Co-production with people with Parkinson's disease: making physical activity effective, meaningful and sustainable.

The tide is turning: service users are challenging the traditional bio-medical model, which focusses on illness treatment and neglects the role of patients in the provision of care. “We want person-centred care: people having as much control and influence over their care as possible – as patients, carers and members of communities” is the mission statement of National Voices. Formed in England in 2008 from an alliance of 150 health and social care charities, the purpose of the alliance is to provide a forum for stakeholder involvement of service users and carers in developing national policy. In the ongoing battle against Parkinson’s disease, establishing the needs of people with this often debilitating and long term condition, and collaborating as equal partners to design appropriate physical activity interventions is essential. Doing so may go some way to ensuring this valuable intervention is fun, engaging and, most importantly, effective

Repeatability of plantar pressure assessment during barefoot walking in people with stroke

Stroke-related changes in foot structure and function affect balance and mobility and quantifying foot function following stroke could offer clinically useful information to inform rehabilitation. The aim of this work was to explore the feasibility of undertaking plantar pressure assessment during barefoot walking in people with stroke, and evaluate the repeatability of the assessment protocol and regional footprint analysis as a measure of dynamic foot characteristics

"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 rehabilitation People 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

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

Publisher’s embargo period: Embargo set on 01.03.2019 by SR (TIS).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 rehabilitation The 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

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.</jats:p

Adipose Tissue Fatty Acid Patterns and Changes in Anthropometry: A Cohort Study

INTRODUCTION: Diets rich in n-3 long chain polyunsaturated fatty acids (LC-PUFA), but low in n-6 LC-PUFA and 18:1 trans-fatty acids (TFA), may lower the risk of overweight and obesity. These fatty acids have often been investigated individually. We explored associations between global patterns in adipose tissue fatty acids and changes in anthropometry. METHODS: 34 fatty acid species from adipose tissue biopsies were determined in a random sample of 1100 men and women from a Danish cohort study. We used sex-specific principal component analysis and multiple linear regression to investigate the associations of adipose tissue fatty acid patterns with changes in weight, waist circumference (WC), and WC controlled for changes in body mass index (WC(BMI)), adjusting for confounders. RESULTS: 7 principal components were extracted for each sex, explaining 77.6% and 78.3% of fatty acid variation in men and women, respectively. Fatty acid patterns with high levels of TFA tended to be positively associated with changes in weight and WC for both sexes. Patterns with high levels of n-6 LC-PUFA tended to be negatively associated with changes in weight and WC in men, and positively associated in women. Associations with patterns with high levels of n-3 LC-PUFA were dependent on the context of the rest of the fatty acid pattern. CONCLUSIONS: Adipose tissue fatty acid patterns with high levels of TFA may be linked to weight gain, but patterns with high n-3 LC-PUFA did not appear to be linked to weight loss. Associations depended on characteristics of the rest of the pattern