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

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

"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

Ensuring young voices are heard in core outcome set development: international workshops with 70 children and young people.

Plain english summaryResearchers test treatments to ensure these work and are safe. They do this by studying the effects that treatments have on patients by measuring outcomes, such as pain and quality of life. Often research teams measure different outcomes even though each team is studying the same condition. This makes it hard to compare the findings from different studies and it can reduce the accuracy of the treatment advice available to patients. Increasingly, researchers are tackling this problem by developing 'core outcome sets'. These are lists of outcomes that all researchers working on a given condition should measure in their studies. It is important that patients have a voice in the development of core outcome sets and children and young people are no exception. But their voices have rarely been heard when core outcome sets are developed. Researchers are trying to address this problem and make sure that core outcome sets are developed in ways that are suitable for children and young people. As a first step, we held two international workshops with children and young people to listen to their views. They emphasised the importance of motivating young people to participate in developing core outcome sets, making them feel valued, and making the development process more interactive, enjoyable and convenient. We hope this commentary will encourage researchers to include children and young people when developing core outcome sets and to adapt their methods so these are suitable for young participants. Future research is important to examine whether these adaptations are effective.AbstractBackground Different research teams looking at treatments for the same condition often select and measure inconsistent treatment outcomes. This makes it difficult to synthesise the results of different studies, leads to selective outcome reporting and impairs the quality of evidence about treatments. 'Core outcome sets' (COS) can help to address these problems. A COS is an agreed, minimum list of outcomes that researchers are encouraged to consistently measure and report in their studies. Including children and young people (CYP) as participants in the development of COS for paediatric conditions ensures that clinically meaningful outcomes are measured and reported. However, few published COS have included CYP as participants. COS developers have described difficulties in recruiting and retaining CYP and there is a lack of guidance on optimising COS methods for them. We aimed to explore CYP's views on the methods used to develop COS and identify ways to optimise these methods.Main body This commentary summarises discussions during two workshops with approximately 70 CYP (aged 10-18 years old) at the International Children's Advisory Network Research and Advocacy Summit, 2018. Delegates described what might motivate them to participate in a COS study, including feeling valued, understanding the need for COS and the importance of input from CYP in their development, and financial and other incentives (e.g. certificates of participation). For Delphi surveys, delegates suggested that lists of outcomes should be as brief as possible, and that scoring and feedback methods should be simplified. For consensus meetings, delegates advised preparing CYP in advance, supporting them during meetings (e.g. via mentors) and favoured arrangements whereby CYP could meet separately from parents and other stakeholders. Overall, they wanted COS methods that were convenient, enjoyable and engaging.Conclusion This commentary points to the limitations of the methods currently used to develop COS with CYP. It also points to ways to motivate CYP to participate in COS studies and to enhancements of methods to make participation more engaging for CYP. Pending much needed research on COS methods for CYP, the perspectives offered in the workshops should help teams developing COS in paediatrics and child health

Core Outcome Set-STAndards for Reporting The COS-STAR Statement

Background Core outcome sets (COS) can enhance the relevance of research by ensuring that outcomes of importance to health service users and other people making choices about health care in a particular topic area are measured routinely. Over 200 COS to date have been developed, but the clarity of these reports is suboptimal. COS studies will not achieve their goal if reports of COS are not complete and transparent. Methods and Findings In recognition of these issues, an international group that included experienced COS developers, methodologists, journal editors, potential users of COS (clinical trialists, systematic reviewers, and clinical guideline developers), and patient representatives developed the Core Outcome Set–STAndards for Reporting (COS-STAR) Statement as a reporting guideline for COS studies. The developmental process consisted of an initial reporting item generation stage and a two-round Delphi survey involving nearly 200 participants representing key stakeholder groups, followed by a consensus meeting. The COS-STAR Statement consists of a checklist of 18 items considered essential for transparent and complete reporting in all COS studies. The checklist items focus on the introduction, methods, results, and discussion section of a manuscript describing the development of a particular COS. A limitation of the COS-STAR Statement is that it was developed without representative views of low- and middle-income countries. COS have equal relevance to studies conducted in these areas, and, subsequently, this guideline may need to evolve over time to encompass any additional challenges from developing COS in these areas. Conclusions With many ongoing COS studies underway, the COS-STAR Statement should be a helpful resource to improve the reporting of COS studies for the benefit of all COS users

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 &lt; 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