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. Primary care is increasingly becoming an important issue for the long term health of people with SCI. Twenty articles were found in the initial review covering 29 years, and an additional 24 were found over the past two revisions. Of these, two resulted in level 1 evidence (Dorstyn et al. 2013; Dorstyn et al. 2012), 3 resulted in Level 2 evidence; that is, generalizable findings based on quasi-experimental research (Bloemen-Vrencken et al. 2007; Dorstyn et al. 2011; Thietje et al. 2011). One offered Level 3 evidence (McDermott et al. 2005), and the remainder offered Level 4 or 5 evidence.
It is encouraging to note most people with SCIs 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 (Bockenek 1997; Collins et al. 2005; Donnelly et al. 2007). That said, recent evidence suggests that individuals with incomplete injuries are less satisfied than those with complete injuries (Hagen et al. 2012). 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 information and specialized expertise regarding spinal cord injury (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 difficulties family physicians experience remaining current with the advances in primary care for people with spinal cord injuries. There is an ongoing need for innovative methods of knowledge translation to assist family physicians with this expanding knowledge base.
Patients with spinal cord injuries are 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; people with spinal cord injuries are undoubtedly in this category. They 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 2 or 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. Numerous authors in this review describe models such as tele-consultation, outreach, and home visiting. There is emerging evidence around teleconsultations as a model of care, with the most recent review finding improvements in sleep difficulties, pain, and improved quality of life (Dorstyn et al. 2013). Although these models have not been definitively evaluated with adequate statistical power, several studies have produced positive results in terms of secondary complications, service utilization and well-being.
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. This approach ensures a high degree of expertise in spinal cord injury, though 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.