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The focus of this brief review is to highlight to the reader some of the ‘ripple effects’ of broader systems-level healthcare issues and the implications they may have for effective treatment of pediatric chronic pain. Many healthcare providers focus almost exclusively on the patient, but lack the knowledge of how to intervene effectively at systems levels with families, schools and healthcare institutions surrounding the pediatric patient with pain. We provide a case example and consider this issue across three systems that are particularly relevant to pediatric pain management: the outpatient pain clinic, school and inpatient settings. The information presented will improve the healthcare provider’s ability to effectively treat pediatric pain through an enhanced understanding of the multiple systems of care that surround children with pain.
The 2011 report from the Institute of Medicine, ‘Relieving Pain in America’ highlights that interdisciplinary, biopsychosocial approaches to treating persistent pain are the most promising interventions for affecting positive outcomes . However, there are significant institutional, educational, organizational and reimbursement-related barriers to providing this care for both pediatric and adult patients with chronic pain. These challenges are not unique to pain management. For example, emerging concepts within the US healthcare system include the ‘Patient-centered Healthcare Home’ , the ‘Pediatric Medical Home’ [2,3] and related ‘Health Neighborhood’ , which all emphasize a need to better connect both physical and mental healthcare.
Central to patient-centered healthcare and ‘medical home’ concepts is a team approach to managing the multiple needs of the patient and family primarily by the medical home team (who may consist of a physician, physician extenders, nurses, care managers, psychologists, rehabilitative therapists and others) working collaboratively with specialists, the patient and family [2,5]. This model works well for children and adolescents and is especially good for those with complex medical issues, such as chronic or complex pain . Moreover, the integrated system of care advocated by a healthcare home and community-based healthcare neighborhood provides an ideal framework to support the needs of pediatric chronic pain patients who consult multidisciplinary pain services.
There are barriers to the implementation of the pediatric healthcare home including: patient/family factors (stigma, parent mental health); provider factors (training, attitude toward managing and treating mental health issues); and systemic factors (administrative/financial barriers, a lack of technological interoperability and confidentiality concerns, lack of adequate training and availability of medical professionals, and a lack of evidence of large-scale feasibility and population-level improvement in health outcomes) . Each of these factors affecting implementation of a healthcare home can have a downstream effect of creating additional barriers to implementing effective pediatric pain management. More specifically, challenges in creating an effective healthcare home are highly consistent with specific challenges that keep multidisciplinary pain clinics from being more widely available, as described by Meldrum . Three core challenges are defined pertaining to tensions related to inter-disciplinary collaboration in academic medical centers and other settings; financial models of support (e.g., collaborative care models vs fee-for-service models); and treatment models (e.g., tensions between models that emphasize rehabilitation and patient behavioral change vs biomedical ‘curative’ treatment models, such as surgery, interventional anesthesiology, such as nerve blocks and/or a primary reliance on analgesic medications) . This final tension relating to treatment models may be further conceptualized as a difference between whether the main effort of treatment is to either avoid, prevent and/or block pain, or rather, to accept the presence of pain and to help patients to re-engage in living in accordance with their own goals and values.
The focus of this brief review is to highlight for the reader in the sections that follow some of the ‘ripple effects’ or the reciprocally impacting outcomes of these broader systems-level issues and the implications they may have for effective treatment of pediatric chronic pain. To this end, we will consider a few of the challenges and opportunities related to treatment of pediatric pain in three systems: the outpatient academic medical center setting, the school setting and the inpatient setting. Each setting typically includes overlapping and interconnected subsystems that require integration of inpatient, outpatient and network sites, as well as management of out-of-network local and far-reaching referrals. Moreover, each of these three settings would need to maintain a connection with the patient’s medical home to assure continuity of care. A case study is presented for reference of an adolescent with chronic pain to exemplify the multiple overlapping systems involved, including family, inpatient, outpatient and school/extracurricular activities (Box 1).
JR is a 16.5-year old girl who is currently admitted to hospital for management of a migraine headache that began 3 days ago. She complains of pounding, frontal head pain associated with nausea, photophobia and phonophobia. She is in a darkened room, surrounded by her mother and father, who are applying cool compresses to her head. She has a 3-year history of headaches that have evolved from being episodic, occurring initially about once per week, to her now having a chronic daily headache. These baseline headaches are not focal, but described as dull, aching and largely frontal. She wears sunglasses all the time, except when in bed. She does not have nausea or vomiting with these headaches. She was initially seen in an outpatient Pediatric Pain Program 6 months ago and was started on valproic acid, extended release. This therapy seemed to reduce the severity of the headaches from an average level of 8/10 to 3/10 on a numeric pain intensity rating scale. She had worked with an outpatient psychologist near home who taught her biofeedback, but stopped seeing her when her pain levels became more tolerable. This year, however, she has had multiple episodes of severe head pain resulting in many days of school absence. She is a junior in high school but has missed 65 out of 145 days of school this year and is failing all of her classes. She has dropped out of several sports teams and has gone from being an athletic adolescent to one who is inactive and severely deconditioned. During her current inpatient admission, she is receiving a trial of dihydroergotamine infusions to try to break the headaches. She was also seen by the inpatient pediatric pain psychologist, who identified depressive symptoms and anxiety co-occuring with her chronic pain.
This case captures an acute exacerbation of a chronic ‘migraine’ headache condition by an adolescent female currently admitted as an inpatient and receiving additional bedside support from her parents. The patient has recently received some helpful outpatient support through providers in a Pediatric Pain Program and an outpatient psychologist. There has been some recent success with managing biomedical factors contributing to the problem; however, the patient continues to have significant functional disability. Thus, this admission provides an opportunity to: further assess and support potential psychological, social and behavioral factors that can serve to maintain disability; and develop a helpful discharge plan that facilitates intersystem communication and integrates continued outpatient follow-up care with both new and existing resources (e.g., the Pediatric Pain Program, the outpatient psychologist, the school and so on). Additional considerations for creating an effective treatment plan for this patient are discussed in the text of each section, focusing on outpatient, school and inpatient systems.
Pediatric chronic pain is common and should be recognized as a major health concern [7–9]. This is confirmed in community samples of children and adolescents, with 83% experiencing pain within a 3 month period and 30.8% having pain present for >6 months with headache, abdominal, limb and back pain being the most prevalent . There is considerable evidence to support the important role of psychological therapies in the management of pediatric chronic pain. Readers are referred to the following excellent reviews on this topic [10–12].
While recurrent and chronic pediatric pain is very common, research suggests that the majority of youth in the community who report chronic pain symptoms do not experience significant impairment or seek treatment . We are only beginning to understand pediatric pain service utilization and this knowledge has important implications for optimizing systems of care. Toliver-Sokol and colleagues recently examined health service utilization in community and clinical pain samples of adolescents . They found that the clinical sample had greater health service utilization for all types of medical visits (general, specialty care, complementary medicine, mental health and occupational/physical therapy) and for medication use, and that higher annual income, pain frequency and levels of caregiver-reported activity limitations associated with more visits in both the clinical and community samples. Moreover, within the clinical pain sample, greater pain frequency and activity limitations predicted more specialty care visits. In addition, the research literature focusing on pediatric pain trajectories into adulthood suggests that these problems can and do persist beyond pediatric age [15–18]. Collectively, these studies underscore the importance of effectively treating chronic pediatric pain and suggest that high healthcare utilizing patients with chronic pain do require biopsychosocial treatment that considers psychological, social, behavioral and biomedical factors that relate to pain [19,20].
To this end, the pediatric multidisciplinary pain clinic plays an important role in synthesizing prior evaluations and in coordinating and implementing a biopsychosocial approach to pain management. It does this by providing education, helping to align treatment expectations (e.g., increased function to occur before decrease in pain; that it may not be a fast process), motivating treatment adherence and providing follow-up treatment. Multiple researchers have documented the need for and importance of pediatric multidisciplinary pain clinic settings [21–23]. The multidisciplinary pain clinic provides a family-centered care approach, which is essential to understanding patient, parent(s) and family factors  and the important role of interactions between the patient and parent in alleviating chronic pain . Treatment goals are primarily focused on decreasing pain-related disability, in addition to pain relief, which is frequently measured using the Functional Disability Inventory , a well-established pediatric measure of difficulty with physical functioning and activities in youth with chronic pain [26–28].
Researchers are still trying to understand which treatment-related factors relate to later functioning. Treatment adherence is emerging as an important piece of this puzzle. For example, patient JR’s case provides an example of multiple factors potentially relating to treatment adherence that could limit her successful coping with headache pain. These factors may include considering whether discontinuation of treatment with a psychologist was premature, what support parents continue to need to help develop constructive responses to their daughter’s pain that encourage functional behaviors (e.g., school attendance and participation in activities), and determining whether her medication use has been as prescribed. While adherence is becoming more widely studied in pediatric populations, few studies examine pediatric chronic pain clinic samples. This may, in part, be due to the significant challenges related to assessing complex multidisciplinary recommendations that can straddle medical, behavioral, social, cognitive and academic domains. What we do know about adherence and pediatric chronic pain is that there are high levels of nonadherence to pain clinic recommendations , better adherence is associated with better functional outcomes , and pain coping and treatment expectations were coupled with adherence . In addition, treatment satisfaction probably plays a role in adherence and outcomes. To date, there are limited data available for pediatric chronic pain treatment outside of satisfaction with initial evaluation .
Our understanding of the relationships between factors contributing to treatment adherence and positive outcomes remains superficial. Enhancing this knowledge will allow us to help overcome barriers to providing evidence-based care for pediatric chronic pain. Changes related to healthcare policy will continually challenge us to rethink traditional models of treatment delivery and ways to provide tools to support pain self-management. The reader is directed to an excellent comprehensive review by Rozensky and Janicke that specifically focuses on pediatric psychology’s role and function in healthcare reform within the US healthcare system .
As previously noted, considerable challenges currently exist to providing multidisciplinary pediatric pain management in the outpatient setting, including tensions related to inter-disciplinary collaboration, financial models of support and treatment models. Nevertheless, many opportunities exist to help meet these challenges. For example, there is potential to enhance pediatric pain treatment through augmenting the initial evaluation encounter to more deliberately jumpstart treatment. The initial evaluation encounter may be the only opportunity providers get to directly provide care (e.g., for those patients who live far from the clinic) and/or to motivate patient and parent readiness to engage in a self-management approach to coping with pain . Recent research focusing on adolescent and parent pain-related behaviors shows that that adolescent pain catastrophizing mediates the relationship between protective parenting behaviors and disability, both at the time of the initial clinic visit  and over time . The clinical implications of these research findings could suggest that efforts to develop specific strategies to effectively intervene around parenting behavior and pain catastrophizing at the time of the clinic evaluation may be an important front line target of intervention. Continued research is essential to understand key factors that play a role in the treatment process and mechanisms that facilitate improved treatment outcomes over time.
Additional opportunities exist to make treatment more accessible to patients and families. Internet or web-based treatments, such as Palermo and colleagues’ WebMAP program, hold great promise in this regard . Preliminary findings for the first 26 families enrolled in this randomized controlled trial demonstrate a 92.3% participation rate in online behavioral pain management intervention for families of adolescents with chronic pain . Notably, positive treatment effects were reported for this initial sample and findings also support that a provider/online coach role was still important in predicting positive treatment outcomes. Other strategies for enhancing accessibility that have shown beneficial treatment outcomes include the provision of psychological services through group interventions  and 1-day weekend pain treatment workshops . Yet another potential mechanism to help minimize locational barriers to treatment includes pursuing telephone or video-conferencing options to provide care. Successful treatment models have been developed to deliver multidisciplinary pediatric sleep medicine services to families in geographically isolated areas and this model can be adapted to the specific needs of pediatric pain patients . Finally, working more directly with schools to treat pediatric pain patients provides additional opportunities to enhance accessibility and effectiveness, which will be considered in more detail the next section.
School is a crucial domain of functioning for youth with chronic pain. It is the primary goal-oriented activity for children, where they acquire both academic and social skills necessary for success in later life. The effects of chronic pain on school functioning can manifest in a myriad of ways. Pain can impair school attendance, academic performance, peer relations and involvement in extracurricular activities, as well as the child’s sense of competence and self-esteem [ 39–41]. Disability in school during adolescence can set the stage for lifelong patterns of pain-related disability, high healthcare utilization and reduced productivity. Yet addressing school-based issues often represents a challenge to healthcare clinicians, given the difficulties of working effectively across multiple complex systems.
Over the last decade, studies have begun to address this important area of pain-related functioning, with the majority of research to date focused on school absence. Data have emerged to support the longstanding clinical observation that chronic pain has a significant impact on school attendance. Many children with chronic pain miss extensive amounts of school, with a significant subset of them missing half of school days or more [9,40]. For some, a vicious cycle develops wherein pain-related school absence generates anxiety about the return to school and the need to catch up, resulting in protracted school avoidance [39,42]. In such cases, pain-related school impairment often requires treatment approaches similar to those used to address school phobia, for example, cognitive behavioral techniques, such as systematic desensitization, exposure and operant conditioning combined with parent intervention and school support [43,44]. For instance, in the case of JR, a pain psychologist might intervene to set up a gradual, progressive return to full time attendance at school, combined with specific accommodations that could be implemented in school to facilitate re-engagement, such as allowing JR a few extra minutes to navigate between classes in order to manage her exposure to crowded, bright and noisy hallways. Working with JR’s parents to help them encourage JR to attend school even when a headache is present would be crucial to the success of such a plan.
In concert with improving school attendance, there are other important targets to assess and treat when addressing school functioning in youth with pain. Relatively little is known about the effects of chronic pain on academic performance. Many children with chronic pain have been historically high achievers whose academic performance may not necessarily fall below normal but may represent a failure to achieve to their own potential. Pain may affect academic performance through its negative impact on attention capacity [42,45]. Some studies have documented specific neurocognitive effects of some types of chronic pain, with the largest body of research demonstrating this effect among children with headaches [46,47]. Because school personnel may not be familiar with the effects of pain on cognitive abilities, there is an opportunity for clinicians to provide information and guidance to help schools respond to the needs of children with pain.
Pain may also impact children’s self-perceptions in the school setting, both in terms of academic  and social competence [49,50]. Children with pain may begin to perceive themselves as poor fits in their school environment, leading to a reduced sense of school belongingness [51,52]. These constructs have not yet been well explored among children with chronic pain syndromes and can often be challenging to assess. Communication between the healthcare team and school personnel is vital to understanding the multifaceted impact that pain may have on school functioning to developing and implementing feasible interventions.
Another challenge lies in identifying the causes of pain-related school impairment. From an ecological systems perspective, the factors affecting pain-related school functioning span the individual, family and larger social systems levels. At the level of the individual child, depressive symptoms have been found to associate with school impairment in the context of chronic pain . Anxiety can also impact the child’s ability to function in school with pain. For some children, school avoidance arises from a fear of encountering painful stimuli in the school setting. Parental responses to pain appear to play an important role in children’s school functioning in the face of chronic pain. Recent research shows that parental thoughts about the child’s pain (i.e., parental pain catastrophizing) and responses to the child’s pain behaviors (i.e., protective responses) influence the school functioning of children with chronic pain . Appropriate methods for assessing the role that parents play in the child’s ability to function in the school context need to be developed to assess and evaluate effective interventions in this realm. A key goal for the pain clinician is to establish parental ‘buy in’ to the importance of improving school functioning.
In order to help children with chronic pain succeed in school, we must also acknowledge and understand the role that schools themselves play in meeting the needs of this at-risk population. Little work has been done in this area, but a few studies demonstrate the important influence of the school response and highlight directions for future clinical and research efforts. A study by Logan et al. illustrated that the majority of school personnel views chronic pain as either an entirely psychological or entirely medical phenomenon, or are unable to provide any opinion of its origins . It is not surprising that school personnel have little understanding of the biopsychosocial model of pain, since this is a complex conceptualization that is not always consistently adopted, even among healthcare professionals. This study further showed that teachers who attributed the pain, at least in part, to medical causes expressed more willingness to provide accommodations for the child with pain. This finding underscores the opportunities that exist for the pediatric pain healthcare team to reach out to school professionals who work with their patients to provide information and recommendations on responding to the pain in the school setting. Fruitful collaborations may also draw upon other resources within the healthcare system, such as hospital-based educators with expertise in meeting the educational needs of children with medical issues, and occupational therapists who may offer useful adaptive strategies for navigating the school setting. In rising to the opportunity to help children with pain restore their school functioning, important goals for the healthcare provider include: fostering open communication between families, schools and the healthcare team; providing education about pediatric pain to those school personnel; and working collaboratively with schools and families to develop clear and appropriate strategies to help the individual child with pain to function adaptively in school and to meet his/her educational and functional goals.
Pain management in hospital-based care can be especially challenging when children have a chronic pain condition. Procedural pain and acute pain are more commonly treated. Barriers to providing evidence-based care for pediatric chronic pain in an acute setting are numerous [56,57]. As previously identified, interdisciplinary collaboration for optimal care is important, but can be affected by the need to coordinate multiple services involved in the care of the child, each with their own treatment plan. This ‘silo’ situation is especially problematic in academic medical centers because the goals of patient care can, at times, be disparate. For example, a child or adolescent with a chronic illness that includes a chronic pain component, such as sickle cell disease or inflammatory bowel disease, may have an admission for an acute, episodic diagnosis unrelated to their chronic disease. Coordination with the service that usually manages the adolescents’ chronic pain can be delayed and potentially affect the patient care goals for that specific admission. Systems can be put into place to maximize communication and shared clinical decision-making, but this requires regular team meetings involving the family and relevant care providers.
In addition to hospital-based care coordination, patients with chronic pain conditions need assistance with planning strategies to transition back to the school setting mindful of how disruptive chronic pain can be. In the case of JR, care coordination with the school nurse and teachers is vital to encourage attendance. Both JR and her parents can be coached through a discussion of modifications to be put into place that are mindful of successful treatment modalities JR has used in the past. For example, negotiating some schedule modification for JR with her teachers that would allow her to visit the school nurses’ office and practice biofeedback would be ideal. Identifying short- and longer-term goals for pain management that build on past treatment successes is key. Ideally, speaking with the family and with JR to strategize about her diet, exercise and medication needs to prevent severe headache pain recurrence should be part of the hospital discharge planning process. Nurse case managers who are hospital based can assist with coordination of care following discharge. With permission of the family, this care coordination could also include the school nurse and the community-based pain psychologist.
Challenges inherent in promoting effective interventions within the inpatient setting include limited time, increased patient acuity and multiple job responsibilities that nurses must juggle. Nurses are ideal professionals to facilitate these coordination efforts because of their constant presence at the bedside and ongoing interaction with other healthcare team members and the family. One successful hospital-based model is the development of a pain resource nurse (PRN) group. There is strong evidence to support the development of a pain nurse expert or PRN model as a way to effectively improve pain management for hospitalized patients [58,59]. Outcomes of the PRN effort include enhancing the knowledge and skills of healthcare providers in pediatric pain management to improve quality of care for patients and families; synthesis and utilization of existing evidence to identify and implement best practice for quality pain management; and identification and implementation of best practice in pediatric pain management to improve consistent performance throughout the hospital system . A PRN nurse model helps identify nurses with proven expertise. With institutional support, a PRN nurse can schedule time away from direct patient care to attend family meetings, provide in-depth consultation and education, and help focus the plan of care for patients like JR .
This brief review highlights some of the emerging ripple effects of broader systems-level issues as they relate to treating pediatric pain in inpatient, outpatient and school contexts. A case study was provided and discussed to demonstrate the ways in which effective care for pediatric chronic pain patients overlaps multiple systems. Communication and integration among these separate systems is necessary to affect positive outcomes. We offer a review of some current challenges and opportunities for providing effective pediatric pain management in each setting. An acknowledged limitation of the current review is that it was written primarily from the perspective of authors who work within the US healthcare system. Thus, some of the challenges and opportunities noted may not be applicable to other healthcare systems. Nevertheless, it is our hope that many of the themes discussed in this review will transcend international boundaries, and that evolving policy-level changes in healthcare may provide future opportunities to advance the type of biopsychosocially informed, integrated care that will benefit pediatric patients with pain and their families.
JW Guite’s effort was supported in part by grant number R03HD054596 from the National Institute of Child Health and Human Development and an award from the Foerderer Fund for Excellence at The Children’s Hospital of Philadelphia. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NICHD or NIH or The Children’s Hospital of Philadelphia.
Financial & competing interests disclosure
The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.
No writing assistance was utilized in the production of this manuscript.
This manuscript was based on collaborative activity generated through a symposium presentation that was part of the 31st Annual Scientific Meeting of the American Pain Society. Each author received a nominal honorarium to support their attendance at this conference, but not for generation of this manuscript.
Papers of special note have been highlighted as:
of considerable interest