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Patient Education and Self-Management


The 2011 report from the United States Institute of Medicine concluded that pain care should be tailored to each person’s experience and that self-management should be promoted as a central strategy to improve care. The importance of self-management was again emphasized in the National Pain Strategy (NPS), a blueprint for delivering optimal pain care, and in the Centers for Disease Control Guidelines for Prescribing Opioids for Chronic Pain, the Healthy People 2020 report, and within the Federal Pain Research Strategy. The use of self-management for chronic pain management is also recommended in several clinical practice guidelines. Despite these broad recommendations, self-management for pain is still not routinely implemented in clinical practice. This chapter reviews the current status of pain self-management in two sections. The first section defines pain self-management, identifies its components, and provides evidence of its efficacy. The second section addresses the use of self-management in the context of primary care and describes considerations for implementation, including face-to-face and digital options, as well as guided and unguided formats. The chapter concludes with future considerations for more broad scale implementation of pain self-management into routine clinical pain management pathways.

Pain Self-Management: Definition and Components

Definition

Pain self-management (i.e. self-care) can be highly beneficial but suffers from a bad reputation. Patients and clinicians alike often misinterpret the term “self-management” to reinforce perceptions that (1) the pain being experienced is not real and therefore “real” pain treatment (e.g. medications, surgery) will not be offered, (2) the clinician is abandoning the patient to deal with the pain on his/her own, or (3) the clinician is withholding “real” pain treatment out of fear of addiction and potential liability. Factually, none of these scenarios reflect the accurate use of or the clinical potential of pain self-management. A definition may prove helpful:

“Self-management refers to the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and [lifestyle] changes inherent in living with a chronic condition. Efficacious self-management encompasses the ability to monitor one’s condition and to effect[sic] the cognitive, behavioral and emotional responses necessary to maintain a satisfactory quality of life. Thus, a dynamic and continuous process of self-regulation is established.”

Self-management refers to all the things that a person can do on his/her own to address pain beyond visits to a health professional (which may be frequent or not at all). It does not replace traditional medical care but supplements current practices and bridges the gap between healthcare visits. One might think of pain self-management in the same way as one thinks about self-management for diabetes (e.g. lifestyle changes, dietary changes, monitoring glucose). For diabetes care, these behavioral changes do not replace medical management; they facilitate greater functioning and quality of life as an integral part of health care for a chronic condition.

Components of Pain Self-Management

Pain self-management programs (SMPs) share several key components. The most commonly featured components are , (1) functions of the patient-clinician relationship (e.g. shared decision making, patient education, goal setting, and action planning), (2) building self-efficacy (e.g. skill building, problem solving, and personalized tailoring), (3) self-monitoring (e.g. symptom monitoring and behavioral monitoring) and (4) social support (e.g. relationship maintenance and cultural considerations). Each component will be briefly described ( Table 62.1 ).

TABLE62.1
Components of Pain Self-Management Programs
Functions of the Patient-Clinician Relationship Pain Education
Shared Decision Making
Goal Setting
Action Planning
Self-Efficacy Building Skill Building
Problem Solving
Personalized Tailoring
Monitoring Symptoms
Behaviors
Social Support Maintenance
Cultural

The Patient-Clinician Relationship

It may seem strange to include the clinician in a description of “self-management.” It may also seem strange to use the term “patient” given that “self-management” implies that the “patient” is managing pain on his/her own and, therefore, not in a traditional “patient” role. As will be discussed, “self-management” can occur with just the efforts of the individual or can be “supported self-management” when it occurs in the context of professionally directed care.

With the advent of sophisticated medical technologies and the increasing bureaucratization of medical care, communication between practitioners and patients has become increasingly hierarchical, administratively efficient, and impersonal. While such efficiencies can support the practice as a business, it tends to be woefully inadequate for addressing the needs of people with chronic pain. A common complaint of both patients and clinicians is the lack of office time to address all the associated pain issues adequately.

Patients and their clinicians often bring two very different perspectives to the therapeutic relationship. Clinicians can offer a deep understanding of how pain develops, how best to treat it, and how and when to address concomitant comorbidities. In contrast, patients bring first-hand knowledge of what it is like to have the condition and how it affects daily life. Patients also know what seems to make sense to them and what they are willing to try. Integrating self-care into chronic pain care offers both the clinician and the patient a role to play if it is to be successful. Self-care is not simply shifting responsibility for pain treatment onto the patient. Instead, it capitalizes on a richer knowledge of the patient’s circumstances that can influence pain and offers the benefits inherent in a clinician-patient dyad where treatment objectives are mutually identified. It also acknowledges the chronicity of the pain where curative efforts need to be redirected toward promoting the wellbeing of the individual through continuous care and iterative adjustment to self-management strategies. It is well-documented that patient-centered care that allows patients to take an active role in their care leads to better patient experiences and outcomes in the long term. ,

The foundation of a good patient-clinician dyad is mutual respect and trust. By definition, chronic pain will be long term, and the dyad will need to work together to build a productive relationship over a lifetime, which will involve overcoming challenges and setbacks and the making of compromises when medical evidence and feasibility/desires conflict. Mutual respect and trust can facilitate shared decision making, which is needed for navigating the uncharted waters of the individuals’ journey with chronic pain. The dyad is also supported by a shared knowledge of the mechanisms of chronic pain, a rationale for trying various treatments, and awareness of potential adverse responses. Goals setting and action planning within the dyad bolster the decision making process by making it objective and measurable. Without goals and action plans, it would be impossible to know whether the intended progress was being made or when additional fine-tuning was needed. Each dyadic function will be discussed further.

Shared decision making . The importance of therapeutic rapport is well-studied as a foundational element in behavioral change, adherence, and improved outcomes. The traditional biomedical model emphasizes the clinician’s role as a knowledgeable authority dictating the course of treatment to exact a cure for the presenting problem. The biomedical model can work well when a cure is likely, but it can be frustrating for both parties when cures are not the norm—such as with chronic pain. In a patient-centric model, the clinician can still serve as a knowledgeable partner but more in the spirit of providing options, pros and cons of those options, and offering encouragement to the patient to identify what will work best at a particular point. Placing the clinician in this role better matches the evidence, which largely supports approaches requiring patient cooperation and involvement. , Unfortunately, most patients in primary care practices do not feel like an equal partner with decision making about their pain care. Thus there is still work to translate the concept of “patient-centric care” into actual pain management practice.

Pain neuroscience education . For the patient-clinician relationship to work well, both parties must share a common framework for understanding pain (i.e. pain, pain mechanisms, how those mechanisms are best treated, and why). Pain neuroscience, translated for a lay audience, offers the patient-clinician dyad a common language for discussing pain, a rationale for both pharmacologic and non-pharmacologic treatment options, and a foundation for generating personalized hypotheses about what would be effective. One study of online videos for pain neuroscience education suggested that pain neuroscience videos should contain seven key topics: (1) the multiple sources that contribute to the pain experience, (2) the bioplastic nature of our nervous system and pain, (3) pain not being an accurate index of tissue status, (4) pain education as a form of treatment, (5) pain being created in and distributed from the brain, (6) pain’s protective role, and (7) pathologic pain that can become overprotective and sensitized. Interestingly, most online videos claiming to provide pain education did not address any of the above topics, with only one addressing all topics (i.e. “Tame the Beast: It’s Time to Rethink Persistent Pain”). The most commonly included topics were pain being created in and distributed from the brain and pain’s protective role. The least frequently covered topics were bioplasticity and the overprotective/sensitization pathology of pain. Given the wide variance in quality of online educational materials, sharing educational resources between the dyad members can help ensure quality, create a shared understanding of pain, and helps reinforce the relationship between the two parties.

Goal setting . Goal setting might be considered the strategic part of the patient-clinician relationship. Here, short and long term outcomes can be assessed and identified. Goal setting provides an opportunity to obtain three valuable tools for pain management: (1) a means of identifying relevant outcomes (e.g. personal goal attainment), (2) a means around which treatment can be tailored, and (3) a means of predicting the success of other treatments (e.g. a goal for increased step counts may predict improvements in pain interference). Setting goals in the context of pain management adds structure to the management process and creates opportunities to evaluate progress. Goal setting refers to the choosing of goals and identifying the criteria by which a goal is evaluated. For example, if a patient sets a goal for pain reduction, it is important to identify how much pain reduction would constitute the achievement of that goal (e.g. complete remission?, 30%?). Setting goals that are reasonable and just slightly difficult to reach usually works best in pain management. Heapy et al. identified seven categories commonly associated with goal setting for pain self-management. These include goals for physical activity, functional status, wellness, recreational activities, house/yard work, socializing, and work/school activities. Again, while an individual can set goals, including goal setting as part of the patient-clinician relationship offers an opportunity for the goal to be acknowledged publicly and allows the clinician to reinforce goal achievement.

Action planning . Whereas goal setting was the strategic component of pain self-management, action planning is the tactical component. By working on an action plan together, the dyad can identify specific behaviors that need to occur to turn goals into actions. Once actions are agreed upon, the patient then needs to act on the plan. This is known as “goal striving.” Depending upon the outcome of the actions, the clinician can then reinforce or assist in developing alternative plans. The clinician’s involvement in action planning helps keep the clinician in touch with what the patient is attempting to accomplish and can serve as a reminder to ask about the entire treatment plan (i.e. both medications and self-management) on the next visit. Evidence suggests that when clinicians are active partners in encouraging and planning for self-management, patients learn more readily, manage symptoms and side effects better, and show better adherence to the overall treatment plan.

Self-Efficacy Building . An objective of any self-management program is to have the individual with pain feel self-efficacious in performing the skills used to manage and control pain. The patient needs to go beyond simply learning about the skills to experiencing success through using the skills. This paves the way to self-efficacy, so he/she feels capable of managing pain in various situations in the future. Historically self-management skills have been taught in formal therapy supported by a therapist or coach. Once mastered, the individual would graduate therapy to become independent self-managers.

Nine non-pharmacologic therapies for chronic pain have sufficient evidence for broad implementation. These can be grouped into three categories and include:

  • psychologically based therapies (i.e. Cognitive-Behavior Therapy (CBT), Acceptance and Commitment Therapy (ACT), Mindfulness-based Stress Reduction (MBSR)),

  • exercise and movement therapies (i.e. Exercise, Yoga, Tai Chi),

  • manual therapies (i.e. manipulation, acupuncture, massage).

These therapies include skills that promote self-management to gain personal control over pain and symptoms, psychological flexibility to allow improved functioning in the context of pain, and empowerment to feel efficacious in managing pain between clinician visits or medication dosages.

The individual components of each of the above therapeutic options tend to overlap with one another and represent a set of skills to be learned, practiced, and mastered in support of better pain management more generally. Mastery of these skills can directly improve pain and functional status and provide an experientially based foundation for self-efficacy. Given that real-world applications of these skills can present challenges, training in problem solving techniques and methods of personalizing the skills to the unique circumstances of the individual can also help build self-efficacy to ensure long term success with pain self-management.

Skill building . There are many skills embedded in traditional therapies that can be learned and used on one’s own. A sampling of some of these skills includes the following and can be grouped into those that are primarily intrapersonal in nature and more overtly observable and associated with one’s lifestyle.

Intrapersonal Skills

  • Relaxation – there are many methods of achieving mind and body relaxation (e.g. progressive muscle relaxation, visual imagery, meditation, biofeedback). All methods can work but require regular practice to establish a relaxation rhythm recognized by the body as a cue to relax.

  • Sleep – one night of poor sleep can interfere with coordination, mood, and mental agility for the next three days. Behavioral sleep strategies and sleep hygiene skills can help individuals with pain get a better night’s sleep despite the presence of pain.

  • Mood management – depression, anxiety, and anger are the big three emotions that can maintain pain and make it worse. These emotions need not be present at psychiatric levels to impact pain. Methods such as mindfulness meditation and pleasant activity scheduling can alter the background emotional milieu against which pain gets processed in the brain.

  • Stress management – life can be stressful even without pain. When present, stress can make pain worse. Again, approaches such as pleasant activity scheduling (e.g. engagement in daily brief, simple, pleasant activities such as going for a walk or spending time on a hobby) can help to reduce stress along with MBSR techniques.

  • Reframing and cognitive restructuring – when something is newly experienced, the mind creates a summary of that experience that is then recalled when interpreting the next encounter with a similar event. Using prior information in this manner facilitates faster mental processing and cognitive efficiency. While such efficiency can be helpful for day-to-day activities, this automatic thinking is problematic when it comes to chronic pain. Automatic catastrophic thinking, closed mindedness to potentially beneficial therapies, and low self-esteem are examples of unhelpful automatic thinking tied to pain. With chronic pain, automatic thinking can be challenged and altered to allow new possibilities for managing pain to emerge along with improved emotional responses to the reframed thinking.

  • Resilience – resilience refers to the personal strengths an individual can bring to bear on efforts to buffer the impact of pain. Such skills can be inherent or learned and include savoring each moment, finding gratitude, remembering positive events, conducting random acts of kindness, and learning one’s signature strengths.

Lifestyle Management

  • Exercise – exercise benefits individuals whether or not they have pain and can include formal workouts, walking, water aerobics, or leveraging ongoing lifestyle activities. ,

  • Pacing/graded activation – activities can be paced either by time or broken into smaller tasks in a manner that reduces pain flare-ups, saves energy, and increases functioning and task completion. ,

  • Diet and nutrition – a healthy diet provides a solid foundation for wellness in general. Reduced weight can relieve burdened joints and make exercise more feasible. There is also some evidence that non-inflammatory diets, gluten-free, and hypocaloric diets can each have pain-reducing benefits. ,

  • Acupressure – acupuncture is an efficacious intervention for pain but requires a professional acupuncturist and, therefore, would not be considered a form of self-care. A personal version of acupuncture, acupressure, uses a similar philosophy but replaces the needles with the application of pressure (e.g. using the thumb, finger, or a blunt object). Evidence is emerging about the efficacy of this alternative approach for chronic pain self-management. ,

  • Spirituality – patient advocacy groups often mention the importance of spirituality in dealing with pain. Spirituality does not refer to any one theory or philosophy but references the importance of having a connection to something bigger than oneself and incorporates the formation of personal values and the search for meaning in life.

Problem solving . Individuals with pain face more challenges than people who are pain-free. Even minor tasks like carrying groceries up the stairs or driving to a relative’s house for a visit can pose enormous feasibility challenges when in pain. There are structured problem solving processes that can be taught by a coach or adopted on one’s own. Structured problem solving involves breaking a large problem down into smaller pieces to be addressed. , Structured problem solving comprises six steps. Step one involves identifying the problem. If there is more than one problem, then it needs to be broken into smaller pieces. Step two involves gathering information about the problem so it can be understood. Step three involves brainstorming a solution. For this step, all options can be on the table. Step four involves evaluating each of the brainstormed solutions in terms of whether the solution is (a) realistic and (b) favorable. Step five is the development of a work plan for addressing the problem. The work plan should include actionable items and the identification of potential barriers and means of addressing those barriers. Finally, Step six involves evaluating how the plan worked. If successful, congratulations. If unsuccessful, restart the process by revisiting Step one with a revised identification of the problem.

A common obstacle shared by many individuals with pain is how to incorporate the various pain management skills (reviewed above) into one’s lifestyle. Many skills require consistent practice, the establishment of habit or a bodily rhythm, and the need to be integrated into an already crowded lifestyle. Knowing the skills but feeling blocked to implement them can have a deleterious effect on self-efficacy and ultimately the abandonment of self-management. While problem solving is not a pain management skill per se, it can help facilitate the mastery of the other pain management skills.

Tailoring and personalization . Similar to problem solving, tailoring and personalization involves molding generic pain management skills around the life of the individual with pain. Personalization can take many forms, such as selecting the elements of a skill found to be useful (e.g. using savoring resilience skills but not signature strengths). Skills can also be personalized in their timing/scheduling (e.g. using relaxation skills once a day for 20 min), modifying the skill to one’s personal taste (e.g. using one’s own music for relaxation rather than a scripted tape), or receiving personalized feedback on progress or barriers. Studies on the value of self-management personalization support the approach as a means of enhancing adherence and reinforcing one’s self-efficacy for managing pain.

Self-Monitoring

Monitoring how symptoms change over time and how specific behavioral changes can be more or less beneficial for a given symptom allows the individual to know what is working or what treatments can be stopped over the long term. Two types of self-monitoring will be described, monitoring for symptoms and monitoring behaviors.

Symptom monitoring . People have difficulty remembering how pain intensity fluctuates. If asked about pain intensity for the past week, people most likely recall the peak pain experienced for the week or report the pain intensity that occurred in the last several hours. Being unable to objectively recount how pain was experienced over time makes treatment planning more difficult and makes it difficult to evaluate when and what treatments are working and which are not.

The most common symptoms monitored in the context of pain include pain intensity, the location of pain (using a body map), sleep problems, anxiety/depression, cognitive difficulties (e.g. memory and concentration), and fatigue. These symptoms represent a symptom cluster that commonly accompanies pain and other chronic diseases. This symptom cluster remembered by the acronym s.p.a.c.e. (sleep, pain, affect, cognition, energy) has been identified in both human and animal models as an index of “unwellness.” Monitoring s.p.a.c.e. over time can provide an ongoing account of how these symptoms interact, worsen, or improve compared to each other or with a given treatment.

Behavioral monitoring . Many of the self-management strategies require behavioral changes to be made. Thus monitoring or tracking the use of individual self-management skills can help with adherence and habit formation. For example, if an individual wishes to learn relaxation skills, it can be helpful to monitor time spent practicing relaxation daily. The same could be helpful if the individuals were trying to increase exercise time or monitor dietary intake. Behavioral monitoring helps establish routines but can also be used in combination with symptom monitoring to identify which behavioral changes are beneficial in altering the s.p.a.c.e symptom cluster.

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