Access to primary care has been a key health issue in many jurisdictions in recent years. When the media refer to access, they usually mean issues like wait times, geographical distribution and supply of providers; however, for people with spinal cord injuries, there is another layer of access issues. People with SCI encounter four types of barriers to optimal primary care: physical, knowledge-based, attitudinal and systemic (McColl et al. 2009). These barriers affect the simple ability to enter and use the facilities of the practice, and the ability to receive an appropriate standard of care. Whereas access issues may delay and inconvenience patients in the general population, for patients with disabilities, access issues can actually prevent care. This section summarizes the findings of 16 studies that provide information on access and utilization of primary care among adults with SCI.
Donnelly and colleagues (2007) and Bockenek (1997) agree that most people with spinal cord injuries (approximately 90%) have access to primary care; that is, they identify a family physician who is their regular doctor. These results came from surveys of people with long-standing spinal cord injuries in the US, Canada and Great Britain.
In a Dutch sample, van Loo and associates (2009) found that 77% of their community-dwelling sample with spinal cord injuries of average 13 years duration had contacted their family physician in the past year for an issue related to their disability. Glickman and associates (1996), in a survey of primary care providers in England, found that on average, patients with SCI attended their clinics 4 times per year, with an additional 4.5 home visits made by the family doctor, and as many as 51 home visits made by other members of the health care team working out of the primary care setting. This finding highlights the extensive network of community rehabilitation available in the UK. Munce and colleagues (2009), focusing on the Canadian context, found that women with SCI tend to make more visits to their family physician than men; however, very high utilization of primary care (more than 50 visits per year) was related to being over 70 years of age, having significant complications, and living in a chronic care facility.
Bockenek (1997) surveyed patients attending outpatient clinics in the US, and found that 50% considered their physiatrist as their family physician, and were happy to receive their primary care at the rehabilitation centre. Warms (1987) also found that more than half of community-dwelling adults with SCI in the US received primary care from their physiatrist. In a survey of physiatrists treating patients with spinal cord injuries, Francisco and colleagues (1995) found that only 40% of physiatrists were willing to assume this role, and 53% believed that physiatrists were competent to fulfill this role. Only 38% felt that their residency training had adequately equipped them to provide primary care.
Donnelly and others (2007) found that 63% of their international sample had a spinal cord injury specialist or physiatrist; 56% had both SCI specialist and family doctor, and only 1% had neither. Beatty and colleagues (2003) found that 57% of those surveyed with an SCI reported a need for specialist care, but 25% had unmet needs. With regard to specialist visits, Munce and colleagues (2009) found that Canadians with SCI were most likely to be high users of specialist services if they were younger and if they lived in chronic care. Both Bockenek (1997) and van Loo and associates (2009) found that patients preferred specialist care, and were most happy to receive their follow-up care from rehabilitation specialists rather than community care.
Donnelly and colleagues (2007) show that people with long-term spinal cord injuries develop complex rubrics for navigating their personal health care systems. There is considerable confusion about which issues are most appropriate to bring to the family physician versus the physiatrist, and there are significant international differences in who does what. Beatty and colleagues (2003) surveyed adults with a variety of disabilities in the US, and found that about 63% of those with SCI indicated a need for primary care, while 33% reported an unmet need for primary care (meaning a self-report of service needed but not received). A troubling finding of the same study was that unmet needs were greatest among those with the poorest health and lowest incomes. van Loo et al. (2009) reported that 72% of their sample reported unmet needs, particularly related to rehabilitation consultation, telephone consults and home visits.
The most prevalent impediment to accessible primary care is the need for specialized expertise. In Australia, Cox and associates (2001) found that 81% of people living in the community with SCI reported limited local provider expertise, and 25% indicated a high need for specialist outreach services. Goetz and colleagues (2005) showed that clinical guidelines for specialized primary care can improve outcomes for people with SCI, but adherence to guidelines does not necessarily follow publication. Implementation strategies, such as improved documentation forms and procedural flowsheets, significantly increased adherence and promoted improved care.
Donnelly and colleagues (2007) noted that physical accessibility of the office and equipment could be an issue in primary care. These results came from surveys of people with long-standing spinal cord injuries in the US, Canada and Great Britain. Munce and associates (2009) noted that geography might be an impediment to access, since emergency room visits were twice as common for those living in rural areas. Often in rural areas, family physicians provide the medical service in emergency rooms after hours, and the central location of the emergency department in a rural community may provide easier access for patients. Cox and colleagues (2001) found that home visits and telephone consultations were preferred methods for increasing accessibility to primary care.
According to Donnelly and colleagues (2007) satisfaction was high (~75%) with quality and accessibility of care for both family physicians and rehabilitation specialists. One program where satisfaction was particularly high was the annual Comprehensive Preventive Health Evaluation (CPHE; Collins et al. 2005). In a large sample of American veterans with SCI, compliance with CPHE was related to having health needs and issues successfully addressed. van Loo and colleagues (2009) found that 23% of visits to family physicians in their sample were to obtain annual follow-up.
Guilcher and associates (2010) add to information about primary care utilization in Canada, showing that in the first year following discharge from rehabilitation, people with non-traumatic SCI made statistically more visits to the family physician than those with traumatic SCI. There was, however, no difference in use of emergency departments between traumatic and non-traumatic injuries. Highest primary care utilization was related to older age, living in an urban area, and greater functional limitation. This study is consistent with findings by Munce and colleagues (2009) that higher emergency room utilization was related to living in a rural area.
DiPonio and colleagues (2011) confirmed earlier findings that limited provider knowledge about SCI was a significant barrier to access. In a survey of emergency room medical residents, they found knowledge generally poor (47%) for six potentially life-threatening situations that might bring someone with a spinal cord injury to the emergency department.
One article evaluated access to dental services (Yuen et al. 2010). These authors showed that people with SCI use dental care at the same rate as the general population. The greatest impediments to access were physical barriers and cost, especially for those without insurance.
In this most recent update, two articles were added to access and care, with Hagen and colleagues (2012) finding that individuals with complete injuries were more satisfied with their GP than those with incomplete injuries. Guilcher et al. (2013) found that approximately 50% of emergency department visits among those with SCI were either ‘potentially preventable’ or ‘low acuity’, suggesting that there is considerable over reliance of the ED among this population.
There is level 4 evidence that individuals with tSCI are using the ED for conditions that could be managed in primary care approximately half of the time (Guilcher et al. 2013)
There is level 4 evidence that adherence to clinical guidelines improves with targeted implementation plans (Goetz et al. 2005).
There is level 5 evidence that individuals with incomplete injuries are less satisfied with their GP than those with complete injuries (Hagen et al. 2012).
There is level 5 evidence that factors predicting access to health services include health plan type, health condition, health status, severity of condition, income level and age (Beatty et al. 2003).
There is level 5 evidence that an annual Comprehensive Preventive Health Evaluation at the SCI centre is related to improved health care utilization and having health, psychosocial, and equipment needs met (Collins et al. 2005).
There is level 5 evidence that a minority ofphysiatrists are willing or capable of providing primary care to those with disabilities (Francisco et al. 1995).
There is level 5 evidence that there is considerable duplication between primary care and physiatry, despite high satisfaction with both (Donnelly et al. 2007).
There is level 5 evidence that there are significant differences in service utilization between Canadians, Americans, and Britons, but no difference in access to and satisfaction with the services (Donnelly et al. 2007).
There is level 5 evidence that limited knowledge of SCI, lack of funding, and service fragmentation are barriers to primary care (Cox et al. 2001; DiPonio et al. 2011)
There is level 5 evidence that people with spinal cord injuries use dental care at approximately the same rate as the general population (Yuen et al. 2010).
People with spinal cord injuries tend to be high users of primary care.
A large majority of people with spinal cord injuries have a family doctor and are satisfied with care received, but there is evidence that those with incomplete injuries are less satisfied than those with complete injuries. People with spinal cord injuries are using the emergency department for conditions that could be managed in primary care.
Lack of SCI-specific expertise appears to be the greatest impediment to access to primary care. Physical barriers are also encountered in some practices.
Unmet health needs are a significant problem for people with SCI in primary care, with information needs in particular being poorly met.
There is no consensus about the role of physiatry in primary care. Many people with SCI are content to receive their primary care from a physiatrist, but there is some question as to whether physiatrists are the appropriate primary care provider.
Coordination is needed to ensure continuity and coverage when multiple providers are involved.