There is little consensus among rehabilitation specialists on what constitutes the essential elements of SCI rehabilitation. As with most forms of rehabilitation, rehabilitation programming for persons with SCI has been likened to a “black box” with research endeavors focused on the entire “rehabilitation package” rather than investigating the effectiveness of specific therapeutic practices (Gale et al. 2009).
Although there is no internationally accepted definition of SCI rehabilitation and its essential elements, we have provided an operational definition that distinguishes between specialized SCI rehabilitation programs and general programs of rehabilitation. This definition was informed by a review of service offerings among the 16 SCI United States Model System rehabilitation programs and of Canadian SCI rehabilitation programs (SCISN Rehabilitation Escan; SCI Definitions Framework). In addition, other resources were reviewed to establish this operational definition, including the WHO definition of rehabilitation (World Health Organization 1981), the International Classification of Functioning, Disability and Health (World Health Organization 2001), and efforts of clinicians and researchers to characterize the specialized treatment outcomes and methods involved in general rehabilitation (Stucki et al. 2007) and SCI-specific rehabilitation (Bérard et al. 2010; Blackwell et al. 2001; DeVivo 2007; Harvey et al. 2009; New et al. 2013; Noonan et al. 2017; Rapidi et al. 2018) From this review, we have defined specialized SCI rehabilitation as follows:
A specialized SCI rehabilitation program provides comprehensive, and patient-focused rehabilitation services, for inpatient, transitional living, outpatient and follow-up care, to empower people with SCI and their families to achieve optimal quality of life continuing into the community (focusing on increasing self-reliance and gaining independence). Through organized regional referrals, care is delivered through a multidisciplinary team provided by board certified physician specialists and accredited allied health professionals (i.e. physical/occupational/speech/ recreational therapists, nurse specialists, psychologists, dieticians, engineers, social workers, etc.). As a rehabilitation program specialized in the care of people with SCI (experienced through trauma or disease), active participation in research is facilitated through university affiliated teaching institutions.
Areas of further expertise may include specialized clinics (i.e. seating, audiology, pain, wound, sexuality/reproduction), respiratory/paediatric services, community/peer-support/fitness-wellness/health-maintenance/injury-prevention/day/combined (i.e. brain injuries, strokes, amputations, orthopedic conditions, neuromuscular diseases, burns and related disabilities) programs, support groups, vocational counseling, innovation/research updates, education, etc. Such specialized programs will be nationally (and possibly internationally) recognized and may be accredited through independent accreditation bodies (e.g., CARF/Commission on Accreditation of Rehabilitation Facilities; JCAHO/Joint Commission on Accreditation of Healthcare Organizations; AC/Accreditation Canada).
Up to date, general rehabilitation programs would likely follow the ICF-based conceptualization of rehabilitation that “aims to enable people with health conditions experiencing or likely to experience disability to achieve and maintain optimal functioning in interaction with the environment” (Stucki et al. 2007). In contrast to a specialized SCI rehabilitation program, the general rehabilitation program is designed for individuals who have a medically stable disability, without additional active medical problems that could affect participation in therapies, with identifiable rehabilitation goals and a high potential to achieve those goals towards upgrading or maintenance of independence in the home and community. General medical oversight, nursing, and physical/occupational/speech therapies are commonly provided to facilitate a return to work or to functional independence for activities of daily living. A general program of rehabilitation may not be able to provide acute medical services and diagnostics, especially for complex medical conditions that involve multiple body systems such as spinal cord injury with or without impaired cognition. Special considerations could be made for these latter individuals but referral to an appropriate specialized rehabilitation program is the preferred option. Services are intended for residents of the regions immediately surrounding the rehabilitation facility and are not usually affiliated with a university-based teaching institution. Some general rehabilitation programs may have further areas of expertise such as wound treatment or pain management, etc.
There have been efforts to “unravel” the “black box” of rehabilitation as applied to persons with SCI (Gale Whiteneck et al. 2009). A practice-based evidence approach has been applied across multiple centers to identify and investigate the myriad practices that are conducted across the rehabilitation enterprise. The intention is to link this information with appropriate and systematic outcome measurement so as to evaluate the effectiveness of rehabilitation interventions (or combinations thereof). A critical step to facilitating this ambitious endeavor was to develop a taxonomy of rehabilitation interventions associated with every discipline contributing to SCI rehabilitation (Gassaway et al. 2009). The taxonomies provide a systematic means to enable clinicians to document the specific interactions and interventions they conduct with their patients and this has been completed for seven disciplines including physical therapy (PT) and occupational therapy (OT), psychology, speech-language pathology (SLP), therapeutic recreation, social work and nursing (Natale et al. 2009; Ozelie et al. 2009; Wilson et al. 2009).
Efforts have also focused on characterizing the professional practice of physicians trained in the care of persons with SCI in the acute, subacute, and chronic phases of illness (Bérard et al. 2010; New et al. 2013; Noonan et al. 2017). Although there are differences in the methodology these authors used to characterize SCI rehabilitation, these authors outline common themes and recommendations for SCI rehabilitation, particularly in the inpatient setting. Collectively, these authors have identified that physicians with specialty training in the care of persons with SCI, such as specialists in physical and rehabilitation medicine (also known as physical medicine and rehabilitation or rehabilitation medicine in other jurisdictions), should serve as leaders and coordinators of care within a multidisciplinary setting, and that SCI rehabilitation units provide evidence-based care specific to medical and rehabilitation needs of persons with SCI (Bérard et al. 2010; New et al. 2013; Rapidi et al. 2018). This care should be individualized, patient-centered, and responsive to patient and family/caregiver goals and satisfaction (Bérard et al. 2010; Rapidi et al. 2018). Rapidi et al. (2018) recommend that discharge from inpatient SCI rehabilitation be determined by the physical and rehabilitation medicine physician in coordination with the multidisciplinary team, patient, and caregiver/family, taking into account the patients’ individual circumstances, rehabilitation goal attainment, availability of outpatient resources, and nursing and medical needs. After inpatient rehabilitation, these authors recommend ongoing care by a physical and rehabilitation medicine specialist with multidisciplinary team member involvement when needed, which may be delivered by telehealth when appropriate, such as for patients in remote areas (Bérard et al. 2010; Rapidi et al. 2018). In addition, education and opportunities pertaining to healthy lifestyles, such as exercise programming, nutrition, and psychosocial interventions, as well as vocational rehabilitation to improve employment rates for patients with SCI who are of working age, are recommended as part of chronic SCI rehabilitation care (Rapidi et al. 2018).