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. 2023 Feb 22;2(2):CD007593.
doi: 10.1002/14651858.CD007593.pub2.

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

Paolo Bongioanni  1 , Gian Domenico Borasio  2 , David J Oliver  3 , Andrea Romagnoli  4 , Karl P Kapitza  5   6 , Katie Sidle  7 , Francesco Tramonti  8
Affiliations

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

Paolo Bongioanni et al. Cochrane Database Syst Rev. .

Abstract

Background: Amyotrophic 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.

Objectives: To 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 methods: We 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 We contacted study authors to obtain additional unpublished data.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 results: We did not identify any RCTs that met our inclusion criteria.

Authors' conclusions: There 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.

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Conflict of interest statement

PB: none known

GDB: none known

DJO: none known

FT: none known. FT works as a psychologist at Azienda USL Toscana Nordovest, Pisa, Italy (Public Health Sector).

AR: none known

KPK: none known

KS: none known

Figures

1
1
PRISMA flowchart of study selection
See this image and copyright information in PMC

Update of

References

References to studies excluded from this review

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References to other published versions of this review

Bongioanni 2009
    1. Bongioanni P, Borasio GD, Oliver D, Tramonti F, Romagnoli A, Kapitza KP. Methods for informing people with amyotrophic lateral sclerosis/motor neuron disease of their diagnosis. Cochrane Database of Systematic Reviews 2009, Issue 1. Art. No: CD007593. [DOI: 10.1002/14651858.CD007593] - DOI - PMC - PubMed

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