The problem of preventing pressure ulcers in people with spinal cord injury

Pressure ulcers are one of the most complex and challenging problems in all of healthcare and are a common and costly secondary complication of living with a spinal cord injury (SCI).¹ Controversy remains about the precise mechanisms of pressure ulcer etiology. Pressure ulcers are thought to be caused by localized shear and/or compression over a prolonged period over bony prominences at certain anatomic locations (e.g. sacrum), leading to ischemia and eventually necrosis of the overlying soft tissues. Ulcers can develop in response to pressure applied to an area of skin over a very short time or when less pressure is applied over a longer period.

Research, clinical opinion, and published clinical practice guidelines all stress that persons living with SCI are at highest risk for developing ulcers over their lifetimes due to immobility, lack of sensation and other physiologic changes.^2–5 Skin breakdown delays rehabilitation and interferes with educational and vocational pursuits and complicates community reintegration.^4,6–8 Ulcer treatment in SCI often requires prolonged periods of bedrest, which can exacerbate social isolation, loss of control, and poor quality of life.^9–12

Risk factors for pressure ulcer development and healing are very similar and most published research focuses on ulcer healing rather than prevention, largely based on evidence derived from hospital-acquired pressure ulcers (HAPUs) in elders in institutional settings. HAPU costs range from $500 to >$130,000 per patient, which translates into $11 billion in annual US medical costs. Ulcers remain among the highest drivers of malpractice costs among US hospitals and long-term care facilities.^13,14

While experts agree that prevention is essential to reducing pressure ulcers, the preventability of all ulcers is debated to the present day. The first pressure ulcer clinical practice guideline was published >30 years ago.¹⁵ In 2013, the Agency for Health Research and Quality (AHRQ) published a comparative effectiveness review (n = 4,733 initial citations, n = 747 articles reviewed, 120 studies included), concluding that available evidence is ‘ … insufficient to guide recommendations on use of other preventive interventions … [but it was also] inappropriate to conclude that standard repositioning, skin care, nutrition, and other practices should be abandoned.’¹⁶

The Cochrane Collaboration has published over 300 evidence-based reviews of pressure ulcer interventions, describing insufficient evidence to support many commonly used clinical practices, including repositioning¹⁷ and nutritional supplementation.¹⁸ These reviews have consistently documented serious methodological deficiencies (e.g. small samples, lack of standardized definitions or reporting requirements and limited follow-up). The generalizability of existing studies on ulcer prevention and healing to people with SCI is “highly uncertain” because people with SCI are rarely included in ulcer prevention studies.¹⁹

Since 2001, Dr. Clark and colleagues^20–25 have applied the principles of occupational therapy and lifestyle redesign to substantially improve our understanding of the dynamic “interconnected web of physical, psychologic, social, and environmental influences” on the development of ulcers in people with SCI. The current study builds on this previous work. It is one of the most rigorous and comprehensive randomized controlled trials of ulcer prevention ever conducted in SCI. Strengths include targeting of high-risk individuals to receive an in-person intervention that addressed multiple lifestyle/participation aspects to facilitate participants’ ability to implement and sustain preventive routines into their daily activities. The sample was stratified by the participant’s current ulcer status and history and excluded those with stage 4 or unstable stage 3 ulcers. Participants received the intervention for 1 year and were followed for an additional year with no treatment. Despite the comprehensive intervention and rigorous methods employed in this study, no significant differences were observed in the incidence of ulcers during the intervention or follow-up phases.

A number of prevention interventions conducted in inpatient settings involving provider education, heightened awareness and specialized teams and resources have reported decreases in HAPU incidence of 25% to 30%. These decreases tend to be transient and are rarely sustained after the end of the intervention.^26–28 Importantly, no trial has reported the complete elimination of pressure ulcers.

This study raises important questions about ulcer preventability in SCI, including whether randomized trials (in which only a relatively small number of variables can be fully controlled) are the best way to study this problem. It would be helpful to understand whether a sub-set of participants benefitted from lifestyle redesign intervention (and why/why not). Low power, small effect sizes and lack of evidence in the general population suggest that there is unlikely to be a once-size-fits-all solution. If we accept that it may be not be possible to prevent all pressure ulcers in people with SCI, then it is imperative to identify those who are most/least likely to benefit from lifestyle redesign or other preventive interventions.

While interventions focused on improving self-care have improved self-efficacy, satisfaction, coping skills, and perceived social support in other chronic conditions (e.g. hypertension, diabetes, etc.), the evidence for improvement based on patient behavior change alone remains far from convincing,²⁹ especially when the recommended behaviors themselves are not evidence-based. A recent scoping literature review by Cogan et al. concluded that: ‘At present, there is no positive evidence to support the efficacy of behavioral or educational interventions in preventing pressure ulcer occurrence in adults with SCI.²⁰

Better information on appropriate targeting of preventive interventions is necessary. However, low income and/or racial/ethnic minority group members’ experiences with their providers and the health care system may make it more difficult for them to fully engage in prevention or treatment activities developed by providers.³⁰

Clinical observations confirm that some patients who do everything “wrong” never get ulcers while others who do everything “right” still get ulcers. The relationship between what a person does and their outcome is imperfect at best. Despite the lack of objective evidence, the role of patient behavior, often described as “non-compliance” (or non-adherence) continues to be a major concern for experts.³¹ If experts regard patient non-adherence (or put another way, patient engagement in their own care) as important, then health care systems must prioritize the routine collection of standardized measures of all forms of non-adherence (and engagement). There are many forms of non-adherence, including failure to initiate or patient-initiated discontinuation of a recommended activity (e.g. medication – perhaps due to undesirable side effects). What appears to be non-adherence may also reflect low health literacy or a lack of resources (e.g. accessing prescriptions, cost, competing time demands, etc.). Finally, it can also refer to activities like skipping medications, taking incorrect doses or taking them at the wrong time.³² Evidence on the hierarchy of the different forms of non-adherence, their causes and impacts on outcomes is lacking. To truly engage patients and help them understand their role in achieving desired outcomes, this information is needed to improve engagement.

Variability in provider practices have also been documented, including poor or non-existent provider adherence to guidelines and documentation of provision of preventive care.^33–35 Providers often receive little training in assisting patients in changing and maintaining healthy behaviors and they may lack resources needed to assist patients to achieve and sustain desired behaviors.³⁶ Open communication, patient education, mutual goal setting, and support of patient decision-making has been shown to improve patient adherence to health recommendations.³⁷

Health system factors impacting adherence include availability of appointments, reimbursement and insurance coverage for services, continuity of care, and improved patient-provider information sharing and communication.^38–40 Research is needed to identify patient and provider sources of non-adherence and how best to assist all parties in achieving pressure ulcer prevention. Based on the strong causative relationship that providers posit between patient non-adherence and healing, the types and frequency of non-adherence should be more comprehensively addressed in future studies to assess and mediate its potential effect on ulcer development and healing.

Other possible directions could include developing better strategies for engaging patients, caregivers and providers in adapting successful HAPU prevention strategies for addressing community-acquired pressure ulcers. Well-established HAPU ulcer prevention strategies have not been adapted to the community setting, nor have provider actions and community resources been identified to support patient, caregiver, provider and health care system prevention activities in the community. Some people with SCI might benefit from a “lite” version of lifestyle redesign provided immediately after SCI, while others might benefit from more intensive case management, supportive housing, home nursing or other strategies used in other high-risk populations.

The current focus on patient behavior also minimizes the importance that biomechanical and genetic factors may play in ulcer development. As technology to visualize internal anatomy develops, biomechanical approaches to understanding risk and its role in preventing ulcers are within reach. Sonnenblum et al. used 3-dimensional (3D) MRI imaging to identify individuals at highest risk of skin breakdown.⁴¹ Their 3D MRIs of the buttocks showed that regardless of repositioning, more than 70% of their SCI subjects did not sit directly on muscle, putting them at much higher risk of skin breakdown. Providing better real-time information about imminent risk of skin breakdown may provide opportunities to tailor education for patients at highest ulcer risk, which may improve adherence. Finally, interventions typically reserved to treat existing skin breakdown (e.g. multi-layer prophylactic dressings) may be useful for prevention.⁴²

Pressure ulcers are a complex and vexing multi-faceted problem which will require the consideration of patient, provider and system level strategies to address them.

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Conflicts of Interest None

Disclaimer The views expressed in this editorial are the authors and do not necessarily reflect the policies of the Department of Veterans Affairs or the U.S. government.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.