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View article: Incidence of HTLV-1-associated myelopathy in the UK from 1991 to 2024: a longitudinal observational cohort study
Incidence of HTLV-1-associated myelopathy in the UK from 1991 to 2024: a longitudinal observational cohort study Open
Introduction Human T-cell lymphotropic virus type 1 (HTLV-1) may cause spinal cord inflammation, leading to HTLV-1-associated myelopathy (HAM). HAM is a chronic and progressive neurological disorder that is associated with increased mortal…
View article: P23.04.A DIZZY, DODDERY AND DISCOMBOBULATED: EXPLORING SYMPTOMS OF DIZZINESS AND IMBALANCE IN VESTIBULAR SCHWANNOMA TREATABLE WITH SRS AT A TERTIARY CANCER CENTRE
P23.04.A DIZZY, DODDERY AND DISCOMBOBULATED: EXPLORING SYMPTOMS OF DIZZINESS AND IMBALANCE IN VESTIBULAR SCHWANNOMA TREATABLE WITH SRS AT A TERTIARY CANCER CENTRE Open
BACKGROUND Vestibular schwannoma (VS), a brain tumour of the vestibulocochlear nerve, causing auditory and vestibular symptoms. Dizziness and associated fatigue, cognitive changes and anxiety are shown to have the biggest impact on quality…
View article: Patient research priority setting partnership in human T‐cell lymphotropic virus type I
Patient research priority setting partnership in human T‐cell lymphotropic virus type I Open
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 spas…
View article: Delphi consensus study and clinical practice guideline development for functional electrical stimulation to support upright mobility in people with an upper motor neuron lesion
Delphi consensus study and clinical practice guideline development for functional electrical stimulation to support upright mobility in people with an upper motor neuron lesion Open
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 mot…
View article: Implementing functional electrical stimulation clinical practice guidelines to support mobility: A stakeholder consultation
Implementing functional electrical stimulation clinical practice guidelines to support mobility: A stakeholder consultation Open
Functional 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 guidel…
View article: Bulley et al Delphi study and Guideline Development Supplementary File 1 Contributors
Bulley et al Delphi study and Guideline Development Supplementary File 1 Contributors Open
This table contains a full account of people who contributed in different ways to the development of the Clinical Practice Guideline. This includes people who were actively involved in the Delphi study. The Table summarises their roles in …
View article: Supplementary File 2: Information, Consent and Topic Areas for Online Delphi Round 1 Survey
Supplementary File 2: Information, Consent and Topic Areas for Online Delphi Round 1 Survey Open
This file contains the survey content used for the first round of a Delphi Study relating to: Delphi Consensus Study and Clinical Practice Guideline Development for Functional Electrical Stimulation to support mobility in people wi…
View article: Supplementary File 3: Summary of FES Guideline Delphi Round 1 analysis
Supplementary File 3: Summary of FES Guideline Delphi Round 1 analysis Open
This file contains a summary of the analysis of the first survey in the Delphi Consensus Study. It focuses on all items that were failed to reach consensus of over 75% of Expert Panellists indicating that they ‘Agreed’ or ‘Strongly Agreed’…
View article: Supplementary File 6: FES Delphi Round 1 Analysis of the characteristics of participants who did not answer / feel qualified to answer a statement
Supplementary File 6: FES Delphi Round 1 Analysis of the characteristics of participants who did not answer / feel qualified to answer a statement Open
This file contains analysis for each statement in Delphi survey 1 of the total respondents excluding those who did not answer / feel qualified to answer and descriptions of stakeholders who did not feel qualified to answer. Analysis of pat…
View article: Supplementary File 9: FES Delphi Round 2 Results and Analysis
Supplementary File 9: FES Delphi Round 2 Results and Analysis Open
This file contains all six-point Likert scores in response to the second survey in the “Delphi Consensus Study and Clinical Practice Guideline Development for Functional Electrical Stimulation to support mobility in people with an upper mo…
View article: Supplementary File 4: FES Guideline Development Delphi Round 1 Analysis 28/10/2021
Supplementary File 4: FES Guideline Development Delphi Round 1 Analysis 28/10/2021 Open
This file contains full analysis of all items that failed to reach consensus of over 75% of Expert Panellists indicating that they ‘Agreed’ or ‘Strongly Agreed’ to the statement within the first survey in the Delphi Consensus Study. It inc…
View article: Bulley et al Delphi study and Guideline Development Supplementary File 6 Analysis of non-response Delphi Round 1
Bulley et al Delphi study and Guideline Development Supplementary File 6 Analysis of non-response Delphi Round 1 Open
This file contains analysis for each statement in Delphi survey 1 of the total respondents excluding those who did not answer / feel qualified to answer and descriptions of stakeholders who did not feel qualified to answer. Analysis of pat…
View article: Supplementary File 10: Final Statements Resulting from the Delphi Study
Supplementary File 10: Final Statements Resulting from the Delphi Study Open
This file contains all final statements that achieved consensus in the: Delphi Consensus Study and Clinical Practice Guideline Development for Functional Electrical Stimulation to support mobility in people with an upper motor neuron lesio…
View article: Bulley et al Delphi study and Guideline Development Supplementary File 3 Summary Analysis Survey 1
Bulley et al Delphi study and Guideline Development Supplementary File 3 Summary Analysis Survey 1 Open
This file contains a summary of the analysis of the first survey in the Delphi Consensus Study. It focuses on all items that were failed to reach consensus of over 75% of Expert Panellists indicating that they ‘Agreed’ or ‘Strongly Agreed’…
View article: Bulley et al Delphi study and Guideline Development Supplementary File 2 Delphi Round 1 Survey
Bulley et al Delphi study and Guideline Development Supplementary File 2 Delphi Round 1 Survey Open
This file contains the survey content used for the first round of a Delphi Study relating to: Delphi Consensus Study and Clinical Practice Guideline Development for Functional Electrical Stimulation to support mobility in people wi…
View article: Supplementary File 1: Credentials and potential conflicts of interest of contributors to development of the Clinical Practice Guideline
Supplementary File 1: Credentials and potential conflicts of interest of contributors to development of the Clinical Practice Guideline Open
This table contains a full account of people who contributed in different ways to the development of the Clinical Practice Guideline. This includes people who were actively involved in the Delphi study. The Table summarises their roles in …
View article: Bulley et al Delphi study and Guideline Development Supplementary File 5 All Likert Scores Delphi Round 1
Bulley et al Delphi study and Guideline Development Supplementary File 5 All Likert Scores Delphi Round 1 Open
This file contains all six-point Likert scores in response to the first survey in the “Delphi Consensus Study and Clinical Practice Guideline Development for Functional Electrical Stimulation to support mobility in people with an upper mot…
View article: Bulley et al Delphi study and Guideline Development Supplementary File 4 Analysis Delphi round 1
Bulley et al Delphi study and Guideline Development Supplementary File 4 Analysis Delphi round 1 Open
This file contains full analysis of all items that failed to reach consensus of over 75% of Expert Panellists indicating that they ‘Agreed’ or ‘Strongly Agreed’ to the statement within the first survey in the Delphi Consensus Study. It inc…
View article: Supplementary File 8: FES Guideline Development Delphi Round 2 Analysis 11/1/2022
Supplementary File 8: FES Guideline Development Delphi Round 2 Analysis 11/1/2022 Open
This file contains a summary of the analysis of the second survey in the Delphi Consensus Study. It focuses on all items that were included in the second survey following revision because they did not reach consensus in the first survey. A…
View article: Supplementary File 5: FES Delphi Round 1 Results and Analysis
Supplementary File 5: FES Delphi Round 1 Results and Analysis Open
This file contains all six-point Likert scores in response to the first survey in the “Delphi Consensus Study and Clinical Practice Guideline Development for Functional Electrical Stimulation to support mobility in people with an upper mot…
View article: Supplementary File 7: Information, Consent and Topic Areas for Online Delphi Round 2 Survey
Supplementary File 7: Information, Consent and Topic Areas for Online Delphi Round 2 Survey Open
This file contains the survey content used for the second round of a Delphi Study relating to: “Delphi Consensus Study and Clinical Practice Guideline Development for Functional Electrical Stimulation to support mobility in people …
View article: Supplementary File 6. FES Delphi Round 1 Analysis of the characteristics of participants who did not answer / feel qualified to answer a statement
Supplementary File 6. FES Delphi Round 1 Analysis of the characteristics of participants who did not answer / feel qualified to answer a statement Open
This file contains analysis for each statement in Delphi survey 1 of the total respondents excluding those who did not answer / feel qualified to answer and descriptions of stakeholders who did not feel qualified to answer. Analysis of pat…
View article: Development of clinical guidelines for service provision of functional electrical stimulation to support walking: mixed method exploration of stakeholder views
Development of clinical guidelines for service provision of functional electrical stimulation to support walking: mixed method exploration of stakeholder views Open
View article: A qualitative systematic review and thematic synthesis exploring the impacts of clinical academic activity by healthcare professionals outside medicine
A qualitative systematic review and thematic synthesis exploring the impacts of clinical academic activity by healthcare professionals outside medicine Open
View article: Health state utility values in people living with HTLV-1 and in patients with HAM/TSP: The impact of a neglected disease on the quality of life
Health state utility values in people living with HTLV-1 and in patients with HAM/TSP: The impact of a neglected disease on the quality of life Open
HTLV-1 and its associated neurological disease has a marked impact on QoL. This study provides robust data to support the development of cost-utility analysis of interventions for HTLV-1.
View article: Evidence of Brain Inflammation in Patients with Human T-Lymphotropic Virus Type 1–Associated Myelopathy (HAM): A Pilot, Multimodal Imaging Study Using <sup>11</sup>C-PBR28 PET, MR T1-Weighted, and Diffusion-Weighted Imaging
Evidence of Brain Inflammation in Patients with Human T-Lymphotropic Virus Type 1–Associated Myelopathy (HAM): A Pilot, Multimodal Imaging Study Using <sup>11</sup>C-PBR28 PET, MR T1-Weighted, and Diffusion-Weighted Imaging Open
This pilot study suggests that some patients with HAM have asymptomatic inflammation in the brain, which can be detected and monitored by 11C-PBR28 PET together with structural and diffusion-weighted MRI.
View article: Assessing Walking Ability in People with HTLV-1-Associated Myelopathy Using the 10 Meter Timed Walk and the 6 Minute Walk Test
Assessing Walking Ability in People with HTLV-1-Associated Myelopathy Using the 10 Meter Timed Walk and the 6 Minute Walk Test Open
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 sign…
View article: Effect of Pulsed Methylprednisolone on Pain, in Patients with HTLV-1-Associated Myelopathy
Effect of Pulsed Methylprednisolone on Pain, in Patients with HTLV-1-Associated Myelopathy Open
HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP) is an immune mediated myelopathy caused by the human T-lymphotropic virus type 1 (HTLV-1). The efficacy of treatments used for patients with HAM/TSP is uncertain. The aim …
View article: Modified Ashworth Scale testing muscle spasticity (0–72 weeks).
Modified Ashworth Scale testing muscle spasticity (0–72 weeks). Open
View article: Timed walk as primary outcome measure of treatment response in clinical trials for HTLV-1-associated myelopathy: a feasibility study
Timed walk as primary outcome measure of treatment response in clinical trials for HTLV-1-associated myelopathy: a feasibility study Open
The intra-patient variability of 10MWT is relatively small in HAM/TSP over 6 months. 10MWT is a feasible outcome measure for a clinical trial in HAM/TSP. To our knowledge, this is the first ever recommendation for the sample size required …