Primary care has been shown worldwide to be one of the most significant factors in maintaining the health of individuals and populations (Starfield 1997). In recent years, there has been a renewal and reshaping of primary care around the world, with an unprecedented emphasis on funding models, accessibility and quality. In the last decade, there has been an increased interest in the role and effectiveness of primary care in spinal cord injury. However in most typical primary care practices, there are only a handful of patients with spinal cord injuries, and there is considerable uncertainty among family physicians about how to provide them with an optimal standard of care (Holcomb 2008; McColl et al. 2008; Middleton 2008; Potter 2004; Stanley 1981).
Family physicians play a key role in maintaining the health of people with spinal cord injuries. According to Bluestein (1988), family physicians play an important coordinating role, acting as a link between the spinal cord injured patient and multiple health care providers. The family physician also acts as a patient advocate, and as a central clearinghouse for information. Kroll and Neri (2008) and Holcomb (2008) discuss the essential role that family physicians play in health maintenance and promotion for patients with spinal cord injuries, particularly with regard to routine age and sex-appropriate preventive health care. Family physicians are often conflicted in the expectation that they will provide a gatekeeper role in the health care system (Batavia, 1999). They are simultaneously expected to be the patient’s carer, supporter and advocate, while at the same time screening patients for access to specialists, programs and benefits.
Primary care is good, economical, holistic care, but the literature suggests that family medicine does not serve patients with spinal cord injuries as well as other patients. What are the barriers to providing optimal care? Are they physical, knowledge-based, attitudinal or systemic (McColl et al. 2009)? People with spinal cord injuries report that family physicians typically lack the specific expertise necessary to provide them with optimal primary care (Kroll et al. 2003; Batavia 1999; Tolbert 2002; Stanley 1981). Several approaches have been tried to remedy this problem. Some authors favour multidisciplinary approaches, where nurses and other rehabilitation specialists work in collaboration with the family physician. Bernardez (1994) recommends specially trained physician assistants; however, physician assistants are neither available nor registered to practice in many countries outside of the US. Holcomb (2008) recommends specialist community-based nurses as adjuncts to family physician care. Of note, he argues against the use of medical specialists (such as physiatrists) as a substitute to good community-based primary care. Scarcity, geographical mal-distribution, and lack of training in health promotion and illness prevention mitigate against the utility of specialists as primary care providers for the SCI patient.
A series of articles have been written as primers to family physicians who may have a patient with a spinal cord injury in their practice (Tepperman 1989; Stanley 1981; Middleton et al. 2008a & b; Brooker 1999). Groah (2002) offers a self-training module with 4 case studies. Mann, Middleton and Leong (2007) offer an assessment tool for improving health care to people with spinal cord injuries.
This review outlines empirical evidence regarding primary care for adults with spinal cord injuries. In order to develop a more comprehensive analyses of this material, the methods used expanded upon those traditionally used for the other SCIRE reviews (see SCIRE Methods). Specifically, two new databases with a focus on the social sciences were searched (Social Sciences Abstracts, and Social Work Abstracts), and the inclusion criteria was broadened to include any relevant qualitative studies.
This literature has been divided into three subsections: 1) access and utilization; 2) outreach program; and 3) health issues.
Access to primary care has been a key health issues in many jurisdictions in recent years. However typically when the media refer to access, they 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 – the simple ability to enter and use the facilities of the practice, and the ability to receive an appropriate standard of care. Thus, 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 11 studies that provide information on access and utilization of primary care among adults with SCI.
Table 1: Access and utilization issues for primary care of adults with SCI
Donnelly and colleagues (2007) and Bockeneck (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 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.
Bockeneck (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. However, 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 Bockeneck (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 order to adequately serve as the first line provider for patients with spinal cord injuries. In Australia, Cox and associates (2000) found that 81% of people living in the community with SCI reported limited local provider expertise; 25% indicated a high need for specialist outreach services. Goetz and colleagues (2005) show that clinical guidelines for specialized primary care can improve outcomes for people with spinal cord injuries, but that adherence to guidelines does not necessarily follow publication. They describe strategies, such as improved documentation forms and procedural flowsheets, which 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 et al (2009) noted that geography might be an impediment to access, since emergency room visits were twice as common for those living in rural areas. In the absence of a local family practice, patients might be more inclined to attend the emergency department of a local hospital. 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 (2000) 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; Colllins 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.
A number of models have been proposed in the literature for enhancing access and quality of primary care for people with disabilities. This review found evidence only regarding outreach models, where expert providers, usually from an institutional rehabilitation setting, reach out to supplement the resources of community primary care settings. Table 2 presents information on four such multidisciplinary outreach programs.
The highest quality evidence found in this review showed no effect of an outreach program for maintaining health after discharge from rehabilitation (Bloemen-Vrencken et al. 2007). Bloemen-Vrencken and associates (2007) saw no difference in complications, readmissions, or quality of primary care when a nurse provided liaison from rehabilitation to community primary care.
Another approach to outreach involved a nurse-led clinic aimed at enhancing bowel and bladder care. Participants reported more up-to-date and practical information was obtained from nurses than from their usual primary care providers (Williams 2005).
Beck and Scroggins (2001) also describe an educational intervention aimed at people with tetraplegia and their caregivers. They found significant increases in knowledge and skills related to respiratory complications, autonomic dysreflexia, spasticity, reportable symptoms, effects of aging and availability of community resources.
Other strategies for improving primary care to people with spinal cord injuries include the use of home visits. Prabhaka and Thakker (2003) showed a decrease in readmissions, and an increase in functional status and quality of care using a home visiting program.
The final section of this review presents articles discussing the most common health concerns experienced by people with SCI in the community, and those issues most typically seen in primary care. This section is made up of 13 surveys of patients and providers, aiming to increase awareness of the nature and scope of health concerns typically experienced by people living in the community with spinal cord injuries. Table 3 summarizes the health issues and information needs of individuals with SCI when they seek primary care.
Table 3: Health issues of key importance
There is consensus in the literature about the issues that are of most concern to people with spinal cord injuries when they seek primary care. Fifty-eight percent (58%) of contacts with the family physician were related to secondary complications (van Loo et al. 2009). Most consistently mentioned were bowel and bladder problems and pain (Donnelly et al. 2007; Collins 2005; Glickman 1996; Warms 1987; Williams 2005). Eighty percent (80%) of SCI patients in primary care bring multiple problems to their family physician (Glickman 1996), and according to Warms (1987), 80% of the issues raised in the typical family medicine encounter are disability-related.
Both Collins (2005) and Beatty (2003) refer to the need for adaptive equipment and prescription medications as concerns in primary care. Collins (2005) notes that these are key reasons why individuals seek an annual check-up. Beatty (2003) notes that 94% of patients with SCI have needs for prescription medications, and 69% for adaptive equipment. In both instances, the primary care physician is the coordinator for these needs. They also found that 93% of prescription medication needs and 69% of equipment needs were met.
Ashe and associates (2009) provide support for the importance of bone density, and the need for pharmacological treatment if indicated. Two articles highlighted the need for attention to skin care and spasticity. Glickman and associates (1996) claim that 42% of patients have dermatological issues and 65% need help with the management of spasticity. van Loo’s sample in the Netherlands (2009) demonstrated that 34% of all secondary complications were preventable, especially skin complications, which were judged to be 53% preventable.
Unfortunately, there are a number of issues where unmet needs have been observed in primary care. Donnelly and colleagues (2007) noted that there are issues that appear not be well covered by primary care, whether it came from a family physician or physiatrist – specifically issues of psychological health, sexual and reproductive health, lifestyle and community functioning. McDermott and colleagues (2005) noted that depression is significantly higher among people with disabilities, and that it has a significantly earlier onset when the disability is of a traumatic origin. Warms (1987) also found unmet needs for health promotion and lifestyle issues.
One frequently overlooked area of primary care for people with spinal cord injuries is the area of sexual and reproductive health. Oshima and colleagues (1998) note that physicians are typically not prepared for the special issues associated with the gynaecological or obstetric needs of women with spinal cord injuries, or of the procedures necessary to provide them with a reasonable standard of primary care.
Finally, several studies referred to the information needs of people with spinal cord injuries in primary care. Vaidyanathan and colleagues (2001) found unequivocally that patients wanted clear information about their health, preferably in written form. They wanted information shared among health providers as well as with themselves. Gontkovsky and colleagues (2007) also identified information needs in a spinal cord injured population, especially information about aging, current research and other educational offerings. Ethnic minorities in particular had a difficult time having their information needs met.
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.