Implementing functional electrical stimulation clinical practice guidelines to support mobility: A stakeholder consultation

From Frontiers via Jisc Publications RouterHistory: received 2022-10-05, collection 2023, accepted 2023-01-09, epub 2023-01-26Peer reviewed: TrueAcknowledgements: Acknowledgments: The International Functional Electrical Stimulation Society (IFESS) and the Association of Chartered Physiotherapists interested in Neurology (ACPIN) are acknowledged for support in setting up workshops and encouraging participation from their members.Publication status: PublishedFunctional Electrical Stimulation (FES) has been used to support mobility for people with upper motor neuron conditions such as stroke and multiple sclerosis for over 25 years. Recent development and publication of clinical practice guidelines (CPGs) provide evidence to guide clinical decision making for application of FES to improve mobility. Understanding key barriers to the implementation of these CPGs is a critical initial step necessary to create tailored knowledge translation strategies. A public involvement and engagement consultation was conducted with international stakeholders including researchers, clinicians and engineers working with FES to inform implementation strategies for CPG use internationally. Reflexive thematic analysis of the consultation transcripts revealed themes including inconsistent use of CPGs, barriers to implementation such as limited access to FES and low clinician confidence, and the need for a tiered education approach with ongoing support. Insights derived from this consultation will inform the development of knowledge translation strategies to support the next steps to implementing FES use for mobility.pubpu

Ciclosporin A Proof of Concept Study in Patients with Active, Progressive HTLV-1 Associated Myelopathy/Tropical Spastic Paraparesis

HTLV-1 is a retrovirus transmitted through body fluids that is commonly seen in the West Indies, South America and Southern Japan but rarely in the UK. Although most patients remain healthy carriers, HTLV-1 causes serious conditions such as adult T cell leukaemia/lymphoma (ATLL) and HTLV-1-associated myelopathy/Tropical Spastic Paraparesis (HAM/TSP). The infection which is life-long cannot be eradicated and treatments for the associated diseases are limited. We report the encouraging findings of the first UK Medical Research Council funded treatment study for patients with early and/or deteriorating HAM/TSP. Treatment with ciclosporin A, a drug commonly used to dampen the immune system in transplant patients, was investigated. Symptoms and signs of disease, particularly low back pain and muscle stiffness, improved by week 24 and in some patients this improvement persisted after the 48 weeks of treatment, at least to the end of the study at week 72. Most striking was the finding that the amount of HTLV-1 in the fluid around the spinal cord, called cerebrospinal fluid, was reduced during treatment. These findings justify the further study of ciclosporin A in patients with HAM/TSP

Assessing Walking Ability in People with HTLV-1-Associated Myelopathy Using the 10 Meter Timed Walk and the 6 Minute Walk Test

Five to ten million persons, are infected by HTLV-1 of which 3% will develop HTLV-1-associated myelopathy (HAM) a chronic, disabling inflammation of the spinal cord. Walking, a fundamental, complex, multi-functional task is demanding of multiple body systems. Restricted walking ability compromises activity and participation levels in people with HAM (pwHAM). Therapy aims to improve mobility but validated measures are required to assess change.Prospective observational study.To explore walking capacity in pwHAM, walking endurance using the 6 minute walk (6MW), and gait speed, using the timed 10m walk (10mTW).Out-patient setting in an inner London Teaching hospital.Prospective documentation of 10mTW and 6MW distance; walking aid usage and pain scores measured twice, a median of 18 months apart.Data analysis was completed for twenty-six pwHAM, (8♂; 18♀; median age: 57.8 years; median disease duration: 8 years). Median time at baseline to: complete 10m was 17.5 seconds, versus 21.4 seconds at follow up; 23% completed the 6MW compared to 42% at follow up and a median distance of 55m was covered compared to 71m at follow up. Using the 10mTW velocity to predict the 6MW distance, overestimated the distance walked in 6 minutes (p<0.01). Functional decline over time was captured using the functional ambulation categories.The 10mTW velocity underestimated the degree of disability. Gait speed usefully predicts functional domains, shows direction of functional change and comparison with published healthy age matched controls show that these patients have significantly slower gait speeds. The measured differences over 18 months were sufficient to reliably detect change and therefore these assessments can be useful to detect improvement or deterioration within broader disability grades. Walking capacity in pwHAM should be measured using the 10mTW for gait speed and the 6MW for endurance

Functional Categories.

<p>Functional Categories.</p

Descriptive Data Analysis of all 26 individuals.

<p>Descriptive Data Analysis of all 26 individuals.</p

Functional Ambulation Categories.

<p>Functional Ambulation Categories.</p

Correlation Analysis at the 2 time points (N = 26).

<p>Correlation Analysis at the 2 time points (N = 26).</p

Delphi Consensus Study and Clinical Practice Guideline Development for Functional Electrical Stimulation to support upright mobility in people with an upper motor neuron lesion

From Crossref journal articles via Jisc Publications RouterHistory: received 2023-02-13, accepted 2023-06-28, epub 2023-07-11, issued 2023-07-11, published 2023-07-11Article version: VoRPublication status: PublishedCathy Bulley - ORCID: 0000-0001-8338-5388 https://orcid.org/0000-0001-8338-5388Eleanor Curnow - ORCID: 0000-0001-9332-8248 https://orcid.org/0000-0001-9332-8248Marietta van der Linden - ORCID: 0000-0003-2256-6673 https://orcid.org/0000-0003-2256-6673Item is not available in this repository.Purpose A Clinical Practice Guideline (CPG) is required to provide guidance on optimal service delivery for Functional Electrical Stimulation (FES) to support upright mobility in people living with mobility difficulties due to an upper motor neuron lesion, such as stroke or multiple sclerosis. A modified Delphi consensus study was used to provide expert consensus on best practice. Methods A Steering Group supported recruitment of an Expert Panel which included a range of stakeholders who participated in up to three survey rounds. In each round panellists were asked to rate their agreement of draft statements about best practice using a 6-point Likert scale and add free text to explain their answer. Statements that achieved over 75% agree/strongly agree on the Likert scale were included in the CPG. Those that did not were revised based on free text comments and proposed in the next survey round. Results The first round included 82 statements with seven sub-statements. 65 people (84% response rate) completed survey round 1 leading to 62 statements and four sub-statements being accepted. Fifty-six people responded to survey round 2, and consensus was achieved for all remaining statements. Conclusion The accepted statements are included within the CPG and provide recommendations about who can benefit from FES and how they can be optimally supported through FES service provision. As such the CPG will support advocacy for, and optimal design of, FES services.inpressinpres

Patient research priority setting partnership in human T-cell lymphotropic virus type I

Abstract Introduction Human T‐cell lymphotropic virus type 1 (HTLV‐1) is a chronic infection affecting 5–10 million people worldwide. Ten percent develop HTLV‐1‐associated diseases, and 3%–5% develop HTLV‐1‐associated myelopathy (HAM)/tropical spastic paraparesis. Low health‐related quality of life (HRQoL) is a significant concern for those with HTLV‐1, and little is known about how it impacts daily life or what patients need from healthcare services. To address this, we report on patient involvement workshops aimed at identifying research priorities for HTLV‐1 health service provision. Methods Participants recruited through HTLV‐1 clinics in England attended six 90‐min virtual workshops over 10 months, and two 60‐min consolidation workshops. Content developed iteratively from topic focussed group discussions. All workshops were video‐recorded with consent, transcribed verbatim and thematically analysed. Using consensus voting rounds, participants individually ranked their top six and then collectively their top three research priorities from the themes inferred from the analysis. A final feedback session explored the experiences of participating in the workshops. Findings Twenty‐seven people with HTLV‐1 engaged with the workshops with up to 22 participants attending each meeting. The majority were diagnosed with HAM (n = 22). The top three research priorities were identified as understanding disease progression, psychosocial wellbeing, and information and knowledge. Participants valued being asked to set research priorities that directly addressed their needs and enjoyed the workshops. They stressed the importance of patient advocates for promoting research that positively impacts everyday life. Conclusion This is the first of this type of research engagement with people with HTLV‐1 in the United Kingdom. Participants identified several avenues of investigation that could lead to improvements in healthcare services and HRQoL. Participants believed the workshops signified the start of a conversation to progress person‐centred and meaningful research in HTLV‐1. Patient or Public Contribution People living with HTLV‐1 were involved in the iterative design, conduct, analysis, writing and dissemination of this project through the patient involvement workshops. As a result of this engagement, a patient led advisory group has been set up to assist with the dissemination of the findings