IMPACT-ALS: summary of results from a European survey of people living with ALS

Abstract

Objective

The IMPACT-ALS survey collected the experiences of people living with ALS (plwALS) across nine European countries. We aimed to better understand the functional burden of ALS to ensure the experiences of plwALS inform the development of person-centered therapies.

Methods

The content was informed by the US IMPACT-ALS survey, with adjustments relevant to the European population. Questionnaires consisted of four modules, each of which was pilot tested in advance of distribution. Data were captured using the Qualtrics software and were analyzed in SPSS.

Results

857 respondents completed the survey, with a participation rate ranging from 0.2% to 6.3% across the nine participating countries. The majority were male and aged 55–74 years old. In the previous 2 weeks, symptoms experienced included weakness (81%), fatigue (61%), speech impairment (38%), pain (27%), and depression and other mood changes (23%). Eighty-two percent of respondents reported fears, of which the most common were leaving family too soon (68%) and death from respiratory failure (50%). Lifestyle changes since diagnosis were reported by 89% of respondents, with less time spent doing most daily activities but more time on the internet (81%), reading (56%) and communicating with family and friends (55%). Stopping progression of ALS was the most desired impact for a new therapy for 68% respondents.

Conclusions

The European IMPACT-ALS survey has generated insights into the complex experiences of plwALS. The data provide unique patient perspectives on common symptoms, fears, functional limitations, lifestyle changes, and wishes for future therapies that will enhance patient-centric care in ALS.

Keywords:

• Amyotrophic lateral sclerosis
• motor neuron disease
• self-reported health
• non-motor symptoms
• quality of life

Acknowledgements

We would like to thank all the people living with ALS and their caregivers who responded to this survey. We would like to acknowledge funding provided by Cytokinetics, South San Francisco, USA; Ionis, Carlsbad, California, USA; and Biogen Cambridge, Massachusetts, USA; Apothecom UK for administering the online survey and collating the responses; IMNDA, MNDA, TRICALS, EUPALS, and the many national and local voluntary organizations in the participating countries for advertising and supporting the distribution of the survey.

Declaration of interest

EC, DO, MH, OH and MG report no conflict of interest.

Data availability statement

The data that support the findings of this study are available on request from the corresponding author (MG).

Additional information

Funding

This research was funded by Cytokinetics, South San Francisco, USA; Ionis, Carlsbad, California, USA; and Biogen, Cambridge, Massachusetts, USA. BV-G was supported by the “Rotación de formación en Neurología en centro extranjero” from Comité ad‐hoc de Neurólogos Jóvenes (Spanish Society of Neurology). CM is supported by the NIHR Sheffield Biomedical Research Center and NIHR Research Professorship award.