Evidence map›Paper›PMID 36812393›Full record

SynthesisThe Cochrane database of systematic reviews2023

Methods for informing people with amyotrophic lateral sclerosis/motor neuron disease of their diagnosis.

Paolo Bongioanni, Gian Domenico Borasio, David J Oliver, Andrea Romagnoli, Karl P Kapitza, Katie Sidle, Francesco Tramonti

Abstract readSystematic Review
PubMed Full text at PMC Publisher
In one paragraph

Synthesis in The Cochrane database of systematic reviews, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed, 2 pooled it
–field-weighted citation impact
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

3 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. 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

7 authors.

Paolo BongioanniSpinal Cord Injury Unit, Medical Specialties, Azienda Ospedaliero-Universitaria Pisana (AOUP), Pisa, Italy.
Gian Domenico BorasioPalliative and Supportive Care Service, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.
David J OliverTizard Centre, University of Kent, Canterbury, UK.
Andrea RomagnoliRicerche Nuove, Pisa, Italy.
Karl P KapitzaPanel Physicians' Association Schleswig-Holstein, Bad Segeberg, Germany.
Katie SidleQueen Square Centre for Neuromuscular Diseases, London, UK.
Francesco TramontiDepartment of Mental Health, Azienda USL Toscana Nordovest, Pisa, Italy.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAmyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), causes increasing physical impairment and disability. People with ALS/MND face huge physical challenges, and the diagnosis can be a source of great psychological distress for both people with ALS/MND and their carers. In such a context, how news of the diagnosis is broken is important. At present, there are no systematic reviews of methods for informing people with ALS/MND of their diagnosis.

objectivesTo examine the effects and effectiveness of different methods for informing people of a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND), including effects on the person's knowledge and understanding of their disease, its treatment, and care; and on coping and adjustment to the effects of ALS/MND, its treatment, and care. SEARCH

methodsWe searched the Neuromuscular Specialised Register, CENTRAL, MEDLINE, Embase, PsycINFO, and two trials registers (February 2022). We contacted individuals or organisations to locate studies. We contacted study authors to obtain additional unpublished data. SELECTION CRITERIA: We planned to include randomised controlled trials (RCTs) and quasi-RCTs of techniques for informing people with ALS/MND of their diagnosis. We planned to include adults (aged 17 years or over) with ALS/MND, according to the El Escorial criteria. DATA COLLECTION AND ANALYSIS: Three review authors independently reviewed the results of the search to identify RCTs, and three review authors identified non-randomised studies to include in the discussion section. We planned that two review authors would independently extract data, and three would assess the risk of bias in any included trials. MAIN

resultsWe did not identify any RCTs that met our inclusion criteria. AUTHORS'

conclusionsThere are no RCTs that evaluate different communication strategies for breaking the bad news for people diagnosed with ALS/MND. Focused research studies are needed to assess the effectiveness and efficacy of different communication methods.

Indexed as

Amyotrophic Lateral SclerosisMotor Neuron DiseaseAdultHumans

Identifiers

PMID36812393
PMCPMC9944678

What OpenQuestion holds

Textmetadata
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.