). Discriminant validity was demonstrated through significant differences in FoRDT between stroke and control participants (P < .001). Stroke fallers had statistically significant higher FoRDT scores compared with nonfallers (P = .01). Convergent validity was demonstrated through significant and strong correlations (rho) with the Erasmus MC Nottingham Sensory Assessment (r = .69, P < .01). Receiver operator characteristic curve analysis indicated the novel test to have excellent sensitivity and specificity in predicting the presence of self-reported sensory impairments. Functional Reach test significantly correlated with FoRDT (r = .62, P < .01) whereas measures of postural sway and gait speed did not (r = .16-.26, P > .05). CONCLUSIONS: This simple and functionally oriented test of plantar sensation is reliable, valid, and clinically feasible for use in an ambulatory, chronic stroke and older population. It offers clinicians and researchers a sensitive and robust sensory measure and may further support the evaluation of rehabilitation targeting foot sensation. LEVEL OF EVIDENCE: III.

Evaluation of the Multiple Sclerosis Spasticity Scale 88: A Short Report.

BACKGROUND: The Multiple Sclerosis Spasticity Scale 88 (MSSS-88) is designed to capture the patient experience and impact of spasticity, but there is limited evaluation against clinician-rated measures of spasticity. OBJECTIVE: To evaluate the convergent validity and responsiveness of the MSSS-88. DESIGN: Longitudinal study. SETTING: University Laboratory. SUBJECTS: Thirty-four people with multiple sclerosis. METHODS: People with multiple sclerosis (MS; n = 34) completed the self-reported 12-item Multiple Sclerosis Walking Scale, Multiple Sclerosis Spasticity Scale, Barthel Index alongside the clinician-rated Ashworth Scale, and a laboratory-based measure of ankle spasticity. Spasticity measure responsiveness was evaluated in 20 participants at two time points, an average of 8.75 ± 3.8 months apart. RESULTS: In people with MS (mean age 55.1 ± 8.1 years; Expanded Disability Scale range 4.5-7.0), spasticity symptom specific subscales of the MSSS-88 (stiffness and spasms) showed strong and significant correlations with the clinician-rated Ashworth Scale (r = 0.52-0.53; P < .01). Responsiveness of the MSSS-88 was comparable to a laboratory-based measure of ankle spasticity. CONCLUSIONS: Our findings lend additional support to the convergent validity of this measure.

The prevalence, distribution, and functional importance of lower limb somatosensory impairments in chronic stroke survivors: a cross sectional observational study.

Purpose: To investigate the prevalence and distribution of lower limb somatosensory impairments in community dwelling chronic stroke survivors and examine the association between somatosensory impairments and walking, balance, and falls. Methods: Using a cross sectional observational design, measures of somatosensation (Erasmus MC modifications to the (revised) Nottingham Sensory Assessment), walking ability (10 m walk test, Walking Impact Scale, Timed "Get up and go"), balance (Functional Reach Test and Centre of Force velocity), and falls (reported incidence and Falls Efficacy Scale-International), were obtained. Results: Complete somatosensory data was obtained for 163 ambulatory chronic stroke survivors with a mean (SD) age 67(12) years and mean (SD) time since stroke 29 (46) months. Overall, 56% (n = 92/163) were impaired in the most affected lower limb in one or more sensory modality; 18% (n = 30/163) had impairment of exteroceptive sensation (light touch, pressure, and pin-prick), 55% (n = 90/163) had impairment of sharp-blunt discrimination, and 19% (n = 31/163) proprioceptive impairment. Distal regions of toes and foot were more frequently impaired than proximal regions (shin and thigh). Distal proprioception was significantly correlated with falls incidence (r = 0.25; p < 0.01), and centre of force velocity (r = 0.22, p < 0.01). The Walking Impact Scale was the only variable that significantly contributed to a predictive model of falls accounting for 15-20% of the variance. Conclusion: Lower limb somatosensory impairments are present in the majority of chronic stroke survivors and differ widely across modalities. Deficits of foot and ankle proprioception are most strongly associated with, but not predictive, of reported falls. The relative contribution of lower limb somatosensory impairments to mobility in chronic stroke survivors appears limited. Further investigation, particularly with regard to community mobility and falls, is warranted. Implications for Rehabilitation Somatosensory impairments in the lower limb were present in approximately half of this cohort of chronic stroke survivors. Tactile discrimination is commonly impaired; clinicians should include an assessment of discriminative ability. Deficits of foot and ankle proprioception are most strongly associated with reported falls. Understanding post-stroke lower limb somatosensory impairments may help inform therapeutic strategies that aim to maximise long-term participation, minimise disability, and reduce falls.

Foot and ankle impairments affect balance and mobility in stroke (FAiMiS): the views and experiences of people with stroke.

PURPOSE: To explore the nature and impact of foot and ankle impairments on mobility and balance in community-dwelling, chronic stroke survivors. METHODS: A qualitative research design using face to face semi-structured, audio recorded interviews. Thirteen community-dwelling stroke survivors, all of whom had self-reported foot and ankle impairments, were interviewed (female n = 6, mean age = 67 years, SD = 12 years, mean time since stroke = 4 years, SD = 6 years, right stroke n = 7, left stroke n = 6). A framework analysis approach was used to analyse and interpret transcribed interviews. RESULTS: Three themes emerged: (1) Impact. The influence of foot and ankle impairments on mobility and balance. (2) Standing out. How participants felt they "stood out" because of their impairments and wanted to be normal. (3) Help. The specific help and advice participants received in managing their problems. CONCLUSIONS: Foot and ankle impairments such as pain, altered somatosensory input and weakness significantly contribute to problems with community ambulation, balance and fear of falling in people with chronic stroke. Specific foot and ankle impairments may also negatively contribute to perceptions of physical appearance and self-esteem. Therapeutic management approaches within clinical practice appear to focus mostly on the gross performance of the lower limb with little emphasis on the specific assessment or treatment of the foot or ankle. IMPLICATIONS FOR REHABILITATION: Foot pain, sensory impairments and muscle weakness in the foot and ankle can impact on community ambulation, balance and fear of falling following stroke. Foot and ankle function post-stroke should be routinely assessed and monitored. Clinicians should be aware of the potentially distressing negative perceptions associated with altered gait patterns, footwear and orthotic use.