Tele-treatment of patients with amyotrophic lateral sclerosis (ALS)

Nijeweme-d’Hollosy, Wendy Oude; Janssen, Emile P.F.; Veld, Rianne M.H.A. Huis in ’t; Spoelstra, Jos; Vollenbroek-Hutten, Miriam Marie Rosé; Hermens, Hermie

doi:10.1258/135763306777978434

Cited by 31 publications

(44 citation statements)

References 3 publications

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“…Telehealth monitoring of pulmonary hygiene training and follow‐up in this population has also been described . Finally, nonclinical innovative services, such as Web sites which allow persons with ALS to directly schedule telehealth services, participate in chat rooms, and access patient education resources have been described …”

Section: Specific Telehealth Applications For Neuromuscular or Musculmentioning

confidence: 99%

“…Several studies have examined outcomes for telehealth interventions for persons with ALS, and found modest benefit for both objective and subjective outcome measures. High levels of patient acceptance and satisfaction with telehealth services have been reported, while one study noted patients expressed preference for face‐to‐face visits for discussions of more sensitive psychosocial topics . A recent study by Geronimo and colleagues found high levels of patient satisfaction with video teleconferencing in lieu of face to face visits among persons with ALS .…”

Section: Specific Telehealth Applications For Neuromuscular or Musculmentioning

confidence: 99%

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Telehealth applications for outpatients with neuromuscular or musculoskeletal disorders

Howard

Kaufman

2018

Muscle and Nerve

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Telehealth describes the provision of medical services remotely through technology, and may enhance patient access to specialty care services. Although teleneurology has expanded widely since the introduction of telestroke in 1999, telehealth services for outpatients with neuromuscular or musculoskeletal disorders are less widespread. In this narrative review, we will describe the current technology, applications, outcomes, and limitations of this dynamically growing field. Evidence for telehealth applications related to neuromuscular diseases, palliative care, specialized multidisciplinary services, and musculoskeletal care are reviewed. With growing demand for specialized services and finite resources, telehealth provides a promising avenue to promote access to high-quality care, decrease the cost and burden of travel for patients, and with the expansion of software to personal computing and mobile devices, offer flexible, low-overhead practice opportunities for clinicians. Providers embarking on careers in telehealth should be aware of current legal restrictions impacting care to minimize risk and avoid liability. Muscle Nerve 58: 475-485, 2018.

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Section: Specific Telehealth Applications For Neuromuscular or Musculmentioning

confidence: 99%

Section: Specific Telehealth Applications For Neuromuscular or Musculmentioning

confidence: 99%

Telehealth applications for outpatients with neuromuscular or musculoskeletal disorders

Howard

Kaufman

2018

Muscle and Nerve

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“…In addition, tele-health has the potential for local and community-based services to engage with the MDC in real time and to partner the MDC in the decision-making process 77,78. In the case of respiratory care, the benefits of tele-health for ALS patients have been reported 79,80. The setting and monitoring of invasive81 and non-invasive ventilation82 where the parameters for clinical assessment can be downloaded from a remote location have strong application in a tele-health model of care.…”

Section: Introductionmentioning

confidence: 99%

“…The setting and monitoring of invasive81 and non-invasive ventilation82 where the parameters for clinical assessment can be downloaded from a remote location have strong application in a tele-health model of care. Tele-health can be provided to ALS patients in conjunction with or as follow-up to face-to-face visits with patients 80. Continuity of care and of symptom management are specific advantages of tele-health for ALS patients,78 and both patients and clinicians in ALS care have been shown to be receptive to tele-health80,81 One study showed that tele-health for ALS care impacted positively on health care utilization, patient survival, and patient functional status 82.…”

Section: Introductionmentioning

confidence: 99%

“…Tele-health can be provided to ALS patients in conjunction with or as follow-up to face-to-face visits with patients 80. Continuity of care and of symptom management are specific advantages of tele-health for ALS patients,78 and both patients and clinicians in ALS care have been shown to be receptive to tele-health80,81 One study showed that tele-health for ALS care impacted positively on health care utilization, patient survival, and patient functional status 82. Nurse-led tele-health may also be beneficial if initiated in the later stages of the disease 79.…”

Section: Introductionmentioning

confidence: 99%

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Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach

Hogden¹,

Foley²,

Henderson³

et al. 2017

JMDH

141

107

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Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, leading to death within an average of 2–3 years. A cure is yet to be found, and a single disease-modifying treatment has had a modest effect in slowing disease progression. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients’ quality of life, by providing coordinated interprofessional care that seeks to address the complex needs of this patient group. This review examines the nature of specialized multidisciplinary care in ALS and draws on a broad range of evidence that has shaped current practice. The authors explain how multidisciplinary ALS care is delivered. The existing models of care, the role of palliative care within multidisciplinary ALS care, and the costs of formal and informal care are examined. Critical issues of ALS care are then discussed in the context of the support rendered by multidisciplinary-based care. The authors situate the patient and family as key stakeholders and decision makers in the multidisciplinary care network. Finally, the current challenges to the delivery of coordinated interprofessional care in ALS are explored, and the future of coordinated interprofessional care for people with ALS and their family caregivers is considered.

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