Evidence map›Paper›PMID 36805758›Full record

ArticleTrials2023

Digital peer-to-peer support programme for informal caregivers of people living with motor neuron disease: study protocol for a multi-centre parallel group, single-blinded (outcome assessor) randomised controlled superiority trial.

Louise Rose, Thilipan Thaventhiran, Esther Hobson, Rebecca Rogers, Kirsty James, Petrina Chu, Ben Carter, Christina Faull, Sian Saha, Jeong Su Lee and 3 more

Registry-linked trialOpen access · goldAbstract readClinical Trial Protocol
In one paragraph

Article in Trials, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04695210 (A Virtual Peer-to-peer Support Programme for Family Caregivers of Individuals With Motor Neurone Disease at Risk of Becoming or Currently Technology-dependent), which is not on this map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
1.9field-weighted citation impact, top 16% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT04695210 nacompletednot on this map

A Virtual Peer-to-peer Support Programme for Family Caregivers of Individuals With Motor Neurone Disease at Risk of Becoming or Currently Technology-dependent: Randomised Controlled Trial

TypeinterventionalSponsorKing's College LondonRan2022 to 2026Enrolled149ConditionsMotor Neuron Disease, Amyotrophic Lateral SclerosisArmsVirtual peer-to-peer support
3 · Its place in the literature

Who cites it

4 citing papers in PubMed, 6 citations in OpenAlex.

  1. Trial
  2. Trial
  3. Article
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors at 4 institutions in 1 country.

Louise RoseFlorence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, James Clerk Maxwell Building, London, SE1 8WA, United Kingdom. louise.rose@kcl.ac.uk.ORCID http://orcid.org/0000-0003-1700-3972
Thilipan ThaventhiranFlorence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, James Clerk Maxwell Building, London, SE1 8WA, United Kingdom.
Esther HobsonSheffield Institute for Translational Neuroscience, University of Sheffield, 385a Glossop Rd, Sheffield, S102HQ, United Kingdom.
Rebecca RogersFlorence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, James Clerk Maxwell Building, London, SE1 8WA, United Kingdom.
Kirsty JamesDepartment of Biostatistics and Health Informatics, Institute of Psychiatry, King's College London, Psychology & NeuroscienceDe Crespigny Park, London, SE5 8AF, United Kingdom.
Petrina ChuDepartment of Biostatistics and Health Informatics, Institute of Psychiatry, King's College London, Psychology & NeuroscienceDe Crespigny Park, London, SE5 8AF, United Kingdom.
Ben CarterDepartment of Biostatistics and Health Informatics, Institute of Psychiatry, King's College London, Psychology & NeuroscienceDe Crespigny Park, London, SE5 8AF, United Kingdom.
Christina FaullLOROS Hospice, Groby Rd, Leicester, LE39QE, United Kingdom.
Sian SahaKing's College Hospital, Denmark Hill, London, SE59RS, United Kingdom.
Jeong Su LeeLane Fox Respiratory Service, Guy's and St Thomas' NHS Foundation Trust, Westminster Bridge Rd, London, SE17HE, United Kingdom.
Georgios KaltsakasLane Fox Respiratory Service, Guy's and St Thomas' NHS Foundation Trust, Westminster Bridge Rd, London, SE17HE, United Kingdom.
Christopher McDermottSheffield Institute for Translational Neuroscience, University of Sheffield, 385a Glossop Rd, Sheffield, S102HQ, United Kingdom.
Michelle RamsayLane Fox Respiratory Service, Guy's and St Thomas' NHS Foundation Trust, Westminster Bridge Rd, London, SE17HE, United Kingdom.
King's College London · GBGuy's and St Thomas' NHS Foundation Trust · GBUniversity of Sheffield · GBKing's College Hospital · GB

Funding

Marie Curie MC-19-908
6 · The paper itself

Abstract

backgroundPeer support is effective in improving psychological well-being of family caregivers of people with conditions such as dementia, cancer, and brain injury. However, there are limited data on effective psychological interventions for family caregivers of people living with motor neurone disease. Our objective is to evaluate the efficacy of a virtual peer support programme for improving caregiver psychological wellbeing and caregiving related outcomes.

methodsWe will conduct a multi-centre parallel group randomised controlled superiority trial. Using a multi-modal recruitment strategy, we will recruit informal caregivers from UK MND clinics, in-patient units, and hospices. We will randomise (1:1, stratified by gender) participants to either a 12-week virtual peer support programme or usual care comprising provision of online information resources publicly available via the MND Association website. Peer support programme elements will be delivered via a secure digital e-platform aTouchAway™ (Aetonix, Canada). Our target sample size is 160 (80 each arm). Our primary outcome is the Hospital Anxiety and Depression Scale (HADS) assessed at 12 weeks (primary endpoint). Secondary outcomes that will also be assessed at 12 weeks include the Zarit Burden Interview, Pearlin Mastery Scale, Personal Gain Scale, Positive Affect Scale, and the Brief COPE. Outcome assessors will be blinded to allocation. Tertiary outcomes include perceived usability (1 item 9-point Likert scale) and acceptability (semi-structured qualitative interviews) of the peer support programme. Intervention fidelity measures will comprise frequency, type (text, audio, video), and duration (audio and video) of peer support contact downloaded from the aTouchAway AWS server. We will use a mixed-effects linear model to test the effect of the intervention on the primary outcome. Secondary outcomes will be analysed using linear regression. We have ethical approval (21/NW/0269) from the North-West Research Ethics Committee, UK. DISCUSSION: This single-blinded randomised controlled trial will determine the effect of a virtual peer support programme on caregiver psychological wellbeing and caregiver burden. This study will examine the impact of a virtual peer support intervention on quality-of-life measures in informal caregivers of individuals with MND living in the community.

trial registrationClinicalTrials.gov: NCT04695210.

Indexed as

Brain InjuriesMotor Neuron DiseaseCanadaCaregiversEquivalence Trials as TopicEthics Committees, ResearchHumansMulticenter Studies as TopicRandomized Controlled Trials as TopicAmyotrophic lateral sclerosise-HealthInformal caregiverMotor neuron diseasePeer supportRandomised controlled trial

Identifiers

PMID36805758
PMCPMC9940323
OpenAlexW4321375906

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.