Chronic pain

C H A P T E R

6 Chronic pain Delana M. Parker, Lauren E. Harrison, Laura E. Simons Department of Anesthesiology, Perioperative and Pain Medicine, Stanford University School of Medicine, Palo Alto, CA, United States

Overview of pediatric chronic pain Pediatric chronic pain is defined as pain that recurs or persists for 3 months or longer and may be the result of an identified disease process or treatment (e.g., inflammatory bowel disease, sickle cell disease) or the primary condition of focus (e.g., fibromyalgia, recurrent abdominal pain) (Treede et al., 2019). Acute pain is experienced when nociceptive signals are generated from peripheral nerves throughout the body and transmitted to the central nervous system, relayed through the dorsal spinal horn and the thalamus to be processed by the somatosensory cortex and higher cortical regions. Once processed, a descending signal is transmitted to block incoming nociceptive input. Broadly, the transition from acute to chronic pain states is the result of neural plasticity. With repeated firing, connections between the peripheral and central nervous system are strengthened and potentiated such that pain signals are transmitted at increasingly lower thresholds. Many chronic pain conditions are centrally mediated and maintained, such that pain signals transmitted to cortical regions are also amplified at the dorsal horn and thalamus, and descending inhibition fails (Sluka & Clauw, 2016).

Prevalence Pediatric chronic pain impacts an estimated 25% of children worldwide (King et al., 2011) and is associated with an annual cost of more than $19.5 billion in the United States alone (Groenewald, Essner, Wright, Fesinmeyer, & Palermo, 2014). Although prevalence rates vary across pain conditions, worldwide epidemiological data indicate that the most frequent chronic pain condition in children and adolescents is headache, which occurs in 8%

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e83% of children (Coffelt, Bauer, & Carroll, 2013; King et al., 2011). Other common pain conditions include abdominal pain (4%e53%), musculoskeletal pain (4%e40%), and back pain (14%e24%), with many children reporting multiple pain complaints (4%e49%; King et al., 2011). Rates of pain are typically higher in females and increase with age across most pain conditions (King et al., 2011) with prevalence rates highest among adolescent females 14e16 years of age (Perquin et al., 2000).

Assessment Pain is a subjective experience and assessed with developmentally appropriate standardized rating tools (Cohen et al., 2007). Frequently used and well-validated pain rating scales include the visual analog scale, the Faces Pain Scale (Hicks, von Baeyer, Spafford, van Korlaar, & Goodenough, 2001), the Numeric Rating Scale (von Baeyer et al., 2009), and the Varni-Thompson Pediatric Pain Questionnaire (Varni, Thompson, & Hanson, 1985). Children are typically asked to provide a subjective rating of current pain and often also include average, worst, and least pain. In addition to numerical ratings, children may be asked to choose sensory-affective labels that correspond to their pain experience (e.g., burning, stabbing, throbbing). Among infants and individuals who are unable to communicate about their pain experience, behavioral rating scales may be used to assess pain (Cohen et al., 2007).

Impact Beyond the importance of pain intensity and quality, pediatric chronic pain also has many functional consequences, often affecting children and families across multiple domains. For example, children with chronic pain conditions miss considerable amounts of school (Palermo, 2000). Additionally, chronic pain has been shown to negatively impact mood and anxiety (Eccleston, Crombez, Scotford, Clinch, & Connell, 2004), sleep (Valrie, Bromberg, Palermo, & Schanberg, 2013), family functioning (Palermo, Valrie, & Karlson, 2014), and social functioning (Simons, Logan, Chastain, & Stein, 2010). Pain severity, level of functional impairment, cognitive and affective functioning, as well as various parental and family factors, have been shown to be associated with the prevalence of these chronic pain conditions in children (Coffelt et al., 2013; Peterson & Palermo, 2004).

Treatment Treatment for chronic pain is largely informed by the biopsychosocial model of pain, which acknowledges pain as an aversive sensory and emotional experience subject to influence by biological, psychological,

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and social factors. As such, treatment is multimodal, with a role for pain medicine, psychology, physical therapy, and complementary or alternative medicine (Hechler et al., 2014; Simons & Basch, 2016). Pain medicine may include pharmacologic treatment or interventions, aimed at ameliorating the pain. Pharmacological treatment of pediatric chronic pain frequently includes use of tricyclic antidepressants, serotonin and norepinephrine reuptake inhibitors, and medications that block sodium channels (i.e., gabapentin and antiepileptic medications; Landry et al., 2015). Use of cannabidiol oil, a marijuana derivative without psychoactive properties, is becoming more common to potentially provide pain relief. Opioids, which are helpful in management of acute pain, are not indicated in treatment of chronic pain due to inefficacy and significant risk for abuse and addiction (Wren et al., 2019). Additional pain medicine interventions may include procedures to provide temporary or permanent local/regional anesthesia through injection of steroids and anesthetics, radio frequency nerve ablation, or insertion of a nerve stimulator device. Physical interventions (i.e., physical therapy) facilitate strengthening and reconditioning with professional guidance in pacing physical activity to prevent a cycle of over activity, pain exacerbation, and subsequent activity avoidance. Physical therapists also provide plans for home exercise programs that promote generalizability to the home environment. Physical therapy may include interventions, such as use of heat or icing, soft-tissue mobilization, transcutaneous electrical nerve stimulation unit, or ultrasound therapies. Complementary or alternative modalities that facilitate pain relief and relaxation include acupuncture, massage, and yoga. Psychological treatments target enhancing motivation for a selfmanagement approach to pain, addressing problematic pain-related beliefs and increasing engagement in adaptive behaviors among parents and children. Optimally, participation in each of these modalities will support participation in the others, with coordination among treatment providers and modalities, ultimately facilitating improved outcomes for patients. Treatment may occur in an outpatient, intensive outpatient, or inpatient rehabilitation settings. Although a multimodal, interdisciplinary intervention is associated with better outcomes, within these interventions, cognitive-behavioral therapy (CBT) is considered the gold standard of care for children and adolescents with chronic pain (Palermo, Eccleston, Lewandowski, Williams, & Morley, 2010). There is more evidence to support CBT for pediatric chronic pain than for any other pharmacological, physical, or complementary medical intervention (Law, Fisher, Fales, Noel, & Eccleston, 2014). CBT for chronic pain typically includes psychoeducation, relaxation training, cognitive skills training, behavioral exposures, and parent involvement (Williams, Eccleston, & Morley, 2012). The

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components of CBT for pediatric chronic pain are further described in the following section.

Cognitive-behavioral interventions for children with chronic pain Psychoeducation Psychoeducation is an extremely important component of treatment and serves to provide the child and family with an explanation and conceptualization of chronic pain. Specifically, the nonprotective nature of persistent pain signals being transmitted by the body and processed in the brain is emphasized versus a biomedical explanation for the presence of pain. Psychoeducation includes explanation of two key theories: Gate Control Theory of Pain (Mendell, 2014) and the Fear Avoidance Model of Chronic Pain (Vlaeyen & Linton, 2012). The Gate Control Theory of Pain explains the process by which the brain can be used to potentially modify the experience of pain sensations. The Fear Avoidance Model of Chronic Pain describes how heightened fear and continued avoidance of activities that might induce pain or make it worse lead to prolonged disability. The overarching goal of psychoeducation is to provide a rationale for the use of psychological interventions to address pain intensity and restore functioning and serves to shift the conceptualization of chronic pain away from a biomedical conceptualization.

Relaxation training Relaxation-based strategies typically include instructing children in deep-breathing exercises, progressive muscle relaxation, and imagery. Direct benefits of relaxation training for children with chronic pain include achieving a relaxation response in the body that may slow heart and breathing rate, increase blood flow to the muscles, and decrease muscle tension (e.g., Kashikar-Zuck, Vaught, Goldschneider, Graham, & Miller, 2002). These bodily changes directly reduce the experience of stress, anxiety, and muscle tension associated with chronic pain (e.g., Hicks, von Baeyer, & McGrath, 2006).

Cognitive skills training Cognitive skills training is a commonly used treatment component for pediatric chronic pain (Palermo, 2012), with thought stopping and cognitive restructuring used most frequently (Hicks et al., 2006). Problemsolving (e.g., Kashikar-Zuck et al., 2002) and positive self-talk (e.g., Robins, Smith, Glutting, & Bishop, 2005) are also effective cognitive techniques for reducing pain-related disability in children with chronic

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pain. Developmental considerations are critical in teaching cognitive skills to children (Palermo, 2012). Although cognitive skills are appropriate for younger children, care must be taken to use developmentally appropriate language and concepts.

Behavioral exposures Exposure therapy is a commonly used behavioral technique primarily developed for the treatment of anxiety disorders and consists of exposing the individual to the anxiety source with the overall goal of helping to decrease anxiety or distress (e.g., Abramowitz, Deacon, & Whiteside, 2019). Vlaeyen, de Jong, Geilen, Heuts, and van Breukelen (2002) targeted fear of pain and disability by exposing individuals to activities they previously avoided due to the fear of pain associated with that activity. Through behavioral exposures, individuals engage in a previously avoided activity without experiencing anticipated catastrophic consequences; thus, misinterpretations are challenged and disconfirmed, resulting in a correction of fear expectancies, ultimately leading to fear extinction and cognitive regulation (Goubert, Crombez, & Danneels, 2005). Wicksell, Melin, Lekander, and Olsson (2009) conducted a randomized control trial of a 10-session Acceptance and Commitment Therapy (ACT)ebased treatment with exposure in adolescents with chronic pain, which led to greater reductions in pain, disability, pain-related discomfort, and fear of pain compared with standard multidisciplinary treatment.

Acceptance and commitment therapy The beliefs an individual develops regarding their pain experience may be particularly maladaptive and difficult to change. For example, a child may have the thought, “The last time I played soccer with my friends, my leg hurt so badly I couldn’t walk the next day. I don’t think it’s a good idea for me to play again.” ACT can be an effective method for addressing unhelpful thinking patterns as it seeks to shift the focus away from changing thoughts to changing how one relates to their thoughts (Zettle, Rains, & Hayes, 2011). More specifically, ACT focuses on changing the relationship with the distressing thoughts by creating distance between the individual and the thought (e.g., having a thought vs. believing a thought (Masuda, Feinstein, Wendell, & Sheehan, 2010). Beyond cognitive defusion techniques, another goal of ACT is to address experiential avoidance through the use of behavioral exposure. ACT is an effective treatment modality for children and adolescents with chronic pain (Pielech, Vowles, & Wicksell, 2017). One study by Wicksell, Kanstrup, Kemani, Holmstrom, and Olsson (2015) compared an ACT-based intervention to standard multidisciplinary treatment in

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pediatric chronic pain and found that individuals in the ACT condition demonstrated greater improvement across domains (such as functional disability, health-related quality of life) compared with those individuals in the standard treatment arm. Additionally, individuals within the ACT treatment condition maintained improvements months after discharge from treatment (Wicksell et al., 2015).

Parent involvement Although the aforementioned interventions often consider the child to be primary treatment target, it is important to note that parents play a critical role in CBT for chronic pain, even when inventions are not focused on parent characteristics, such as distress or psychological functioning (Palermo, 2012). Parents are often involved and taught the CBT skills that the child learns so that they are better able to help their child carry out the interventions at home (Palermo, 2012). Parent involvement in treatment requires skill building focused on shifting their understanding and responses to their child’s pain. To this end, parent involvement in treatment typically focuses on teaching operant techniques to guide parents in responding to their child’s pain (e.g., shifting parent responding away from pain symptoms and dysfunction and instead having them attend to efforts toward functioning and appropriate coping by the child or adolescent) (Sanders, Shepherd, Cleghorn, & Woolford, 1994) or helping the child to manage and cope with pain (Robins et al., 2005). Overall, there is good evidence supporting the efficacy of psychological therapies reducing pain severity and associated disability in children with chronic pain (Fisher et al., 2014). However, to truly evaluate the impact of pain interventions, it is critical to know the degree to which patients engage in treatment and adhere to treatment recommendations. The following section will discuss the various factors that influence treatment engagement within pediatric chronic pain populations.

Research on treatment engagement in pediatric chronic pain Ultimately, to truly evaluate the impact of pain interventions, it is critical to know the degree to which youth engage with or adhere to treatment recommendations. Despite its importance, treatment adherence has rarely been studied in pediatric chronic pain populations. The first study to examine treatment adherence following multidisciplinary evaluation in a pediatric pain clinic found adherence rates ranged from 47% to 100% across medical, physical therapy, and psychological recommendations (Simons, Logan, Chastain, & Cerullo, 2010). Parent reports of adherence to each recommendation were collected using the Adherence Telephone Interview (MacNaughton & Rodrigue, 2001) classified as fully, partially, or nonadherent. For medical recommendations, parent satisfaction with treatment and expectations that medical tests would be beneficial were

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associated with greater adherence. Negative attitudes toward recommendation and prior experience with surgery were associated with decreased likelihood of adhering to medical treatment recommendations. Adherence to physical therapy recommendations was predicted by the belief that treatment would be effective and fewer resource barriers (e.g., time) to engaging in treatment. Also, if the child already participated in physical therapy, the family continued as recommended 100% of the time. Adherence to psychological treatment recommendations was predicted by familiarity with treatment modalities (e.g., hypnosis and biofeedback), as well as belief of psychological treatment effectiveness. Across all recommendations, modest associations with treatment adherence and functional improvement at follow-up were detected (Simons, Logan, Chastain, & Cerullo, 2010). Although informative, this study was limited by use of only self-report measures of treatment adherence, including limited information on degree of adherence or nonadherence. In a study focused on adherence to psychological treatment recommendations (Claar & Simons, 2011), treatment to bolster pain coping skills was recommended for 53.7% of participants, and cognitive-behavioral treatment was recommended to 32.9%. At 3-month follow-up, approximately half of each group had followed through with recommendations to initiate psychological treatment. Engagement in multimodal treatment recommendations has also been studied among children with chronic pain in Germany via semistructured interviews with parents (Barth, Wager, Huebner-Moehler, & Zernikow, 2016). Twelve months after the initial pain evaluation, high levels of adherence to lifestyle change (93.5%), use of medication (91.6%), and physical therapy (83.3%) were reported. Relatively lower levels of adherence to active relaxation (46.6%) and outpatient psychotherapy (40.7%) were reported. Although not directly measuring treatment engagement, a measure of readiness to adopt a self-management approach to coping with chronic pain has been developed (Guite, Logan, Simons, Blood, & Kerns, 2011). Youth and parents who completed this measure at the time of initial pain clinic evaluation endorsed varying levels of readiness to self-manage pain. Over half (59%) of parents and 25% of adolescents endorsed adoption of a self-management approach. These results suggest that compared with adolescents, parents are more receptive to adopting the types of self-management pain approaches recommended by multidisciplinary pain treatment clinics. However, a significant portion of adolescents and parents state they are not yet ready to self-manage pain and may struggle to engage in recommended treatment.

Evidence-based assessment of treatment engagement Standardized measures of treatment engagement have not yet been developed for use in a pediatric pain population. Several challenges

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inherent to measuring engagement in pediatric chronic pain include treatment plans that are most often multimodal and include three or more recommendations (Simons, Logan, Chastain, & Cerullo, 2010), that are frequently revised with input from the child and family, and that include behavioral change recommendations that are difficult to assess objectively. Although systematic assessment is lacking, prior studies focused on pediatric pain have obtained parent report of treatment engagement, sometimes adapting measures developed for use in other pediatric populations. The Adherence Telephone Interview Form (MacNaughton & Rodrigue, 2001) was used to capture parent report of treatment engagement via telephone interview (Simons, Logan, Chastain, & Cerullo, 2010). When used in a pediatric pain sample, individuals were classified as “fully adherent” for each treatment recommendation that parents reported completion of or engagement in. For recommendations not initiated or pursued, individuals were classified as “nonadherent.” Youth were considered “partially adherent” if they pursued or initiated but ultimately did not complete the recommendation. When used by Simons, Cerullo et al. (2010) to assess engagement in pediatric pain, scores were calculated individually for recommendations within a discipline (i.e., medical, physical therapy, psychological) and then summed.

Guiding theories of self-management in pediatric pain Although accumulating research supports the efficacy of multimodal treatments for pediatric chronic pain, little is known about the effectiveness of treatment in community samples where a multitude of factors influence the success of child and family efforts to reduce pain and improve function. As outlined in the Pediatric Self-Management Model, the behaviors a child or caregiver engages in to manage a child’s chronic illness are defined as self-management behaviors (Modi et al., 2012). Self-management behaviors interact with a number of modifiable and nonmodifiable influences at multiple ecological levels, including the individual, family, healthcare system, and community. The interaction of these contextual variables and self-management behaviors often results in a greater degree of convergence between a child’s behavior and treatment recommendations, which we refer to here as treatment engagement, but which has sometimes been referred to as adherence or compliance in past literature. Although few studies have directly examined treatment engagement in pediatric chronic pain, there is a rich literature linking biopsychosocial factors to pediatric pain outcomes. Many of these factors potentially impact treatment engagement and are reviewed in the following section with rationale for their inclusion. Fig. 6.1 illustrates the individual, family, community, and healthcare factors that potentially affect treatment

FIGURE 6.1 The Pediatric Self-Management Model for Chronic Pain. Individual and family risk and resilience factors are often shared by family members, and likely to change over the course of development. Individual and family intent to engage in treatment may be influenced by interactions with the healthcare system, health care providers and community resources. Barriers commonly faced by children and families may impede ability to act on chronic pain self-management recommendations. Treatment engagement may be influenced by characteristics of the treatment such as complexity and aversiveness of the regimen. Engagement in self-management of pain impacts pain outcomes, including functional abilities and pain experience. Pain outcomes may also alter the likelihood of ongoing treatment engagement over time

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engagement, all considered within a biopsychosocial framework. Although several factors within the model have not yet been examined, we provide a framework for examining these potential influences, adapted from the Pediatric Self-management Model (Modi et al., 2012). Within this model, a child’s self-management behaviors are impacted by modifiable and static individual, family, community, and healthcare factors. In turn, selfmanagement behaviors are associated with treatment engagement, including attending appointments, taking medications as prescribed, participating in physical therapy, and participating in CBT for pain management. Treatment engagement is likewise hypothesized to be associated with pediatric pain outcomes. Successful treatment in the context of pediatric pain is most often marked by improvements in function and psychological well-being rather than decreased ratings of pain. Although treatment includes interventions that are aimed at pain reduction, consistent with treatment goals to deemphasize and decatastrophize the chronic pain experience, there is an emphasis on improvement in functional impairment and life engagement as the outcomes of utmost importance. In fact, treatment engagement can initially result in an increase in pain symptoms while the child simultaneously increases function. Outcomes of treatment engagement may include functional improvements such as increased strength and stamina, or improved academic performance, as well as less favorable consequences including short-term increases in discomfort and fatigue. Outcomes of treatment engagement are hypothesized to impact future individual, family, community, and healthcare factors. Across time, contextual factors may change with child development and shifts may similarly occur in community and healthcare systems. Taken together, we put forth a model, adapted from the Pediatric Selfmanagement Model, in which these contextual factors influence selfmanagement behaviors, treatment engagement, and pain-related outcomes. The following sections will provide additional information about each contextual factor, followed by a case study illustrating how many of the factors within this model impact treatment engagement.

Individual and family processes Psychological well-being Depressive symptoms predict children’s experience of pain-related functional impairment across time (e.g., Hoff, Palermo, Schluchter, Zebracki, & Drotar, 2006) and are likely to impact motivation to engage in pain self-management behaviors. Negative mood has been associated with increased pain and functional disability in children with chronic pain (Kashikar-Zuck, Goldschneider, Powers, Vaught, & Hershey, 2001) and may result in these outcomes through compromising internal resources needed to pursue self-management behaviors. Resilience factors such as self-efficacy, motivation, and optimism promote increased engagement in

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appropriate pain management strategies, as well as adaptive pain coping and adjustment (Cousins, Kalapurakkel, Cohen, & Simons, 2015). Parent psychological well-being is similarly an important factor to consider in understanding treatment engagement. A significant number of parents of youth with chronic pain experience clinically significant psychological distress (e.g., Eccleston et al., 2004). Depression and anxiety disorders are particularly prevalent among mothers of children with chronic pain conditions (Campo et al., 2007; Walker & Greene, 1989). Mothers of adolescents with greater pain-related functional disability endorse higher stress, anxiety, and depression than do mothers of less impaired adolescents with chronic pain (Cohen, Vowles, & Eccleston, 2010). Although much less is known about the psychological functioning of fathers of children with chronic pain, preliminary investigations suggest they also struggle with emotional distress associated with child chronic pain (Eccleston et al., 2004; Jordan, Crabtree, & Eccleston, 2016). Parental psychological well-being may compromise parental ability to engage in adaptive pain-related parenting behaviors and reduce internal resources to manage treatment demands. Pain-related distress Pain catastrophizing includes rumination, magnification, and feeling helpless about pain (Jordan, Eccleston, & Crombez, 2008), and both child and parent pain catastrophizing about child pain are associated with poorer pain outcomes. Moreover, parent pain catastrophizing is likely to compound parenting stress and worsen psychological function (Caes, Vervoort, Eccleston, Vandenhende, & Goubert, 2011). Moreover, parents who endorse higher levels of pain catastrophizing are less likely to endorse readiness to adopt a self-management approach for their child’s pain (Guite et al., 2014). Pain catastrophizing in children may also reduce their motivation to engage in self-management behaviors that they may not believe will be effective in managing their pain. However, an initial study did not find adolescent pain catastrophizing to be associated with scores on the Pain Stages of Change Questionnaire for Adolescents (Guite et al., 2014). Children with chronic pain also frequently endorse fear of pain, which is associated with physical activity avoidance and increased functional disability (Simons, 2016). Activity avoidance is likely to impact willingness to participate in uncomfortable aspects of treatment and may also interact with other self-management processes as parents observe and respond to their child’s avoidance. Biomedical orientation/diagnostic uncertainty Beliefs about disease etiology and processes also have implications for treatment engagement. For instance, understanding chronic pain as the outcome of complex and interrelated biopsychosocial factors is a paradigm shift from a biomedical understanding of pain that emphasizes pain

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as a signal for tissue damage. Many individuals and families retain feelings of uncertainty regarding their child’s pain diagnosis, even following interdisciplinary pain evaluation, which may interfere with adoption of a biopsychosocial understanding of pain and willingness to engage in recommended treatments (Pincus, Noel, Jordan, & Serbic, 2018). Continued adherence to a biomedical model of pain experience is associated with reduced likelihood of engagement with multidisciplinary treatment recommendations (Guite et al., 2014). Treatment beliefs Parent familiarity with treatment options was associated with treatment engagement across modalities in a study of youth with chronic pain presenting for initial pain evaluation (Simons, Logan, Chastain, & Cerullo, 2010). Familiarity with exercise was associated with engagement with physical therapy following initial evaluation. Similarly, familiarity with biofeedback or hypnosis was positively associated with subsequent engagement in psychological treatment. Conversely, parents of children who had surgery were less likely to adhere to medical recommendations provided at the multidisciplinary evaluation (Simons, Logan, Chastain, & Cerullo, 2010). Although treatment familiarity has not yet been linked to treatment engagement in children, prior treatment history and experiences are likely to similarly impact child willingness to engage in recommended treatments. Anticipated efficacy and helpfulness of treatment are also likely to impact commitment to pursuing pain self-management. In a study of expectations for complementary and alternative medicine interventions, children anticipated the greatest benefit from medication and relaxation interventions (Tsao et al., 2005). Parents anticipated the lowest efficacy for surgery across all potential treatment modalities. Both parents and children had relatively low expectations for the benefit of complementary and alternative medicine treatment, with parent expectations somewhat more positive than those of children. In a study examining treatment expectations and adherence, parent belief that additional medical tests would be beneficial was associated with increased adherence to medical recommendations. Families were more likely to adhere to psychological treatment recommendations if they endorsed the belief that psychological treatment or biofeedback would be helpful (Simons, Logan, Chastain, & Cerullo, 2010). Stigma Stigma associated with certain types of treatment may also play an important role in an individual’s propensity to adhere to treatment recommendations. For example, Claar and Simons (2011) found that approximately 90% of individuals were prescribed behavioral health interventions to gain pain coping skills or address comorbid mental

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health concerns. However, fewer than 50% of youth and families pursued this treatment recommendation, which may be attributed to stigma about psychological treatment (Claar & Simons, 2011). In the context of pediatric pain, families have described feeling that psychological recommendations indicate that providers believe the individual’s pain is “all in their head” or that they have ceased to pursue medical causes or treatment (Jordan, Eccleston, & Osborn, 2007).

Family influences Parent health status Parent health status and pain history are important influences on chronic pain. Poor maternal health and functioning are associated with poorer health and function in children with chronic pain (Anttila, Metsahonkala, Helenius, & Sillanpaa, 2000). Parental pain and disability are significantly associated with the child’s level of pain and disability (Anttila et al., 2000; Goodman, McGrath, & Forward, 1997; Hoftun, Romundstad, & Rygg, 2013; Palermo et al., 2014). Conversely, having a parent who copes with chronic pain successfully may be an advantage for some children with chronic pain in that it may provide an opportunity to learn adaptive pain self-management behavior. Pain-related parenting behavior Parent responses to child pain influence child pain experiences and associated functional outcomes (Palermo et al., 2014). Specifically, maladaptive parent responses, such as reassurance, solicitous, and protective parenting behaviors, reinforce children’s pain behavior or symptom complaints, thus serving to maintain or increase the likelihood of the behavior occurring (Sieberg, Williams, & Simons, 2011). Greater parental reinforcement of children’s pain is also associated with greater functional disability, independent of pain severity (Gidron, McGrath, & Goodday, 1995). Additionally, solicitous responding (e.g., verbally asking about the presence of pain or pain intensity) to pain behavior has been found to be a critical factor that might discriminate between children who become disabled by their chronic pain, as opposed to those who either recover from the pain or learn to cope effectively (Walker, 1999). Family functioning When a child experiences chronic pain, there are consequences for the overall family system (Palermo, 2012; Palermo et al., 2014), including stress to parental relationships, disruptions to family events, and poor family communication (Logan & Scharff, 2005). In families of children with chronic pain, poorer family functioning is indicated by greater conflict compared with families of healthy children and adolescents (Palermo et al.,

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2014). Poorer family functioning is also related to increased pain-related disability in children and adolescents (Anttila et al., 2004; Larsson & Sund, 2007; Logan & Scharff, 2005). Although there is strong support for the negative impact of parent distress and family dysfunction on treatment engagement and associated outcomes, family resilience factors, such as parent support, motivation, and optimism, are also likely to contribute positively to treatment engagement (Cousins et al., 2015).

Community factors Resources and access to care Treatments for pediatric chronic pain remain largely confined to specialty or tertiary care services, which are inaccessible to many families. Difficulties with access are linked with socioeconomic status, wherein children from the most socioeconomically challenged backgrounds are less likely to be referred to a specialty pain service and once referred are less likely to attend appointments (Jay & Howard, 2016). Families who seek multidisciplinary pain treatment are also confronted with long wait times prior to accessing care, which disproportionately affects socioeconomically disadvantaged families. In Canada, wait times are approximately 12 times longer for access to publicly available multidisciplinary pain treatment facilities (Peng et al., 2007), and in the United States, wait times are twice as long for children with Medicaid or HMO insurance relative to those with PPO insurance plans awaiting treatment (Cucchiaro, Schwartz, Hutchason, & Ornelas, 2017). Notably, for families who attend an initial multidisciplinary evaluation, resource barriers are relatively minor compared with the impact of parent and child negative attitudes toward treatment (Simons, Logan, Chastain, & Cerullo, 2010). Similar concerns regarding local outpatient access to physical therapy and psychological and psychiatric treatment are also likely to impact children’s ability to engage in treatment.

Healthcare system factors Provider factors The quality of rapport and communication between individuals and healthcare providers has been demonstrated as an important factor that impacts treatment adherence (La Greca & Bearman, 2003). The clarity of physician explanation of the pain problem, level of agreement with treatment plan formulation, and satisfaction with improvements attributable to treatment were associated with increased adherence to medical recommendations in adults with chronic pain (Hirsh et al., 2005). Among adolescents, provider attitudes and perceived efforts to address pain were ranked among the most important factors impacting satisfaction with care

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(Britto et al., 2004). Among youth with chronic pain, satisfaction with treatment is a predictor of medical treatment engagement. Characteristics of treatment Across treatment modalities (e.g., pharmacological treatment, physical therapy, CBT), therapeutic effects typically are achieved on the order of weeks to months, rather than days or hours. This span of time can be discouraging for even the most dedicated individuals and may lead to reduced engagement in self-management. For multidisciplinary treatment of chronic pain, regular physical activity and physical therapy are routine recommendations to address symptoms of pain and fatigue. Physical interventions such as desensitization, graded activity, and strength training often provoke short-term increases in pain, which may prove discouraging or intolerable. In a systematic review of physiotherapy adherence among adults with chronic pain, higher levels of pain during exercise were associated with lower rates of adherence (Jack, McLean, Moffett, & Gardiner, 2010).

Evidence-based treatment approaches to enhance treatment engagement in pediatric chronic pain To date, there are no empirically supported interventions that promote engagement in pediatric chronic pain treatment. However, many of the extant pediatric pain psychological interventions target the individual and family factors linked with pain experience and function. When a child and family are having difficulty engaging in pain selfmanagement behaviors, the clinician may seek to better understand the factors contributing to these difficulties and choose an intervention accordingly. When pain-related cognitive and affective processes serve as a barrier to engagement to treatment, psychoeducation, cognitive modification, or behavioral exposure may address individual difficulties by promoting a biopsychosocial understanding of pain (Moseley & Butler, 2015), modifying or defusing maladaptive pain cognitions or negative attitudinal barriers that interfere with treatment engagement (Zettle et al., 2011), or indirectly modifying maladaptive cognitions leading to treatment disengagement through behavioral exposure to avoided activities (Goubert et al., 2005; Smeets, Wittink, Hidding, & Knottnerus, 2006). When the family environment is not optimally promoting child engagement in self-management, empowering parents to alter behavioral contingencies and providing education in operant learning may support treatment engagement (Rapoff, 2010; Sanders et al., 1994). The aforementioned strategies are common components of cognitive-behavioral and acceptance-based interventions for pediatric

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pain. Beyond these well-established interventions, several modalities used within other pediatric populations may also be translated to pediatric pain populations to enhance self-management behaviors and processes. Furthermore, innovations in the way multicomponent treatments are delivered to children and families may result in improved treatment engagement by reducing difficulties associated with access to care and by offering more intensive treatment options to optimally support individual child and family needs.

Intensive interdisciplinary treatment Intensive interdisciplinary pain rehabilitation programs typically combine pain medicine, physical therapy, occupational therapy, and psychological services. These programs demonstrate superior functional outcomes relative to outpatient treatment (Hechler et al., 2014), which may in part be due to changes in treatment format that overcome many common treatment engagement barriers encountered by families. For example, appointments with treatment providers occur daily, and individuals participate in a greater number of rehabilitation activities per day relative to standard outpatient care. More frequent and comprehensive emotional support, daily problem-solving of treatment barriers, management of scheduling and insurance concerns, and ability to more quickly titrate medications and physical activity routines may decrease the period of time until perceived treatment benefit occurs. These benefits may be tempered by additional barriers posed by intensive outpatient rehabilitation programs, including the significant time parents and children may need to be away from school or work, insurance coverage and transportation needs, and ability to financially support intensive treatment completion over a short period.

Group-based cognitive-behavioral therapy Offering treatment in group format may result in increased peer support for patients and their parents. One such example is the Comfort Ability workshop that includes both children with chronic pain and their parents (Coakley, Wihak, Kossowsky, Iversen, & Donado, 2018). This workshop is available across 15 children’s hospitals in the United States and Canada. Preliminary evaluation of the Comfort Ability workshop demonstrates improvements in child function, depressive symptoms, and pain catastrophizing that persist at 1-month follow-up. Parents report improvements in parenting practices in response to pain and their beliefs regarding their child’s ability to manage the pain (Coakley et al., 2018). Additionally, participation in group CBT may allow individuals to overcome common treatment engagement barriers by allowing a greater

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number of children to be seen in after school or weekend hours, which may be a more cost-effective treatment option.

Internet cognitive-behavioral therapy or telehealth Treatments delivered remotely may increase treatment engagement, particularly for children who do not have access to psychological or medical treatment. Internet-CBT treatment is self-paced to accommodate individual differences and fluctuating symptoms and is less likely to result in stigma (Long & Palermo, 2009; Palermo, Wilson, Peters, Lewandowski, & Somhegyi, 2009). Telehealth may also reduce barriers to treatment engagement for those who are immobile, postsurgical, or who are living away from caregivers for the first time and learning to independently coordinate treatment and self-management strategies.

Motivational interviewing Motivational interviewing is an intervention designed to enhance personal motivation for change. Willingness to adopt a self-management approach to pain is associated with improved chronic pain treatment outcomes (Logan, Conroy, Sieberg, & Simons, 2012), and motivational interviewing may be a useful tool in increasing motivation to engage in treatment among adolescents with chronic pain.

Dialectical behavior therapy Dialectical behavior therapy (DBT) synthesizes acceptance and change strategies to promote effective progress toward personal goals and reduction of maladaptive target behaviors. DBT for chronic medical illness (DBTCMI; Lois & Miller, 2018) is an adaptation of standard adolescent DBT that targets treatment nonadherence and has been piloted with a small cohort of adolescents with kidney disease (Hashim, Vadnais, & Miller, 2013) and in a case illustration of an adolescent with type 1 diabetes (Lois & Miller, 2018). DBT-CMI was recently proposed as a transdiagnostic treatment to increase adherence in adolescents, and features of treatment including close monitoring and problem-solving skills to maintain treatment engagement, which may prove beneficial among youth with chronic pain.

Case study Ben is a 17-year-old Caucasian male diagnosed with Ehlers-Danlos syndrome, associated postural orthostatic tachycardia syndrome, chronic

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fatigue and widespread pain. He presented to a tertiary pain clinic at age 15 for interdiscplinary evaluation to address pain, functional decline, and low mood. Following an interdisciplinary evaluation (medicine, pain psychology, and physical therapy), Ben was referred for weekly outpatient behavioral psychology and outpatient physical therapy. Ben began outpatient behavioral psychology to address symptoms of low mood, pain management, and functional decline. At the time of treatment, Ben missed 2e3 days of school per week and was withdrawn from all social activities. Ben had variable attendance to outpatient psychology, completing 15 sessions throughout 6 months. During that time, Ben’s mood and functioning continued to decline. One month later, he initiated home and hospital services due to an inability to attend school. However, his performance and participation with his in-home academic instruction and homework through home and hospital services was minimal due to pain and fatigue, and Ben did not pass ninth grade. Ben also reported minimal success with physical therapy. Barriers to treatment engagement included pain, functional limitations, low mood and motivation, poor sleep hygiene, and lack of engagement in practicing skills outside of session. Ben’s mother also reported experiencing pain and irregular sleep, and often times, they both reported sleeping during the day and missing appointments. Due to continued decline and low treatment engagement, Ben began intensive, interdisciplinary day treatment. Typical length of stay for this specific treatment was 4e5 weeks; however, Ben participated for 3 months. During intensive day treatment, Ben made gains with sleep hygiene, engagement in school work (he completed ninth grade and began 10th grade with home and hospital services). Despite this progress, Ben still reported a significant amount of low mood, fatigue, and pain. Upon discharge, Ben reinitiated outpatient behavioral psychology services within the clinic he attended previously, but with a different provider. Ben did not need to continue physical therapy due to improved conditioning. Ben again demonstrated variable participation and attendance in therapy sessions upon reinitiating outpatient treatment. Pain psychology focused on cognitive skills training targeting restructuring negative automatic thoughts, relaxation training, and developing/following a daily activity schedule, which allowed Ben to earn reinforcement. Components of ACT were also integrated into treatment sessions and Ben connected with identifying values and structuring his day in a way that allowed him to focus on his values. For example, Ben identified that contributing to his family and home environment was an important value. By recognizing this, he was willing to work toward a consistent sleep/wake schedule so that he was able to be awake during the afternoon and engage with this family, whereas he had previously been napping most afternoons. Once Ben was able to gain momentum in treatment, he began to report improvements. Pain intensity remained

Emerging areas and conclusions

151

largely unchanged, but mood and functioning significantly improved. Ben continued to participate in home and hospital services, and although he did not return to his public school, he completely excelled academically. At the time of discharge, Ben began to apply to college. He was going to the gym several times a week and was attending band practice on campus in the afternoons twice per week.

Emerging areas and conclusions Innovations in the study of treatment engagement within pediatric chronic pain will improve our understanding of the barriers children and families face when seeking to implement treatment recommendations. Expansion of methods used to collect data on treatment engagement is warranted. Recommendations for the study of treatment engagement suggest using multiple measures, including subjective and objective report. Clinically, youth with chronic pain and their parents often have differing perspectives on engagement in treatment, and both perspectives should be captured when possible. As in other populations, objective measures of treatment engagement may include appointment attendance records, medical record review, prescription fill records, pill counts, or monitoring of pill container openings via electronic tracking devices. Additional methods of collecting behavioral data among youth with chronic pain include wearable fitness trackers and actigraphy monitors to assess sleep and wake patterns. Treatments that are delivered through use of computer applications may also be programmed to provide information on patient engagement with treatment content or activities. Self-report measures of treatment engagement may also be further optimized through use of daily diary methods that minimize self-report biases. Electronic health registries are increasingly being used in clinical settings to assess patient-reported health outcomes and may also provide a platform to collect youth and caregiver reports of treatment engagement. Beyond improving methods of assessing treatment engagement, future research in this area should assess the extent to which individual, family, community, and healthcare factors affect treatment engagement. Many individual and contextual factors that have been associated with adherence in other pediatric chronic illness populations are hypothesized to effect treatment engagement in children with chronic pain (Fig. 6.1) but have not yet been examined in within this population. Identifying which variables account for the greatest variance in treatment engagement will guide healthcare providers to target components most likely to impact engagement behavior. Research to date suggests that expectations for treatment are an

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important individual and family factor associated with treatment engagement (Long & Guite, 2008). As described previously, treatment recommendations for pediatric chronic pain involve multiple treatment components from multiple providers. Thus, developing a measure of individual and family expectations related to individual components of interdisciplinary pain management (e.g., beliefs related to effectiveness of physical therapy compared with CBT) would be helpful in investigating this line of research. A measure of readiness to adopt a self-management approach to chronic pain, the Pain Stages of Change Questionnaire, has recently been used in the pediatric pain setting (Guite et al., 2011) and demonstrates promise in guiding treatment recommendations. In examining readiness to change by administering the Pain Stages of Change Questionnaire to youth with chronic pain, it was found that adolescents who reported lower levels of pain catastrophizing were more likely to be endorsed acceptance of self-management approach to pain management (Guite et al., 2014). Furthermore, parents of adolescents with chronic pain who demonstrate higher levels of pain catastrophizing tended to fall in the precontemplation stage (i.e., consider their child’s pain condition primarily medical in nature and expect treatment to be biomedical in nature (Guite et al., 2014). These data suggest pain catastrophizing impacts readiness to engage in a self-management approach to youth chronic pain. Using the Pain Stages of Change Questionnaire to gain an awareness of child and family treatment expectations even prior to making treatment recommendations could help providers tailor the rationale and psychoeducation provided to families along with treatment recommendations. Gaining insight into the youth and caregiver readiness to engage in selfmanagement strategies may set the stage for treatment recommendations and provide an opportunity for early clinical interventions (e.g., motivational interviewing) that ultimately improves treatment engagement. Moreover, longitudinal assessments of child, parent, and family variables and application of advanced quantitative techniques (e.g., sequential analysis, structural equation modeling) will strengthen the ability to test causal hypotheses and assess the direct effects these variables may have on treatment engagement over the course of development, as well as greater examination of potential mediation and moderation effects these variable have on treatment engagement in children with chronic pain. Adherence and engagement in treatment of children and adolescents with chronic pain is likely associated with improved outcomes. However, many youth with chronic pain and their families struggle to fully engage in treatment recommendations. Continued collaboration within and between disciplines, coupled with innovative assessment and intervention techniques targeting treatment engagement (i.e., use of Pain Stages of Change

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Questionnaire to inform motivational interviewing during an initial interdisciplinary pain evaluation), might help to minimize barriers and limitations to treatment engagement within pediatric pain populations. Better assessment and understanding of the factors that adversely impact or bolster self-management behaviors will allow for targeted clinical intervention and ultimately improve treatment engagement among youth with chronic pain.

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