Various authors have noted the importance of providing continued, regular, specialized follow-up care following discharge from rehabilitation (Cox et al. 2001; Dryden et al. 2004; Ernst 1998). In a recent review, (Bloemen-Vrencken et al. 2005) described various follow-up programs for persons with SCI. These authors noted that the vast majority of the papers in this area offered little more than a description of the program with five of these being identified as either experimental or quasi-experimental in nature. Of these, two studies examined the effect of various models of care associated with routine after-care (Dinsdale et al. 1981; Dunn et al. 2000), while the remaining 3 studies focused on evaluations of telehealth applications (specifically telemedicine) or nursing education for the prevention of pressure sores or UTIs (Barber et al. 1999; Phillips et al. 1999; Phillips, Vesmarovich et al. 2001). The present section describes the literature examining different approaches to the provision of follow-up care, recognizing that several of these involve the investigation of the role of telehealth applications.
Trezzini et al. (2019) performed a needs assessment of 490 community-dwelling individuals with SCI using a custom survey. They found a perceived high need for improved healthcare, equipment, and technical aids, as well as specialist, multidisciplinary SCI care. While the least fulfilled needs for services were peer support, support for family caregivers, and psychological counselling. This is similar to the results found by Cox et al. (2001), who performed a needs assessment of 54 community-dwelling individuals with SCI using structured telephone interviews. Some of the issues identified as the greatest areas of need included dealing with physical changes, transportation, work issues, ongoing education, and pain management. The primary barriers to needs being met were overwhelmingly related to limitations of local expert knowledge but also included inadequate funding, complicated processes or service fragmentation and not knowing where to go for help. Preferred service delivery options in order of preference included telephone advice, home visits, SCI outpatient clinics, community-based service, and regional hospital clinics (Cox et al. 2001). Similar suggestions have been provided by clinicians, especially as they observe the consequences of inadequate care received by some individuals upon discharge from inpatient rehabilitation programs (Vaidyanathan et al. 2004). Despite these reports, little direct evidence has been established for the effectiveness of different methods of providing follow-up care.
Telehealth applications seem especially amenable to the provision of follow-up care given the typical care model of specialized health care services centralized in large urban centers that must continue to meet the needs of patients as they return to their disparate communities and as they link with primary care practitioners, who often lack specialized knowledge about optimal SCI management. Dallolio et al. (2008) conducted a multi-center RCT (n=127) across three centers in Italy, Belgium, and the UK that employed a series of telemedicine videoconferences that served to assess the risk of secondary complication development in informing prevention and treatment recommendations and also to address issues that would enhance function. Overall, patients that received the telemedicine sessions did not show significant increases in FIM or SCIM II gains, nor reductions in secondary complication development as compared to those who underwent routine follow-up visits. However, site-by-site analysis demonstrated that patients participating in the telemedicine intervention at the largest site (Italy, n=59 of 127) did show significantly increased functional benefits. In addition, when considering participants across all three sites, patients were generally more satisfied with their care when receiving telemedicine visits as an adjunct to their regular care.
Earlier studies have also suggested that telehealth has promise in delivering education directed towards preventing secondary complications – most notably pertaining to pressure sore management. Vesmarovich et al. (1999) and colleagues published two separate reports noting the potential of a telehealth application (i.e., Picasso Still-Image Videophone) in managing and preventing further pressure sores (Phillips et al. 1999; Vesmarovich et al. 1999). In an exploratory pilot study using a pre-post study design (n=8), Vesmarovich et al. (1999) reported that this approach facilitated education, allowing it to be provided at the point of need, thereby reinforcing previous inpatient rehabilitation education. Phillips et al. (1999) compared the same videophone technology to telephone-only consultation or standard care in a prospective controlled trial (n=37) investigating participants newly discharged from inpatient rehabilitation to home. Standard care consisted of access to a helpline that offered free information and counseling over the study period. The videophone group received weekly counseling sessions focusing on self-checking for pressure ulcers and other related education via videophone for 6-8 weeks followed by weekly telephone counseling for 4-6 weeks. Similar activities were conducted with the telephone group for 10 weeks following discharge. No significant differences were reported across the three groups with respect to doctor/hospital/emergency department visits, calls to helpline, pressure sore occurrences/characteristics, or employment status. The videophone group reported the highest number of ulcers over a variable follow-up period of 7±2 months but this was attributed to more stage I and II ulcers being identified using this approach. In addition, participants in the videophone group had the highest rate of return to work. The authors did note that this study was severely limited by inadequate sample size, inability to control for confounding variables, and non-randomized design therefore the level of evidence assigned to this article has been downgraded to Level 4. Power calculations assuming 80% power revealed that a sample size of 120 would have been required to detect an effect of the intervention in increasing post-injury employment by 5%.
More recently, Shem et al. (2017) examined the effect of video telemedicine with iPads on healthcare utilization and medical management in a pre-post test of individuals with SCI. Individuals were able to connect and discuss a variety of medical issues (e.g., general hospital follow-up, SCI primary care, medications, specialty topics) with an SCI specialist, without needing to travel to a physician’s office. Although a statistical comparison of healthcare utilization was not conducted, trends in descriptive data suggest that patients who utilized more telemedicine visits reported fewer emergency department visits and hospitalizations. All participants sought care from a physician in person at some point during the study. Results from the program satisfaction survey were positive, as participants felt comfortable about their privacy, found the iPad easy to use and 100% reported that they would like to continue the program. However, measures relating to the quality of life and depression were not statistically significant. Given the small sample size, and descriptive and non-conclusive findings of this study, future research is necessary to determine the efficacy of iPad telemedicine.
In an observational study, Kim et al. (2012) conducted a retrospective survey evaluating the telerehabilitation needs and opinions of both health professionals and individuals with SCI. From the prescriptive of health professionals, the vast majority were aware of telemedicine and interested in providing it; however, 86.1% reported that they were inexperienced in providing telerehabilitation care. Additionally, the majority of health professionals had concerns relating to medical responsibility and malpractice, as well as the financial burden associated with the initial set up of telerehabilitation services. Despite this, health professionals recognized a need for telerehabilitation services as SCI rehabilitation was the most frequently requested area of telerehabilitation services. From the perspective of individuals with SCI, several key differences exist. Individuals with SCI were less aware of telemedicine than health professionals, although they rated the desirability of telerehabilitation higher than health professionals. Additionally, individuals with SCI preferred an internet-connected computer service, while health professionals preferred a video system with telemedicine service. It is important to note that these views are reflective of a small subset of the population, rather than the entirety of the population. Further research regarding the efficacy and safety of telerehabilitation is necessary, although there is much interest in this method of rehabilitation.
Dunn et al. (2000) performed an exploratory study of the value of receiving regular, comprehensive outpatient health care follow-up as compared to those who were deemed to have no access to these services. Although this investigation was limited by a poor description of the specific services offered to both the experimental and control groups, there were significant differences in the perceived health, independence, and absence of depression in those seen regularly in outpatient clinics. In addition, this group had significantly less frequent occurrences of specific secondary conditions and also rated the severity of these conditions as less than those having no access to these clinics (Dunn et al. 2000). Although this trial was prospective in nature and attempted a quasi-experimental controlled methodology, the potential confounds (i.e., gender, completeness, race, age, veteran status) varied greatly between the experimental and control groups. In addition, it was uncertain if selection bias may also have been an issue, as the authors did not specify what percentage of individuals within their own service provision cohort refused or did not receive regular outpatient care. These limitations resulted in this study being assessed as having a Level 4 level of evidence.
Similarly, Lugo et al. (2007) (N=42) reported functional and motor outcomes resulting from an interdisciplinary outpatient rehabilitation program for individuals with SCI. On average, patients participated in in-patient rehabilitation that was augmented with 18 months of follow-up (at 1-, 3-, 6-, 12- and 18-month time points). Due to financial constraints in the developing country of Columbia, there was a lack of accessibility to continuous therapy and some functional goals were achieved over the 18-month treatment period. In the absence of protocolized SCI care in developing countries, regular interdisciplinary follow-up and low-cost outpatient service delivery can be effective in achieving functional rehabilitation goals provided provisions are made for program accessibility (i.e., transportation).
Bloemen-Vrencken et al. (2007) conducted a large-scale investigation comparing the utility of a transmural nurse to liaise between community-based patients and health care professionals as compared to routine outpatient care characterized by periodic visits to a rehabilitation doctor or center, but results were limited by methodological problems. No differences were seen between a matched sample (n=31 in each group) in terms of the prevalence of secondary complications (i.e., notably pressure sores or UTIs) or associated healthcare utilization over the first year post-discharge. The authors noted several limitations with this study, in addition to recruitment issues that resulted in a sample that was half the intended size. Most notably, the implementation of the transmural nurse program was deemed inadequate with nurses making fewer home visits than was intended. In addition, centers participating in the control condition enhanced their outpatient program mid-study and it was also felt that the follow-up period of one year was too short given the observation that many patients are more consistent in attending follow-up visits during the early post-discharge period but then gradually may lose contact with the rehabilitation center.
In a pre-post test, Derakhshanrad et al. (2015) determined the efficacy of a multidisciplinary outpatient rehabilitation program on functional outcomes in individuals with complete SCI using the Spinal Cord Independence Measure (SCIM III). Upon completion of the program (consisting of educational sessions, OT, PT, and nurse interventions), an overall improvement in functional outcomes was observed from baseline, except for those with higher cervical injuries. However, a lack of comparison with an inpatient rehabilitation program makes it difficult to draw any conclusions about the efficacy of inpatient versus outpatient programs. In light of this, outpatient programs may complement inpatient programs to promote functional recovery. In cases where inpatient programs may not be available (i.e., developing countries), multidisciplinary outpatient programs may be a cost-effective alternative for those with low-level, complete SCI.
In another pre-post test, Zinman et al. (2014) evaluated a community reintegration outpatient program for individuals with SCI using a variety of outcome measures assessing well-being, quality of life, and participation. Improvements in self-efficacy and positive affect were initially observed, however, these changes were not maintained at follow-up. All other outcome measures were non-significant, which may reflect the need for additional resources following completion of the program. Despite this, the qualitative analysis found that participants were satisfied with the program and felt as though they gained relevant knowledge and coping skills necessary for community participation. Although there is a need for community reintegration programs, the clinical utility of this particular program is lacking due to the relatively small sample size and lack of a control group. As such, further research is necessary to conclusively demonstrate the efficacy of this program.
Rapidi et al. (2018) published a European evidence-based position paper to guide professional practice in Physical and Rehabilitation Medicine (PRM) for persons with SCI, based on a systematic review of the literature and expert consensus process. The recommendations on aspects related to outpatient and follow-up care included that:
- Interventions should take place in different PRM settings, according to the phase post-SCI (acute, post-acute, chronic phase): PRM departments in general or university hospitals, PRM departments/centers, specialized SCI centers, community-based PRM facilities including home-rehabilitation, where the rehabilitation team is specialized in SCI.
- PRM physicians should organize telehealth interventions and telerehabilitation to improve health care provision and continuing rehabilitation in the chronic phase post-SCI, particularly for people with SCI in remote areas.
- PRM physicians should decide the discharge criteria from inpatient rehabilitation facilities and liaise with outpatient facilities taking into consideration the individual needs of each person with SCI such as medical stability, nursing and medical requirements, rehabilitation goal attainment, home and caregiver situation, and the possibility of transportation.
- PRM physicians should provide life-long monitoring for persons with SCI to look for further functional decline, and to detect additional impairments in body functions, activity limitations, and participation restrictions.
- A robust system of primary healthcare and/or community-based rehabilitation should be accessible to people with SCI, and offered under the supervision of a PRM physician, including annual comprehensive examinations and appropriate specialized services by the multi-professional rehabilitation team as part of the long-term follow-up and provision of care for persons with SCI.
- PRM physicians should continue long-term follow-up of persons with SCI, also when ageing, aiming to meet the individualized needs of the person using diverse treatment strategies along with the lifespan of these persons with a life-long disability.
There is Level 2 evidence (from a randomized controlled trial: Dallolio et al. 2008) supported by level 4 evidence (from one prospective controlled trial: Phillips et al. 1999) and one pre-post test: Shem et al. 2017) “that telerehabilitation is clinically feasible and may be an adjunct to routine follow-up care for a variety of secondary health complications, leading to improved patient satisfaction and enhance functional outcomes.
There is level 5 evidence (from one observational study: Kim et al. 2012) that clinicians and individuals with SCI are interested in telerehabilitation, although, some concerns exist regarding the cost and risks (i.e., medical liability) of implementation.
There is limited level 4 evidence (from one prospective controlled trial: Dunn et al. 2000) that provision of routine, comprehensive, specialist follow-up services may result in perceived improvements in health, independence, and fewer feelings of depression.
There is limited level 4 evidence (from one prospective controlled trial: Bloemen-Vrencken et al. 2007) that coordination of care through a community-based transmural nurse has no effect on reducing secondary complications and associated health utilization as compared to routine outpatient care consisting of periodic visits to a specialized rehabilitation doctor or center.
There is level 4 evidence (from one pre-post test: Lugo et al. 2007) that regular and accessible interdisciplinary follow-up can result in achieving functional goals where protocolized SCI care is unavailable.
There is level 4 evidence (from one pre-post test: Derakhshanrad et al. 2015) that multidisciplinary outpatient rehabilitation programs may complement inpatient rehabilitation programs and promote functional recovery.
There is level 4 evidence (from one pre-post test: Zinman et al. 2014) that there is a need for community reintegration programs following SCI, however, further research is necessary to determine the efficacy of such programs.