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Cochrane Db Syst Rev · Feb 2023
ReviewMethods 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, and Francesco Tramonti.
- Spinal Cord Injury Unit, Medical Specialties, Azienda Ospedaliero-Universitaria Pisana (AOUP), Pisa, Italy.
- Cochrane Db Syst Rev. 2023 Feb 22; 2 (2): CD007593CD007593.
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 We contacted study authors to obtain additional unpublished data.Selection CriteriaWe planned to include randomised controlled trials (RCTs) and quasi-RCTs of techniques for informing people with ALS/MND of their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 AnalysisThree 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. 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.Copyright © 2023 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
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