This scoping review set out to discover the current state of knowledge in the research literature about primary care for people with spinal cord injuries.  Only 20 articles were found published in the last 29 years that met the inclusion criteria for this review.  Of these, only 1 resulted in Level 2 evidence; that is, generalizable findings based on quasi-experimental research (Bloemen-Vrencken et al. 2007; a prospective randomized controlled trial).  One offered Level 3 evidence (McDermott et al 2005; a case control study), 5 offered Level 4 evidence (post-tests, pre-post tests, and case series)), and 13 surveys provided Level 5 evidence. 

Despite the paucity of research, it is encouraging to note most people with spinal cord injuries report that they do have primary care coverage, either from their family physician or from a spinal cord injury specialist, and most are satisfied with the care they receive (Bockeneck 1997; Collins et al. 2005; Donnelly et al. 2007).  There appears to be some agreement that an annual follow-up visit, whether with the family physician or the rehabilitation specialist, is compatible with having one’s concerns addressed and having a plan for health maintenance and prevention of secondary complications.  However, significant unmet needs persist – needs for specialized expertise regarding spinal cord injury, needs for information, and needs for health promotion, lifestyle and prevention services (Beatty et al. 2003; Donnelly et al. 2007; Gontovsky et al. 2007; Munce et al. 2009; van Loo et al. 2009).  These unmet needs are most likely a product of the complexity of lifelong spinal cord injury, and the ongoing need for creative, vigilant, responsive primary care. 

Patients with spinal cord injuries are undoubtedly among the small percentage in any typical caseload who have multiple, complex health needs.  According to Wallace and Seidman (2006) and Rosen (2006), 5-6% of the patients in a standard family practice consume about 1/3 of the practice’s resources.  These patients require the services of a multi-disciplinary team to adequately manage their array of health and social concerns.  Interestingly, this statistic of 5-6% coincides precisely with the prevalence of severe disabilities in the Canadian population (Statistics Canada 2006).  We suggest it is no coincidence that those with severe disabilities, such as spinal cord injury, are high users of primary care, and bring with them multiple needs and expectations (McColl and Shortt 2001).  Despite the best of intentions, these needs may not all be met in the standard 10-20 minute family physician interaction, where there are often restrictions on the number of issues that may be raised.  For patients who routinely attend with 5 or 6 issues, of which only 3 can be raised, it is little wonder that unmet needs persist, regardless of the quality of care that is delivered in that standard brief interaction.

The answer to this dilemma is not to simply ask more of family physicians, but rather to suggest alternative models of primary care for these subsets of the population with extraordinary needs.  Bloemen-Vrencken et al. (2005) and McColl et al. (2009) provide review articles on models of community care for people with spinal cord injuries.  Bloemen-Vrencken and colleagues (2005) found that  models such as tele-consultation, out-patient clinics, case management and home visiting could not be definitively evaluated based on the available research, however several studies produced positive results in terms of secondary complications, service utilization and well-being.  McColl and colleagues (2009) found that the clinic model is the most common approach in primary care to community follow-up of patients with severe disabilities; however, other promising models, such as shared care, case management and community-based rehabilitation, should be considered.  Booth and Kendall (2007) provided qualitative evidence that specialized multidisciplinary outreach increased coordination with local care providers and enhanced resources needed for successful transition to the community. 

The broader health literature is unequivocal that a robust system of primary care is the best assurance available of good health outcomes for the population, and reasonable health service utilization.  Historically, a subset of the population with spinal cord injuries has used specialists (particularly physiatrists) to provide their primary care.  While this approach ensures a high degree of expertise in spinal cord injury, there are a number of arguments against it.  Not least among these is the clear preference by physiatrists to resist responsibility for primary care (Francisco et al. 1995).  The primary care system is best positioned to provide comprehensive, multidisciplinary, holistic care for all, including people with spinal cord injuries.