SCHOOL FUNCTIONING

In industrialized cultures, a child’s sole responsibility is to attend school. Children with pain conditions often have difficulties accomplishing this important task. For example, children experiencing pain related to sickle cell disease,^16,36 widespread musculoskeletal pain,³⁷ and recurrent abdominal pain³⁸ have been found to have higher rates of school absenteeism than do controls. The number of missed school days is quite substantial. In one study, patients with sickle cell disease were absent from school on 21% of school days, or about 6 weeks.¹⁶ Similarly, in a study of children with CRPS, affected children on average missed 40 school days.³⁹ Migraine headaches, which affect approximately 1 million children and adolescents, have been reported to lead to school absence rates of several hundred thousand missed days per month.⁴⁰ A high rate of absenteeism can have direct effects on academic performance and school success, as well as important effects on socialization and maintenance of peer relationships. Many children and adolescents with chronic pain experience extreme stress because of missing school and the subsequent difficulty in making up and keeping up with classwork. This can lead to a vicious cycle of missed school and increased stress that further compromises their ability to cope with the pain problem.

PHYSICAL AND SOCIAL ACTIVITIES

As with the effect on school attendance, recurrent and chronic pain affects children’s participation in developmentally appropriate physical and social activities. Adolescents with headaches⁴¹ and children with sickle cell disease³⁶ have reported a significant effect of pain on the amount of leisure time with peers in comparison with healthy controls. The majority of children with unexplained chronic pain suffer impairment in sports activities and social functioning.⁴² Specific activities that are most often reported by children themselves as difficult to perform because of chronic pain are sports, running, gym class, schoolwork, going to school, and playing with friends.⁴³ In particular, when pediatric patients become severely disabled by chronic pain, their lives may become very isolated and restricted with few opportunities for enjoyment of friends and normative activities.

EMOTIONAL FUNCTIONING

Persistent pain can also have a substantial effect on the emotional status of children and adolescents. In general, children with recurrent pain experience more stress, feel less cheerful, and feel more depressed than do children without pain.⁴⁴ Higher levels of depressive symptoms are associated with higher levels of pain both in children with a chronic disease⁴⁵ and in children with chronic nonmalignant pain.⁴⁶ Moreover, increased depressive symptoms are associated with increased functional disability that children experience in relation to chronic pain.⁴⁶

There have been only a few investigations to specifically report on the prevalence of psychiatric disorders in children and adolescents with chronic pain. Chronic pain does appear to be associated with psychiatric comorbidity, particularly anxiety and mood disorders. For example, in a sample of children seen in a primary care setting for recurrent abdominal pain, 79% of children met criteria for an anxiety disorder and 43% for a depressive disorder.⁴⁷ Further studies are needed to disentangle the temporal sequence of chronic pain and psychiatric disturbance. It is currently not clear whether psychiatric disturbance typically predates the pain problem or whether the psychiatric disturbance develops in reaction to living with unremitting or disabling pain.

SLEEP DISTURBANCE

Pain can also interfere with the quality and quantity of children’s sleep, and sleep deprivation, in turn, can reduce children’s ability to cope with pain and enhance pain sensitivity. More than half of children and adolescents with chronic pain report sleep difficulties.⁷ Disturbed sleep has been identified in a number of specific chronic pain syndromes in children and adolescents, including juvenile rheumatoid arthritis, headache, CRPS, sickle cell disease, fibromyalgia, and recurrent abdominal pain. Researchers have begun to describe these sleep disturbances, finding that these children and adolescents experience difficulty falling asleep, frequent night and early morning awakening, and excessive daytime sleepiness. Inadequate sleep quantity and quality are linked to significant problems in several aspects of daily life for children and adolescents.⁴⁸ Daytime sleepiness resulting from both suboptimal sleep duration and sleep disturbance is associated with reduced academic performance, attentional difficulties, mood disturbance, and increased school absences.^48,49 For children and adolescents with chronic pain who may already be experiencing functional limitations in their daily lives, good quality sleep may be even more crucial than for their pain-free peers. The disruption in sleep in some children and adolescents may be a marker for problems with functional disability or may signal the progression into chronic pain syndromes. (Lewin and Dahl⁵⁰ reviewed the importance of sleep in the management of pediatric pain, highlighting the bidirectional effects between sleep and pain.) In adolescents with chronic pain, impaired sleep has been shown to reduce functioning in a broad range of physical and social activities and health-related quality of life.⁵¹

FAMILY AND SOCIETAL CONSEQUENCES

Childhood chronic pain is known to have negative effects on family life, including increased restrictions on parental social life and higher parental stress levels, in comparison with families whose children do not have chronic pain.^30,52 Parents are most often responsible for initiating a child’s contact into the health care system and ultimately carry the burden of daily care for these children. In one study, parents’ perception of more illness-related stress was the strongest predictor of health care use in children with sickle cell disease.⁵³

Apart from the individual and family effects of chronic pain, there is also a potential societal effect of chronic pain that can be demonstrated in increased health care utilization and possible subsequent economic costs, whereby pain-related functional impairment prevents work.³⁴ The economic costs of adult chronic pain are well documented in terms of lost work productivity and costs of prescription pain medications.⁵⁴ The economic costs of childhood chronic pain have not yet been fully described. However, direct costs of pain treatment include medical costs such as hospitalization, doctor’s visits, and medications. Indirect costs include parental time off work, transportation costs, child care, and incidental expenses. Children and adolescents with chronic pain may account for a disproportionate number of contacts with the health care system, contributing to millions of dollars spent annually on health care costs for chronic pain.⁵⁵ Prior studies have demonstrated that individuals living with chronic pain have increased usage of the health care system for routine medical visits, hospital overnight stays, and emergency room visits.^56,57 For example, in a population-based sample of 5424 children and adolescents, 25% reported chronic pain, and of these, 57% had consulted a physician for pain. In a similar epidemiological study, 53% of children and adolescents had used medication for pain, and 31% had consulted a general practitioner.⁵⁸

RESEARCH ISSUES AND CONTROVERSIES

Pain and somatoform disorders can have a broad effect on children’s daily functioning and well-being. As such, studies of children with pain conditions should include relevant outcome variables, including measures of pain and distress, function, quality of life, health care utilization, and economic factors. Although some progress has been made in describing specific areas of functioning that are affected by pain, very little is known about the effect of pain in other areas. For example, although adult chronic pain has been identified as among the most costly medical conditions in industrialized societies,⁵⁹ economic outcomes are only beginning to be measured in the pediatric population. In one study conducted in the United Kingdom,⁶⁰ a cost-of-illness analysis was completed with adolescents who received treatment for chronic pain; the mean cost was found to be £8027 per child per year, which is equivalent to approximately $14,000 in the United States, including direct service use costs, out-of-pocket expenses, and indirect costs (e.g., lost employment). The longer term costs of pediatric chronic pain are unknown because there are currently no data to indicate whether effective treatment results in reduced costs related to pain in adulthood. More longitudinal data on the outcome of adolescents with chronic pain are needed in order to estimate the true lifetime costs of pain.

RESEARCH ISSUES AND CONTROVERSIES

Potential areas of research focus within the causes and natural history of childhood pain may involve sociocultural studies, the developmental psychology of pediatric pain, and the relationship between pediatric and adult chronic pain. The available data on the etiology and natural history of childhood pain and somatoform disorders are insufficient to lead to effective prevention efforts. Longitudinal studies are needed to identify the course of pain and pain-related disability in different populations of children. Furthermore, longitudinal studies are needed to document the development of pain and somatoform disorders in at-risk groups. For example, retrospective studies have revealed an increased incidence of pain and physical comorbidity in girls with posttraumatic stress disorder,⁸⁸ but there have been no investigations to monitor children with this disorder over time to identify factors predictive of the development of pain conditions.

SICKLE CELL DISEASE

Sickle cell disease is a genetic hematological disorder that affects the hemoglobin in red blood cells, causing the hemoglobin to form crystalloids that become less elastic than normal hemoglobin, resulting in long, misshapen red blood cells that have a “sickled” appearance. These abnormally shaped cells tend to aggregate rather than flow through blood vessels singly. This aggregation of red blood cells causes blockage in arteries, resulting in vaso-occlusive pain crises. Children with sickle cell disease are also vulnerable to infections (especially those caused by Pneumococcus organisms), organ damage related to episodes of ischemia, and, in some cases, early death.⁹⁵ Sickle cell disease is most prevalent among African-Americans and Hispanic-Americans; approximately 1 of every 500 African-American children and 1 of every 1400 Hispanic-American children are born with sickle cell disease.⁹⁶

Ischemia causes pain through a buildup of certain nociceptive neurotransmitters, such as substance P and prostanoids, at afferent neural endings, and the ascending pain signal system is thus activated. Ischemic pain has been described by one of our clinic patients as “feeling like your arm is being squeezed by a blood pressure cuff that keeps getting tighter and tighter until your arm begins to ache and the pain may become unbearable.” Pain may originate from many sources (e.g., musculoskeletal, visceral), and affected children may experience both acute and chronic pain (e.g., aseptic necrosis, bony infarction). For example, in children and adolescents with sickle cell disease, headaches⁹⁷ and low back pain can result from chronic muscle spasm and lack of oxygen in the spine; joint pain, especially in the hip, can result from aseptic necrosis of the femoral head; hip arthritis often causes a deep, aching “referred” pain in the lower thigh above the knee; and acute chest syndrome, with accompanying severe chest pain and shortness of breath, can develop, as can ischemia, which can affect almost any organ, causing visceral pain.

Children with sickle cell disease are also at risk for neurological sequelae and neuropsychological impairment.⁹⁸ It is estimated that 7% to 17% of children with sickle cell disease experience a clinical stroke before age 20,⁹⁹ and 10% to 20% of children may exhibit evidence of silent strokes, with associated cognitive deficits.¹⁰⁰ Learning impairment can increase school-related stress. Children with sickle cell disease often have short stature related to spinal infarcts and collapsed or narrowed vertebrae or renal disease; the short stature may add to social stress. In turn, stress can further exacerbate any pain.

Some children with sickle cell disease have frequent, repetitive bouts of pain, whereas others have a milder, intermittent form. The contributors to this variance may be related to aspects of the disease or to characteristics of the child and his or her environment.

INFLAMMATORY BOWEL DISEASE

IBD is a condition of ongoing or recurrent inflammation in the intestinal tract.¹⁰¹ IBD is not to be confused with irritable bowel syndrome, which is a functional gastrointestinal disorder characterized by abdominal pain and altered bowel habits in the absence of specific and unique organic disease. There are several forms of IBD. The two most common are Crohn’s disease and ulcerative colitis.¹⁰² Crohn’s disease is a condition that can affect the entire intestinal tract with patchy inflammation that can involve all the layers of the wall of the intestine. The early signs of Crohn’s disease in children are often vague, making diagnosis difficult. Periumbilical pain or right-sided abdominal pain are the most common sites of pain and may appear long before significant diarrhea. Children with Crohn’s disease may also have joint pain and fever before there are any changes in bowel patterns. Decreased appetite and weight loss are often symptoms misdiagnosed as anorexia nervosa, school anxiety, or other psychological problems.

Ulcerative colitis is an IBD that is limited to the large intestine. Early signs include left-sided abdominal pain that improves after bowel movements, joint pain, and progressive loosening of the stools, which are often bloody. Severe abdominal pain and bloody stools can create disabling symptoms for children when the disease is first diagnosed or during times of increased inflammation.

It is interesting that not all children with IBD have abdominal pain, even though there may be small areas of intestinal inflammation. Also, some children with IBD can also have irritable bowel syndrome, with far greater pain and other symptoms than the levels of inflammation would suggest. In addition, for some children who might be at risk for the development of chronic pain, such as those with an anxiety disorder, posttraumatic stress disorder, or other conditions associated with a hypersensitive neural system, severe bouts of inflammation-related abdominal pain or surgery can set off visceral hyperalgesia, or “phantom” intestinal pain. In this case, the brain-gut sensory system becomes dysregulated, and the intestinal tract becomes hypersensitive, with increased metabolic activity in pain perception areas of the brain. These central neuromodules create the same experience of pain as if there were active inflammation, even though the intestines may be normal after anti-inflammatory treatment. The sensation is called “phantom pain” because it can occur even if the colon has been removed. Extraintestinal symptoms, such as arthritis or arthralgias and skin rashes, may also occur in IBD. However, the hallmark of IBD is inflammation of the intestine and, typically, abdominal pain.

JUVENILE ARTHRITIS

Arthritis is an autoimmune disease, and juvenile arthritis is medically different from the adult form of rheumatoid arthritis or osteoarthritis. Juvenile arthritis can cause joint deformities and affect a child’s skin, eyes, and visceral organs. More than 250,000 children in the United States have some form of arthritis.¹⁰³ It can start as early as infancy and lasts a lifetime. Arthritis is an inflammation in the joints that causes afferent neurons to transmit nociception to the spinal cord and to pain perception areas in the brain, resulting in joint pain. Juvenile rheumatoid arthritis is an autoimmune condition involving primarily pain and inflammation in the joints.¹⁰³ Sometimes involvement extends to only a single joint (monoarticular arthritis), sometimes to a few joints (pauciarticular arthritis), and sometimes to many joints (polyarticular arthritis). In some cases, other parts of the body are involved, such as the eyes, in which there may be inflammation of the uvea. There are other, less common causes of arthritis, besides juvenile rheumatoid arthritis, such as arthritis associated with IBD, infections of the joints, and other autoimmune diseases such as systemic lupus erythematosus. In contrast to affected adults, 30% to 50% of affected children go into remission after several years, depending on the arthritis subtype.¹⁰³

CANCER

Medical-procedure pain is the most common acute pain associated with childhood cancer.²⁰ Common procedures include bone marrow aspiration and biopsy, lumbar puncture with or without the administration of intrathecal medication, intravenous insertion for chemotherapy administration (although most chemotherapy is now given through a central access catheter), and phlebotomy. Children who have vincristine chemotherapy may develop neuropathic pain associated with a peripheral neuropathy. Bone marrow transplantation is typically associated with a 7- to 10-day period of mucositis, with painful mouth, swallowing, urination, and defecation and pain in any areas involving mucosal surfaces (e.g., diarrhea associated with mucosal sloughing). Graft-versus-host disease may occur in some children after transplantation and can affect any organ, including skin. When solid tumors are increasing in size or if there is an acute hemorrhage within a tumor, the tumor can compress nearby or surrounding tissue, causing compression pain, capsular stretching pain, or hollow organ obstruction. Survivors of certain types of malignancies, such as bone tumors, other sarcomas, and Hodgkin disease, may continue to have pain long after treatment termination.

SOMATIZATION DISORDER

Somatization disorder is a chronic condition consisting of multiple medically unexplained bodily complaints for which treatment has been sought over a prolonged period of time. The symptoms begin before 30 years of age, cause significant impairment in the patient’s overall level of functioning, and are not feigned or intentionally produced. The patient presents with a specific constellation of symptoms, including four pain symptoms, two gastrointestinal symptoms, one sexual symptom, and one pseudoneurological symptom. The most common symptoms are pain in various parts of the body, dysphagia, nausea, bloating, constipation, palpitations, dizziness, and shortness of breath.¹¹³ In pediatric populations, the full diagnostic criteria for somatization disorder are rarely met; however, many children do experience multiple medically unexplained symptoms.

CONVERSION DISORDER

Conversion disorder is characterized by medically unexplained deficits or alterations of voluntary motor or sensory function that is suggestive of a neurological or medical illness. These symptoms are judged to have either been initiated or perpetuated by psychological factors and are preceded by conflicts or other stressors. The symptom or deficit may not include pain, may be under voluntary control, may be intentionally produced or feigned, or may be a culturally sanctioned experience. The symptom or deficit cannot, after appropriate medical investigation, be entirely explained by a neurological or general medical condition or be substance induced. Documented conversion disorder is rare and is reported in fewer than 1% of individuals in community settings. Conversion disorder has been described in children and adolescents as involving a variety of motor and sensory symptoms.^114–116

HYPOCHONDRIASIS

The term hypochondriac is commonly used colloquially; however, in order to fulfill the diagnosis of hypochondriasis, an individual must have a persistent preoccupation with fears of having a serious disease that is based on misinterpretation of bodily symptoms in spite of appropriate medical evaluation and reassurance.¹¹⁷ This preoccupation must also cause significant distress or impairment in social, occupational, or other areas of functioning and must last at least 6 months. The condition cannot be better explained by an alternative psychiatric diagnosis, and may not be to the extent of a delusion. The prevalence is low in the adult population; fewer than 1% of community populations meet full diagnostic criteria.¹¹⁸ There are no published descriptions of hypochondriasis in pediatric patients. The diagnosis would be complicated by the fact that parents are intricately involved in the seeking of health care for their children, as well as by the interpretation of children’s medical symptoms.

PAIN DISORDER

The diagnosis of pain disorder is a relatively new classification, appearing first in the 4th edition of the DSM (DSM-IV). Characteristics essential to the diagnosis include the patient’s experience of pain with psychological factors judged to be a major factor in the pain’s onset, severity, or duration. The pain must cause significant distress and/or functional impairment and cannot be feigned or accounted for by an alternative DSM-IV-TR diagnosis. This diagnosis can be difficult to make in the pediatric population because of the limited use of descriptive language and the effects of developmental stages on the ability to separate the psychological feelings associated with the pain from the pain sensation itself. To further complicate matters, it is essential to consider the effect that cultural issues often create differences in pain expression and behavior.

UNDIFFERENTIATED SOMATOFORM DISORDER

Undifferentiated somatoform disorder also first appeared in the DSM-IV. The diagnostic criteria include the experience of one or more physical complaints, and the symptoms cannot be fully explained by a general medical condition, or when a medical condition is identified, the impairment is in excess of what would be expected by history, laboratory findings, or physical examination. Furthermore, the symptoms cause clinically significant distress or impairment and have been present for at least 6 months. This category has been particularly criticized because the criteria are overly broad; therefore, many individuals who have physical symptoms with associated disability would fulfill the criteria.¹¹²

PAIN-RELATED BEHAVIORS

Observing the child’s behaviors can provide further clues about the location, extent, and severity of the pain. Clearly, behavioral manifestations of pain can be affected by many factors, including pain severity, child’s age, fear and anxiety, past pain experiences, environmental factors (e.g., parent and peer presence), feelings of control, and other factors. For example, a 12-year-old boy who is injured on the soccer field may not demonstrate pain behaviors until he gets into the family car after the game. For these reasons, interpretation of meaning is involved in using behavior to assess pain. Acute pain and anxiety may be responded to behaviorally in a similar manner; these similarities result in debates about whether behaviors related to these two experiences can actually be separately identified or should be combined as “distress” behaviors.¹¹⁹ In addition, with age, children learn how to mute some of their pain-related behaviors, as noted by LeBaron and Zeltzer.¹²⁰ Thus, for medical procedure–related pain behaviors, younger children may exhibit more crying and kicking, whereas adolescents may be more likely to clench their fists, grimace, and contract other muscles. This difference has affected the results of different behavioral scales used to assess acute pain across a wide age range of children and adolescents.

BEHAVIORAL AND PHYSIOLOGICAL SIGNS

Behavior and physiological signs are useful but can be misleading. A toddler may scream and grimace during an ear examination because of fear rather than from pain. Conversely, children with inadequately relieved persistent pain from cancer, sickle cell disease, trauma, or surgery may withdraw from their surroundings and appear very quiet, leading observers to conclude falsely that they are comfortable or sedated. In these situations, increasing dosages of analgesics may make the child become more, not less, interactive and alert. Similarly, neonates and young infants may close their eyes, furrow their brows, and clench their fists in response to pain. A child who is experiencing significant chronic pain may play “normally” as a way to distract attention from pain. This coping behavior is sometimes misinterpreted as evidence of the child “faking” pain when not distracted.

Investigators have devised a range of behavioral distress scales for infants and young children, mostly emphasizing the child’s facial expressions, crying, and body movement. For example, the FLACC scale¹²¹ is a 5-item scale that a rater uses to score each of five categories—face (F), legs (L), activity (A), cry (C), and consolability (C)—along a scale from 0 to 2. Facial expression measures appear most useful and specific in neonates and young infants. Autonomic signs can indicate pain but are nonspecific and may reflect other processes, including fever, hypoxemia, and cardiac or renal dysfunction.

SELF-REPORT OF PAIN

Children aged 3 years and older become increasingly articulate in describing intensity, location, and quality of pain. Scales involving drawings, pictures of faces, or graded color intensity have been validated, especially for children aged 5 years and older. For example, excellent psychometric properties have been reported with the Faces Pain Scale–Revised,¹²² a revised version of a scale originally developed by Bieri and associates.¹²³ It consists of six gender-neutral line drawings of faces that are scored from 0 to 10.

Children’s self-reports of pain can be obtained in the moment by asking about how much pain is currently present; in the past by using retrospective interview methods in which children or parents are asked to recall the frequency, intensity, and duration of pain over an identified time period such as 1 month; or in the future by using prospective monitoring of pain in daily diaries or logs. Because of the potential for children to have recall bias, prospective recording of recurrent or chronic pain complaints is recommended.¹²⁴ Novel methods have been emerging to enhance compliance in maintaining prospective records, including the use of electronic pain diaries with children.¹²⁵

PAIN ASSESSMENT IN COGNITIVELY IMPAIRED CHILDREN

The measurement of pain in cognitively impaired children remains a challenge, and methods are being studied to determine ways of assessing pain in this population. There is increasing research on the development of pain assessment tools for understanding pain expression and experience in cognitively impaired children.^126–128 Cognitively impaired children may not have the language abilities to provide labels of quantity and quality to describe their pain. They also may not have the mathematical skills needed to rate their pain on the traditional rating scales. Their behavioral responses to pain may also lead to erroneous inferences about their pain. For example, children with Down’s syndrome may express pain less precisely and more slowly than do children in the general population. Pain in individuals with autism spectrum disorders may be difficult to assess because these children may be both hyposensitive and hypersensitive to many different types of sensory stimuli, and they may have limited communication abilities. Readers are referred to the new editions of Nelson Textbook of Pediatrics, 18th edition,¹²⁹ and Pain in Infants, Children, and Adolescents, 3rd edition,¹³⁰ for detailed summaries of the different pain assessment tools currently available.

ASSESSMENT OF FUNCTIONAL CONSEQUENCES OF PAIN

Measurements of activity interference, functional disability, and quality of life are important for understanding the specific effects of pain on children. These functional consequences are considered important primary outcomes of pain treatment.³⁴ Validated measures have been developed to capture most of these domains.

There are general measures of disability and quality of life that may be useful for documenting the effect of pain on children’s functioning and well-being. For example, the Functional Disability Inventory³⁵ and the Pediatric Quality of Life Inventory¹³¹ have been the most widely used instruments to document disability and quality of life of children with chronic pain. Several more recently developed measures also show promise, including a new measure of pain-related activity interference in school age children and adolescents, the Child Activity Limitations Interview,⁴³ and a new composite measure of chronic pain in adolescents, the Bath Adolescent Pain Questionnaire.¹³² Several measures of function and quality of life have been tailored to assess specific pain syndromes or chronic health conditions. For juvenile arthritis, for example, disease-specific measures of function and quality of life include the Childhood Health Assessment Questionnaire¹³³ and the Pediatric Quality of Life Inventory, Rheumatology Module.¹³⁴

ASSESSMENT OF FAMILY FACTORS

The family has been described as an important context for understanding, assessing, and managing pediatric chronic pain,¹³⁵ and there is a growing body of research on family and parent factors and their relationship to pain and functional consequences. An integrative model of parent and family factors in pediatric chronic pain and associated disability has been proposed.¹³⁶ This model situates individual parenting variables (e.g., parenting style, parental reinforcement) within a broader context of dyadic variables (e.g., quality of parent-child interaction) and the more global familial environment (e.g., family functioning). A variety of instruments are available for assessing family variables at each level of assessment (e.g., the Illness Behavior Encouragement Scale¹³⁷), although none have been widely used in pediatric pain research. Different family variables are important to consider, depending on developmental status of the child. For example, in adolescents with chronic pain, the level of autonomy and conflict in the parent-teenager relationship would represent developmentally relevant domains to consider in family assessment.

CLINICAL EVALUATION OF PAIN

Clinical evaluation of pain includes assessing pain and pain history, other physical symptoms, physical functioning, social functioning, academic functioning, family functioning, emotional and cognitive functioning, coping style and problem-solving capacity, perceived stressors, major life events, and pain consequences. For example, evaluating a child who presents with headaches includes assessment of all these factors and should not be aimed just at ruling out an organic pathological process.

Parents presenting with a child suffering from headaches want not only a diagnosis but also the clinician’s help in reducing the pain and suffering of their child. Narratives are powerful tools with which to learn about a child’s pain problem but also what the child and parents relate to the problem (e.g., the book by Arthur Frank, The Wounded Storyteller,^137a provides detail on the narratives of patients and the relationship that develops between patient and health care provider through narrative). The use of pain narratives has been described in children¹³⁸ as a method of enhancing engagement between patient and provider on the basis of the experience of listening to the storyteller; that is, it is helpful to learn the child and parent’s “stories” of the pain problem. After the child’s and parent’s pain narratives, further questions then can help elucidate the problem and help in planning for the treatment. For example, it would be important to learn what factors make pain worse and what helps, temporal qualities, location of the pain, and description of the pain experience. Through narratives, important differences in the perception of the nature, meaning, or consequences of pain may arise between the stories told by parents and those told by the children. Differences between parents and children in the reports of pain and pain-related disability have been found in several studies.¹³⁹ By elaborating parent and child interpretations of pain, the clinician may identify important areas for treatment, such as broader issues in parent-child communication.

It is also helpful to learn what has been tried and failed and what has helped, including medication and nonpharmacological treatment strategies. Invasive medical tests should not be the first approach unless the history and physical examination suggest an intracranial pathological process that can be visible on magnetic resonance imaging or computed tomography, such as a hemorrhage, tumor, or other lesion. For children with headaches or any type of chronic pain, it is important to assess for risk factors, such as past traumas, anxiety, learning disabilities, and other problems that affect pain.

With headaches, for example, the initial thinking by the clinician during the evaluation should be to rule out something structural in the brain (e.g., tumor, traumatic brain injury), chemical causes (e.g., monosodium glutamate reactions), or other identifiable “causes” that can be readily treated if diagnosed (e.g., sinus infection, poor vision). Clearly, observation and a history of unusual or sudden symptoms or signs—such as fever; morning vomiting; visual disturbances; seizures; paralysis; weakness; loss of sensation; shaking; or any sudden changes in alertness, speech, or thinking, especially after head trauma—would suggest the need for urgent evaluation with further diagnostic tools. However, most children presenting with chronic pain do not have easily identifiable single causes of the pain (e.g., sinus infection) and the longer pain has persisted, the more “baggage” the pain picks up along the way, such as secondary stressors of school absenteeism, muscle tension from restricting the painful body part, and pain-related anxiety. Although it is important to learn as much as possible about the pain, it is just as important to learn about pain-related functional disability; that is, inquiry can be directed to learn to what extent and in what ways the pain is interfering with the child’s daily life, including sleep, appetite, school attendance and performance, social and physical activities, and family life.

The following questions can be asked of the child and parent to learn about the nature of the pain and how it is interfering with the child’s daily life (adapted from Zeltzer and Schlank¹⁴⁰).

How long has your child (you) been bothered by the pain?

Does the pain occur at any particular time of day (e.g., when your child [you] first awakens), week (e.g., school days only), or month (with menses, for girls)?

How often do the pain episodes occur, and how long do they last?

Do they come on suddenly or gradually?

Is the pain preceded or followed by any other symptoms or unusual feelings?

Where is the pain located, and what does it feel like (e.g., pounding, stabbing)?

What makes it worse, and what helps it feel better?

Did anything new or different, such as attending a new school, precede the pain? What do you think started the pain and what keeps it going?

What medications (name, dose, how often and for how long) has your child taken for her pain and what is she still taking (and do they help)? What did not help? (For the child: What do you think helped most?)

What herbs or nondrug therapies has your child tried for the pain (e.g., warm baths, ice packs, listening to music, physical therapy, massage, yoga, relaxation training, hypnotherapy, acupuncture, psychotherapy)? Did they help? Tell me more (why do you think [this therapy] helped?). (Ask same of child.)

What does the pain stop your child (you) from doing (e.g., concentrating, doing homework, attending school, playing sports, attending social activities with friends, attending activities with family)?

Does the pain interfere with falling asleep and/or staying asleep? Does your child (you) wake up feeling tired/not rested?

Does the pain affect your child’s (your) appetite? Has he or she (you) lost or gained weight because of the pain?

What do you think is causing the pain?

PSYCHOSOCIAL ASSESSMENT

Some clinicians have recommended that psychosocial assessment begin as soon as noncoping occurs,¹⁴¹ meaning that a child begins to miss school or curtail participation in regular activities because of the pain. Although the primary care physician should gather psychosocial information as part of the clinical evaluation of the pain problem, a referral to a psychologist or psychiatrist for a psychosocial assessment can greatly extend this inquiry. We believe the process of how the physician makes the referral for a psychosocial assessment is critical to the subsequent acceptance of psychological conceptualizations for symptoms and to management approaches and thus should be done with appropriate care. Patients and their families are more likely to accept a psychological referral and not feel abandoned by their physician if it is presented early and as a routine procedure in all cases of persistent pain causing disruption of normal activities. It is crucial that professionals avoid dichotomization between organic and psychogenic causes of pain²⁸ and to present the psychosocial assessment along with the physical investigation and follow-up. This procedure avoids the trap of waiting for psychosocial assessment as a last resort after all other physical attempts to understand the problem have failed.

Psychosocial assessment may consist of clinical interviews, record keeping, and observation of the interaction among family members. In detailed clinical interviewing, the clinician should assess developmental, behavioral, or psychiatric concerns in the patient’s and family’s history and should identify potential stressors and areas of maladaptive coping with regard to academic success, relationships, school absenteeism, and social activities. Observation and direct questioning concerning the roles of various family members toward pain and its management can uncover maladaptive patterns in how family members respond to the child’s pain. Information concerning the parents’ own emotional functioning, anxiety, and marital stress may also contribute to a more complete understanding of sources of stress within the child and family. Diaries and standardized self-report measures help provide information about the child’s subjective experience of pain and may also provide information on the child’s motivation and attitude toward pain treatment.

Standardized psychological measures may be administered to screen for mental health diagnoses, particularly anxiety and depressive symptoms, in order to assess coping behaviors, functional disability, and family functioning. No specific battery of psychological measures has been identified as particularly useful for assessment of all patients with pain. The choice of whether to administer such measures depends largely on the presenting concerns within the child and family. For patients with long-standing difficulties related to academic performance, referral for formal academic testing may be a useful adjunct for assessing whether children are functioning at grade level; undiagnosed learning disorders may hinder academic performance and contribute additional stress.

Because comorbid sleep disturbances are so prevalent in children with chronic pain, it is useful to obtain a detailed history of sleep patterns through clinical interview or a sleep diary. In particular, it is important to obtain description of any difficulties falling asleep or staying asleep. Children with chronic pain may develop extended problems with sleep because of arousal at bedtime, when negative thoughts and hypervigilance at bedtime are incompatible with settling to sleep. Many children meet diagnostic criteria for a clinically significant sleep disturbance, especially insomnia, that may require separate intervention.

It can be useful to conduct a psychosocial assessment with the child and parents separately to allow for greater understanding of each person’s perception of the pain problem. Allowing the child (and parent) to describe a typical day can be an informative and nonthreatening way of getting specific detail about how pain interferes with the child’s normal daily routine and accommodations that child and family have made because of the pain problem. It is also useful in this context to understand how much time the child spends in activity versus bed rest, because this may have important implications for the child’s rehabilitation needs.

CLINICAL EVALUATION OF SOMATOFORM DISORDERS

In the assessment of a patient presenting with significant somatic symptoms, it is essential that a thorough workup be pursued in order to rule out pathophysiological processes that may have initiated or maintained these complaints. There are many pediatric illnesses, such as seizure disorders, multiple sclerosis, and Guillain-Barré syndrome, that can initially have vague, varied and even inconsistent findings. It is essential that these illnesses not be overlooked. A full history, including a detailed psychosocial history, a complete physical examination, and appropriate laboratory and imaging studies should be pursued.

It is crucial at this point to gather as much collateral information as possible, including medical records from all health care providers involved in the child’s care, grandparents, teachers, the school nurse, and other caregivers such as babysitters or nannies. Many of the professional and laypeople involved in the care might be anxious or frustrated with these patients’ difficult course. After the clinician reasonably concludes that a serious illness has not been missed, a multidisciplinary team should be initiated in order to complete a rounded biopsychosocial evaluation of the patient in his or her larger environs. The team members should then communicate that they are certain that a serious physical illness has not been missed. They should discuss the diagnostic impression of a somatoform disorder and thus lay the foundation for intervention, with assurance that regular reevaluation and reexamination of symptoms will continue. It is important to emphasize that many children may not reach diagnostic criteria for a somatoform disorder but do present with significant treatable symptoms that can be managed.

The diagnostic process for somatoform disorders involving pain complaints requires a quantification of the patient’s pain, including how intense the pain is, when it occurs, its location, and its quality. Whenever possible, self-reports should be performed outside of the parents’ presence, because children may hide or, alternatively, exaggerate pain in their parent’s presence, and parental objectivity may be compromised. Pain disproportionate to the organic etiology does not alone establish the diagnosis. Positive evidence for the existence of psychological factors must be demonstrated to explain the patient’s pain. Evidence that would support the diagnosis from a psychological point of view might include the onset of pain after a specific stress or trauma, disability that is disproportionate to the reported pain, and exacerbations that are predictably linked to stressful events or clear secondary gain. All of these factors should be independently assessed, as well as assessed with regard to the effect each factor has on the child’s level of functional impairment or distress.

In their management model for pediatric somatization, Campo and Fritz²⁷ offered seven useful guidelines for assessment in the context of suspected somatization: (1) acknowledge patient suffering and family concerns; (2) explore prior assessments and treatment experiences; (3) investigate patient and family fears provoked by the symptoms; (4) remain alert to the possibility of unrecognized physical disease, and communicate an unwillingness to prejudge the origin of the symptom; (5) avoid excess and unnecessary tests and procedures; (6) avoid diagnosis by exclusion; and (7) explore symptom timing, context, and characteristics.

Standardized measures may provide useful information about children’s specific somatic symptoms, as well as their level of functional disability. For example, the Children’s Somatization Inventory⁷⁹ is a self-report instrument of somatic symptoms experienced by children and adolescents over a 2-week period. This may yield a quick and helpful overview of somatic symptoms. Functional disability can be assessed with the Functional Disability Inventory,³⁵ which provides information on the child’s difficulty performing common physical and recreational activities.

RESEARCH ISSUES AND CONTROVERSIES

Diagnosis and assessment of pain conditions and somatoform disorders involves taking a comprehensive biopsychosocial perspective. Within the somatoform disorders, there remains controversy over nosology, and future research efforts focused on clarifying symptoms in children and adolescents will increase the relevance of this diagnostic category in pediatrics. There are some areas of pain assessment that are much further developed than others. For example, tremendous research attention has been devoted to devising developmentally appropriate rating scales for assessing pain intensity in children of various ages. However, much less attention has been devoted to validating measures of physical or emotional functioning in children with chronic pain. There has been movement in the pain field toward common assessment instruments to document patient response to treatment. The Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT) has accomplished this for adults, recommending a set of core domains to be considered in clinical trials of chronic pain in adults¹⁴² and specific measures to assess each of these domains.¹⁴³ A similar effort is under way in pediatric pain (PedIMMPACT) with a current draft of a set of domains and recommended assessment tools to consider in all clinical trials involving pediatric acute or chronic pain.¹⁴⁴ These efforts should greatly extend clinicians’ ability to synthesize research findings and make treatment decisions.

CANCER PAIN

Cancer pain in children is different from that experienced by adults because different types of cancer afflict children and adults and because the treatment protocols for their cancer are different. For example, children being treated for cancer commonly experience mucositis, stomatitis, and neuropathic pain from chemotherapy. The focus of pain treatment is twofold: (1) the pain caused by the neoplasm and (2) the pain caused by the treatment of the cancer. Both pharmacological and psychological treatment modalities have been investigated. Pharmacological pain management focuses mainly on analgesic drugs, such as ibuprofen, acetaminophen, and opioids; on tricyclic antidepressants; and on anticonvulsant medications. Although much research attention has been devoted to nonpharmacological management of procedural pain related to cancer treatment, only a handful of studies on nonpharmacological treatments for other types of cancer pain have been conducted to date. In a few case studies, researchers have investigated the use of hypnosis and imagery for management of cancer pain in children. However, there are currently no empirically validated psychological treatments for pediatric cancer–related pain.¹⁴⁵

MUSCULOSKELETAL DISORDERS

Management of musculoskeletal disorders such as juvenile arthritis and hemophilic arthropathy has focused on anti-inflammatory drugs, as well as opioids and tricyclic antidepressants, with varying degrees of success. Treatments may differ, depending on the activity of the disease. In small trials of cognitive-behavioral therapy, children with arthritis were taught progressive muscle relaxation, guided imagery techniques with distraction, and methods of “blocking” transmission of pain messages.¹⁵⁵ Cognitive-behavioral interventions combined with antidepressant agents are currently being investigated in the treatment of juvenile fibromyalgia.

Physical therapy and maintaining a regular exercise program are important aspects of pain treatment in musculoskeletal disorders for several reasons. First, there is a tendency to avoid using painful parts of the body. In time, because of lack of use, these joints become stiff, with restricted range of motion. Also, muscles that are not used become weaker and atrophy. Treatment aimed at reducing inflammation, good pain management, and active physical therapy and exercise helps keep affected body parts healthy and functional.

A child with arthritis may experience pain during physical therapy, and the therapy-associated pain may create avoidance of physical therapy and anticipatory anxiety. Although the concept of “good pain” versus “bad pain” may seem paradoxical, children can learn the difference. Good pain is a sign that the child is working hard and doing more and more, resulting in greater range of motion of joints and greater physical abilities over time. Children can be taught that any new activity that involves the use of muscles that have not previously been used as strenuously may hurt. However, the pain typically lessens as the child becomes increasingly physically active. This type of pain is different from “bad pain,” which continues long after the physical therapy sessions or exercise ends. Chronic pain is “bad pain”; it does not serve any purpose and should be treated. Iyengar yoga is an excellent self-help tool for children and adolescents who have arthritis, because it involves specified poses with the help of props and can build muscle mass, increase flexibility, and build confidence. As with any type of chronic pain, anxiety and other factors can magnify the pain, and reduced confidence about coping with the pain can contribute to pain-related disability. Psychological and complementary therapies can assist with coping, reduce pain, and help increase function.

SICKLE CELL DISEASE

Both acute and chronic pain treatment strategies are needed for children with sickle cell disease. For some children, vaso-occlusive pain episodes occur frequently and are difficult to manage. Ideally, management of a painful crisis begins with having a treatment plan, medication, and other strategies set up in advance of the pain. A number of barriers to successful treatment of pain have been identified in children with sickle cell disease, such as conflicting perceptions between patients, their families, and healthcare professionals about pain that is reported and analgesia that is required. Guidelines for the management of acute vaso-occlusive pain have been published.¹⁴⁹ Although there is considerable variability in the way sickle cell disease pain is managed, the standard treatment protocol for painful episodes has been rest, rehydration, and analgesia. There are a variety of analgesic agents to choose from, such as acetaminophen (paracetamol), oral or parenteral nonsteroidal anti-inflammatory drugs, and oral or parenteral opioids. Each of these options has advantages and disadvantages.¹⁵⁶ Continuous infusions of analgesics and patient-controlled analgesia have been shown to be effective and widely used in hospital settings to manage severe pain. However, the opioid dose required to achieve pain relief varies considerably during each painful episode, from one episode to another, and between individual patients. Patients with sickle cell disease pain may need higher doses of analgesics than do patients with other forms of pain.¹⁴⁹

Physical, psychosocial, and complementary/alternative approaches may also be used to treat acute pain episodes, although there is currently limited published evidence for their effectiveness in reducing sickle cell disease pain. Physical and complementary therapies used in sickle cell disease consist of hydration, heat, massage, physical therapy, transcutaneous electrical stimulation, and acupuncture. Psychosocial interventions such as hypnosis, cognitive-behavioral therapy, and coping skills training have received some empirical support, particularly in providing children with sickle cell disease more adaptive pain management skills.¹⁵⁷

The management of chronic pain associated with sickle cell disease is not as well documented. Like the management of other forms of chronic pain, a broad approach that integrates pharmacological, psychological, physical, and complementary therapies is expected to achieve the best results.

HEADACHE

Pediatric headache treatment research is focused mainly on pediatric migraine headache. There has been some interest in pediatric tension headache, with a few published studies; this section, however, focuses on published treatment studies of pediatric migraine headache. Hermann and colleagues¹⁴⁶ conducted a comprehensive review and meta-analysis of the treatment research with pharmacological and behavioral treatments for pediatric migraine headache. These authors reported that thermal biofeedback and the combination of biofeedback and progressive muscle relaxation produced the largest treatment effects. Thermal biofeedback involves teaching patients how to increase their peripheral temperature by using electronic instruments (a temperature probe on the finger) to measure temperature and a computer monitor to display reinforcing information back to the patient. These treatment modalities were more efficacious than other behavioral treatments, psychological treatment, drug placebo, and prophylactic drug regimens. The use of thermal biofeedback and relaxation training in the treatment of pediatric migraine has continued to receive further support in more recent original treatment research. Pediatric migraine is one of the few pain conditions in childhood for which there is sufficient empirical support to recommend one specific treatment approach (biofeedback and/or relaxation).

RECURRENT ABDOMINAL PAIN OR FUNCTIONAL BOWEL DISORDERS

On the basis of the theory that functional bowel disorders results from dysfunction in the brain-intestine neural signaling, treatment consists of measures to reduce intestinal sensitivity and to re-regulate the neural signaling mechanism. This can be accomplished with specific medications (e.g., low-dose amitriptyline), adequate sleep and diet, and both physical interventions (e.g., Iyengar yoga) and psychological interventions (e.g., hypnotherapy). Certain medications are used in functional bowel disorders for constipation-predominant irritable bowel syndrome (e.g., tegaserod [Zelnorm]) and for diarrhea-predominant irritable bowel syndrome (e.g., low-dose amitriptyline [Elavil]). Constipation also can be treated with herbal remedies (apricot and linnem), sorbitol (candies for diabetics), polyethylene glycol (MiraLax), and stool softeners such as docusate sodium (Colace). Loperamide (Imodium) as a temporary measure can also ameliorate diarrhea. Finally, peppermint oil geltabs before meals have proved effective in reducing belly pain, and ginger taken in the form of ginger candy or dried sweetened ginger or tea brewed with pieces of fresh ginger can reduce nausea. However, a good treatment plan includes nondrug therapies, with or without medications.

In a review of randomized controlled trials for the treatment of recurrent abdominal pain in children, Weydert and associates¹⁴⁷ summarized available evidence of the effectiveness of pharmaceuticals, dietary changes, cognitive-behavioral therapy, and botanicals. These authors found evidence for treatment of recurrent abdominal pain through a number of different modalities. In the studies reviewed, there was evidence of successful treatment with the pharmaceuticals famotidine and pizotifen, cognitive-behavioral therapy, biofeedback, and peppermint oil enteric-coated capsules. Dietary changes such as the addition of fiber or the avoidance of lactose containing products were found to be less efficacious. It is difficult, however, to summarize these studies because of the differing definitions of recurrent abdominal pain that have been used. The Rome classification¹¹¹ should help with standardizing the definitions and samples of patients in future treatment studies of functional bowel disorders.

Numerous studies have focused on treatment of recurrent abdominal pain with cognitive-behavioral interventions. For example, in one study, cognitive-behavioral family intervention was compared to standard pediatric care for recurrent abdominal pain.¹⁵⁸ Children who received cognitive-behavioral family intervention participated in five 40-minute sessions and were trained in relaxation skills and positive self-talk; parents were taught to limit secondary gains from sick behavior. Children receiving the standard medical care group underwent usual and customary medical treatment, consisting of follow-up office visits, education, support, and medications as deemed appropriate by the treating physician. Children who received the cognitive-behavioral intervention reported significantly less pain after treatment and at the 1-year follow-up than did children receiving standard care; this outcome supports the use of cognitive-behavioral family interventions in children with abdominal pain.¹⁵⁸

Other investigators examined the use of citalopram (Celexa) for the treatment of recurrent abdominal pain with comorbid anxiety and depressive disorders.⁴⁷ Citalopram is a selective serotonin reuptake inhibitor commonly used to treat both adult and pediatric anxiety and depression. Campo and coworkers conducted an open-label trial of citalopram in 25 patients aged 7 to 18 years in whom recurrent abdominal pain had been diagnosed. The children were enrolled in a 12-week protocol. At the end of the trial, children reported decreases in abdominal pain, anxiety, depression, somatic symptoms and functional impairment. The authors concluded that citalopram is a promising treatment for recurrent abdominal pain with comorbid anxiety or depression and that a double-blind randomized, controlled trial is needed to further assess the efficacy of this treatment.

MULTIDISCIPLINARY CARE OF CHILDREN WITH CHRONIC PAIN

Children with chronic nonmalignant pain may be referred for specialized pain care. Children who receive care in a multidisciplinary or interdisciplinary pediatric pain clinic are typically offered a rehabilitation approach to treatment. In this approach, pain is accepted as a symptom that might not be eradicated, and efforts are directed toward improvement of functioning. As functioning and coping skills are improved, pain often remits as well. Such treatment may involve pharmacological strategies, physical or occupational therapy, cognitive-behavioral therapy, family therapy, group therapy, and complementary and alternative approaches. The specific structure of each program differs; some programs emphasize intensive physical therapy and inpatient rehabilitation, whereas other programs treat children exclusively on an outpatient basis. Zeltzer and Schlank¹⁴⁰ listed pediatric pain and gastrointestinal pain programs in the United States, Canada, and elsewhere.

In general, there has been a paucity of treatment research on chronic nonmalignant pain in children. There are limited published trials of any one component of multidisciplinary treatment, although there is emerging support for psychological therapies and physical therapy. There are very few published data on pharmacological treatments for chronic pain in children, despite their widespread use. Eccleston and colleagues¹⁴⁸ reviewed about a dozen controlled trials of psychological therapy for children and adolescents with chronic pain (with meta-analysis of a subset for pain relief). These authors concluded that there is strong evidence that psychological therapies, principally relaxation and cognitive-behavioral therapy, are effective in reducing the severity and frequency of chronic pain in children and adolescents. The cognitive-behavioral therapy interventions primarily involved brief, standardized treatments in which children were taught specific coping skills (e.g., positive self-statements, relaxation).

There have been few descriptions of the outcomes of pediatric patients treated in multidisciplinary pain clinics. One was a treatment outcome study of the effectiveness of interdisciplinary cognitive-behavioral therapy.¹⁵⁹ In this study, 78 adolescents aged 11 to 18 years who had chronic nonmalignant pain and had suffered pain-associated disability for at least three months were enrolled in an intensive inpatient pain treatment program involving physiotherapy and psychological therapy. The treatment program included education regarding physiology and anatomy of pain, exercise and chronic pain, regular activity, and cognitive therapy. An adult family member was also involved in therapy with the adolescent patient. Conclusions after a 24-month assessment were that cognitive-behavioral therapy delivered in this interdisciplinary context is a promising treatment for adolescents suffering from chronic pain. The patients demonstrated improvement in physical performance and activity and in school attendance and a reduction in emotional distress after treatment.

COMPLEX REGIONAL PAIN SYNDROME

CRPS is an example of a condition that is often treated in a multidisciplinary pediatric pain clinic. Although many adult pain programs treat CRPS with epidural and other types of nerve blocks, most pediatricians who treat pain do not use these invasive methods, because there are no data to indicate their effectiveness over less invasive methods such as physical therapy, support of good sleep, medications aimed at neuropathic pain, and psychological interventions.

Treatment studies of CRPS in children, however, are scarce. Case studies report success in treating children with reflex sympathetic dystrophy and other neuropathic pain with gabapentin, a novel agent developed for the treatment of seizures.^160,161 However there have been no controlled studies of gabapentin in children with CRPS.

There have been several descriptions of intensive physical therapy and rehabilitation programs for the treatment of CRPS in children.^39,162 In one study, 103 children with a diagnosis of CRPS participated in intensive physical therapy–based exercise programs for 5 to 6 hours per day for a period of 6 to 8 weeks (either as inpatients or as outpatients). Findings demonstrated that symptoms resolved in 92% of the children and they were able to regain full function after the intensive exercise treatment protocol.¹⁶² Similarly, the benefit of physical therapy and cognitive-behavioral treatment were demonstrated in a randomized controlled trial, which included 28 children with CRPS.³⁹ Each child was randomly assigned to receive physical therapy for 6 weeks either once a week or three times a week. Both groups received weekly cognitive-behavioral treatment. In general, all children showed reduced pain and improved function from physical therapy and cognitive-behavioral therapy. The frequency of the physical therapy did not alter outcome.

THE REATTRIBUTION MODEL

One specific strategy for treatment of somatoform disorders that is gaining popularity is the reattribution model, as is the modified version, the extended reattribution and management model.^169–173 This mode of treatment was specifically designed to facilitate the general practitioner’s identification and treatment of adult patients suffering from somatoform symptoms (summarized by Fink et al¹⁷²). This model entails the use of the following stages: (1) feeling understood, (2) broadening the agenda, and (3) making the link, in order to facilitate the shift from the patient’s acceptance of medical to the psychological standpoint. In several randomized controlled trials, investigators have compared general practitioner training in the reattribution model with standard practice.^173,174 These investigators found significant attitude changes after intervention, in that physicians felt more comfortable dealing with patients with somatic complaints.¹⁷⁴ The patients of practitioners trained in the reattribution model did evidence significant reductions in physical symptoms at the 6-month follow-up.¹⁷³ Although developed for adult general practitioners, the reattribution model provides important education on the interrelationship between physical and psychological factors and on how they interact with each other, which would be equally relevant in working with pediatric patients.

SEQUENCE OF TREATMENT

In the initial stages of treatment, the development of a bond between physician and the patient and parents is essential, as is using a psychoeducational approach in a measured way to encourage the patient to understand the mind-body connection. A complete history should be pursued at this point, which in effect tells the patient that the physician is interested in the somatic symptoms, as well as the circumstances in which they arise. An intensive focus on psychosocial issues is crucial, because, as stated previously, somatic disorders frequently occur in a setting in which the parent is medically ill or has a somatization disorder. Other psychosocial issues that should be pursued as risk factors include a chaotic household; employment, legal, or financial difficulties in the home; low socioeconomic status; substance abuse; and physical or sexual abuse. Discussion should also focus on how certain psychiatric disorders include somatic symptoms as part of the illness: for example, that major depressive disorder causes anorexia, fatigue, and psychomotor retardation, or that panic disorder can produce the sensation of chest tightening, dizziness, and paresthesia. A complete physical examination with a focus on the patient’s chief complaint is important at this stage to assure the patient that the physician takes the symptom seriously. Only appropriate laboratory testing should be done if necessary, on the basis of evidence from the history and physical examination.

In the second stage of treatment, assisting the patient in understanding the interrelatedness of mind and body in a more direct way may be necessary. This can be easily demonstrated in an office visit by merely showing how hyperventilating into a bag or spinning in a chair can cause panic attacks. The treating physician should then explain that symptoms tend to belong to three categories: (1) a verifiable physical disorder, (2) a demonstrable psychological symptom with a somatic manifestation, or (3) a combination of physical disease and psychological symptoms. Also during this stage, the patient is instructed to keep a diary of symptoms, which includes any possible environmental or social stressors, to check later for relationships. Finally, a family history should be documented to explore the role modeling of the sick person in his or her home, both when he or she was a child and in other family members who had medical illnesses or somatoform disorders. The patient’s own complaints should be reframed in view of the identified patterns and stressors; this advances the patient’s shift toward a more psychological perspective.

The final stage of treatment should involve solidifying the link between physical and psychological in a concrete manner. This may require additional explanations, particularly with the information the patient has provided about his or her own experience. Demonstrations may again need to be used, and printed literature and patient handouts can be useful in this stage. The patient must be given the opportunity to discuss the presenting complaints but encouraged to entertain the alternative explanations, all the while with the reassurance that the symptoms are real and not “all in your mind.” Patience and persistence are required on the part of the physician, and the importance of building a rapport with the patient and his or her parents is essential for a collaborative relationship.

Regardless of the model used to address the symptoms of somatoform disorders, follow-up care should involve a multidisciplinary or interdisciplinary approach. A variety of treatments would follow this stage, including psychotherapy, focused on behavioral or cognitive techniques. This therapy often involves the use of relaxation techniques targeted to triggering situations identified in the mind-body diary and mindfulness training, with a focus on using the mind in order to distract or override the experiencing of the symptoms. Other therapies, including pharmacological agents (e.g., antidepressants), coping skills groups, group therapy, acupuncture, biofeedback, energy healing, and other complementary alternative medicine treatments may be considered to reduce somatic complaints, treat comorbid mental health disorders, or target behavioral changes in the patient’s ability to cope with stress and/or physical symptoms. If the symptoms persist over time and treatment, a consultation with a specialist (e.g., a neurologist for a patient with neurological complaints) should be considered in order to assess for comorbid conditions or to examine remaining symptoms.¹⁷⁵

During follow-up treatment, several issues, including patient and family fears provoked or increased by the symptoms, should be addressed. Anxiety can be pervasive in these disorders, affecting the patient, the family, and even the various medical professionals involved. This anxiety can exacerbate the symptoms and may even confound treatment. Separation fears in both the patient and the parents can be pervasive in the context of somatoform disorders, and people who care for and about these children frequently see them as “vulnerable.” It is important to assuage these fears with frequent reminders of past successes over the course of treatment, particularly those that demonstrate an increase in level of functioning. The patient, parents, and other care providers should be reassured that the physician is continuing to explore the possibility of unrecognized disease. They should frequently be reminded that the physician is unwilling to prejudge the origin of the symptom and that a thorough exploration of the symptom will be pursued as warranted. As the patient’s condition improves, care should be consolidated, with the primary medical provider arranging check-in appointments that the patient is expected to keep with or without a complaint. These visits serve to reassure the family that their concerns have not been dismissed. The physician involved may also be useful in dealing with the distress that this child has produced, either by frequent use of nurses or by absenteeism, and can act in a manner to repair the bond between patient, parents, and teachers. The primary physician by this point serves as an attachment figure within the family, further encouraging the individual to remain involved in a non–crisis-oriented way, such as with regular appointments, to avoid rejection sensitivity and abandonment issues, which often arise with these patents.

At this later stage in treatment, it is also helpful to redefine what constitutes medically legitimate excuses from school or other activities, as well as situations in which it is appropriate to contact the physician or present to an emergency room. A system should be worked out with the school whereby only one medical professional from the team be specified as the medical excuse writer, in order to decrease potential problems such as splitting within the team, as well as doctor shopping in outside institutions. The frequency of symptom monitoring should occur on a regular basis with a plan to taper it slightly with vast changes of symptoms. Although symptomatic relief is certainly desirable, functional improvement needs to be the focus of this patient’s treatment. Some patients are loath to identify anything that has improved, saying everything is “the same as always”; thus, when specifics are asked about, such as school attendance, school performance, family and peer relationships, social functioning and health service use, the physician may observe improvements in a way that the patient cannot.

RESEARCH ISSUES AND CONTROVERSIES

Evidence-based treatment for pediatric pain and somatoform disorders is severely limited. Few overall studies have been conducted, and there are wide differences in populations and study designs. Currently there is insufficient available data to compare the effectiveness of treatment approaches for particular conditions or to indicate how treatment components work in concert. These are important areas for future research inquiry. In view of the small populations of patients at any one site, there is a particular need for multisite studies, which would be facilitated by the development of cooperative pediatric chronic pain research consortia.