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A study exploring the feasibility of delivering, evaluating, and implementing a new self-management programme for people with neuromuscular diseases

ADAPT NMD: a hybrid II study of the feasibility and implementation of a self-management programme for people with neuromuscular diseases

Status
Active, not recruiting
Phases
Unknown
Study type
Interventional
Source
ISRCTN
Registry ID
ISRCTN14208138
Enrollment
60
Registered
2021-08-18
Start date
2021-09-22
Completion date
Unknown
Last updated
2026-05-25

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Neuromuscular diseases Nervous System Diseases

Interventions

The intervention will be delivered in a one-off session as part of routine therapy and nursing appointments. The intervention is designed to be woven into routine clinical appointments, it is therefor

Sponsors

University College London
Lead Sponsor

Eligibility

Sex/Gender
All
Age
18 Years to 100 Years

Inclusion criteria

Inclusion criteria: 1. New referral to the centre for neuromuscular diseases or any patient who is within 4 weeks of commencing treatment 2. Clinical diagnosis of neuromuscular disease (i.e a disease affecting either the anterior horn cell, peripheral nerves, neuromuscular junction or muscle tissue) from a consultant neurologist at the centre for neuromuscular diseases 3. Ability to follow a two-stage command 4. Over 18 years old

Exclusion criteria

Exclusion criteria: 1. Patients aged <18 years 2. Patients that do not attend clinics at Queen Square Centre for Neuromuscular Diseases or University College London Hospital 3. Patients that do not have the capacity to provide informed consent 4. Patients have competing comorbidities influencing their rehabilitation, e.g. malignant cancer 5. Patients have significant issues with their readiness to participate as judged by the clinical team, e.g. illness of a carer 6. Do not require multidisciplinary rehabilitation 7. Hearing and visual impairments precluding their ability to fully participate in NM Bridges

Design outcomes

Primary

MeasureTime frame
1. Feasibility of delivery of the NM Bridges intervention: 1.1. The acceptability of NM Bridges (to clinicians and participants) when delivered in one-off interactions, measured using qualitative interview data and administrative data 3 months after the final participant is recruited 1.2. The demand for NM Bridges within the service, measured using qualitative interview data and administrative data 3 months after the final participant is recruited 2. Feasibility of evaluation: 2.1. The acceptability and performance of candidate outcome measures, measured using quantitative analysis of the documented study outcome measures and qualitative interview data at baseline, directly after the intervention and 3 months post-intervention 2.2. Participant recruitment and retention measured using administrative data throughout the duration of the study 3. Feasibility of implementation: 3.1. The fidelity of the implementation process measured using qualitative interview data and session observation throughout the duration of the study 3.2. Intervention fidelity measured using a fidelity checklist, a sample of video-recorded clinical sessions score using a fidelity checklist, throughout the duration of the study 3.3. The acceptability of the implementation strategy package to clinicians at the specialist centre, measured using qualitative interview data and administrative data 3 months after the final participant is recruited 3.4. Barriers and facilitators to the implementation strategy package, measured using qualitative interview data and administrative data 3 months after the final participant is recruited 3.5. The appropriateness and practicability of the implementation strategy package to the specialist clinical service, measured using qualitative interview data and administrative data 3 months after the final participant is recruited 3.6. The effect of the implementation strategy package on adoption, measured using qualitative interview data and administrative data 3 months

Secondary

MeasureTime frame
1. Health-related quality of life will be measured using the EQ-5d, 2. Self-efficacy will be measured using the General Self-Efficacy Scale (GSES) 3. Mood will be measured using the General Health Questionnaire (GHQ) 4. Participation will be measured using the the Oxford Participation and Activities Questionnaire (Ox-PAQ) 5. A profile of the broad impacts of the intervention will be measured through the Health Education Impact Questionnaire (heiQ). 6. The person-centredness of the intervention will be measured through the Client-Centred Care Questionnaire (CCCQ) and the Patient Assessment of Care for Chronic Conditions (PACIC) Outcome measures will be collected at baseline, immediately after patients receive the intervention and 3 months post intervention.

Countries

England, United Kingdom

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: May 29, 2026