Communication change in ALS: engaging people living with ALS and their partners in future research

References

• Millul A, Beghi E, Logroscino G, et al. Survival of patients with amyotrophic lateral sclerosis in a population-based registry. Neuroepidemiology. 2005;25:114–119.
   PubMed Web of Science ®Google Scholar
• Alonso A, Logroscino G, Jick SS, et al. Incidence and lifetime risk of motor neuron disease in the United Kingdom: a population-based study. Eur J Neurol. 2009;16:745–751.
   PubMed Web of Science ®Google Scholar
• Tomik B, Guiloff RJ. Dysarthria in amyotrophic lateral sclerosis: a review. Amyotroph Lateral Scler. 2010;11:4–15.
   PubMed Web of Science ®Google Scholar
• Haverkamp LJ, Appel V, Appel SH. Natural history of amyotrophic lateral sclerosis in a database population. Validation of a scoring system and a model for survival prediction. Brain. 1995;118:707–719.
   PubMed Web of Science ®Google Scholar
• Raheja D, Stephens HE, Lehman E, et al. Patient-reported problematic symptoms in an ALS treatment trial. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:198–205.
   PubMed Web of Science ®Google Scholar
• Felgoise SH, Zaccheo V, Duff J, et al. Verbal communication impacts quality of life in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:179–183.
   PubMed Web of Science ®Google Scholar
• Körner S, Siniawski M, Kollewe K, et al. Speech therapy and communication device: Impact on quality of life and mood in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14:20–25.
   PubMed Web of Science ®Google Scholar
• Mckelvey M, Evans DL, Kawai N, et al. Communication styles of persons with ALS as recounted by surviving partners. Augmentative Altern Commun. 2012;28:232–242.
   PubMed Web of Science ®Google Scholar
• Gruis KL, Wren PA, Huggins JE. Amyotrophic lateral sclerosis patients' self-reported satisfaction with assistive technology. Muscle Nerve. 2011;43:643–647.
   PubMed Web of Science ®Google Scholar
• Goldstein LH, Abrahams S. Changes in cognition and behaviour in amyotrophic lateral sclerosis: nature of impairment and implications for assessment. Lancet Neurol. 2013;12:368–380.
   PubMed Web of Science ®Google Scholar
• Beeldman E, Raaphorst J, Klein Twennaar M, et al. The cognitive profile of ALS: a systematic review and meta-analysis update. J Neurol Neurosurg Psychiatry. 2016;87:611–619.
   PubMed Web of Science ®Google Scholar
• Joubert K, Bornman J, Alant E. Speech intelligibility and marital communication in amyotrophic lateral sclerosis: an exploratory study. Commun Disord Q. 2011;33:34–41.
   Web of Science ®Google Scholar
• Makkonen T, et al. Variation in communication strategies in amyotrophic lateral sclerosis during a two-year follow-up. Speech Lang Hearing. 2017;21:1–8.
   Web of Science ®Google Scholar
• Ball LJ, Beukelman DR, Pattee GL. Acceptance of augmentative and alternative communication technology by persons with amyotrophic lateral sclerosis. Augmentative Altern Commun. 2004;20:113–122.
   Google Scholar
• Ball LJ, et al. Duration of AAC technology use by persons with ALS. J Med Speech-Lang Pathol. 2007;15:371–381.
   Google Scholar
• Londral A, Pinto A, Pinto S, et al. Quality of life in amyotrophic lateral sclerosis patients and caregivers: impact of assistive communication from early stages. Muscle Nerve. 2015;52:933–941.
   PubMed Web of Science ®Google Scholar
• Fried-Oken M, Fox L, Rau MT, et al. Purposes of AAC device use for persons with ALS as reported by caregivers. Augmentative Altern Commun. 2006;22:209–221.
   PubMed Web of Science ®Google Scholar
• Murphy J. “I prefer contact this close": perceptions of AAC by people with motor neurone disease and their communication partners. Augmentative Altern Commun. 2004;20:259–271.
   Google Scholar
• Morris MA, Dudgeon BJ, Yorkston K. A qualitative study of adult AAC users' experiences communicating with medical providers. Disabil Rehabil Assist Technol. 2013;8:472–481.
   PubMedGoogle Scholar
• Makkonen T, Ruottinen H, Puhto R, et al. Speech deterioration in amyotrophic lateral sclerosis (ALS) after manifestation of bulbar symptoms. Int J Lang Commun Disord. 2018;53(2):385–392.
   PubMed Web of Science ®Google Scholar
• Brownlee A, Bruening LM. Methods of communication at end of life for the person with amyotrophic lateral sclerosis. Top Lang Disord. 2012;32:168–185.
   Web of Science ®Google Scholar
• Palmer R, Paterson G, Merriman T, et al. To what extent can people with communication difficulties contribute to health research? Nurse Res. 2013;20:12–16.
   PubMedGoogle Scholar
• Dalemans R, Wade DT, van den Heuvel WJA, et al. Facilitating the participation of people with aphasia in research: a description of strategies. Clin Rehabil. 2009;23:948–959.
   PubMed Web of Science ®Google Scholar
• Gove D, et al. Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement). Aging Ment Health. 2018;22:723–729.
   Google Scholar
• Brett J, Staniszewska S, Mockford C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17:637–650.
   PubMed Web of Science ®Google Scholar
• Kitzinger J. Qualitative research. Introducing focus groups. Br Med J. 1995;311:299–302.
   PubMed Web of Science ®Google Scholar
• The Amyotrophic Lateral Sclerosis Functional Rating Scale. Assessment of activities of daily living in patients with amyotrophic lateral sclerosis. The ALS CNTF treatment study (ACTS) phase I-II Study Group. Arch Neurol. 1996;53:141–147.
   Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.
   Google Scholar
• Bunnell HT, J, Lilley K. McGrath The ModelTalker project: a web-based voice banking pipeline for ALS/MND patients. INTERSPEECH 2017: Show & Tell Contribution; 2017 Aug 20–24; Stockholm, Sweden. p. 4032–4033.
   Google Scholar
• Bloch S, Saldert C, Ferm U. Problematic topic transitions in dysarthric conversation. Int J Speech Lang Pathol. 2015;17:373–383.
   PubMed Web of Science ®Google Scholar
• Bloch S, Tuomainen J. Progressive dysarthria and augmentative and alternative communication in conversation: establishing the reliability of the dysarthria-in-interaction profile. Int J Lang Commun Disord. 2017;52:3–9.
   PubMed Web of Science ®Google Scholar
• Bloch S. Anticipatory other-completion of augmentative and alternative communication talk: a conversation analysis study. Disabil Rehabil. 2011;33:261–269.
   PubMed Web of Science ®Google Scholar
• Bloch S, Wilkinson R. Acquired dysarthria in conversation: methods of resolving understandability problems. Int J Lang Commun Disord. 2011;46:510–523.
   PubMed Web of Science ®Google Scholar