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Disability and Rehabilitation: Assistive Technology Volume 14, 2019 - Issue 7
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Original Research

Patients’ perspectives of multidisciplinary home-based e-Health service delivery for motor neurone disease

Natalie JamesSt Joseph’s Hospital, Sydney, Australia; View further author information
,
Emma PowerUniversity of Sydney, Speech Pathology, Faculty of Health Sciences, Sydney, Australia; ORCID Iconhttp://orcid.org/0000-0002-2638-0406View further author information
ORCID Icon,
Anne HogdenAustralian Institute of Health Innovation, Macquarie University, Sydney, Australia; Correspondence[email protected]
View further author information
&
Steve VucicWestern Clinical School, University of Sydney, Sydney, AustraliaView further author information
Pages 737-743 | Received 12 Apr 2018, Accepted 08 Jul 2018, Published online: 05 Sep 2018

References

  • Kiernan MC, Vucic S, Cheah BC. Amyotrophic lateral sclerosis. Lancet. 2011;377:942–955.
  • Chio A, Buffa C, Mutani R, et al. Positive effects of tertiary centres for amyotrophic lateral sclerosis on outcome and use of hospital facilities. J Neurol Neurosurg Psychiatry. 2006;77:948–950.
  • Aridegbe T, Kandler R, Walters SJ, et al. The natural history of motor neuron disease: assessing the impact of specialist care. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14:13–19.
  • Rooney J, Byrne S, Heverin M, et al. A multidisciplinary clinic approach improves survival in MND: a comparative study of MND in Ireland and Northern Ireland. J Neurol Neurosurg Psychiatry. 2015;86:496–501.
  • Hobson EV, Baird WO, Cooper CL, et al. Using technology to improve access to specialist care in amyotrophic lateral sclerosis: A systematic review. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:313–324.
  • Stephens HE, Young J, Felgoise SH, et al. A Qualitative Study of Multidisciplinary MND Clinic Use in the United States. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:55–61.
  • Hogden A, Greenfield D, Nugus P, et al. What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care? Patient Prefer Adherence. 2013;7:171–181.
  • Shaw T, McGregor D, Brunner M, et al. What is eHealth (6)? Development of a Conceptual Model for eHealth: Qualitative Study with Key Informants. J Med Internet Res. 2017;19:e324.
  • Nijeweme-D'hollosy WO, Janssen EPF, Huis in ’t Veld RM, et al. Tele-treatment of patients with amyotrophic lateral sclerosis (MND). J Telemed Telecare. 2006;12:31–34.
  • Henderson RD, Hutchinson N, Douglas JA, et al. Telehealth for motor neurone disease. Med J Aust. 2014;201:31.
  • McClellan F, Washington M, Ruff R, et al. Early and innovative symptomatic care to improve quality of life of MND patients at Cleveland VA MND Center. JRRD. 2013;50:vii–v26.
  • Kelsen L, McCoy S, Hoffman P. Patwa. Comprehensive care and home telehealth for veterans with MND. Amyotroph Lateral Scler. 2013;14:64–83.
  • Mackenzie L, Bhuta P, Rusten K, et al. Communications technology and motor neuron disease: an australian survey of people with motor neuron disease. JMIR Rehabil Assist Technol. 2016;3:e2.
  • Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3:77–101.
  • Thomas DR. A general inductive approach for analysing qualitative evaluation data. Am J Eval. 2006;27:237–246.
  • Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-iten checklist for interviews and focus groups. Int J Qual Health Care. 2007;19:349–357.
  • Liamputtong P. Qualitative Research Methods. 4th ed. South Melbourne, Victoria: Oxford University Press; 2013.
  • Montes J, Levy G, Albert S, et al. Development and evaluation of a self-administered version of the ALSFRS-R. Neurology. 2006;67:1294–1296.
  • Kaufmann P, Levy G, Montes J, et al. Excellent inter-rater, intra-rater, and telephone-administered reliability of the ALSFRS-R in a multicenter clinical trial. Amyotroph Lateral Scler. 2007;8:42–46.
  • Hsieh S, McGrory S, Leslie F, et al. The mini-Addenbrooke's cognitive examination: a new assessment tool for dementia. Dement Geriatr Cogn Disord. 2015;39:1–11.
  • Finch E, Hill AJ. Computer use by people with aphasia: a survey investigation. Brain Impairment. 2014;15:107–119.
  • Qureshi AA, Kvedar JC. Patient knowledge and attitude toward information technology and teledermatology: some tentative findings. Telemed J E Health. 2003;9:259–264.
  • Norum J, Grev A, Moen M, et al. Information and communication technology (ICT) in oncology. Patients’ and relatives’ experiences and suggestions. Support Care Cancer. 2003;11:286–293.
  • Foley G, Timonen V, Hardiman O. Patients’ perceptions of services and preferences for care in amyotrophic lateral sclerosis: a review. Amyotroph Lateral Scler. 2012;13:11–24.
  • Dorsey ER, Venkataraman V, Grana M, et al. Randomised controlled clinical trial of “Virtual House Calls” for Parkinson’s disease. JAMA Neurol. 2013;70:565–570.
  • Herz H, McKinnon PM, Butow PN. Proof of love and other themes: a qualitative exploration of the experience of caring for people with motor neuron disease. Prog Palliat Care. 2006;14:209–214.

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