(p. 152) Conclusions and Future Directions
This concluding chapter is devoted to a summary of the significant progress that has been made over the past decade in regard to children’s pain care and specifically in psychological treatment of pediatric chronic pain. Furthermore, this chapter serves as a call to action and identifies priorities in research, clinical care, advocacy, and training to better serve children with chronic pain in the next decade.
Progress in Pain Care and Research
In the past decade, there has been recognition that pain is under-diagnosed and under-treated in children and adolescents. This recognition has spurred advocacy efforts, largely advanced by professional organizations (such as the International Association for the Study of Pain). Advocacy efforts have also emerged from events affecting health care. For example, in the United States, an important event that led to changes in pain treatment in hospitals occurred in 2000, when the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) released new standards for the assessment and management of pain in the facilities they accredit and certify. JCAHO required all facilities to have pain assessment tools in place for all patients and to have documentation of pain assessments in medical records. These requirements led to the formation of pain committees within (p. 153) hospitals and organizations to develop and mobilize plans for how institutions would respond to the mandate. Positive changes in pain assessment and reassessment were fueled by these new standards, which remain in place today. Later in the year 2000, President Clinton signed a law that declared the ten years beginning January 1, 2001, as the Decade of Pain Control and Research. This law prompted increased federal funding and advocacy for pain control in the United States.
There has been tremendous scientific progress and discovery over the past decade in uncovering mechanisms of chronic pain, better understanding of the epidemiology of chronic pain, the development of more comprehensive patient-oriented assessment tools, and the evaluation of novel treatment strategies. A major paradigm shift occurred in understanding of chronic pain as a discrete disease entity that alters the entire nervous system. This shifts the view of chronic pain from simply a symptom of trauma, infection, inflammation, or surgery to a disease in its own accord, worthy of study.
New epidemiological investigations have been conducted that have demonstrated that chronic pain is becoming a more frequent and common problem in young people around the world. Prevalence of chronic pain in childhood has increased over more recent decades (Hakala, Rimpela, Saarni, & Salminen, 2006), and are similar across continents, suggesting that chronic pain in children is a global issue. In these contemporary studies of pain prevalence, an estimated 20 percent to 40 percent of children and adolescents in community samples report experiencing persistent pain (e.g., Stanford et al., 2008). Pain that is accompanied by moderate to severe disability is estimated to occur in five percent of children (Huguet & Miro, 2008), which is very similar to estimated percentages in the adult population.
Longitudinal studies have also demonstrated that children who experience chronic pain are at risk for pain in adulthood, including the continuation of the same pain from childhood as well as the development of new pain complaints (e.g., Walker et al., 2010). Studies of the longitudinal course of pain are critically important for understanding the natural history of chronic pain. Such research may help identify patients at long-term risk for chronic pain, as well as points at which psychological treatments can be implemented.
Understanding the mechanisms that may be involved in the development of chronic pain has also been a major research focus during this decade through studies using brain imaging such as functional magnetic resonance imaging (fMRI) and psychophysical pain assessments, and genetic and twin studies. Laboratory-based conditioned pain-modulation paradigms are newer methods that have been developed to test the efficiency of endogenous analgesia, which is the ability to modulate pain messages sent from peripheral nerves. Deficiencies in conditioned pain modulation are measured by comparing pain ratings during a test stimulus (e.g., heat to dominant hand) and a concurrent conditioning stimulus (e.g., hot water bath on non-dominant hand). Poor pain modulation has been identified in adults with chronic pain disorders such as headache and fibromyalgia, when compared to healthy controls (e.g., Cathcart, Petkov, Winefield, Lushington, & Rolan, 2010; (p. 154) Lautenbacher & Rollman, 1997). Moreover, deficient pain modulatory mechanisms have emerged as important predictors of a range of outcomes, including risk for severer postoperative pain (Landau et al., 2010) and the development of new-onset temporomandibular joint disorders (TMJD) (Diatchenko et al., 2005). In the near future it may be standard practice to identify individuals at risk for developing chronic pain in the office or clinic using psychophysical pain assessments. Such assessment of pain risk may in turn lead to personalizing pain treatment. Much work is anticipated in this area over the next decade; in particular, because pain modulatory mechanisms have primarily been studied in adults, studies in children are needed as well.
Brain imaging may also help us discover and define the biomarkers of pain. Importantly, brain imaging has potential not only to further knowledge of brain function in different pain states (e.g., acute vs. chronic), but also to help us better understand the effects of treatment (Borsook & Becerra, 2011). For example, in a recent study evaluating meditation using brain imaging, changes in pain were related to changes in brain activity. Specifically, investigators found that meditation-induced reductions in pain intensity ratings were associated with increased activity in the anterior cingulate cortex and anterior insula, areas involved in the cognitive regulation of nociceptive processing (Zeidan et al., 2011). Brain imaging studies of the future may provide further support for the effect of CBT on producing lasting changes in brain activity in patients with chronic pain.
Another area of focus and innovation has been in methods of tracking patients who are treated for chronic pain to understand who benefits from which pain interventions. This work has included creating pain registries and the widespread use of electronic data collection. Electronic medical records have made this endeavor more conceivable as clinics can now integrate various forms of electronic data about the patients they care for in clinics. With the increased emphasis on patient-outcome assessment, many pain clinics are using electronic methods to collect standard outcomes on each patient evaluated and treated through the clinic. It will not be uncommon for the pain clinic of the future (this is already happening in some clinics) to have patients log in to a Web portal either from home or in the clinic waiting room to complete patient-oriented assessment tools prior to their visit. The results of these assessments may then be transmitted directly to the clinic provider, and an algorithm may generate ideas for further intervention. Moreover, there are now computerized adaptive testing measures available for assessing pain and pain interference in adults, with current efforts in place to also develop these tools for children (e.g., Varni et al., 2010).
Emergent Clinical Issues Over the Past Decade
There have also been emerging issues in clinical pain management over the past decade, particularly in regard to the extraordinary increase in opioid prescriptions for chronic pain. In adults with chronic pain, a major focus of the past decade (p. 155) has been on consideration of which patients could benefit from opioids and which may be at risk for misuse. Treatment of chronic pain has for many years been a paradox for providers. Although there is recognition that chronic pain is under-treated, when it is treated in adults, there is an over-utilization of pharmacological treatments and invasive devices (e.g., spinal cord stimulators). In particular, chronic pain practitioners have argued strongly that the “wrong” treatments have been the most often provided.
To address these issues, many guidelines for treatment of common adult chronic pain conditions have been put forth in recent years (for example, see Chou et al., 2007, for a low-back-pain guideline commissioned by the American Pain Society). There has also been conflict between physician and patient (and physician and regulatory and payment authorities) that has led to the creation of federal and state initiatives, particularly around rules on chronic, non-cancer pain management, and dosage limits on opioids. Opioid overdose has received considerable media coverage, and the public understanding of issues related to safe handling of opioids has been the source of recent public campaigns (e.g., American Chronic Pain Association).
Although children have been mostly excluded from laws and guidelines pertaining to opioid use for chronic pain management, these concerns are pertinent to children and adolescents presenting for treatment of chronic pain. Pharmacological treatments are frequently used in children for chronic pain management, despite the absence of appropriate efficacy data (Finley & Gregoire, in press). In addition, the public view of pain and pain treatment may influence children’s expectations and preferences for different pain management interventions.
Call to Action
Although significant progress has been made in many areas of pain care and our understanding of chronic pain, there is much left to accomplish. In particular, there is still limited information about pain prevalence in certain pediatric populations. For example, there are few epidemiological data on the prevalence of chronic pain in under-represented minority populations. While the sociodemographic characteristics of children who present for treatment in pain centers have been described as primarily Euro-Caucasian (e.g., Eccelston, et al., 2003; Hainsworth, Davies, Khan, & Weisman, 2009), it is unknown whether children from under-represented minority groups are less likely to seek care for chronic pain. The factors that lead to identification and referral for pain management are unknown. Moreover, access to pain services, which is already limited for children, may be even more limited for ethnic minority populations. In adults with chronic pain, issues related to access have been identified as a primary factor limiting appropriate pain treatment (Green et al., 2003). Future research is needed to (p. 156) understand the prevalence of pain in ethnic minority groups by over-sampling these populations. Research on primary care and specialty care referral patterns of children with pain may also shed light on these complex issues.
In addition, there are gaps in our understanding of pain prevalence and pain management in children with chronic health conditions and neurodevelopmental conditions. Over the years, there has been recognition that children with many chronic health conditions experience pain as a consequence of their disease process or treatment regimens. However, epidemiological data on chronic pain typically exclude children with chronic health conditions. Thus, knowledge of the prevalence of chronic pain exists only for select chronic health conditions (e.g., arthritis) in which research has been conducted, while for other conditions, such as childhood cancer or spina bifida, the occurrence and prevalence of chronic pain remains poorly described.
Perhaps even more striking is the limited focus on testing psychological interventions for chronic pain in children with chronic health conditions. To date, the evidence base for CBT for chronic pain is drawn primarily from studies conducted in children with headache or abdominal pain (who do not have comorbid chronic health conditions). Although pilot studies and case reports describe promising application of CBT to children with a range of different health conditions, future larger-scale trials are critically needed. Multi-site studies will be necessary to recruit large enough populations of children with chronic health conditions into studies of CBT for chronic pain management. One important question that may be addressed in future treatment studies concerns whether the same CBT interventions used in more general chronic pain populations are effective, or whether more tailored interventions are needed for specific disease groups.
Advocacy for Children with Chronic Pain
Over the past decade, funding of pain programs has not kept pace with the increased need for interdisciplinary services for this population. Thus, despite the existence of effective interventions, expertise to treat children and adolescents with chronic pain is not available in most communities. And even when available, manpower and resource issues at most treatment centers prohibit intensive or longer-term treatment. Very little attention has been devoted to how interdisciplinary pain services are organized, although this is an area ripe for quality improvement and continuous performance-improvement efforts. Solutions are needed to enhance manpower, resource allocation, and structure and flow to more effectively utilize limited resources. In adults who are on waiting lists to be evaluated in multidisciplinary pain clinics (Guerriere et al., 2010), studies have shown tremendous societal costs of their pain, further demonstrating the economic burden of untreated chronic pain. Such effects in children are unknown at this time. However, using resources more effectively may enhance access, reduce waiting times, and better match treatment intensity to the individual needs of the child and family.
(p. 157) There are many shifts occurring in health care systems around the world that may impact psychological treatment. In the United States, the American Psychological Association has advocated several issues that affect clinical psychologist practice, including mandatory mental health and substance-use services and mental health and substance-use parity requirements for exchange plans. Of particular relevance to chronic pain management are two priorities focused on integrating medical and mental health care. Within the private health care system, there is a proposal for a grant program integrating mental health into primary care with the establishment of interdisciplinary health teams to support primary care practices. The second proposal is for chronic care coordination fostered through a Medicaid state plan option allowing individuals with one or more chronic conditions, including mental health disorders, to designate a “health home.” If successful, such initiatives may ultimately expand opportunities and funding for clinical psychologists who work with children with medical conditions such as chronic pain.
There has also been momentum with many changes in the health care system to show effectiveness of treatments via the use of standardized outcomes. This is a challenge that can be readily addressed by clinicians who deliver CBT for chronic pain. There are now many well-validated tools to measure pain impact and pain-related outcomes in children and adolescents. These tools can be used in many different settings with the guidance emerging on how to implement pain outcome assessment into routine follow-up visits (Lynch-Jordan et al., 2010). Clinicians who implement CBT for chronic pain are poised to contribute substantially to these ongoing efforts.
There are important advocacy efforts needed to ensure that children with chronic pain are considered in health care initiatives. Local efforts to advocate appropriate coverage of pain management services have been successful in some instances. For example, in one interdisciplinary pain program, an agreement was made with a large health maintenance organization to bundle medical and psychology services together for all patients referred for assessment and management of chronic pain. This advocacy effort was important to ensure that this insurer did not exclusively cover medical services, limiting the ability to provide psychology services to these patients. Insurance and billing issues are critically important to surmount so that sustainable programs and services can be developed. Psychologists who serve in administrative leadership positions in pain programs have an important platform for advocating the value of psychological services for pain management.
Psychological Treatment Innovations
Given the struggles in providing access to pediatric patients, it is principally important at the same time to consider ways to innovate in our psychological treatment approaches for chronic pain. Because the overarching goal of treatment is to enhance children’s functioning (above and beyond addressing pain relief), (p. 158) psychological treatment innovations should explicitly consider ways to address functional impairment. Surprisingly, clinicians have written very little about the psychological pain interventions they deliver, including the specific focus of the intervention, the intention and target of the intervention, or the processes (e.g., self-efficacy, improved coping) presumed to account for any change. Thus, there has been limited ability to link any given CBT intervention (such as cognitive restructuring) to the more distal outcome of improvement in daily function.
There remain opportunities to contribute new theories and conceptual models that link cognitive and behavioral strategies to the processes that may in turn lead to children’s functional improvements. One treatment development that has attempted to incorporate theory is acceptance and commitment therapy for chronic pain. The stated objective of this treatment is to improve functioning by increasing the patient’s psychological flexibility, a process that can be measured. Although it remains to be demonstrated whether ACT as delivered for pain management accomplishes this goal, this is an example of linking intervention content to change processes. Such work could be accomplished for other CBT interventions. In particular, several priorities in the psychological treatment of chronic pain are to further understand common and specific treatment mechanisms in psychological pain interventions, to measure treatment process outcomes, and to assess individual differences in treatment response (for an excellent discussion of these issues, see Jensen, 2011).
In recognition of the need to provide readier access to psychological interventions, another major source of innovation is in new models of delivering treatment. To this end, there are now excellent examples of CBT delivered in one to three sessions (e.g., Levy et al., 2010; Logan & Simons, 2010), by phone (Hicks et al., 2006), and by the Internet (e.g., Palermo et al., 2009). Such innovations are crucial for addressing barriers to care for children with chronic pain, and in particular for children who live in rural areas. School-based delivery of CBT is another viable option for reaching broader populations of children, and especially in mass pain-prevention efforts. Remote work with children and families could change the way that the public accesses behavioral interventions and may also increase their acceptability.
An area that has not yet received any empirical study is in understanding how to screen for and determine the treatment needs of children with chronic pain. Effective screening of children with chronic pain may match particular interventions to the needs of individual patients. For example, there may be characteristics of children and families that make them ideally suited for certain types of interventions (e.g., relaxation training) or for remote intervention (e.g., computer, phone); while other children may be better served through specific interventions delivered through face-to-face care. Future research focused on screening and identifying treatment needs will be critical for guiding the limited available treatment resources. Moreover, screening may also be conducted in otherwise healthy populations or those deemed at some increased risk to prompt prevention or early intervention. CBT has not yet been effectively used to prevent or provide early intervention for chronic pain. Future research focused on (p. 159) identifying children at risk for developing chronic pain based on their experience of acute pain, their coping, pain modulation ability, or family and genetic risk may guide these efforts.
Training in Psychological Aspects of Chronic Pain Management
Training in the psychological aspects of pediatric chronic pain and its treatment is also an important priority. Pain is a cross-cutting issue, pertinent to the care of children with many different health and mental health conditions. Health care professionals working with pediatric patients should have a basic understanding of how to conduct a developmentally appropriate chronic pain assessment. Moreover, clinicians who provide psychological interventions should receive instruction in core cognitive-behavioral interventions for chronic pain. Trainees in medicine, psychology, nursing, rehabilitation, and social work have opportunities to learn how to contribute to medical teams to provide evaluation and management of chronic pain. However, formal courses and instruction in pain management in children are scarce in training programs, with most exposure to pain management obtained through “on-the-job training” in trainees’ clinical work.
Comprehensive pain education is needed in the curriculum of the health care professional at all levels of training. Focusing on the psychological aspects of chronic pain, at a minimum, such education would cover types (and definitions) of pain experienced by children, the physiological basis of pain, the prevalence and epidemiology of pain, conceptual models of chronic pain, its course and prognostic factors, the assessment of pain, common medical interventions for pain, and instruction in core components of CBT for pain management. Essential components of an educational curriculum focused on psychological aspects of chronic pain and its treatment are listed in Table 12.1.
Table 12.1 Essential Components of Education in Psychological Aspects of Pediatric Chronic Pain and Its Treatment
Advanced training (i.e., fellowship training) is essential for health care professionals who want to devote significant professional time to pediatric chronic pain management. There are fellowships available in the United States and in other parts of the world, focused on clinical training and research training in pediatric pain and primarily geared toward physicians and psychologists. Continuing education in pain management for professionals is also important. Practitioners in the field need to stay abreast of new developments in the understanding of chronic pain as well as of advances in assessment and management. In the United States, many individual state licensing boards in multiple health professions (including psychology) have now mandated continuing education in pain management.
Perhaps once considered a “fringe” treatment, CBT is now a mainstream treatment and becoming a standard of care for children and adolescents with chronic (p. 160) pain. There is more evidence to support CBT for pediatric chronic pain than for any other pharmacological, physical, or complementary medicine intervention. Over the past decade, research has emerged on the mechanisms of chronic pain, and it is becoming ever more evident that cognitive and behavioral treatments are an integral solution to address the complex changes in the brain, behavior, and environment that contribute to chronic pain.