Evidence map›Paper›PMID 29716660›Full record

Trial reportBMC psychology2018

A blended psychosocial support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: protocol of a randomized controlled trial.

Jessica de Wit, Anita Beelen, Constance H C Drossaert, Ruud Kolijn, Leonard H van den Berg, Johanna M A Visser-Meily, Carin D Schröder

Open access · goldAbstract readRandomized Controlled Trial
In one paragraph

Trial report in BMC psychology, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
1.0field-weighted citation impact, top 24% 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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed, 11 citations in OpenAlex.

  1. Trial
  2. Associations influencing quality of life in caregivers of patients with amyotrophic lateral sclerosis: a stress-process model approach.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Article
  3. Article
  4. Article
  5. Article
  6. Review
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

7 authors at 5 institutions in 2 countries.

Jessica de WitCenter of Excellence in Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht, Utrecht University and De Hoogstraat Rehabilitation, Utrecht, the Netherlands.
Anita BeelenDepartment of Rehabilitation, Academic Medical Center Amsterdam, Amsterdam, The Netherlands.
Constance H C DrossaertDepartment of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands.
Ruud KolijnPatient Association ALS Patients Connected, Rotterdam, The Netherlands.
Leonard H van den BergDepartment of Neurology, Brain Center Rudolf Magnus, University Medical Center Utrecht, Utrecht, The Netherlands.
Johanna M A Visser-MeilyCenter of Excellence in Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht, Utrecht University and De Hoogstraat Rehabilitation, Utrecht, the Netherlands.
Carin D SchröderCenter of Excellence in Rehabilitation Medicine, Brain Center Rudolf Magnus, University Medical Center Utrecht, Utrecht University and De Hoogstraat Rehabilitation, Utrecht, the Netherlands. C.P.Schroder-4@umcutrecht.nl.
University Medical Center Utrecht · NLAcademic Medical Center · NLCancer Genomics Centre · NLUniversity of Twente · NLUtrecht University · NL

Funding

The Netherlands ALS Foundation 2014-27
6 · The paper itself

Abstract

backgroundInformal caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) or Progressive Muscular Atrophy (PMA) face stressful demands due to severe impairments and prospect of early death of the patients they care for. Caregivers often experience feelings of psychological distress and caregiver burden, but supportive interventions are lacking. The objective of this study is to investigate the effectiveness of a psychosocial support program aimed at enhancing feelings of control over caregiving tasks and reducing psychological distress. This support program is based on an existing program for adult partners of people with cancer and is adapted to meet the needs of ALS caregivers.

methodsThis study is a randomized controlled trial using a wait-list control design. One hundred and forty caregiver-patient dyads, recruited from a nationwide database and through the website of the Dutch ALS Center, will be either randomized to a support program or a wait-list control group. The blended intervention is based on Acceptance and Commitment Therapy and consists of 1 face-to-face contact, 6 online guided modules and 1 telephone contact. The intervention can be worked through in 8 weeks. The effectiveness and the participants' satisfaction with the intervention will be evaluated using a mixed method design. Caregivers and patients will be asked to fill in questionnaires on 4 occasions during the study: baseline, 3 months, 6 months and 9 months. The main study outcome is the psychological distress of the caregiver assessed with the Hospital Anxiety and Depression Scale. Secondary outcomes are caregiver burden, caregiver quality of life, quality of life of the patient and psychological distress of the patient. Group differences in primary and secondary outcomes at 6 months will be compared with linear mixed model analysis. In a subgroup of caregivers we will explore experiences with the support program through semi-structured interviews. Usage of the online modules will be logged. DISCUSSION: The study will provide insights into the effectiveness of a blended psychosocial support program on psychological distress of caregivers of patients with ALS or PMA, as well as into indirect relations with patients' wellbeing.

trial registrationNetherlands Trial Registry NTR5734 , registered 28 March 2016.

Indexed as

Psychosocial Support SystemsAdaptation, PsychologicalAdultAgedAmyotrophic Lateral SclerosisCaregiversClinical ProtocolsFemaleHumansMaleMuscular Atrophy, SpinalNetherlandsQuality of LifeResearch DesignSpousesSurveys and QuestionnairesAcceptance and Commitment TherapyAmyotrophic Lateral Sclerosis (ALS)CaregiversProgressive Muscular Atrophy (PMA)Psychological distress

Identifiers

PMID29716660
PMCPMC5930742
OpenAlexW2804778376

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.