Review ArticlePractice

Primary care of people with spinal cord injury

Scoping review

Mary Ann McColl, Alice Aiken, Alexander McColl, Brodie Sakakibara and Karen Smith
Canadian Family Physician November 2012; 58 (11) 1207-1216;

Abstract

Objective To perform a scoping review of the empirical evidence between 1980 and 2009 regarding primary care for adults with spinal cord injury (SCI).

Data sources Peer-reviewed journals were searched from 1980 to 2009 using CINAHL, PubMed-MEDLINE, EMBASE, PsycINFO, Social Sciences Abstracts, and Social Work Abstracts.

Study selection The key word–driven electronic search identified 42 articles on primary care and SCI. Inclusion criteria narrowed the set to 21 articles that were published in English, that had a sample size of greater than 3, and that offered empirical analysis.

Synthesis Approximately 90% of people with SCI identify family physicians as their regular doctors; 63% have SCI specialists. People with long-term SCI develop complex rubrics for navigating their personal health care systems. There is conflicting evidence about the effectiveness of outreach programs for maintaining health and preventing complications following SCI. Regular follow-up by specialized teams and annual comprehensive health examination are supported by the evidence. The research shows a high level of consistency in identifying the most common issues raised by people with SCI in primary care, most of which are related to disability—specifically, secondary complications such as bowel or bladder dysfunction and pain. There is also good evidence that many general health issues require attention in this population, such as bone density problems, depression, and sexual and reproductive health issues. There is level 4 and 5 evidence for unmet health needs among individuals living with SCI in the community. Despite patients with SCI being high users of primary care and health services in general, the evidence suggests that the information needs of these patients in particular are poorly met.

Conclusion A robust system of primary care is the best assurance of good health outcomes and reasonable health service use for people with SCI, including annual comprehensive examination, appropriate specialist use, and attention to accessibility and unmet needs.

In most typical primary care practices there are only a handful of patients with spinal cord injury (SCI), and there is considerable uncertainty among family physicians about how to provide them with an optimal standard of care.1–5 Approximately 1400 new SCIs occur in Canada every year, and although prevalence estimates are highly variable, it is safe to assume that at least 50 000 Canadians live with SCI.6 At these rates, the average family medicine case load would have only 1 or 2 patients at a time with SCI.

Family physicians play an important coordinating role, acting as a link between patients with SCI and multiple health care providers.7 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.8–11

The objective of this study is to describe the empirical evidence currently available regarding primary care for adults with SCI. The scoping study is an emerging method of literature synthesis, defined as a way of mapping key concepts within a research area by assembling multiple sources and types of evidence.12 The emphasis of a scoping study is on comprehensive coverage, rather than on a particular standard of evidence. Arksey and O’Malley12 define 4 reasons to undertake a scoping review. This review fulfills their third purpose: to summarize and disseminate research findings to key stakeholders.

For the purposes of this study, primary care is defined according to Health Canada’s definition, as “health services provided at the first point of contact with the health care system ... including health promotion, illness and injury prevention, and diagnosis and treatment of illness and injury.”13 While primary care can involve a number of service providers (medical and allied health), most people still think of their family doctors first when seeking primary care.14

DATA SOURCES

Peer-reviewed journals were searched for the interval between 1980 and 2009 using the following electronic search engines: CINAHL, PubMed-MEDLINE, EMBASE, PsycINFO, Social Sciences Abstracts, and Social Work Abstracts. The process of study selection began with a key word–driven electronic search. The following key words were combined pairwise, with 1 from the first set and 1 from the second set for each search: spinal cord injury, paraplegia, quadriplegia, tetraplegia, secondary complications and primary care, family physician, family practice, health promotion, evidence-based practice, best practice, clinical guidelines.

Study selection

Articles were included if they were published in English and they focused on SCI, or at least included participants with SCI. Abstracts were reviewed by research staff and at least 1 investigator in the selection process. The investigative team comprised experts in family medicine, disability, rehabilitation, and knowledge translation, all of whom had previous experience with the scoping review methodology.15

The review process identified 42 items. To further focus the search, articles were read in their entirety by at least 2 of the authors15 and were excluded if they had a sample size of less than 3, were opinion or editorial pieces, or did not permit SCI-specific data to be identified. Based on these criteria, 21 articles were excluded and 21 articles remained that dealt specifically with issues of access to and quality of primary care for people with SCI (Table 1).16–37

View this table:
Table 1

Summary of the 21 articles included in the scoping review of primary care and SCI

The final set of articles was reviewed by at least 2 of the researchers for themes, issues, and levels of evidence. Table 216–38 summarizes the evidence, based on 3 factors:

  • Level of evidence was assessed according to Sackett and colleagues.38

  • Methodologic rigour was evaluated according to Downs and Black on a scale from 1 to 20, with higher scores corresponding to higher levels of methodologic rigour.37

  • Sample size was noted as an indication of the precision of the estimates generated in the study.

View this table:
Table 2

Summary of the evidence from selected studies of primary care and SCI

Of the 21 articles selected, only 1 resulted in level 2 evidence (quasi-experimental studies such as prospective studies, non-randomized comparison group and observational studies); 1 offered level 3 evidence (pre-experimental studies, such as uncontrolled studies, historical and retrospective reviews); 6 offered level 4 evidence (observational studies including posttest-only designs, case series, secondary analyses of administrative data); and 13 surveys provided level 5 evidence (surveys, case reports, single-subject studies).

There were no studies that offered level 1 evidence (ie, randomized clinical trials). Eleven studies used large samples (more than 100 participants), 8 used medium-sized samples (31 to 100), and 2 used small samples (30 or fewer). Eleven took place in the United States, 6 in Europe (including the United Kingdom), 3 in Canada, 2 in Australia, and 1 in India.

SYNTHESIS

Use and access

Donnelly and colleagues21 and Bockenek33 agree that most people with SCI (approximately 90%) identify family physicians as their regular doctors. They show that people with long-term SCI develop complex rubrics for navigating their personal health care systems. Glickman and associates,34 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 per patient made by the family doctors. Munce and colleagues,17 focusing on the Canadian context, found that very high use of health care resources among patients with SCI (more than 50 visits per year) was related to being older than 70 years of age, having substantial complications, and living in a chronic care facility.

Bockenek33 and Warms36 found that more than 50% of patients with SCI considered their physiatrists to be their primary care physicians. Donnelly and colleagues21 found that 63% of their sample from the United States, United Kingdom, and Canada had SCI specialists, 56% had both SCI specialists and family doctors, and 1% had neither. In a survey of physiatrists treating patients with SCI, Francisco and colleagues35 found that only 40% of physiatrists were willing to assume the primary care role, and only 38% thought that their residency training had adequately equipped them to assume that role.

For people with SCI, access issues—the simple ability to enter the practice and receive an appropriate standard of care—cause more than delays and inconvenience; inadequate access might actually prevent care. Physical accessibility of the office and equipment is often an issue.21 However, 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 SCI. In Australia, Cox and associates31 found that 81% of people with SCI living in the community reported limited local provider expertise in SCI. Bockenek33 and van Loo et al18 found that patients preferred specialist care, and were happiest to receive their follow-up care from rehabilitation specialists.

A number of approaches have been proposed in the literature for enhancing access to and quality of primary care for people with SCI. Goetz and colleagues24 show that clinical guidelines for specialized primary care can improve outcomes for people with SCI. There is conflicting evidence for outreach, in which expert providers (usually from an institutional rehabilitation setting) reach out to supplement the resources of community primary care settings. Booth and Kendall20 showed that specialized multidisciplinary outreach enhanced successful transition to the community. On the other hand, Bloemen-Vrencken and associates19 saw no difference in complications, readmissions, or quality of primary care in an outreach program from rehabilitation to primary care. Participants in a nurse-led clinic for bowel and bladder care reported that more up-to-date and practical information was obtained from nurses than from their usual primary care providers.26 Beck and Scroggins29 found significant (P < .05) increases in knowledge and skills with an educational intervention aimed at people with quadriplegia. Prabhaka and Thakker27 showed a decrease in readmissions, and an increase in functional status and quality of care, using a home visiting program. Cox and colleagues31 found that home visits and telephone consultations were preferred methods for increasing accessibility to primary care.

Satisfaction was high (about 75%) with the quality and accessibility of primary care,21 particularly the annual comprehensive preventive health evaluation.23 Van Loo and colleagues18 found that 23% of visits to family physicians in their sample were to obtain annual follow-up. However, they reported that 72% of their sample had unmet needs, particularly related to rehabilitation consultation, telephone consultations, and home visits. Beatty and colleagues28 found that unmet needs were greatest among those with the poorest health and lowest incomes.

Health issues of key importance in primary care for SCI

Fifty-eight percent of contacts with family physicians were related to secondary complications of SCI.18 Eighty percent of the issues raised in the typical family medicine encounter are related to disability.36 The most consistently mentioned issues were bowel and bladder problems and pain.21,23,26,34,36 Also of concern are adaptive equipment,23 prescription medications,28 bone density,16 dermatologic issues,18 and spasticity.34 Van Loo et al18 demonstrated that 34% of all secondary complications were preventable.

Unfortunately, there are a number of issues for which unmet needs have been observed in primary care specifically: psychological health, sexual and reproductive health, lifestyle, and community functioning.21,25,32,36 Unmet needs for information were also identified, especially regarding aging and current research.22,30

DISCUSSION

This review found 21 articles that offer evidence regarding primary care for people with SCI. Most (19) were observational studies and surveys, with only 2 offering level 2 or 3 evidence. Typically, scoping reviews do not emphasize levels of evidence, but rather focus on the lessons that can be learned from interpretation of the collected literature.15 This review is specifically designed to offer family physicians an overview of the published literature on the care of patients with SCI in primary care.

There were 5 studies showing that multidisciplinary outreach programs working out of primary care settings can have promising health and service utilization effects for patients with SCI.20,26,27,29,31 Outreach programs included home visits, nurse-led clinics, multidisciplinary education, and transitional rehabilitation. By contrast, institutional outreach from rehabilitation to primary care was shown by Bloemen-Vrencken and colleagues19 to be unsuccessful in reducing selected secondary complications.

There is evidence for the importance of an annual comprehensive health examination.18,23 Several authors also provided evidence for regular follow-up by specialized teams of medical and other multidisciplinary providers.21,31,33

The research shows a high level of consistency in identifying the most common issues raised by people with SCI in primary care. Most of these issues are related to disability18,36—specifically, secondary complications such as bowel and bladder issues and pain. However, there is also evidence that many general health issues require attention in this population, such as bone density,16 depression,25 and sexual and reproductive health.32

Patients with SCI are a small proportion of the typical family medicine case load. According to Wallace and Seidman39 and Rosen,40 5% to 6% of the patients (ie, those with complex chronic conditions) consume about a third of a practice’s resources, and require the services of a multidisciplinary team. Disabled patients can be high users of primary care and bring with them multiple needs and expectations.41 Despite the best of intentions, these needs might not all be met in the standard 10- to 20-minute family physician interaction.

There is evidence from 6 studies for unmet health needs among individuals living with SCI in the community.17,18,21,22,28,35 Despite high use of primary care and health services in general,17,21,34 information needs appear to be particularly poorly met.22,30 For patients who routinely attend appointments with 5 or 6 issues, of which only 3 can be raised, it is not surprising that unmet needs persist, regardless of the quality of care that is delivered. These unmet needs are most likely a product of the complexity of lifelong SCI and the ongoing need for creative, vigilant, responsive primary care.

The answer to this dilemma is not to simply ask more of family physicians. A number of articles have appeared in this journal recently to assist family physicians with better serving people with disabilities, including practice guidelines,42,43 educational recommendations,44 and research articles.45 Family physicians are used to focusing on disability, according to Jørgensen46; however, they might not be familiar with the many challenges and manifestations that accompany disability. Bloemen-Vrencken and colleagues47 and McColl and colleagues48 provide review articles on models of primary care for people with disabilities. In their systematic review, Bloemen-Vrencken and colleagues47 found that models such as teleconsultation, outpatient clinics, case management, and home visiting produced positive results in terms of secondary complications, service utilization, and well-being. McColl and colleagues48 also reviewed a number of promising models, such as shared care, case management, self-management, and community-based rehabilitation.

Conclusion

Historically, many patients with SCI have used specialists (particularly physiatrists) to provide their primary care.49–52 While this approach ensures a high degree of expertise in SCI, there are a number of arguments against it—not least among these is the clear preference by physiatrists to resist responsibility for primary care.35

The literature is unequivocal that a robust system of primary care is the best assurance of good health outcomes for the population and of reasonable health service use.53 The primary care system is best positioned to provide high-quality, holistic care for all, including people with SCI. Although the evidence is not strong, there appears to be sufficient consensus to advance several recommendations. We suggest that optimal primary care for patients with SCI might include the following:

  • routine annual comprehensive health evaluation;

  • multidisciplinary follow-up to address issues that accompany long-term disability;

  • accessible premises that permit full examination of presenting health complaints;

  • access to disability-specific expertise in the form of specialists, regarding common secondary complications such as pain and bowel and bladder complications; and

  • awareness of areas in which there are often unmet needs, such as psychological concerns, sexual and reproductive health, and lifestyle issues.

Further research is needed to evaluate the validity of these recommendations.

Acknowledgments

We thank the SCIRE (Spinal Cord Injury Rehabilitation Evidence) Research Team for their support.

Notes

KEY POINTS

The existing literature suggests that optimal primary care for patients with spinal cord injury might include routine annual comprehensive health evaluation; multidisciplinary follow-up to address issues that accompany long-term disability; accessible premises that permit full examination of presenting health complaints; access to disability-specific expertise in the form of specialists, regarding common secondary complications such as pain and bowel and bladder complications; and awareness of areas in which there are often unmet needs, such as psychological concerns, sexual and reproductive health, and lifestyle issues.

Footnotes

  • This article has been peer reviewed.

  • This article is eligible for Mainpro-M1 credits. To earn credits, go to www.cfp.ca and click on the Mainpro link.

  • La traduction en français de cet article se trouve à www.cfp.ca dans la table des matières du numéro de novembre 2012 à la page e626.

  • Contributors

    All authors contributed to the literature review and interpretation, and to preparing the manuscript for submission.

  • Competing interests

    None declared

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Primary care of people with spinal cord injury
Mary Ann McColl, Alice Aiken, Alexander McColl, Brodie Sakakibara, Karen Smith
Canadian Family Physician Nov 2012, 58 (11) 1207-1216;
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