Motor neurone disease with behavioural symptoms Nervous System Diseases
Conditions
Interventions
The new online intervention comprises modules that:
(1) target symptoms identified in the screening/baseline assessments
(2) suggest which strategies the person with MND and carer would benefit from
(3) utilise these techniques during each week.
In addition, (4) if the HCP of the person with MND has also been trained, they will demonstrate those techniques for the carers during consultations.
E
Sponsors
University of East Anglia
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Participants will be family carers, relatives, or live-in professional carers of: 1. Patients with a diagnosis of MND with cognitive impairment or behavioural impairment, based on Strong et al. (2017) diagnostic criteria, or 2. Patients with a diagnosis of MND-FTD based on Strong et al. (2017) diagnostic criteria; 3. Carers will have at least 14 hours of contact with the person with MND per week and be willing to participate in research activities. Carers must be aged 18 years or over
Exclusion criteria
Exclusion criteria: Inability to read or communicate in English (with or without support)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Feasibility of the MiNDToolkit online intervention in MND Specialist Settings measured using: 1. Recruitment, eligibility, and attrition: Numbers of potentially eligible patients who meet the inclusion criteria, Number of participants subsequently recruited into the study, rates and reasons for refusal, numbers ineligible, reasons for ineligibility, attrition rate, and reasons for withdrawing throughout the study. Timepoint: During the trial recruitment phase 2. Resources needed to complete the online MiNDToolkit: length of time carers spend on modules per week, length of time required for HCPs to provide online and ‘face-to face’ (e.g. could be via online appointments) feedback per participant, and the amount and nature of feedback provided 3. Carer adherence to MiNDToolkit: records of access and engagement with online MiNDToolkit (number of modules accessed; how long; contacts with HCPs). Timepoint: During the intervention phase and post-intervention phase 4. Carer acceptability: aspects of the MiNDToolkit that carers found helpful and unhelpful, satisfaction with the intervention and HCP interactions, and reasons for withdrawing from the MiNDToolkit. Timepoint: During the intervention phase and post-intervention phase 5. Therapist acceptability: satisfaction with training and supervision evaluated through qualitative interviews at the end of the study, and intervention fidelity monitored through their online notes, entered directly in the platform, and weekly drop in sessions offered | — |
Secondary
| Measure | Time frame |
|---|---|
| Current secondary outcome measures as of 26/11/2021: Measured at baseline, and post-intervention at 3 months. 1. Severity of depression for the carer measured using The Patient Health Questionnaire 9 (PHQ-9) 2. Generalized anxiety disorder for the carer measured using The Generalized Anxiety Disorder Questionnaire 7 (GAD-7) 3. Services and supports currently being utilised by the patient measured using The Adapted Client Service Receipt Inventory (CSRI) 4. Caring experience measured using The Carer Experience Scale (CES) 5. Wellbeing for the carer measured using ICEpop CAPability measure for Adults (ICECAP-A) 6. Psychological flexibility via the Acceptance and Action Questionnaire (AAQ) Previous secondary outcome measures: Measured at baseline, and post-intervention at 3 months. 1. Severity of depression for the carer measured using The Patient Health Questionnaire 9 (PHQ-9) 2. Generalized anxiety disorder for the carer measured using The Generalized Anxiety Disorder Questionnaire 7 (GAD-7) 3. Services and supports currently being utilised by the patient measured using The Adapted Client Service Receipt Inventory (CSRI) 4. Caring experience measured using The Carer Experience Scale (CES) 5. Wellbeing for the carer measured using ICEpop CAPability measure for Adults (ICECAP-A) | — |
Countries
England, United Kingdom, Wales
Outcome results
None listed