202
Views
0
CrossRef citations to date
0
Altmetric
Clinical

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

, , , , , ORCID Icon & show all
Pages 641-650 | Received 13 Dec 2022, Accepted 15 Aug 2023, Published online: 03 Sep 2023

References

  • Baxter SK, Baird WO, Thompson S, Bianchi SM, Walters SJ, Lee E, et al. The initiation of non-invasive ventilation for patients with motor neuron disease: patient and carer perceptions of obstacles and outcomes. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14:105–10.
  • Simmons Z. Patient-perceived outcomes and quality of life in ALS. Neurotherapeutics 2015;12:394–402.
  • Arthur KC, Calvo A, Price TR, Geiger JT, Chiò A, Traynor BJ. Projected increase in amyotrophic lateral sclerosis from 2015 to 2040. Nat Commun. 2016;7:12408.
  • Schwartz CE, Sprangers MA. Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Soc Sci Med. 1999;48:1531–48.
  • Carr AJ, Gibson B, Robinson PG. Measuring quality of life: is quality of life determined by expectations or experience? BMJ 2001;322:1240–3.
  • Barclay R, Tate RB. Response shift recalibration and reprioritization in health-related quality of life was identified prospectively in older men with and without stroke. J Clin Epidemiol. 2014;67:500–7.
  • Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci. 1999;169:13–21.
  • Zizzi C, Seabury J, Rosero S, Alexandrou D, Wagner E, Weinstein JS, et al. Patient reported impact of symptoms in amyotrophic lateral sclerosis (PRISM-ALS): a national, cross-sectional study. eClinicalMedicine 2023;55:101768.
  • ALS Association. IMPACT ALS – investigation and measuring patient and caregiver trends about ALS. [Internet]. Harvard Dataverse. 2019. Available at: https://dataverse.harvard.edu/dataset.xhtml?persistentId=. Accessed June 6, 2023.
  • Brizzi KT, Bridges JFP, Yersak J, Balas C, Thakur N, Galvin M, et al. Understanding the needs of people with ALS: a national survey of patients and caregivers. Amyotroph Lateral Scler Frontotemporal Degener. 2020;21:355–63.
  • ENCALS – The European Network for the Cure of ALS (ENCALS) [Internet]. ENCALS. Available at: https://www.encals.eu/. Accessed June 6, 2023.
  • VOP-ALS_FINAL_For-Posting-10-23-19.pdf [Internet]. 2019. Available at: https://www.als.org/sites/default/files/2020-06/VOP-ALS_FINAL_For-Posting-10-23-19.pdf. Accessed June 6, 2023.
  • Brown CA, Lally C, Kupelian V, Flanders WD. Estimated prevalence and incidence of amyotrophic lateral sclerosis and SOD1 and C9orf72 genetic variants. Neuroepidemiology 2021;55:342–53.
  • Logroscino G, Traynor BJ, Hardiman O, Chiò A, Mitchell D, Swingler RJ, et al. Incidence of amyotrophic lateral sclerosis in Europe. J Neurol Neurosurg Psychiatry. 2010;81:385–90.
  • Simmons Z, Bremer BA, Robbins RA, Walsh SM, Fischer S. Quality of life in ALS depends on factors other than strength and physical function. Neurology 2000;55:388–92.
  • Robbins RA, Simmons Z, Bremer BA, Walsh SM, Fischer S. Quality of life in ALS is maintained as physical function declines. Neurology 2001;56:442–4.
  • Sprangers MA, Aaronson NK. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol. 1992;45:743–60.
  • Gibbons CJ, Thornton EW, Young CA. The patient experience of fatigue in motor neurone disease. Front Psychol. 2013;4:788.
  • Nicholson K, Murphy A, McDonnell E, Shapiro J, Simpson E, Glass J, et al. Improving symptom management for people with amyotrophic lateral sclerosis. Muscle Nerve 2018;57:20–4.
  • McElhiney MC, Rabkin JG, Gordon PH, Goetz R, Mitsumoto H. Prevalence of fatigue and depression in ALS patients and change over time. J Neurol Neurosurg Psychiatry. 2009;80:1146–9.
  • Young CA, Ealing J, McDermott C, Williams T, Al-Chalabi A, Majeed T, et al. The relationships between symptoms, disability, perceived health and quality of life in amyotrophic lateral sclerosis/motor neuron disease. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20:317–27.
  • Gibbons C, Pagnini F, Friede T, Young CA. Treatment of fatigue in amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database Syst Rev. 2018;1:CD011005.
  • Kluger BM, Krupp LB, Enoka RM. Fatigue and fatigability in neurologic illnesses: proposal for a unified taxonomy. Neurology 2013;80:409–16.
  • Chaudhuri A, Behan PO. Fatigue in neurological disorders. Lancet 2004;363:978–88.
  • Induruwa I, Constantinescu CS, Gran B. Fatigue in multiple sclerosis – a brief review. J Neurol Sci. 2012;323:9–15.
  • Hurwitz N, Radakovic R, Boyce E, Peryer G. Prevalence of pain in amyotrophic lateral sclerosis: a systematic review and meta-analysis. Amyotroph Lateral Scler Frontotemporal Degener. 2021;22:449–58.
  • Vogt S, Schlichte I, Schreiber S, Wigand B, Debska-Vielhaber G, Heitmann J, et al. A multi-center cohort study on characteristics of pain, its impact and pharmacotherapeutic management in patients with ALS. J Clin Med. [serial online]. 2021;10:4552. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8509485/. Accessed June 6, 2023.
  • Elliott E, Newton J, Rewaj P, Gregory JM, Tomarelli L, Colville S, et al. An epidemiological profile of dysarthria incidence and assistive technology use in the living population of people with MND in Scotland. Amyotroph Lateral Scler Frontotemporal Degener. 2020;21:116–22.
  • Maresca G, Pranio F, Naro A, De Luca R, Maggio MG, Scarcella I, et al. Augmentative and alternative communication improves quality of life in the early stages of amyotrophic lateral sclerosis. Funct Neurol. 2019;34:35–43.
  • Felgoise SH, Zaccheo V, Duff J, Simmons Z. Verbal communication impacts quality of life in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:179–83.
  • Prado LdGR, Bicalho ICS, Vidigal-Lopes M, Prado VdGR, Gomez RS, de Souza LC, et al. Depression and anxiety in a case series of amyotrophic lateral sclerosis: frequency and association with clinical features. Einstein (Sao Paulo) 2017;15:58–60.
  • De Marchi F, Sarnelli MF, Solara V, Bersano E, Cantello R, Mazzini L. Depression and risk of cognitive dysfunctions in amyotrophic lateral sclerosis. Acta Neurol Scand. 2019;139:438–45.
  • van Groenestijn AC, Kruitwagen-van Reenen ET, Visser-Meily JMA, van den Berg LH, Schröder CD. Associations between psychological factors and health-related quality of life and global quality of life in patients with ALS: a systematic review. Health Qual Life Outcomes. 2016;14:107.
  • Phukan J, Elamin M, Bede P, Jordan N, Gallagher L, Byrne S, et al. The syndrome of cognitive impairment in amyotrophic lateral sclerosis: a population-based study. J Neurol Neurosurg Psychiatry. 2012;83:102–8.
  • Ringholz GM, Appel SH, Bradshaw M, Cooke NA, Mosnik DM, Schulz PE. Prevalence and patterns of cognitive impairment in sporadic ALS. Neurology 2005;65:586–90.
  • Strong MJ, Abrahams S, Goldstein LH, Woolley S, Mclaughlin P, Snowden J, et al. Amyotrophic lateral sclerosis – frontotemporal spectrum disorder (ALS-FTSD): revised diagnostic criteria. Amyotroph Lateral Scler Frontotemporal Degener. 2017;18:153–74.
  • Lillo P, Savage S, Mioshi E, Kiernan MC, Hodges JR. Amyotrophic lateral sclerosis and frontotemporal dementia: a behavioural and cognitive continuum. Amyotroph Lateral Scler. 2012;13:102–9.
  • Rusina R, Vandenberghe R, Bruffaerts R. Cognitive and behavioral manifestations in ALS: beyond motor system involvement. Diagn Basel Switz. 2021;11:624.
  • Leigh PN, Abrahams S, Al-Chalabi A, Ampong MA, Goldstein LH, Johnson J, et al. The management of motor neurone disease. J Neurol Neurosurg Psychiatry. 2003;74 Suppl 4:iv32–iv47.
  • Benditt JO, Smith TS, Tonelli MR. Empowering the individual with ALS at the end-of-life: disease-specific advance care planning. Muscle Nerve 2001;24:1706–9.
  • Bede P, Oliver D, Stodart J, van den Berg L, Simmons Z, O Brannagáin D, et al. Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives. J Neurol Neurosurg Psychiatry. 2011;82:413–8.
  • Heritier Barras AC, Adler D, Iancu Ferfoglia R, Ricou B, Gasche Y, Leuchter I, et al. Is tracheostomy still an option in amyotrophic lateral sclerosis? Reflections of a multidisciplinary work group. Swiss Med Wkly. 2013;143:w13830.
  • Kaub-Wittemer D, Steinbüchel Nv, Wasner M, Laier-Groeneveld G, Borasio GD. Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. J Pain Symptom Manage. 2003;26:890–6.
  • Hartmaier SL, Rhodes T, Cook SF, Schlusser C, Chen C, Han S, et al. Qualitative measures that assess functional disability and quality of life in ALS. Health Qual Life Outcomes. 2022;20:12.
  • Van Groenestijn AC, Schröder CD, Kruitwagen-Van Reenen ET, Van Den Berg LH, Visser-Meily JMA. Participation restrictions in ambulatory amyotrophic lateral sclerosis patients: physical and psychological factors. Muscle Nerve 2017;56:912–8.
  • Sandstedt P, Johansson S, Ytterberg C, Ingre C, Holmqvist LW, Kierkegaard M. Predictors of health-related quality of life in people with amyotrophic lateral sclerosis. J Neurol Sci. 2016;370:269–73.
  • Foley G, Timonen V, Hardiman O. Experience of services as a key outcome in amyotrophic lateral sclerosis (ALS) care: the case for a better understanding of patient experiences. Am J Hosp Palliat Care. 2012;29:362–7.
  • Kierkegaard M, Gottberg K, Johansson S, Littorin S, Sandstedt P, Ytterberg C, et al. Healthcare utilisation and satisfaction with care in patients with amyotrophic lateral sclerosis – an observational study. J Neuromuscul Dis. 2021;8:1079–88.
  • Eysenbach G. Improving the quality of web surveys: the checklist for reporting results of internet E-surveys (CHERRIES). J Med Internet Res. 2004;6:e34.
  • Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med. 1995;9:207–19.
  • Glasmacher SA, Wong C, Pearson IE, Pal S. Survival and prognostic factors in C9orf72 repeat expansion carriers: a systematic review and meta-analysis. JAMA Neurol. 2020;77:367–76.
  • Chiò A, Canosa A, Calvo A, Moglia C, Cicolin A, Mora G. Developments in the assessment of non-motor disease progression in amyotrophic lateral sclerosis. Expert Rev Neurother. 2021;21:1419–40.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.