In an effort to optimize contemporary pediatric healthcare, attention has also been focused by the AAP on the greater compositional diversity and functional dynamics of the contemporary American family (Schor 2003). The Family Stress Model (Conger et al. 2000) implicitly guided the AAP in generating its current Family Pediatrics: Report of the Task Force on the Family (Schor 2003). The Family Stress Model (Fig. 11.2) is predicated upon the intrinsic interrelationship between socioeconomic status, family processes, and human development. The model acknowledges the strong correlation between lower socioeconomic status (with its attendant economic hardships) and disparities in the cognitive, social, emotional, and physical health and well-being of children, adolescents, and young adults (Conger et al. 2000; Conger and Donnellan 2007). In addressing the resulting detrimental clinical outcomes, the Family Stress Model seeks to identify the biological, psychological, and social resources vs. vulnerabilities that may reduce or intensify the economic stress process (Conger et al. 2000).

The Family Stress Model is quite germane to understanding the pediatric chronic pain experience, given that family, parental, and situational factors are widely held to play a major integrative role in the natural history of pediatric chronic illness and specifically, the development and perpetuation of chronic pain (Fig. 11.3) (Chambers 2003; Chambers et al. 2002; McGrath and Hillier 2003; Palermo and Chambers 2005). Moreover, contending with a child who is suffering from a chronic medical condition, especially one that is associated with chronic pain and disability, is also a potent parental and family stressor (Eccleston et al. 2004; Jordan 2005). A survey of 533 parents of chronically ill children revealed 45% of them to have health-related quality-of-life impairment, across the domains of sleep, social functioning, daily activities, vitality, positive emotions, and depressive emotions – supporting the need for a family-centered approach in pediatrics (Hatzmann et al. 2008). An effective biopsychosocial approach to pediatric pain is also commensurate with the family-­centered pediatric healthcare model that has also been promulgated by the AAP (2003).

Pediatric chronic pain can have a widespread impact on many aspects of daily living for patients and their families. The actual prevalence of pain and disability in the pediatric populations is not known. The majority of children who do report pain do not tend to show extensive distress and disability. Recent evidence suggests that pediatric patients of all ages, including the extremely premature neonates, are all capable of experiencing pain and subsequent disability as a result of tissue injury, medical illnesses, therapeutic and diagnostic procedures, trauma, and surgery (Davies et al. 2010; Lago et al. 2009; Roth-Isigkeit et al. 2005). Moreover, given the lack of assessment and barriers to treatment of pediatric pain, a minority of youth report pain and disability, including associated depression and maladaptive coping. These issues tend to be more pronounced in younger age groups and in groups with long term, chronic illness. Similar to other studies, sex differences in pain reporting have been observed, with girls tending to report pain in greater numbers than boys (Eccleston and Clinch 2007; see also, Keogh 2011).

A recent Delphi poll of professionals with a specific interest in chronic pain in children and adolescents was undertaken to reach a consensus as to the factors associated with pediatric chronic pain and disability (Miro et al. 2007). Factors deemed most important by these stakeholders in the development of chronic pain included: (1) child’s psychological characteristics: the child’s tendency to somaticize, depressed personality, and anxious personality; (2) parent’s psychological characteristics: parental emotional instability; (3) characteristics of the pain experience: suffering from constant pain, and a family history of chronic pain; (4) characteristics of pain management: an excessive use of healthcare services for the child pain complaints, an inappropriate consumption of medicines to relieve the pain, doctor searching for the pain problem without finding anything wrong, and a low compliance with the healthcare professionals’ recommendations; (5) psychological factors related to the child’s pain experience: catastrophic thinking of the child and parents about the child’s pain, child’s negative expectations about the course of her or his pain problems, and the presence of positive reinforcements in response to the child’s pain behaviors; and (6) a stressful environment (e.g., due to family difficulties, problems at school) (Miro et al. 2007). By the same token, the consensus factors considered by these stakeholders to be most important in the development of a disability include: (1) child’s psychological characteristics: the tendency to somaticize, and a depressed personality; (2) parents’ psychological characteristics: high anxiety; (3) psychological factors related to the child’s pain experience: pain-related fear avoidance (child’s and parents’ catastrophic thinking about the child’s pain, and child’s avoidance behaviors due to the fear of experiencing more pain), child’s beliefs about her or his being disabled by the pain, and pain modeling factors (parents’ avoidance behaviors due to the fear of experiencing more pain, parents’ belief that pain incapacitates, and parents’ own disability because of pain); and (4) parents’ ability to deal with her or his child’s pain (Miro et al. 2007).

Pediatric chronic pain is a complex and individual and social experience (Graumlich et al. 2001; Malaty et al. 2005; Schechter et al. 2003). It is often difficult for patients and their parents to fully describe the impact of the experience and meaning of chronic pain using only self-reported or observational unidimensional pain intensity scales (Gaffney et al. 2003; Stevens 1994). As noted above, chronic pain has a substantial adverse impact on children and adolescents, resulting in significantly worse physical functioning, psychological functioning, social functioning, in addition to lower satisfaction with life and poorer self-perceived health status (Merlijn et al. 2006; Palermo 2000).

In contrast to more conventional physiologic, laboratory, and radiological assessments of disease, the measurement of health-related quality of life (HRQoL) can provide equally important insight into these adverse effects of pediatric chronic disease, especially those associated with pain and disability (Eiser and Morse 2001b, c; Guyatt et al. 1993; Vetter 2007). Sequentially assessing HRQoL can also provide clinicians, their patients, and their parents with additional information about the longitudinal effectiveness of a chronic pain treatment regimen and assist in point-of-service clinical decision-making (Drotar 2004a; Varni et al. 2005; Vetter 2007).

Health-related quality of life has become a central issue in the effective assessment, treatment, and management of pediatric chronic diseases, and it has been posited that the measurement of HRQoL should be routine in pediatric outcomes research and clinical practice (Eiser 2004; Palermo et al. 2008; Parsons and Mayer 2004). The Pediatric Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (PedIMMPACT) has recently recommended that investigators conducting pediatric clinical trials in chronic and recurrent pain should consider assessing outcomes in pain intensity; physical functioning; emotional functioning; role functioning; symptoms and adverse events; global judgment of satisfaction with treatment; sleep; and economic factors (McGrath et al. 2008).

Nevertheless, the measurement of HRQoL in pediatric research and clinical practice has remained limited as compared to its measurement in the adult population (Clarke and Eiser 2004; Varni et al. 2005). Conceptual and methodological issues have hindered the routine assessment of HRQoL in chronically ill children and adolescents, including those suffering from chronic pain (De Civita et al. 2005; Drotar 2004a; Matza et al. 2004). One fundamental issue is the central yet complex role of child development and the associated dynamic social and psychological contexts in which a child or adolescent perceives health vs. disease (Forrest et al. 2003). Specifically, parents, siblings, and peers, as well as the classroom setting and the community, can all play an important role in the self-perceived HRQoL of a child or adolescent (Matza et al. 2004; Palermo 2000).

These methodological challenges can be overcome, however, if sufficient consideration is given to the choice of an age-appropriate pediatric HRQoL instrument (Drotar 2004b; Eiser and Morse 2001b; Landgraf and Abetz 1996; Vetter 2007). The use of an adult generic HRQoL measure (e.g., 36-Item Short-Form Health Survey, SF-36) should be avoided in chronic diseases of childhood due to its likely failure to tap important pediatric health domains and its response burden (Eiser and Morse 2001c). A parental proxy assessment of a younger child’s HRQoL is a viable alternative. However, children 8–11 years of age appear to report significantly lower HRQoL than their parents (Theunissen et al. 1998). Therefore, whenever possible, in addition to those of a parental proxy, the pediatric patient’s own health perceptions should also be elicited (Eiser and Morse 2001a). If the health survey instrument is appropriately structured, a child as young as 4 years of age can provide meaningful, even if only concrete insight into their self-perceived health status, including their experience of pain. More subjective or abstract health domains can be self-reported by individuals 8 years of age and older (Eiser et al. 2000; Matza et al. 2004; Vetter 2007).

Previous pediatric studies have also observed an imperfect concordance or cross-informant variance in patient self-reported health-related quality vs. parent proxy-reported health-related quality (Knight et al. 2003). This discordance has been observed not only in healthy subjects (Cremeens et al. 2006), and in a community adolescent sample (Waters et al. 2003), but also in patients specifically with functional abdominal pain (Youssef et al. 2006), cancer (Varni et al. 2002; see also Ransom et al. 2011), and sickle cell pain (Panepinto et al. 2005). Nevertheless, despite the attendant methodological challenges, the assessment of HRQoL represents a vital element of pediatric outcomes research (Palermo et al. 2008).

A consistent clinical profile has been observed over the last decade among patients referred to four tertiary-care multidisciplinary, pediatric pain medicine clinics (Eccleston et al. 2004; Kashikar-Zuck et al. 2001; Logan et al. 2009; Vetter 2008). All four cohorts were likely fraught with selection bias due to referral patterns, and cancer-related pain was conspicuously absent in these published study samples. Nevertheless, collectively, they still offer important insight into the biopsychosocial characteristics of pediatric chronic pain.

In a group of 73 patients presenting to a pediatric pain medicine clinic, most were adolescents, Caucasian (90%), female (78%), and 45% had pain of greater than 24 months duration. While many reported more than one pain location, back pain (18%), abdominal pain (16%), limb pain (15%), and myofascial pain (15%) were the most common primary types of pain. Most patients reported at least mild to moderate levels of depression, and approximately 15% of the patients reported severe levels of depressive symptoms. Based upon the Functional Disability Inventory (FDI), approximately 75% of study subjects self-reported moderate to high levels of functional disability (FDI score  >  10), including disruption in psychosocial functioning (Kashikar-Zuck et al. 2001).

In a second group of 80 pediatric patients with chronic pain who were referred for assessment at a specialized tertiary care chronic pain management service, the majority (71%) were girls, with a mean age of 14.5 years, whose pain had persisted for an average of 3.9 years. Using a chronic pain syndrome diagnostic system (rather than more conventional ICD-9 coding) (Malleson and Clinch 2003), four conditions were most common: complex regional pain syndrome (CRPS) type 1 (26%), juvenile widespread idiopathic musculoskeletal pain (24%), recurrent abdominal pain (12%), and low back pain (12%). Based upon their responses on a battery of previously validated questionnaires, these adolescents frequently reported clinically significant levels of disability (85%), depression (31%), and anxiety (50%), and their parents reported similarly frequent high levels of depression (40%), anxiety (60%), and parenting stress (66%). Multiple regression analyses revealed that the strongest predictors of this adolescent emotional distress were the extent to which the adolescents catastrophize and seek social support to cope with the pain (Eccleston et al. 2004).

A third such cohort of 100 pediatric pain patients were predominantly adolescent (median age of 14 years) females (68%), whose median duration of chronic pain was 16 months. Low back pain (14%), myofascial pain or fibromyalgia (14%), abdominal pain (12%), and headache (8%) were most predominant. A substantial proportion of these patients exhibited evidence on psychological testing of clinically significant anxiety (63%) and/or depression (84%) at the time of their initial evaluation. The mean initial patient self-reported and parent proxy-reported health-related quality of life scores (PedsQL Total Score) were also significantly lower than the PedsQL Total Score values previously observed in pediatric rheumatology, pediatric migraine, and pediatric cancer patients being treated in single subspecialty clinics (Vetter 2008). This is not surprising given that such anesthesiology-based, multidisciplinary pediatric chronic pain medicine programs appear to often function as “the court of last resort” for particularly clinically enigmatic and challenging patients and families. This phenomenon was reflected in the rather low self-reported parent healthcare satisfaction with previous, ostensibly inadequately effective chronic pain-related treatment (Vetter 2008). Such intense chronic pain-related symptoms and disability mandate a robust multidisciplinary care team approach, which focuses on both the biological, psychological, and social pathology and needs of the pediatric patient and the family.

A fourth published sample of 217 patients, who presented for initial evaluation of chronic or recurrent functional (i.e., nonmalignant) pain symptoms at a similar tertiary pediatric chronic pain outpatient clinic within a large urban children’s hospital, were primarily female (80%) and Caucasian (93%), with a 22-month mean duration of pain. Based upon responses on the Child Depression Inventory (CDI), only moderate levels of depressive symptoms were observed overall, with just 20% of the sample falling in the at-risk or clinically significant range of depressive symptoms. Nevertheless depressive symptoms strongly correlated with a variety of school functioning indicators, supporting the study hypothesis that depressive symptoms play a key role in influencing the degree of school impairment in adolescents with chronic pain (Logan et al. 2009).

It bears worth noting that data indicate that such adolescents presenting for evaluation and treatment of chronic pain may minimize self-reported psychological distress due to a social desirability response bias (Logan et al. 2008a). Furthermore, it has been previously observed that adolescent pain patients may infrequently exhibit diagnosable levels of depression, but that depressive symptoms, even at sub-clinical levels, may be clinically significant because they indicate poorer emotional coping resources (Eccleston et al. 2004). Given the findings in this and previous studies that show depressive symptoms are associated with functional disabilities in the presence of chronic pain, even sub-clinical levels of depressive symptoms deserve greater attention and represent a potentially important targets for treatments aimed at functional restoration and rehabilitation rather than simply a reduction in pain intensity (Logan et al. 2009). Thus, formal psychological assessment for depression, as well as anxiety, using a conventional scoring tool and/or a patient interview (Holmbeck et al. 2008; Kazdin 2005; Rudolph and Lambet 2007; Southam-Gerow and Chorpita 2007), should be part and parcel of the initial and the ongoing evaluation of the pediatric chronic pain patient.

Race is a social category based on similar ancestry and physical characteristics, while ethnicity is based also on shared behavior and culture (Edwards et al. 2001). It is widely accepted that racial and ethnic disparities in pediatric health and healthcare are extensive, pervasive, and persistent (Flores 2010; see also Green 2011). Although racial and ethnic healthcare disparities existing among adults with chronic pain are well documented (Anderson et al. 2009), published epidemiological data on pediatric chronic pain have been drawn almost exclusively from nonminority, middle-class populations outside the United States (Vetter 2011). Furthermore, little attention has been focused on race, ethnicity, socioeconomics, and the social environment as likely causal factors in the onset, persistence, and impact of pediatric chronic pain (Fortier et al. 2009; Schwartz et al. 2007).

Because of the innately subjective and hence qualitative nature of pediatric chronic pain, research attention has also recently focused on collecting complementary data from semi-structured, qualitative patient interviews and patients’ personal narratives to gain a better understanding of the impact of pain-associated functioning limitations on children’s lives and the strategies they develop to try to continue functioning.

A mixed-methods approach was applied in a group of 45 children (71% female, 64% Caucasian, mean age of 14.7 years), who presented a tertiary university-based pediatric pain clinic suffering predominantly from headache, myofascial pain, and/or functional neurovisceral pain disorder (Meldrum et al. 2008). Analysis of the data derived from standardized questionnaires and semi-structured interviews identified three distinct functioning distinct patterns or groups of functional limitation and coping strategies, which were designated as Adaptive (29%), Passive (29%), and Stressed (58%). These three groups did not differ significantly in demographics or clinical pain characteristics. Distinct differences emerged. Adaptive children continued to participate in many activities, often because of more effective use of distraction and of other independently developed strategies to continue functioning. The adaptive children were also more likely to realize that focusing on pain would heighten their perception of pain. Passive children had already given up most activities, tended to use passive distraction when in pain, and were more likely to feel isolated and different from peers. Stressed children described themselves as continuing to function, but were highly focused on their pain and the difficulties of daily living with it. Parent ratings of their child’s global health on the Child Health Questionnaire (CHQ PF50) also differed significantly across the groups; with the Adaptive group exhibiting higher CHQ PF50 scores and thus better perceived global health than the Passive group. Child self-report total scores Social Anxiety Scale for Children (SASC) also differed significantly across the groups, with the Stressed group reporting higher SASC scores and higher overall social anxiety than the Passive group (Meldrum et al. 2008).

While likely not practical in routine clinical practice, the use of patient narrative in clinical therapy and research (i.e., “narrative medicine”) can provide valuable insight into the human pain experience (Carr et al. 2005; see also Morris 2011). Such a narrative method has recently been used to better understand the impact of chronic or recurrent pain on children within the context of their own lives and experiences, specifically, in 53 children (68% female; 68% Caucasian, mean age 14.2 years), who presented a tertiary university-based pediatric pain clinic suffering predominantly from headaches, functional neurovisceral pain disorder, and/or myofascial pain (Meldrum et al. 2009). Based upon a 30–90 min, semi-structured life history interview at home prior to their first pain clinic visit and a follow-up interview at 6–12 months post-intake, five common themes of the children’s chronic pain experience emerged (Table 11.1).

Using narrative methodology similar to the seminal adult work on narrative by Frank (1995), six major, richly detailed descriptive pediatric chronic pain narratives, with unique characters and plotlines were in turn identified (Table 11.2). These narratives are consonant with previously published studies (Aasland et al. 1997; Hunfeld et al. 2002a; Mulvaney et al. 2006). These findings validate the conventional clinical belief that patient isolation, changed self-perception, activity limitations, concerns about barriers to future goals, and lack of medical validation are vital to children’s perception of the biopsychosocial impact of chronic pain on their lives (Meldrum et al. 2009).

The more pragmatic goal of pediatric chronic pain management is the timely return of a patient to as normal and functional a life as possible – with an associated improvement in health-related quality of life – while at the same time reducing the attendant stress on the parents and other family members (Bennett et al. 2000; Hunfeld et al. 2001, 2002b; Palermo 2000; Varni et al. 1996a). Indeed, at the time of their initial evaluation, patients and their parents naturally seek the complete elimination of the child or adolescent’s presenting pain. Yet, this clinical outcome is unfortunately often unobtainable, with upwards of 48 and 30% of pediatric patients reporting persistent pain at 1- and 2-year follow-up, respectively (Perquin et al. 2003). Moreover, youngsters with chronic pain often go on to experience chronic pain as young adults. In a longitudinal study of a cohort of children 8, 11, and 14 years of age, suffering from chronic headache or chronic back pain, 59% of the females and 39% of the males reported similar pain at 21, 24, and 27 years of age (Brattberg 2004).

The effective assessment, treatment, and management of the myriad of chronic pain conditions that afflict children and adolescents are a very complex clinical endeavor (Zeltzer et al. 1997b, c). The management of pediatric chronic pain and its attendant patient disability and family dysfunction optimally follows a multidimensional and multidisciplinary approach (Schechter et al. 2003), which is specifically tailored to the identified medical, psychological, and social needs of each patient and family (Bennett et al. 2000; Bursch et al. 1998). Any such comprehensive pediatric pain management algorithm calls for an interdisciplinary approach that includes rehabilitation, as well as psychosocial therapies, and when indicated, analgesic and adjuvant medications, an increasing use of complementary and alternative methods, and interventional techniques (Knotkova and Pappagallo 2007).

While an extensive review of available modalities is beyond the scope of this chapter, a brief integrative synopsis is provided. For more in-depth coverage, the reader is referred to available general therapeutic reviews (Chambliss et al. 2002) and comprehensive textbooks (Finley 2006; McClain and Suresh 2010; Walco and Goldschneider 2008), as well as focused reviews on pediatric chronic headache (Hershey et al. 2006, 2007; Lewis 2009; Winner 2008), musculoskeletal pain (Clinch and Eccleston 2009; Connelly and Schanberg 2006; Malleson and Clinch 2003), fibromyalgia (Buskila 2009), neuropathic pain (Walco et al. 2010), and abdominal pain (American Academy of Pediatrics 2005; Berger et al. 2007).