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 people with SCI 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 et al. (1988), family physicians play an important coordinating role, acting as a link between the SCI patient and multiple health care providers. The family physician also acts as a patient advocate, authorizer for needed services and benefits, 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 SCI, 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 SCI as well as other patients. People with SCI 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 using specialists (such as physiatrists) as primary care providers for the SCI patient because of scarcity, geographical mal-distribution, and lack of training in health promotion and illness prevention. A number 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 et al. 1999; McColl et al. 2012). Groah et al. (2002) offers a self-training module with 4 case studies, and Mann, Middleton and Leong (2007) offer an assessment tool for improving health care for people with SCI.
This review outlines empirical evidence regarding primary care for adults with SCI. In order to develop a more comprehensive analysis of this material, the methods used expand 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.