The current use of telehealth in ALS care and the barriers to and facilitators of implementation: a systematic review

Figures & data

Table 1 Definitions of implementation determinants.

Domain	Construct	Definition
Innovation characteristics	Core components	The essential and indispensable elements of innovation.
	Complexity	To what extent the telehealth innovation is difficult to startup, use or implement.
Patient/caregiver characteristics	User-experiences and benefits	The user-experiences of the patient and caregiver with the telehealth innovation and the perceived benefits or drawbacks.
	Compliance	The ability or willingness of the end-user to use the telehealth innovation
Healthcare professional characteristics	User-experiences and benefits	The user-experiences of the healthcare professional with the telehealth innovation and the perceived benefits or drawbacks.
Inner and outer setting	Available resources	The available software, equipment, support, training, education and time required for operating the telehealth innovation.
	Finance and legislation	The available financial and legislative constructs required for operating the telehealth innovation.

Based on the consolidation framework for implementation research.

Figure 1 Literature selection flow diagram.

Table 2 Details of telehealth studies.

Publication	Type of telehealth	Study design	Recruitment strategy	Study population	Characteristics of telehealth users (patients)
Geronimo et al. (10)	Videoconferencing	A pilot study investigating feasibility and acceptability.	A convenience sample consisting of patients who were deemed potentially eligible and would likely benefit from VC.	Telehealth (N = 20) Caregiver (N = 20) HCP (N = 15)	Diagnosis (ALS), Age (M = 60), Male (64%), ALSFRS-R (M = 24)
Nijeweme-d’Hollosy et al. (12)	Videoconferencing	A pilot study investigating the effect of VC on the quality of care.	A convenience sample consisting of patients who liked working with computers.	Telehealth (N = 4)	Diagnosis (ALS), Age (M = 42), Male (75%)
van de Rijn et al. (13)	Videoconferencing	A retrospective chart review investigating the feasibility and utility of VC.	Patients who had at least one VC were included.	Telehealth (N = 97) HCP (N = 5)	Diagnosis (ALS), Age (M = 58), Male (63%), V (57%), G (23%)
Selkirk et al. (11)	Videoconferencing	A retrospective cohort study investigating feasibility and effectivity.	Patients who received care for one year at the ALS center were included. Patients chose telemedicine based on preference, disability level or distance from the clinic.	Telehealth (N = 32) Usual care (N = 36)	Diagnosis (ALS), Age (M = 63), Male (100%), V (72%), G (68%)
Pulley et al. (14)	Videoconferencing, Store and forward method	A pilot study investigating feasibility and acceptability.	Patients were included regardless of distance from the clinic, mobility or disease severity.	Telehealth (N = 18) HCP (N = 7)	Diagnosis (ALS), Age (M = 64), Male (66%), ALSFRS-R (M = 25)
Vitacca et al. (16)	Telephone-assisted self-monitoring	A pilot study investigating feasibility and patient/caregiver’s satisfaction.	Patients with a caregiver were included.	Telehealth (N = 40) Caregiver (N = 40)	Diagnosis (ALS), Age (M = 63), Male (60%), ALSFRS-R (M = 31), V (78%), G (50%)
Vitacca et al. (17)	Telephone-assisted self-monitoring	A prospective study investigating feasibility and cost-effectiveness.	Patients who lived <80 km from the center were included.	Telehealth (N = 39) Caregiver (N = 39) HCP (N = n.r.)	Diagnosis (ALS), Age (M = 62), Male (54%), V (69%)
Vitacca et al. (18)	Telephone-assisted self-monitoring	A prospective study investigating nurse’s utilization and costs.	Patients with an ALSFRS-R <40 were included.	Telehealth (N = 73)	Diagnosis (ALS), Age (M = 61), Male (60%), ALSFRS-R (M = 28), V (49%), G (34%)
Paneroni et al. (19)	Telephone-assisted self-monitoring	A pilot study evaluating the feasibility of long-term self-monitoring.	Non-bulbar patients with a caregiver and an ALSFRS-R <35 were included.	Telehealth (N = 12)	Diagnosis (ALS), Age (M = 53), Male (75%), ALSFRS-R (M = 20), V (58%)
Ando et al. (15)	App-based self-monitoring	A trial investigating the use and feasibility of telemonitoring.	Opportunity sampling was used to recruit patients.	Telehealth (N = 13)	Diagnosis (MND), Age (M = 66), Male (62%), ALSFRS-R (M = 22), V (100%)
Ando et al. (20)	App-based self-monitoring	A qualitative study with semi-structured interviews on telehealth use.	Opportunity sampling was used to recruit patients who had completed a trial of telemonitoring.	Telehealth (N = 7) Caregiver (N = 5)	Diagnosis (MND), Age (M = 63), Male (71%), V (100%)
Hobson et al. (21)	App-based self-monitoring	A randomized controlled pilot and feasibility study investigating the feasibility of an RCT.	Patients with ALS, PMA or PLS who showed a ≥2 point decrease on the ALSFRS-R in the last 18 months were included.	Telehealth (N = 20) Usual care (N = 20) Caregiver (N = 37) HCP (N = 1)	Diagnosis (ALS, PMA, PLS), Age (60), Male (70%), V/G (40%)
de Almeida et al. (22)	Remote NIV monitoring	An exploratory trial testing safety, acceptance, and accuracy of remote NIV monitoring.	Volunteering patients were included.	Telehealth (N = n.r.) HCP (N = 9)	Diagnosis (ALS), V (100%)
de Almeida et al. (23)	Remote NIV monitoring	A prospective, quasi-randomized controlled trial investigating costs and cost-effectiveness.	Patients who used a “bi-level” NIV device were screened and assigned into a group according to their residential area.	Telehealth (N = 19) Usual care (N = 20)	Diagnosis (ALS), Age (M = 60), Male (70%), ALSFRS-R (M = 33), V (100%), G (0%)
Tura et al. (24)	Remote NIV monitoring	A preliminary trial investigating feasibility.	n.r.	Telehealth (N = 15)	Diagnosis (ALS), V (100%)
Pinto et al. (25)	Remote NIV monitoring	A prospective, quasi-randomized controlled trial investigating compliance, survival and healthcare utilization.	Patients who used a “bi-level” NIV device were assigned to one of two groups according to their residential area.	Telehealth (N = 20) Usual care (N = 20)	Diagnosis (ALS), Age (M = 60), Male (70%), ALSFRS-R (M = 33), V (100%), G (0%)

ALSFRS-R: revised ALS functional rating scale; G: patients with gastrostomy; HCP: healthcare professional; M: Mean; NIV: noninvasive ventilation; n.r.: not reported; V: ventilated patients; VC: videoconference.

Table 3 Determinants of implementation categorized according to the CFIR domains.

Publication	Innovation characteristics	Patient/caregiver characteristics	Healthcare professional characteristics	Inner and outer setting
Videoconferencing
Geronimo et al. (10)	Core components: Patients accessed VC through an internet browser using a unique ID code. The VC was attended by the patient, caregiver physician and nurse (other HCP’s were optional). Telehealth was found to be feasible. Complexity: Future changes to facilitate the use of VC include faster internet connection, compatibility with multiple types of hardware and internet browsers, direct eye contact through video, wider field of view and on-screen identification of HCP’s.	User-experiences and benefits: Patients experienced reduced travel time and burden. The lack of physical evaluation was disliked by caregivers. Compliance. Caregiver needed to assist patient. High comfort and familiarity with technology among patients.	User-experiences and benefits: HCP’s judged telehealth as not equal to in-person care. HCP’s lack the sense of touch. HCP’s found communication and making recommendations adequate. A large portion of HCP’s were unsatisfied with video and audio quality.	Available resources: The care protocol for telehealth was the same for in-clinic care, including similar staff requirement during consultations. Finance and legislation: n.r.
Nijeweme-d’Hollosy et al. (12)	Core components: VC between patient, caregiver and physician. A web-application accessible through a virtual private network with a general ALS website and an tele-treatment environment, including planned consultation hours, a chat room and VC. External IT organization provided support. Complexity: n.r.	User-experiences and benefits: Patients experienced reduced travel time. Patients were satisfied with telehealth and contact during VC. Compliance: Patients were willing to discuss most topics through VC, except for acceptance and end-of-life. Patients liked working with computers and caregivers needed to assist when patients were too impaired.	User-experiences and benefits: n.r.	Available resources: A HCP provided an initial instruction session for patients. Finance and legislation: n.r.
van de Rijn et al. (13)	Core components: Patients had to log into a virtual waiting room prior to VC. The VC was attended by the patient, caregiver and physician. HCP’s used a pager for troubleshooting technical issues. Complexity: All identified technical issues were related to video/ audio, none prevented VC from occurring. Audio issues were solved by using a phone.	User-experiences and benefits: It was less necessary to travel for consultations. Patients experienced time saving and a reduction in clinic burden. More continuity of care was seen in patients in a later phase of disease. Compliance: Patients were satisfied with VC. Majority of patients were assisted by caregiver. Patients in every phase of the disease preferred VC. Patients were willing to discuss most topics through VC.	User-experiences and benefits: HCP’s experienced easier communication with local therapist. HCP’s are uncertain about proper assessment and lack a physical examination. No time saving for HCP’s. Most topics could be discussed via VC.	Available resources: A team of coordinators and engineers of the telehealth division provided training and technical support to physicians and patients. Finance and legislation: There was a lack of reimbursement for telehealth.
Selkirk et al. (11)	Core components: Prior to a VC patients were evaluated by their local team, a nurse called patient to assess burden, QoL and ALSFRS-R-R, and patients’ needs were determined during a bi-weekly meeting of the medical team. The VC was attended by the patient, caregiver, local care team, nurse and neurologist (other HCP’s were optional). Complexity: n.r.	User-experiences and benefits: VC allows for more continuity of care throughout the disease. It was less necessary to travel for consultations. Quality of care was equivalent between regular care and telehealth. Compliance: n.r.	User-experiences and benefits: n.r.	Available resources: The care protocol for telehealth was the same for in-clinic care, including similar staff requirement during consultations. Finance and legislation: n.r.
Pulley et al. (14)	Core components: A home visit by a nurse for video recording of clinical assessments. Video of the assessments was cut and assessed by HCP’s. Reports by the HCP’s were sent to clinical director who created a care plan. The plan was conveyed through VC. The VC was attended by the patient, caregiver, clinical director and at-home nurse. Complexity: The lack of availability of patient and nurse delayed VC. Buffering of large video files was a major issue. Internet connection was often unstable and unpredictable.	User-experiences and benefits: It was less necessary to travel for consultations. Compliance: Patients were satisfied with telehealth, independent of ALS severity and distance from center. Comfort with using technology determines enthusiasm.	User-experiences and benefits: Mixed experiences with the ease of the process, lack of physical contact and time requirement. HCP’s had limited availability on clinic days. The information obtained from telehealth was sufficient. HCP’s assessed the video at their convenience.	Available resources: All member of the multidisciplinary team provided extensive training to the nurse in assessment skills. Clinic director conducted videoconferences with nurse at patient’s home. Inexpensive commercial devices were used. Finance and legislation: There was a lack of reimbursement for telehealth. There was no team conference to discuss a case.
Home-based self-monitoring
Vitacca et al. (16)	Core components: Patients performed daily at-home assessments of pulse oximetry. Weekly scheduled call from a nurse for a clinical interview, consultation planning, updating clinical data (oximetry) and redirecting to a general practitioner or specialist. There was a 24h availability of second-opinion by a respiratory therapist. A call-center facilitated communication. Complexity: n.r.	User-experiences and benefits: Patients were extremely satisfied with the nurse assistance. Patients had more confidence in handling the disease. 24h availability of second-opinion was valuable. Telehealth provided autonomy and continuity of information and care. Compliance: Majority of patients were assisted by caregiver. Caregiver spoke/assisted when patient lost speech. Devices were simple to use.	User-experiences and benefits: n.r.	Available resources: Nurse monitored 50 patients with a clinical ALS-card. On demand availability of a nurse during working hours. Providing 24/7 call-center service and second opinion by a general practitioner or specialist. No dedicated therapist needed for second opinion. Finance and legislation: System is believed to be sustainable in terms of cost and staff time required (no analysis conducted). Variety of fixed and variable costs.
Vitacca et al. (17)	Core components: Patients performed at-home assessments of MAC, pulse oximetry and airway suctioning. MI-E was provided for patients in which blood oxygen saturation could not be restored. Weekly scheduled call from respiratory therapist. Calls from patients were redirected by a nurse to one of the specialists for consultation or home-visit. A call-center facilitated communication. Complexity: n.r.	User-experiences and benefits: Fewer hospital admissions and emergency room visits. Patients experienced an increased feeling of security for home management and considered the intervention effective. Compliance: n.r.	User-experiences and benefits: HCP’s experienced an increased feeling of security for home management.	Available resources: On demand telephone access to a triage nurse who directed calls to a specialist. Therapist called patients weekly. Patients were trained to restore blood oxygen saturation through assisted coughing and emergency room visits. Finance and legislation: There was a lack of reimbursement for telehealth. Additional costs were home-visits and device rental. Intervention was shown to be cost-effective, due to reduced hospitalization costs.
Vitacca et al. (18)	Core components: Patients performed daily at-home assessments of pulse oximetry. Weekly scheduled calls from a nurse for a clinical interview, updating clinical data (oximetry) and redirecting to a general practitioner or specialist. In addition, patients could request calls 24/7. A call-center facilitated communication. An ALS card-of-risk guided telephone-accessed clinical interviews and facilitated monitoring, care and interoperability. Complexity: n.r.	User-experiences and benefits: n.r. Compliance: Caregiver needed to assist patients.	User-experiences and benefits: n.r.	Available resources: Providing on demand access to a nurse during working hours and 24/7 call-center service and second opinion by therapist. Providing nurses with training to use the ALS-card to monitor disease status and to guide clinical interviews. Clinical ALS-card saved time and expenses on telephone calls. Finance and legislation: Health expenditure policy needs optimization of staff’s costs. Large variety of fixed and variable costs. Costs were extrapolated on long-term steady-state telehealth activity, including other chronic diseases.
Paneroni et al. (19)	Core components: Patients performed daily assessments of PCEF, pulse oximetry and respiratory discomfort. Patients also reported changes in respiratory and clinical condition in a diary. Bi-weekly scheduled telephonic support from a physiotherapist. Data was mostly transmitted through email or telephone. Complexity: High number of daily assessments and complex of reporting.	User-experiences and benefits: n.r. Compliance: Caregivers needed to assist when a patient was too impaired. Patients showed low adherence with the monitoring protocol.	User-experiences and benefits: n.r.	Available resources: Provision of telephonic support by a dedicated therapist. Finance and legislation: n.r.
Ando et al. (15)	Core components: A tablet-style device was used by patients for answering questions and transferring nocturnal pulse oximetry data weekly. Patients could message the clinical team at any time. All patients received education on symptoms related to chest infections and respiratory management Complexity: n.r.	User-experiences and benefits: Compliance: Patients showed high levels of adherence with telemonitoring.	User-experiences and benefits: HCP’s had the ability to remotely monitor patient’s symptoms effectively and offer timely and appropriate support.	Available resources: n.r. Finance and legislation: n.r.
Ando et al. (20)	Core components: A tablet-style device that allows clinicians to monitor patient outside of the clinic, regarding their symptom changes, NIV related related issues, nocturnal blood oxygen saturation levels, and patient-ventilator interaction data. The system generated alerts for symptom worsening. Complexity: There were some technical issues, but these were often minor and quickly resolved. The message function lead to frustrations due to too small keys and short time allowance for formulating a message.	User-experiences and benefits: Patients experienced timely interventions, which resulted in improved physical and psychological well-being. Reduced number of (unnecessary) clinic visits, saving time and costs. Increased self-awareness was experienced by patients. Compliance: Patients were supportive of regular monitoring and generally experienced the use of technology as easy. Using the message function was frustrating and challenging for some patients.	User-experiences and benefits:n.r.	Available resources: n.r. Finance and legislation: n.r.
Hobson et al. (21)	Core components: A user-centered telehealth service including weekly assessments of body weight and balance, and using a tablet to complete questions on functional ability, progression, symptoms, well-being. A nurse could view the data on a website; she phoned patients, expedited appointments and lialised the medical team. The system generated alerts for disease worsening. Complexity: There were some technical issues, but these were resolved. The connectivity of wifi-enabled scales was unreliable. The software was user-friendly and accessible for patients/caregivers.	User-experiences and benefits: Patients/caregivers experienced improved awareness of the disease, reassurance due to increased monitoring and a better connection with the HCP’s. Face-to-face technology training was perceived as important. Patients/caregivers would recommend telehealth to others. Compliance: Good adherence to self-monitoring was observed. Accordingly, self-monitoring was easy, not tiring or time consuming, and not distressing. Some experienced difficulty using technology due to upper limb disability. Caregivers assisted when patients were too impaired. Low perceived ability to master technology, due to inexperience with technology.	User-experiences and benefits: Telehealth use was very easy and cost little time. The nurse could identify early problems, however the information from monitoring was sometimes not detailed enough. Repetitive alerts were frustrating for the nurse and required more time. On most occasions the information from monitoring was sufficient for a HCP to make appropriate decisions.	Available resources: Provision of training for technology use and provision of technical support. Finance and legislation: n.r.
Remote NIV monitoring
de Almeida et al. (22)	Core components: An NIV device with flexible use of electronic slots and bi-directional data transmission was used for remote monitoring.A helpline was available for technical issues or worsening of clinical condition. Technician monitored NIV data and flagged physician for immediate change of settings. Complexity: The system was suitable and worked well. The connection was found to be robust for transmission of data and setting changes. The speed of data extraction was a limitation. There was need of a fixed telephone line. There were issues with confidentiality.	User-experiences and benefits: Reduced need to travel to adjust NIV settings. Compliance: Positive comments from patients on easiness of setting arrangements. Automatic monitoring limited the need for manual intervention.	User-experiences and benefits: HCP’s lacked the sense of touch. The system eased communication with patient. HCP’s had the ability to remotely monitor and change NIV settings.	Available resources: Helpline support was provided. Testing phase was required to test safety, acceptability and accuracy. Hiring technician for monitoring of NIV data and checking the procedure and mistakes. Finance and legislation: Unresolved issues with licensure, reimbursement, telecommunications infrastructure and robust analysis of cost- effectiveness.
de Almeida et al. (23)	Core components: An NIV device with bi-directional data transmission was used for remote monitoring. Complexity: n.r.	User-experiences and benefits: Improved patient enablement and confidence with handling disease. Reduced need to travel to adjust NIV settings. Fewer office visits and hospital admissions. Compliance: Automatic monitoring limited the need for manual intervention.	User-experiences and benefits: HCP’s had the ability to remotely monitor and change NIV settings.	Available resources: Higher number of setting changes at start, but lower over the entire period. Fewer office visits and hospital admissions. Finance and legislation: Big initial investment needed, but cost effective over time. Device rent was higher in remote monitoring group.
Tura et al. (24)	Core components: An NIV device with flexible use of electronic slots was used for remote monitoring. The wireless connection was found to be robust. A general practitioner or specialist could see data on the web application and send a (voice) message to the patient. Complexity: The device was easy to handle, with additional remote control and connection to a smartphone, personal digital assistant or notebook.	User-experiences and benefits: Reduced need to travel to adjust NIV settings. Compliance: Patients reported devices as easy to use, and device settings were easy to adjust. The remote control was appreciated. Automatic monitoring limited the need for manual intervention.	User-experiences and benefits: HCP’s had the ability to remotely monitor and change NIV settings.	Available resources: n.r. Finance and legislation: Lack of information on cost-effectiveness.
Pinto et al. (25)	Core components: An NIV device with bi-directional data transmission was used for remote monitoring. A helpline was available for NIV compliance follow-up, setting changes or medical advice. Technician monitored NIV data and flagged physician for immediate change of settings. The NIV device had bi-directional data transmission. Complexity: The system was suitable and worked well. The speed of data extraction was limited. There was a need of a fixed telephone line.	User-experiences and benefits: Fewer hospital admissions. Reduced need to travel to adjust NIV settings. Compliance: Automatic monitoring limited the need for manual intervention.	User-experiences and benefits: HCP’s had the ability to remotely monitor and change NIV settings.	Available resources: Providing helpline support. Testing phase was required to test safety, acceptability and accuracy. Hiring technician for monitoring of NIV data. Higher number of NIV setting changes at start, but 50% lower over the entire period. Finance and legislation: Reduced hospitalization costs, due to fewer hospital admissions.

ALSFRS-R: revised ALS functional rating scale; HCP: healthcare professional; MAC: mechanical assisted coughing; MI-E: mechanical in-exsufflation; NIV: noninvasive ventilation; n.r.: not reported; PCEF: peak cough expiration flow; QoL: quality of life; VC: videoconference.

Table 4 The barriers to and facilitators of telehealth use/implementation in ALS care.

Facilitators
Innovation characteristics	Complexity
	Robust wireless connection
	User-friendly devices
	Additional aids for devices
Patient/caregiver characteristics	User-experiences and benefits
	Reduced travel time and burden
	Reduced clinic burden
	Fewer hospital admissions/ emergency room visits
	Increased feeling of enablement/ self-confidence
	Increased feeling of security
	Compliance
	Easy to use devices
	Comfort and familiarity with using technology
	Caregiver assistance
	Automatic monitoring
	High adherence to self-monitoring
Healthcare professional characteristics	User-experiences and benefits
	Increased feeling of security
	Insight into remote monitoring of data
	Better communication
Inner and outer setting	Available resources
	Ongoing support for end-users
	Training of end-users
	Standardized clinical assessment (card-of-risk)
	Finance and legislation
	Sustainable in costs and time requirement
	Cost-effective MI-E rental/ NIV use
	Inexpensive commercial devices
	Reduced hospitalization costs
Barriers
Innovation characteristics	Complexity
	Cumbersome monitoring protocol
	Technical issues
	Slow internet connection
	Slow data extraction/ buffering
Patient/caregiver characteristics	User-experiences and drawbacks
	Lack of physical evaluation/contact
	Compliance
	Low adherence to self-monitoring
	Unwilling to discuss sensitive topics through telehealth
Healthcare professional characteristics	User-experiences and benefits
	Lack of physical evaluation/ contact
	Uncertainty about comprehensive medical assessment
	No time saving/ costing extra time
Inner and outer setting	Finance and legislation
	Big initial investment
	Large variety of fixed and variable costs
	Lack of reimbursement
	Lack of cost-effectiveness analyses

ALSFRS-R: ALS functional rating scale; HCP: healthcare professional; G: patients with gastrostomy; M: Mean; MAC: mechanical assisted coughing; MI-E: mechanical in-exsufflation; NIV: noninvasive ventilation; n.r.: not reported; PCEF: peak cough expiration flow; QoL: quality of life; V: ventilated patients; VC: videoconference.

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