Various authors have noted the importance of providing continued, regular, specialized follow-up care following discharge from rehabilitation (Ernst et al. 1998; Cox et al. 2001; Dryden et al., 2004). In a recent review, Bloemen-Vrencken et al. (2005) described various follow-up programmes 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 5 of these being identified as either experimental or quasi-experimental in nature. Of these, 2 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 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.
Cox et al. (2001) performed a needs assessment of 54 community-dwelling individuals with SCI using structured telephone interviews and reported a perceived high need for a specialist, multidisciplinary SCI outreach service. 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 programmes (Vaidyanathan et al. 2004). Despite these reports, little direct evidence has been established for the effectiveness of different methods of providing follow-up care.
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, Bloemen-Vrencken et al. (2007) conducted a large scale investigation comparing the utility of a transmural nurse to liase between community-based patients and health care professionals as compared to routine outpatient care as characterized by periodic visits to a rehabilitation doctor or centre, 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 less home visits than was intended. In addition, centres 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 centre.
Due to financial constraints in the developing country of Columbia, Lugo et al (2007; N=42) reported on prospectively planned FIM and ASIA outcomes resulting from an interdisciplinary outpatient program of rehabilitation for individuals with SCI. An average 13.5 day in-patient rehabilitation program was augmented with 18 months of follow-up (at 1, 3, 6, 12 & 18 month time points). Although there was a lack of accessibility to continuous therapy, 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 that provisions are made for program accessibility (i.e. transportation).
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 centres 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-centre RCT (n=127) across 3 centres 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 3 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 (1999) and colleagues published 2 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 which offered free information and counselling over the study period. The videophone group received weekly counselling sessions focusing on self-checking for pressure ulcers and other related education via videophone for 6-8 weeks followed by weekly telephone counselling for 4-6 weeks. Similar activities were conducted with the telephone group for 10 weeks following discharge. No significant differences were reported across the 3 groups with respect to doctor/hospital/ER 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 and 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%.
There is limited level 4 evidence that provision of routine, comprehensive, specialist follow-up services may result in perceived improvements of health, independence and less feelings of depression.
There is limited level 4 evidence 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 centre.
There is level 4 evidence that regular and accessible interdisciplinary follow-up can result in achieving functional goals where protocolized SCI care is unavailable.
There is limited level 1 evidence from a single study that telemedicine videoconferencing as an adjunct to routine follow-up care improves patient satisfaction and may lead to enhanced functional outcomes.
- Routine, comprehensive, specialist follow-up services may result in improved health.
- In the absence of protocolized SCI care, regular and accessible interdisciplinary follow-up and outpatient care can result in functional goal attainment.
- Telehealth applications such as telemedicine may enhance patient satisfaction with follow-up services and also may improve functional outcomes.