In our review of the current literature, we surveyed articles pertaining to telehealth and telerehabilitation and SCI, published 2016–present, while using reference lists to perform snowball searches for missed literature. We found that recent teleSCI literature represented four main concepts: preventive health and wellness after SCI; management of chronic pain, anxiety, and depression; restorative and rehabilitation care; and disaster planning.
Preventive Health and Wellness
After initial hospitalization for SCI, there is a significant adjustment period during which patients and families must integrate complex compensatory strategies into their routine to prevent long-term complications. Common issues include adjustment difficulties, ongoing challenges with pain and spasticity, and bowel and bladder management, as well as skin care and wound prevention. Even after integrating these skills, patients who have paraplegia or tetraplegia remain at high risk for long-term complications of physical inactivity, such as obesity, diabetes mellitus, and physical deconditioning, leading to an increased risk for pneumonia, cardiovascular events, and osteoporosis-related frailty. As a result, much recent teleSCI research focuses on preventive health and general wellness interventions primarily involving self-management of SCI [43–45], physical exercise [18, 46–49], and nutrition and weight management .
Three studies focused on self-management of SCI-related care such as self-directed goal attainment in bladder and bowel management , empowerment and engagement in medical care , and daily care such as medications and skin checks . Efficacy for the self-management studies demonstrated mixed results. One study using the Interactive Mobile Health and Rehabilitation (iMHere) phone application was able to significantly reduce urinary tract infection incidence (P = 0.03) using content and reminders related to bladder management . Another study, using a publicly available web program called SCI & U (available at https://www.sci-and-u.com/users/sign_in), did not find a significant impact on desired outcomes. However, participants qualitatively voiced an overall positive impact . The last study, which used telephone coaching to promote active involvement in medical care, found significant improvements in patient activation (P = 0.03), social/role activity limitation (P = 0.04), and service/resource awareness and utilization (P = 0.02) over control groups .
Five studies that had a primary focus on physical exercise and endurance had mixed results [18, 46–49]. All interventions used some form of coaching to promote exercise. One team used web-based didactic content, assigned exercise homework, and then evaluated exercise diaries remotely every 2 weeks to adjust exercise regimens via email or phone . Another provided a home exercise tool kit and exercises via a mailed DVD but had a psychologist provide telephone coaching to encourage physical activity every 1 to 2 weeks . Three interventions used video telehealth either for coaching check-ins and/or real-time exercise monitoring [46, 48, 49]. Additionally, one intervention employed the use of a bioharness to gather physical activity data in real time, while using video teleconference to provide synchronous coaching and feedback about exercise form and intensity .
Three studies demonstrated large effects on physical activity and tolerance outcomes [46, 47, 49], but only one study demonstrated statistically significant improvements in exercise tolerance (p ≤ 0.05) . The last study conducted a feasibility case series that found improvements in physical activity and exercise tolerance. Interestingly, while several interventions did not significantly impact physical activity, several demonstrated significant impact on secondary outcomes such as satisfaction with life  and quality of life , depression [18, 47], anxiety , health participation , and meaningful life experience , suggesting physical activity interventions may have wider applicability in this population. Only one of these studies focused on nutrition, which found significant improvement in secondary outcomes regarding choice of balanced meals, reading food labels, logging meals, and monitoring food portions .
Chronic Pain, Anxiety, and Depression
Approximately 60–70% of individuals with SCI experience chronic pain and spasticity as a result of their neurologic injury [51, 52]. Furthermore, there is a well-established association between untreated chronic pain and anxiety and depression that often impacts functional independence and results in overall lower quality of life [53, 54].
Four studies addressed at least one or more components of chronic pain or associated mood disorders in SCI [20•, 55–57]. Three studies used web-based programs with self-guided content using psychotherapy techniques involving relaxation such as mindfulness, psychoeducation, and suggested skills practice between sessions. Two studies targeted chronic pain as a primary outcome while evaluating depression and anxiety as secondary indicators of improved quality of life after the pain intervention [55, 56]. Both found significant improvements in at least one pain-related measure, as well as in anxiety, depression, and pain catastrophizing. Another study aimed to reduce depression and anxiety while seeking to improve well-being after providing 10 weeks of Electronic Personal Administration of Cognitive Therapy (ePACT), which consisted of web-based modules, homework, and email/phone support from a clinician . However, the intervention had equivocal benefit with a significant change in the intervention group from pre- and postintervention but no significant differences when comparing the intervention group to the control group, possibly due to systematic differences between the groups at baseline.
A newer trend using brain-computer interfacing to provide neurofeedback to patients with central neuropathic pain from SCI, using portable electroencephalograms (EEGs), has demonstrated promise. In this intervention, patients and caregivers were trained on proper placement and set-up of the equipment, visited after 2 weeks to assess proper use, and provided check-ins in person and by phone as needed. Using the home EEG and a tablet, participants could view graphical representations of their brain waves on a bar graph or through a race car game. This graphical feedback allowed participants to selectively train their brains to increase alpha waves (i.e., brain waves produced when one is calm and relaxed), while attempting to downregulate theta and beta bands (i.e., EEG signatures associated with pain). At completion, 80% of participants were able to achieve alpha-wave upregulation and had significant improvement in reported pain; and 53% had a greater than 30% improvement in pain. Though this modality shows early promise, more studies are needed to determine the effectiveness of this approach before wider clinical implementation can begin.
Restorative and Rehabilitation Care
SCI rehabilitation is a highly specialized field that requires experience and expertise that are often unavailable outside academic medical centers, often located in urban settings. Studies show that patients achieve better functional outcomes when they are treated by trained SCI rehabilitation clinicians [58–60]. For this reason, expansion of teleSCI programs could significantly expand reach and access of SCI expertise, promoting greater equity in care. Four studies addressed some component of rehabilitation care, such as physiotherapy , transfer training , discharge to home from inpatient rehabilitation transitional support , and vocational rehabilitation for job-seeking adults . They are described below.
Strength and Skills Training
Two studies involved locomotion, which is a key factor in achieving greater functional independence after injury [61, 62]. One study used a website for transfer training that included detailed education and training around safe wheelchair transfers in various situations, accompanied by pictures, videos, and quizzes to ensure comprehension . There were significant improvements in the Transfer Assessment Instrument from baseline to completion of the course. These improvements did not significantly differ from those of participants who were trained using the in-person equivalent. Since only 40% of wheelchair users with SCI report being trained by a professional , this freely available intervention (available at: http://www.upmc-sci.pitt.edu/book/independent-transfers-training) could greatly improve transfer technique and safety where SCI expertise is limited.
Another study employed virtual reality (VR) to conduct a home-based training program aimed at improving lower-limb strength, balance, and mobility . Participants were set up with VR systems and foot sensors that were used to simulate movement of avatar feet within a virtual environment. Over 4 weeks, participants completed 16–20 sessions asynchronously. A therapist visited the home weekly to assess training data and increased repetitions/difficulty as participants progressed. Participants had five games that trained ankle dorsal flexion, knee extension, leg abduction, and leg adduction in both seated and upright positions. After 4 weeks of regular use, participants demonstrated significant improvements in lower extremity muscle strength, balance (Berg Balance Scale), and functional mobility (Timed Up and Go).
Transition to Community
After discharge from inpatient rehabilitation, the first several weeks at home following an SCI are challenging for most patients and their families. In addition to psychosocial adjustment, they usually encounter numerous unexpected challenges that can compound the stress of transition . However, living away from urban centers where specialty care is often centered usually results in lower service utilization . TeleSCI care is one way to bridge this gap. One study evaluated the use of telephone check-ins with newly diagnosed SCI patients during the transition from inpatient rehabilitation to the home setting in Bangladesh . Participants were contacted every 2 weeks for 1 year after discharge and monthly during the second year. Healthcare providers assessed for complications and provided case coordination as needed. However, no effectiveness analyses were performed; and the primary outcome of mortality was equal between experimental and standard-of-care groups, suggesting that additional work is needed before this intervention can be recommended.
One case report described challenges of community transitions in low- and middle-income countries and provided two cases where check-ins comprised a combination of email, text, or videos sent to rural patients with a return of pictures/videos/text to clinicians for feedback. After an initial stabilization period of 4 weeks, the team began providing new videos of customized exercises five times a week. Live video visits with the care team were done as needed for each patient, with demonstrable success .
A review of literature reveals that individuals living with SCI and returning to work are younger with less severe injury and more functional independence. Common barriers identified were physical limitations, education, and training. Many of these individuals were employed prior to the injury, however, and face many challenges postinjury secondary to organizational-, structural-, and system-level barriers, offering a unique opportunity for home-based telework [68–70].
One study examined the impact of web-based content to aid those with SCI in job-seeking, interviewing, and career development . Participants were emailed standardized email prompts to complete modules on a weekly basis for 4 weeks. Though there was no observable impact on the primary outcome (job procurement self-efficacy), there was a small positive impact on optimism.
Within the SCI professional community, there is a growing focus on planning for disasters . Access to transportation, medical supplies, and caregivers is often impacted during natural disasters and pandemics. Telehealth presents another opportunity to support individuals living with SCI in the community during difficult events. Three case studies discussing specific challenges encountered during disaster events identified various ways telehealth served patients with SCI.
One report described how telehealth was used during a very large month-long wildfire that claimed the home of a recently discharged patient . Although the patient was able to evacuate in time to avoid injury, some essentials were lost in the fire. Telehealth allowed the patient to maintain contact with clinical care, while the team re-ordered durable medical equipment and supplies that were lost in the fire.
Two case studies describe how telehealth supported individuals during the COVID-19 pandemic. In one case, a previously independent patient with paraplegia was hospitalized due to worsening of his condition resulting in new-onset tetraplegia . Soon after the pandemic started, the patient was discharged home but faced significant barriers in using his previous supports, resulting in financial hardship, food insecurity, two visits to the emergency room for bowel impaction, and depression due to isolation from his family. Telehealth allowed the care team to serve as a safety net while coordinating additional community resources. In another case study, a patient living in a rural area in the northeast part of the USA experienced extreme difficulty coordinating in-home caregivers during the pandemic . His inability to find reliable care resulted in a decision to move cross-country to be closer to family who would help. Telehealth visits were then used between SCI teams from his departing and arriving location to coordinate care and a warm handoff, while facilitating safe transportation for this patient.