A Primary Care Provider’s Guide to Accessibility After Spinal Cord Injury Free

John is a 50-year-old man who is a new patient presenting for a periodic health exam. He sustained a complete T3 spinal cord injury (SCI), American Spinal Injury Association Impairment Scale (AIS) B, at age 30. Since being discharged from rehabilitation 20 years ago, he has rarely seen a primary care physician (PCP). He reports that he has “put on a few pounds” and is coming in for a check-up; he’s been having difficulty with a wound on his buttocks that does not seem to be healing. He comes in his full-time manual wheelchair and requires significant assistance with transfers. What barriers might he face in your office?

The incidence and prevalence of traumatic SCI in the United States is approximately 12,500 per year and 906 cases per million, respectively.¹  The average life expectancy for individuals with SCI remains significantly lower when compared to persons without SCI, and this is virtually unchanged since the 1980s. Although milestones and expected outcomes are based on level and completeness of injury, nearly three-quarters of patients are typically discharged into the community following inpatient rehabilitation.¹  Typical functional outcomes for individuals with SCI have been described in detail.²  At 1-year post injury, 91% of SCI patients live in a private residence and 4% live in a skilled nursing facility (SNF). At 20 years post injury, the numbers are essentially similar, with 97% living in private residence and less than 1% in an SNF.³  PCPs are typically the first line of contact within the health care system, and they have the unique opportunity to help manage SCI patients’ comprehensive health needs and serve as a link between the individual and multiple health care providers. However, the literature has shown that individuals with SCI are less likely to receive the same basic health care when compared to their peers and have unmet health care needs.⁴ 

The Institute of Medicine states that primary care is “the provision of integrated, accessible health care services by clinicians who are accountable for addressing a large majority of personal health care needs, developing a sustained partnership with patients, and practicing in the context of family and community.”^5(p500) SCI patients have special longitudinal physical and psychosocial needs that are often not adequately managed within a primary care setting. Most common issues for their visit to PCPs include pressure sore management, bowel and urinary tract dysfunctions, shoulder pain, spasticity, and autonomic dysreflexia (AD).⁶  The care is often relationship-based and involves PCPs and specialists. The special needs often lead to inadequate treatment of their health issues and secondary complications, fewer preventive screenings, and less general health promotion.^5,7  This article aims to describe and advocate for standardized care plans and address barriers that limit quality primary care for SCI patients.

John may find it hard to get to his family physician because the clinic may be unsuitable for easy access. A cross-sectional observation study looked at barriers to health care access for 108 individuals with SCI (53% with paraplegia, 44% with tetraplegia) who use wheelchairs as their primary means of mobility. Approximately 91.1% of participants reported facility, clinic, and exam room barriers during primary care visits. There were similar findings with speciality care visits; 80.2% of the participants reported accessibility issues.⁸  Despite the Americans with Disability Act and Rehabilitation Act of 1973, significant barriers to primary care remain to individuals with physical disabilities. The box at the beginning of the article outlines a general health maintenance checklist for addressing these barriers.

Having accessible parking, ramps, working elevators, restroom access, and wide doorways and hallways can markedly improve accessibility. Approximately one in four patients mentioned that typically primary care clinics did not account for the presence of a wheelchair and that the patients had trouble accessing the examination table.^7,8  In many clinics, the examination tables require an uphill transfer onto a narrow surface that usually is not able to be raised or lowered. The average cost of a high–low examination table is upwards of $2,000, which is a barrier for many clinicians. Patients have reported a lack of transfer aids such as transfer boards, sling, and lifts and staff who have limited knowledge on how to use or assist with these safe transfers.^7–9  A resource for office accessibility has been developed by the Canadian Disability Policy Alliance.¹⁰ 

In the earlier discussed survey of 108 adults with SCI, 89% reported that they did not have their weight examined, 88% were not asked to change into gowns or undress to be thoroughly examined, and 85.2% never got on the examination table.⁸  A wheelchair-accessible scale can help track a patient’s weight and body mass index (BMI) and can provide useful clinical information for the management of a patient’s overall health. Local or federal programs can provide financial assistance for PCPs to improve care accessibility, safety, and clinical efficiency.¹¹ 

Transportation is often cited as a major accessibility barrier in the US SCI community, and it is a greater problem for patients located in rural settings because of the long distance to urban centers.^11,12  Understanding and accommodating client transportation barriers (eg. travel time, distance, and cost) can lead to improved patient-centered care. One accommodation could be proactive outreach to community-centered partnerships with local buses, access-a-ride, accessible public transportation, and accessible Uber/Lyft resources. The willingness of the PCPs to accommodate afternoon visits and involve care partners are other ways to address such barriers.¹³ 

Primary care staff can advocate by helping patients navigate a complex system to improve their transport options. In exceptional cases, an adapted vehicle that includes hand controls, adjustable seats, and/or ramps to access the vehicle can be purchased by patients who can afford it and want to drive on their own. State-funded programs such as vocational rehabilitation agencies can be utilized. Hand controls and other equipment, once purchased, are transferable to newer vehicles, and most private companies offer a variety of discounts to facilitate such transfers. This is important for SCI patients as it helps them achieve independence and improve their life satisfaction. PCPs can facilitate referrals to occupational therapists or specialty clinics who may provide assistance with the process of using an adapted vehicle.¹⁴  Participants in SCI focus groups have also advocated for increased use of internet resources to decrease transportation barriers.¹³  One such resource is the development of an online portal that lists accessible provider directories and their ratings. Major rehabilitation centers have such information, but it is not widespread or easily accessible. A centralized platform can better inform both patients and PCPs of clinics nearby that tailor their practice to include individuals with disability.

These barriers to accessibility have broader implications. John may not have had any routine preventive care screenings.^4,8,15  The lack of accessibility and proper equipment not only in the clinician’s office but also in health care facilities has resulted in patients receiving fewer preventive measures, including pap smears, pelvic examinations, colonoscopies, and mammograms, compared to non-SCI patients.¹⁶  Limited accessibility has also hindered preventive screening in other areas such as bone health and dental care.^9,15 

The development of secondary complications and the lack of appropriate care pose another significant set of health care problems. These complications involve issues related to bowel, bladder, pain, adaptive equipment, skin, and spasticity. Up to 34% of all such secondary complications are preventable with good support in primary care.¹⁷  Other broader issues such as psychological, sexual, reproductive, lifestyle, and community functioning contribute to poor standards of care among SCI patients.¹⁵ 

The negative stigma, marginalization, and lack of knowledge surrounding SCI patients often lead to isolation, exclusion, lack of acceptance, and embarrassment. These broad themes can result in inaccurate preconceptions and biases that lead to delays in diagnosis and treatment and decreased support. Practitioners need to be aware of and comfortable in communicating about disability. Patronizing encounters and the lack of courtesy, sensitivity, and respect have been frequently reported by patients.¹³  Resources that improve provider disability literacy and communication should be emphasized.¹⁸  Good disability etiquette such as spending more time with patients, having a face-to-face conversation, and good support during physical exams can dramatically improve the care and perceptions of SCI individuals. When referring care to other practitioners, providing resources about disability as part of patient referral package may help in dispelling misperceptions and increase awareness of the specific disability and specific patient needs.¹³  Empowering PCPs through education and exposure may mitigate such preconceptions.

PCPs are often uncomfortable in managing care for SCI patients due to lack of training, low patient volumes, and the perception of the process as being time consuming.^7,12  This is further highlighted by 47% of emergency room residents not having adequate knowledge in six categories of post-SCI care (autonomic dysreflexia, urinary tract infection, posttraumatic syringomyelia, gastrointestinal system problems, pulmonary disturbances, and cardiac complications).¹⁹  Many individuals with SCI have been educated on some of these aspects of their care in inpatient rehabilitation centers, and so it is important for PCPs to demonstrate willingness to collaborate and build capacity in managing these issues.

Evidence consistently shows that patients with SCI have a 40% to 60% prevalence of obesity, which puts them at higher risk for cardiovascular disease (CVD), cancer, and other metabolic issues.²⁰  They are 200% more likely to have cardiovascular issues than their non-SCI peers.²¹  Body mass index (BMI) is commonly used among the able-bodied population to calculate risk for CVD, however, this calculation may give an inaccurate picture of SCI patients’ risk. Following SCI, patients lose a significant portion of their lean body mass due to atrophy, and consequently they have a higher percentage of fat mass that is not represented in a BMI calculation. Based on the decrease in lean mass and increase in fat mass, a BMI of >22 has been recommended to signify risk for obesity and obesity-related chronic diseases.²²  The most accurate way to assess fat mass would be to use bioelectrical impedance analysis (BIA), but this requires access to special equipment and for patients to prepare for the analysis by fasting. Waist circumference is a more practical method that can be utilized without special tools or preparation and has more recently been utilized to look at obesity and risk factors in patients with SCI. A recent study found that a waist circumference measurement of >94 cm correlated to CVD risk factors.²³  A limitation of this cutoff is that waist circumference was measured in supine at the smallest part of the waist, which requires the patient to transfer to a mat or table; this again highlights the importance of a high–low table and the ability to transfer a more dependent patient using a lift.

In 2016, a Primary and Community Care Spinal Cord Injury Summit was conducted in Ontario, Canada, with the goal of understanding key needs and future directions.⁶  The summit involved key stakeholders such as PCPs, individuals with SCI, researchers, allied health, policy makers, and funders. The summit yielded five areas of recommendation for improving primary care to individuals with SCI:

• Application of best practices

• Improved knowledge translation and dissemination of information/resources

• Improve accessibility and system issues

• Enhanced SCI research in primary care

• Improved communication between health sectors

It has been suggested that novel approaches are needed in managing the care for individuals with SCI.¹⁵  The Mobility Clinic in Ontario, Canada, has developed an accessible interprofessional clinic with the objective of facilitating care for individuals and their PCPs. Resources such as the Spinal Cord Injury Primary Care Toolkit (SCIPCT) and accredited Case-Based Learning Modules (CBLMs) have been developed to help improve primary care knowledge, and training other PCPs is a priority.^24,25 

The needs of individuals with SCI are often complex and require involvement of more than the PCP alone. Allied health professionals such as occupational therapists, physiotherapists, assistive technology professionals, and dietitians have specific expertise to assist in providing quality care for individuals with SCI. They can provide wheelchair adjustments, home visits, exercise regimens, rehabilitation, and share community resources that improve day-to-day functioning of patients. They often have gone beyond the role of health providers by using strategies to combat social isolation and encouraging community participation.²⁶  Unfortunately, these services are not uniformly accessible by patients and PCPs due to issues such as insufficient funding, wait lists, and recruitment challenges, particularly in rural settings. PCPs and their staff can advocate for community engagement and can establish partnerships to share local facilities.²⁶  Therapists have a vital role in facilitating as social partners, arranging for peer mentors, bringing together family and friends, engaging patients in the community, and problem solving, and they need to be seen within the context of providing good primary care.

Despite improvements in care over the last two decades, there has been limited consensus on a robust primary care delivery model that supports content, pathway, and delivery. There are 14 SCI Model Systems that manage, admit, and advance the treatment for SCI patients in the United States.²  The US Department of Veterans Affairs Spinal Cord Injuries and Disorders System of Care consists of a national network of hubs and spokes. There are 24 hubs that provide primary and specialty care. Primary care is often delivered at the local “spokes” sites.²⁷  For example, annual comprehensive exams are done at the spoke or local clinics compared to colonoscopy, cancer screening, and management of refractory secondary complications that are coordinated with the hub or specialized centers. This hub and spoke model of care is different from other models of care employed in Canada and Europe.²⁷  The model has been successful, but there is little research on its long-term outcomes compared to the private system of SCI in the United States.

Due to the complexity of care involved with SCI patients, interdisciplinary collaboration is needed within and between settings. Interviews conducted among health care providers, community-based non-health providers, and policy makers managing chronic neurological conditions including SCI found that there was increased competition for scarce resources, and there was duplication of services, limited leadership, and lack of proper handouts, knowledge, and expertise.²⁸  Sharing electronic health records and aligning services across regions also appears to be a challenge. The goal of educating patients and their families, having a proactive team of primary care providers, and having a person-centered health advocacy can lead to better health outcomes with SCI.

John was able to independently transfer onto the high–low examination table in the clinic room. On examination, he has a stage 1 pressure injury over the right ischial tuberosity. You counsel him on proper nutrition, weight shifts, and use of pressure-reducing devices and surfaces. A referral to an occupational therapist to evaluate his wheelchair cushions, mattress, and bed would be appropriate. Using a wheelchair-accessible scale, you calculate his BMI to be 24, which would be considered within the normal weight range for the general population. However, using a cutoff of 22 for people with SCI, he now falls at the risk category for obesity and obesity-related diseases. You recommend a referral to a nutritionist to discuss dietary and caloric requirements and encourage him to exercise. Referral to a physical therapist who can provide a tailored exercise regimen for home or the gym can be useful. Lastly, as a PCP you schedule a follow-up with John in a few weeks to monitor his pressure injury care and overall cardiovascular health.

SCI and other physical disabilities are complex, chronic conditions that often lead to inappropriate use of health care services, increased health care costs, and fragmented care. More importantly, these conditions often lead to poorer overall individual health outcomes. PCPs need to consider the physical, attitudinal, knowledge-based, and systemic barriers that exist and be proactive in addressing them. Novel and collaborative approaches are needed to change the trajectory of care for persons with physical disabilities. By addressing these barriers and incorporating an informed team-based approach, PCPs can improve the quality of patient care and improve individual health outcomes.

1. Ensure an accessible clinic and equipment with knowledge of proper use for SCI patients to provide comprehensive care.

2. Be vigilant for common secondary complications of SCI (primarily bowel, bladder, autonomic dysreflexia, spasticity, and skin changes) in addition to diseases that affect the general population.

3. Identify local rehabilitation centers and associated assessible clinics near you. Proactively seek referral sources and knowledge of community resources such as rehabilitation centers, local gyms, and assistive technology professionals.

4. Educate staff about removing attitudinal and physical barriers in primary care clinic.

The authors report no conflicts of interest.