Michael McGillion1, Sandra M. LeFort2, Karen Webber2, Jennifer N. Stinson3,4,5, & Chitra Lalloo3 1School of Nursing, McMaster University, Hamilton, Ontario, Canada 2 Faculty of Nursing, Memorial University of Newfoundland, St. John’s, Newfoundland and Labrador, Canada 3 Child Health Evaluation Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada 4 Department of Anesthesia and Pain Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada 5 Lawrence S. Bloomberg, Faculty of Nursing, University of Toronto, Ontario, Canada Chronic non‐cancer pain remains an important public health problem that seriously affects people’s everyday lives including their family, social and working lives. Chronic pain, defined as pain lasting 6 months or longer, affects 19% of Europeans and 20% (1 in 5) of Canadians [1–4]. Among Canadians afflicted, approximately 67% report that their chronic pain is moderate to severe and half of these individuals have endured chronic pain for over ten years [3]. The burden of chronic pain on individuals includes functional limitations and high rates of depression, sleep problems, loneliness, low self‐esteem as well as significant job change or job loss [3–7]. The economic burden of the problem is monumental. The total annualized costs of chronic pain in the United States and Canada—including direct health care costs and lost productivity—are estimated at $560 billion and between $38 to $40 billion, respectively [5, 6]. Because prevalence rates are so high, access to appropriate care continues to be a major problem. Choinière et al. found that the median wait time for multidisciplinary pain care for adults (2017 – 2018) is approximately 5.5 months and some people wait up to 4 years for their first appointment [8]. While the onus is on primary care providers (most of whom are generalists) to fill the gap in care, most have inadequate training in the effective prevention management of chronic pain [9]. One approach to improving patient care at the primary care level is self‐management education [10]. Traditional patient education provides information and teaches technical skills about how to manage the condition itself. By contrast, self‐management education is broader in scope, emphasizing problem solving, action planning for behavior change, contingency planning when desired goals are not reached and confidence building to enable people to deal better with everyday problems that result from chronic conditions [11]. In other words, self‐management education helps people with a chronic condition better manage their lives. Cumulative evidence from studies conducted in multiple countries support that low‐cost community‐based and digital self‐management programs, as adjuncts to usual care, are effective in improving health outcomes and quality of life for individuals with a variety of chronic health conditions including chronic pain [12–32]. This chapter provides an overview of key self‐management principles, successful program models, critical process elements and their impact on patient outcomes and practical tips for program start‐up. Active self‐managers are people who are willing to learn about and take responsibility for the daily management of their chronic condition and its consequences. The goal of self‐management is to maintain a wellness focus in the foreground, even in the midst of a chronic health problem, to improve overall quality of life. The daily tasks that need self‐management are threefold: To manage these tasks successfully, people need a set of core self‐management skills: problem‐solving skills; decision‐making skills; how to find, evaluate and utilize appropriate resources; how to work effectively in partnership with healthcare providers; and how to take action to change behavior [36]. Like other chronic conditions, managing chronic pain on a daily basis requires the acquisition and use of these core self‐management skills. But many people with pain have not had the opportunity to learn these skills in a constructive and supportive environment; rather, they have been told that they will have to “learn to live with the pain.” This is where pain self‐management education programs can help at the primary care level. These programs have been developed to provide patients with the skills to live an active and meaningful life even with a complex and difficult problem such as chronic pain. The Chronic Pain Self‐Management Program (CPSMP) [12, 13] and the Chronic Angina Self‐Management Program (CASMP) [14] are pain‐focused self‐management programs that were derived from the Stanford University Patient Education Research Center model of self‐management. These programs are now administered centrally at the Self Management Resource Center (SMRC) based in Palo Alto, California. By all accounts, the self‐management programs developed by Dr. Kate Lorig and colleagues have been the most rigorously developed and evaluated over the last 35 years with over 80 research publications from this research group [34]. The first such program was the Arthritis Self‐Management Program (ASMP) which was designed with “bits and ‐pieces taken from theory, accepted practice and good intentions” [35, p. 356]. However, over time, it evolved to become a program grounded in Albert Bandura’s concept of self‐efficacy, defined as “the exercise of human agency through people’s beliefs in their capabilities to produce desired effects by their actions” [36, p. 3] . This is also referred to as a sense of control. The ASMP program design was fully revised to incorporate the four confidence‐building strategies known to enhance self‐efficacy, including mastery, modeling, reinterpretation of symptoms and social persuasion [35]. All the current evidence‐based SMRC self‐management programs including the CPSMP and the CASMP incorporate these important confidence‐enhancing strategies. Self‐management education is, by definition, problem‐based and is designed to address the common problems and difficulties that arise for a given chronic health problem [33]. Using the CPSMP as an example, the program content, delivered to groups of participants over 2.5 hours per week for 6 weeks, includes the following topics: self‐management‐ tasks; differences between acute and chronic pain; the role of the brain and pain; balancing activity and rest; exercise and physical activity; relaxation and stress management; depression; nutrition; evaluating non‐traditional treatments; problem solving; decision making; communication skills with family, friends and healthcare providers; medications and medication responsibilities; fatigue and sleep; and action planning and goal setting to change behavior [37]. As part of the program,, participants are introduced to the idea of a “self‐management toolbox” and that, like a carpenter’s toolbox, different tools work best for different types of problems (Figure 25.1). Hence, over the 6 weeks of the program, participants practice these different techniques and begin to use problem‐solving and decision‐making skills about which types of tools work best for them given their day‐to‐day circumstances. They begin to understand that there is no “magic bullet” that will take the pain away, but that working at managing their overall health and their pain and other symptoms by using these tools can improve their enjoyment of life. Self‐management programs are structured to maximize active involvement of group participants. They are not the passive receivers of information. Therefore, the critical process components of the program are also standardized and include the following components: Figure 25.1 Self‐management toolbox. The confidence‐building strategies are embedded in the processes of the program. Opportunities for skills mastery or taking action are provided at every session of the 6‐week program and participants are encouraged to try new techniques each week at home. In this model of self‐management, action planning is the key element to skills mastery [33, 35]. Modeling is a key strategy to enhance self‐efficacy and is accomplished in a number of ways including the use of appropriate resource materials, the use of peer leaders (not always healthcare professionals) as facilitators for the program and program participants acting as models for each other. It is powerful for people with chronic pain to see others like themselves problem solve and achieve desired goals; they begin to see that, “if they can do it, I can do it.” The reinterpretation of physiologic symptoms as having multiple causes rather than just one cause (i.e. their pain) helps participants realize that many of the tools in their toolbox might be useful. Finally, social persuasion, by being involved in a group that provides gentle support and encouragement to change behaviors, can be a powerful tool to enhance confidence. The CPSMP [12] was adapted from Dr. Lorig’s ASMP and later the Chronic Diseases Self‐Management Program (CDSMP) in order to make it more directly applicable to people with chronic non‐cancer pain. Specific modifications were made with regard to content but all process elements to enhance self‐efficacy remained the same. In a first randomized controlled trial (n = 110), LeFort et al. [12] found that the CPSMP significantly improved pain outcomes, dependency on others, aspects of role functioning, sense of vitality and life‐satisfaction and self‐efficacy and resourcefulness to self‐manage pain at 3 months. Subsequently, a multisite effectiveness trial (n = 279) found that the positive effects of the CPSMP on aspects of mental health and resourcefulness were retained up to 12 months post‐intervention when delivered by generic healthcare providers [13]. A Danish study reported that a lay‐lead CPSMP resulted in a modest but significant improvement in pain, pain cognition and distress at 5‐months and a Danish qualitative study reported that attending the CPSMP provided them with both emotional and practical support as they struggled to cope with chronic pain [38, 39]. The CPSMP is now available in 49 agencies across Canada. For a list of organizations licensed to offer the program, see Table 25.1. For information on specific agencies which are licensed to offer the program in other countries and regions, please contact the Self Management Resource Centre through their website (https://www.selfmanagementresource.com/) (see Table 25.1). The CASMP was developed by McGillion et al. [14]
Chapter 25
Pain self‐management: theory and process for clinicians
Introduction
What is self‐management?
Background: Stanford self‐management program model
Content, process and strategies to enhance self‐efficacy
Effectiveness of pain self‐management programs: main findings
Community‐based programs
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