The Use of Telehealth to Enhance Care in ALS and other Neuromuscular Disorders

Abstract

Telehealth has the potential to improve the efficiency of healthcare while reducing the burden on patients and caregivers. Encounters can be synchronous or asynchronous. When used for care of those with amyotrophic lateral sclerosis (ALS) by individual health care providers or by a multidisciplinary team, synchronous telehealth is feasible, acceptable, may produce outcomes comparable to those of in-person care, and is cost effective. Individuals with ALS who use telehealth tend to have lower physical and respiratory function and to live farther from an ALS clinic than those who exclusively attend in-person clinic visits. Asynchronous telehealth can be used as a substitute full multidisciplinary visits, or for remote monitoring of pulmonary function, gait/falls, and speech. Barriers to implementing telehealth on a wider scale include disparities in access to technology and challenges surrounding medical licensure and billing, but these are being addressed. K E Y W O R D S ALS, mHealth, mobile health, telehealth, telemedicine 1 | INTRODUCTION TO TELEMEDICINE AND TELEHEALTH Today's healthcare landscape contains many references to, and examples of, telemedicine and telehealth. Sometimes, these terms are used interchangeably. Generally, telemedicine is defined as a remote interaction between a clinician and a patient. This is the traditional way most people think of telemedicine. Telehealth is the provision of a broader range of services remotely. 1 For patients with neuromuscular diseases, this can include collection of data on clinical measures such as respiratory function, gait, falls, muscle strength, and the rate and quality of speech.Telehealth encounters can be synchronous or asynchronous. In synchronous encounters, information is transmitted in both directions during the same period of time. These can be binary transmissions between patients or caregivers and healthcare providers, or multiperson encounters with other healthcare providers or family members interacting simultaneously. A live videoconference between a patient, his or her caregiver, and a healthcare provider is an example of synchronous telehealth. Asynchronous encounters, also sometimes called the "store and forward" method, occur when information is collected at one time and then forwarded for review at another time. Examples of this include taking photographs, filming videos, or recording medical data (respiratory, cardiac, gait, etc.) at a location remote from the Abbreviations: AAN, American Academy of Neurology; ALS, amyotrophic lateral sclerosis;

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“…Multidisciplinary ALS consults have been sparsely done through telemedicine, either by live videoconferences on real-time, synchronous [12][13][14][15][16][17][18][19][20][21][22][23][24] or though the store-and-forward method, asynchronous [25]. Videoconferences connect the multidisciplinary ALS teams at the tertiary centres to the patients at home, or to the local community hospitals/ health centres [12,21,22].…”

“…Despite negative aspects (video/audio problems; no physical examination; no body language cues; more impersonal, less emotional connection; lack of privacy in individual conversations between the patient/ carer and the team), benefits included continuing providing care, understanding home dynamics of patients/ carers dynamics, no travel requirements, time savings in addition to less fatigue and stress for the patients, who were more comfortable and talkative [16]. Two modalities of care were further assessed -full multidisciplinary visits with the ALS team on ALS clinic days or 1-on-1 visits with individual ALS healthcare providers on other days [17]. The televisit modality was preferred by the patients living farthest, also the ones having poorer physical and respiratory function and more likely to use NIV [17].…”

“…Two modalities of care were further assessed -full multidisciplinary visits with the ALS team on ALS clinic days or 1-on-1 visits with individual ALS healthcare providers on other days [17]. The televisit modality was preferred by the patients living farthest, also the ones having poorer physical and respiratory function and more likely to use NIV [17]. Despite patient satisfaction, good acceptance and reduced time burden, psychological and emotion issues have also been identified as needing to be discussed with face-to-face contact.…”

“…The Penn State Health Hershey ALS Center is assessing movement in relationship to falls in ALS at home through UL and LL wearable devices as well as a pendant monitor assessing general activity [17]. Developing an automated fall detection algorithm is planned [17].…”

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“…In the framework of these clinics, there are children with numerous neuromuscular disorders such as dystrophinopathies, spinal muscular atrophy, myopathies and rare genetic disorders. Previously published studies in neuromuscular literature explicitly point out the numerous benefits of telemedicine applications [39,45,46].…”