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Review

Telehealth in long-term neurological conditions: the potential, the challenges and the key recommendations

ORCID Icon, ORCID Icon &
Pages 506-517 | Received 03 Nov 2021, Accepted 07 Feb 2022, Published online: 25 Feb 2022

References

  • Burridge J, Alt Murphy M, Buurke J, et al. A systematic review of international clinical guidelines for rehabilitation of people with neurological conditions: what recommendations are made for upper limb assessment? Front Neurol. 2019;10:567.
  • Mitchell LA, Hirdes J, Poss JW, et al. Informal caregivers of clients with neurological conditions: profiles, patterns and risk factors for distress from a home care prevalence study. BMC Health Serv Res. 2015;15(1):350.
  • National Institute for Health and Care Excellence. Motor neurone disease: assessment and management. NICE Guideline [NG42]; London, 2019.
  • National Institute for Health and Care Excellence. Multiple sclerosis in adults: management. Clinical guideline [CG186]; London, 2019.
  • NHS England. GP patient survey 2015; London, 2015.
  • Thames Valley Strategic Clinical Network. Transforming community neurology. What commissioners need to know; Oxford, 2016.
  • Etters L, Goodall D, Harrison BE. Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract. 2008;20(8):423–428.
  • GBD Neurology Collaborators. Global, regional, and national burden of neurological disorders, 1990–2016: a systematic analysis for the global burden of disease study 2016. Lancet Neurol. 2019;18(5):459–480.
  • Public Health England. Deaths associated with neurological conditions in England; London, 2018.
  • The Neurological Alliance. Neuro numbers 2019. A report by The Neurological Alliance; London, 2019.
  • Hobson E, McDermott CJ. Supportive and symptomatic management of amyotrophic lateral sclerosis. Nat Rev Neurol. 2016;12(9):526–538.
  • National Institute for Health and Care Excellence. Dementia: assessment, management and support for people living with dementia and their carers. NICE Guideline [NG97]; London, 2018.
  • Stroke Unit Trialists' Collaboration. Organised inpatient (stroke unit) care for stroke. Cochrane Database Syst Rev. 2013;2013(9):CD000197.
  • Clarke DJ, Forster A. Improving post-stroke recovery: the role of the multidisciplinary health care team. J Multidiscip Healthc. 2015;8:433–442.
  • Hogden A, Foley G, Henderson RD, et al. Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach. J Multidiscip Healthc. 2017;10:205–215.
  • Rooney J, Byrne S, Heverin M, et al. A multidisciplinary clinic approach improves survival in ALS: a comparative study of ALS in Ireland and Northern Ireland. J Neurol Neurosurg Psychiatry. 2015;86(5):496–501.
  • The Neurological Alliance. Issues affecting neurology services. Neurological Alliance briefing April 2016; London, 2016.
  • The Neurological Alliance. The invisible patients. Revealing the state of neurology services; London, 2015.
  • Minden SL, Hoaglin DC, Hadden L, et al. Access to and utilization of neurologists by people with multiple sclerosis. Neurology. 2008;70(13 Pt 2):1141–1149.
  • Burton A. How do we fix the shortage of neurologists? Lancet Neurol. 2018;17(6):502–503.
  • Patel UK, Malik P, DeMasi M, et al. Multidisciplinary approach and outcomes of tele-neurology: a review. Cureus. 2019;11(4):e4410.
  • Turner MR, Parton MJ, Shaw CE, et al. Prolonged survival in motor neuron disease: a descriptive study of the King's database 1990–2002. J Neurol Neurosurg Psychiatry. 2003;74(7):995–997.
  • NHS England. Five year forward view; London, 2018.
  • World Health Organisation. Global strategy on digital health 2020–2025; Geneva, 2021.
  • Bloem BR, Henderson EJ, Dorsey ER, et al. Integrated and patient-centred management of Parkinson's disease: a network model for reshaping chronic neurological care. Lancet Neurol. 2020;19(7):623–634.
  • NHS Commissioning Assembly. Technology enabled care services: resource for commissioners; London, 2015.
  • Hobson E, Baird WO, Partridge R, et al. The TiM system: developing a novel telehealth service to improve access to specialist care in motor neurone disease using user-centered design. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19(5–6):351–361.
  • Cedarbaum JM, Stambler N, Malta E, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. J Neurol Sci. 1999;169(1–2):13–21.
  • Hobson E, Baird W, Bradburn M, et al. Process evaluation and exploration of telehealth in motor neuron disease in a UK specialist centre. BMJ Open. 2019;9(10):e028526.
  • Hobson E, Baird WO, Bradburn M, et al. Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study. BMJ Open. 2019;9(10):e028525.
  • Harold M, Knox L, Booth J, et al. Exploring the inclusivity of telehealth for people living with motor neuron disease, and the validity of a telehealth version of the ALSFRS-R. In: MNDA, editor. 32nd International Symposium on ALS/MND; Virtual; 2021.
  • Sutherland J, Knox L, Mayberry E, et al. Exploring the natural history data captured using telehealth in routine clinical practice. In: MNDA, editor. 32nd International Symposium on ALS/MND; Virtual; 2021.
  • Dorsey ER, Venkataraman V, Grana MJ, et al. Randomized controlled clinical trial of "virtual house calls" for Parkinson disease”. JAMA Neurol. 2013;70(5):565–570.
  • Jaglal SB, Guilcher SJT, Bereket T, et al. Development of a chronic care model for neurological conditions (CCM-NC). BMC Health Serv Res. 2014;14(1):409.
  • Paganoni S, Simmons Z. Telemedicine to innovate amyotrophic lateral sclerosis multidisciplinary care: the time has come. Muscle Nerve. 2019;59(1):3–5.
  • Zhan A, Mohan S, Tarolli C, et al. Using smartphones and machine learning to quantify Parkinson disease severity: the mobile Parkinson disease score. JAMA Neurol. 2018;75(7):876–880.
  • Sola-Valls N, Blanco Y, Sepúlveda M, et al. Telemedicine for monitoring MS activity and progression. Curr Treat Options Neurol. 2015;17(11):47.
  • Talbot CV, Briggs P. The use of digital technologies by people with mild to moderate dementia during the COVID-19 pandemic: a positive technology perspective. Dementia. 2021.
  • National Institute for Health and Care Excellence. Stroke and transient ischaemic attack in over 16s: diagnosis and initial management. NICE Guideline [NG128]; London, 2019.
  • Stavroulakis T, Walsh T, Shaw PJ, et al. Gastrostomy use in motor neurone disease (MND): a review, meta-analysis and survey of current practice. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14(2):96–104.
  • O'Malley RPD, Mirheidari B, Harkness K, et al. Fully automated cognitive screening tool based on assessment of speech and language. J Neurol Neurosurg Psychiatry. 2021;92(1):12–15.
  • Flemming K, Turner V, Bolsher S, et al. The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: a qualitative systematic review. Palliat Med. 2020;34(6):708–730.
  • Hodkinson A, Bower P, Grigoroglou C, et al. Self-management interventions to reduce healthcare use and improve quality of life among patients with asthma: systematic review and network meta-analysis. BMJ. 2020;370:m2521.
  • Jones F, Riazi A. Self-efficacy and self-management after stroke: a systematic review. Disabil Rehabil. 2011;33(10):797–810.
  • Warsi A, Wang PS, LaValley MP, et al. Self-management education programs in chronic disease: a systematic review and methodological critique of the literature. Arch Intern Med. 2004;164(15):1641–1649.
  • Palmer R, Dimairo M, Cooper C, et al. Self-managed, computerised speech and language therapy for patients with chronic aphasia post-stroke compared with usual care or attention control (big CACTUS): a multicentre, single-blinded, randomised controlled trial. Lancet Neurol. 2019;18(9):821–833.
  • Huijbregts MPJ, McEwen S, Taylor D. Exploring the feasibility and efficacy of a telehealth stroke self-management programme: a pilot study. Physiother Can. 2009;61(4):210–220.
  • Hwang N-K, Park J-S, Chang M-Y. Telehealth interventions to support self-management in stroke survivors: a systematic review. Healthcare. 2021;9(4):472.
  • van Eijk RPA, Beelen A, Kruitwagen ET, et al. A road map for remote digital health technology for motor neuron disease. J Med Internet Res. 2021;23(9):e28766.
  • Hoppitt T, Pall H, Calvert M, et al. A systematic review of the incidence and prevalence of long-term neurological conditions in the UK. Neuroepidemiology. 2011;36(1):19–28.
  • Chiò A, Canosa A, Gallo S, et al. ALS clinical trials: do enrolled patients accurately represent the ALS population? Neurology. 2011;77(15):1432–1437.
  • van Eijk RPA, Westeneng HJ, Nikolakopoulos S, et al. Refining eligibility criteria for amyotrophic lateral sclerosis clinical trials. Neurology. 2019;92(5):e451–e460.
  • Rutkove SB, Narayanaswami P, Berisha V, et al. Improved ALS clinical trials through frequent at-home self-assessment: a proof of concept study. Ann Clin Transl Neurol. 2020;7(7):1148–1157.
  • Rutkove SB, Qi K, Shelton K, et al. ALS longitudinal studies with frequent data collection at home: study design and baseline data. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20(1–2):61–67.
  • Block VAJ, Pitsch E, Tahir P, et al. Remote physical activity monitoring in neurological disease: a systematic review. PLOS One. 2016;11(4):e0154335.
  • Espay AJ, Hausdorff JM, Sánchez-Ferro Á, et al. A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies. Mov Disord. 2019;34(5):657–663.
  • Harper KA, Butler EC, Hacker ML, et al. A comparative evaluation of telehealth and direct assessment when screening for spasticity in residents of two long-term care facilities. Clin Rehabil. 2021;35(4):589–594.
  • Hoffmann T, Russell T, Cooke H. Remote measurement via the internet of upper limb range of motion in people who have had a stroke. J Telemed Telecare. 2007;13(8):401–405.
  • van Oirschot P, Heerings M, Wendrich K, et al. Symbol digit modalities test variant in a smartphone app for persons with multiple sclerosis: validation study. JMIR Mhealth Uhealth. 2020;8(10):e18160.
  • Verduzco-Gutierrez M, Romanoski NL, Capizzi AN, et al. Spasticity outpatient evaluation via telemedicine: a practical framework. Am J Phys Med Rehabil. 2020;99(12):1086–1091.
  • van Eijk RPA, Bakers JN, Bunte TM, et al. Accelerometry for remote monitoring of physical activity in amyotrophic lateral sclerosis: a longitudinal cohort study. J Neurol. 2019;266(10):2387–2395.
  • Lord S, Godfrey A, Galna B, et al. Ambulatory activity in incident Parkinson’s: more than meets the eye? J Neurol. 2013;260(12):2964–2972.
  • Helleman J, Kruitwagen ET, van den Berg LH, et al. The current use of telehealth in ALS care and the barriers to and facilitators of implementation: a systematic review. Amyotroph Lateral Scler Frontotemporal Degener. 2019;21(3–4):1–16.
  • Koivunen M, Saranto K. Nursing professionals' experiences of the facilitators and barriers to the use of telehealth applications: a systematic review of qualitative studies. Scand J Caring Sci. 2018;32(1):24–44.
  • Keenan J, Rahman RJ, Hudson J. Exploring the acceptance of telehealth within palliative care: a self-determination theory perspective. Health Technol. 2021.
  • Knox L, Gemine R, Dunning M, et al. Reflexive thematic analysis exploring stakeholder experiences of virtual pulmonary rehabilitation (VIPAR). BMJ Open Respir Res. 2021;8(1):e000800.
  • Shaw S, Wherton J, Vijayaraghavan S, et al. Health services and delivery research. Advantages and limitations of virtual online consultations in a NHS acute trust: the VOCAL mixed-methods study. Southampton (UK): NIHR Journals Library; 2018.
  • NHS Health Education England. Improving digital literacy; London, 2017.
  • Yardley L, Morrison L, Bradbury K, et al. The person-based approach to intervention development: application to digital health-related behavior change interventions. J Med Internet Res. 2015;17(1):e30.
  • Helleman J, Van Eenennaam R, Kruitwagen ET, et al. Telehealth as part of specialized ALS care: feasibility and user experiences with "ALS home-monitoring and coaching". Amyotroph Lateral Scler Frontotemporal Degener. 2020;21(3–4):183–192.
  • Pinto A, Almeida JP, Pinto S, et al. Home telemonitoring of non-invasive ventilation decreases healthcare utilisation in a prospective controlled trial of patients with amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. 2010;81(11):1238–1242.
  • Haase R, Schultheiss T, Kempcke R, et al. Modern communication technology skills of patients with multiple sclerosis. Mult Scler. 2013;19(9):1240–1241.
  • Levy H, Janke A. Health literacy and access to care. J Health Commun. 2016;21(Suppl. 1):43–50.
  • Honeyman M, Maguire D, Evans H, et al. Digital technology and health inequalities: a scoping review; Cardiff, 2020.
  • Blakely T, Hales S, Kieft C, et al. The global distribution of risk factors by poverty level. Bull World Health Organ. 2005;83(2):118–126.
  • Ezzati M, Lopez AD, Rodgers A, et al. Comparative quantification of health risks. Global and regional burden of disease attributable to selected major risk factors. Geneva: World Health Organization; 2004. p. 1987–1997.
  • Boehme AK, Esenwa C, Elkind MS. Stroke risk factors, genetics, and prevention. Circ Res. 2017;120(3):472–495.
  • Hategeka C, Traboulsee AL, McMullen K, et al. Association of unemployment and informal care with stigma in multiple sclerosis: evidence from the survey on living with neurological conditions in Canada. Int J MS Care. 2019;21(5):214–225.
  • Rixon L, Hirani S, Cartwright M, et al. What influences withdrawal because of rejection of telehealth – the whole systems demonstrator evaluation. J Assist Technol. 2013;7(4):219–227.
  • Garcia-Gancedo L, Kelly ML, Lavrov A, et al. Objectively monitoring amyotrophic lateral sclerosis patient symptoms during clinical trials with sensors: observational study. JMIR Mhealth Uhealth. 2019;7(12):e13433.
  • Simblett SK, Evans J, Greer B, et al. Engaging across dimensions of diversity: a cross-national perspective on mHealth tools for managing relapsing remitting and progressive multiple sclerosis. Mult Scler Relat Disord. 2019;32:123–132.
  • Maeder A, Poultney N, Morgan G, et al. Patient compliance in home-based self-care telehealth projects. J Telemed Telecare. 2015;21(8):439–442.
  • Kruse CS, Fohn J, Umunnakwe G, et al. Evaluating the facilitators, barriers, and medical outcomes commensurate with the use of assistive technology to support people with dementia: a systematic review literature. Healthcare. 2020;8(3):278.
  • Blandford A, Gibbs J, Newhouse N, et al. Seven lessons for interdisciplinary research on interactive digital health interventions. Digit Health. 2018;4:2055207618770325.
  • Griffin N, Kehoe M. A questionnaire study to explore the views of people with multiple sclerosis of using smartphone technology for health care purposes. Disabil Rehabil. 2018;40(12):1434–1442.
  • Witham MD, Anderson E, Carroll C, et al. Developing a roadmap to improve trial delivery for under-served groups: results from a UK multi-stakeholder process. Trials. 2020;21(1):694.
  • de Almeida JPL, Pinto AC, Pinto S, et al. Economic cost of home-telemonitoring care for BiPAP-assisted ALS individuals. Amyotroph Lateral Scler. 2012;13(6):533–537.
  • Hobson E, 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(5–6):313–324.
  • Kwasnicka D, Keller J, Perski O, et al. White paper: open digital health – accelerating transparent and scalable health promotion and treatment. Health Psychol Rev.; 2022; Accepted for publication.
  • Skivington K, Matthews L, Simpson SA, et al. A new framework for developing and evaluating complex interventions: update of medical research council guidance. BMJ. 2021;374:n2061.
  • National Institute for Health and Care Excellence. Evidence standards framework for digital health technologies; London, 2018.
  • World Health Organization. Monitoring and evaluating digital health interventions: a practical guide to conducting research and assessment; Geneva, 2016.
  • Hobson E, Fazal S, Shaw PJ, et al. "Anything that makes life's journey better." Exploring the use of digital technology by people living with motor neurone disease. Amyotroph Lateral Scler Frontotemporal Degener. 2017;18(5–6):378–387.