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(p. 41) Assessment and Evaluation 

(p. 41) Assessment and Evaluation
Chapter:
(p. 41) Assessment and Evaluation
Author(s):

Tonya M. Palermo

DOI:
10.1093/med:psych/9780199763979.003.0004
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Subscriber: null; date: 14 November 2018

This chapter provides an overview of how to conduct a psychological assessment and evaluation of a child with chronic pain. Different domains of assessment (e.g., pain, emotional and physical functioning, sleep and other lifestyle factors, family and peer relationships, and school performance); evaluation methods (e.g., clinical interviews, questionnaires); and methods for tracking progress throughout treatment will be described.

Appropriate assessment and evaluation of the child with chronic pain and his or her family is the critical first step necessary in developing a comprehensive treatment plan. Assessment of children’s chronic pain differs from assessment of acute pain in several important ways. For example, while measurement of children’s acute pain typically focuses primarily on pain intensity (that is, the perceived strength or amount of the painful sensation), an assessment of pediatric chronic pain will also tap a number of other details about the pain, such as the history of the pain and its duration, frequency, location, and other physical symptoms. Furthermore, a child’s functioning can be very broadly affected by pain (Palermo, 2000). Pain can significantly impact school performance and attendance, peer relationships, and family functioning. Therefore, an assessment of a child with chronic pain also requires information on how the child and family are functioning in many areas, including emotional and physical functioning, sleep and other lifestyle factors, family and peer relationships, and school performance, in order to understand the broad functional impact of the pain.

(p. 42) A variety of evaluation methods can be used in the assessment, such as clinical interviews, questionnaires, and diaries—and the extent to which an individual clinician will use each of these methods depends on their preference and also the structure of the therapeutic setting. The majority of information for a chronic pain assessment comes from the clinical interview, and it is supplemented by having the child and parent(s) complete questionnaires. It is important that the psychological assessment and evaluation of a child with chronic pain is considered in the context of other relevant assessments that may be ongoing, such as medical evaluations (completed by the child’s pediatrician or other medical specialist) and objective physical assessments of functioning (completed by a physical therapist).

The chronic pain assessment should accomplish a number of goals, which include: assessment of the child and family’s treatment needs, identification of targets for intervention (such as individual child and parent or family factors that may contribute to the child’s experience of pain or response to pain), and the determination of pertinent goals and outcome information to enable tracking of treatment progress.

General Issues to Consider in Assessment

Assessment is consistent with a biopsychosocial model, focussing on a thorough description of the child’s pain (e.g., onset, frequency, duration) and physical and biological factors (e.g., disease-related factors, other somatic and physical symptoms); social and environmental factors that can influence pain response (e.g., parental and family reactions to pain); child cognitive and emotional factors (e.g., depression, coping); and health habits or lifestyle factors. It is critical to communicate with the parent(s) and child or adolescent in a manner that establishes reassurance, rapport, and a belief in the significance of the pain problem throughout the initial evaluation and into treatment. Asking families about any previous experiences with psychologists or their perception of what a psychologist does, and highlighting the difference between psychologists who work in mental health rather than pain-management settings is often helpful for families (e.g., “My job is to help kids and parents better understand pain and find ways to make the pain better”). It can also be helpful to specifically discuss with the family at the outset the reason that the psychological assessment is being conducted, as some parents and children will be reticent about the assessment. One explanation that is well received by families is to discuss the importance of considering the child as a whole person. The clinician can explain that pain affects thoughts, feelings, and actions and is influenced by them as well, so that all children with recurrent or chronic pain can benefit from attention to the psychosocial as well as the biomedical aspects of their pain.

During the psychological assessment, the clinician should keep in mind the potential for comorbidity between chronic pain and several psychological disorders (e.g., anxiety, depression) in children and adolescents (Dorn et al., 2003; (p. 43) Kashikar-Zuck et al., 2008). It is possible that, in addition to pain, there may be other psychological issues that should be identified and addressed, either as part of or separately from the pain management plan. For example, if in the process of the chronic pain assessment the clinician determines that the child is experiencing significant depression, referral to a mental health professional who could assist in providing either a pharmacological or non-pharmacological intervention may be warranted. On one hand, depending on the severity of the comorbid disorder, it may be difficult for the child to fully engage in the pain management plan until the other issues are adequately addressed. On the other hand, if the depression is mild and seems directly related to the current experience of pain, moving forward with the chronic pain treatment plan as quickly as possible may be the best approach to reducing the emotional distress experienced as a result of the pain.

It is important for the clinician to review and have a good understanding of any underlying medical issues (e.g., chronic illness, injury) and physical factors that may be related to the pain. Ideally, psychologists would function as part of an interdisciplinary team whose other team members (e.g., physician, physical therapist) are conducting the medical and physical components of the evaluation. For psychologists working on their own, it is important to initiate a thorough review of medical records and discussion with the referring physician or other health professionals regarding the child’s medical condition, physical factors, and previous treatments attempted.

Methods of Evaluation

Clinical Interview

The clinical interview is the most important component of the evaluation. It serves as a crucial opportunity for the patient and parent to describe the pain experience and how it has affected their lives. Typically, the clinical interview follows a semi-structured format and begins by asking the parent and child in an open-ended manner to describe the pain problem. Prompts can be used to obtain details about when the pain began, how it has changed over time, details on the location of the pain, words used to describe the pain, etc. Then, the interview may proceed to identifying areas where pain interferes in the child’s life. Asking parents to describe a typical day starting with when the child wakes up can be a helpful way to determine the child’s current routines and activities and how pain might be interfering. The tables below list relevant interview probes for each major area of the assessment.

Patients and their families can be interviewed together, although it is often beneficial to ensure that there is some time to interview the child and parents separately, particularly for older children and adolescents. Depending on the complexity of the case, a clinical interview can take anywhere from 45 to 90 minutes to complete. In addition to providing necessary detail regarding the child’s pain, the clinical interview also provides an opportunity for behavioral observation of the child and family, including the child’s general mental status, the (p. 44) parents’ emotional functioning, and the manner in which family members interact. A description of each of the major areas to include in the interview is described below.

Pain History

The patient can be asked about when their pain first started, as well as usual and worst pain intensity, location, frequency, and duration of pain. Pain intensity ratings can be elicited using one of a variety of single-item self-report measures of pain intensity in children, such as the Faces Pain Scale–Revised (FPS-R; Hicks, von Baeyer, Spafford, van Korlaar, & Goodenough, 2001) for children aged five years and older, and a 100 mm visual analogue scale (VAS) or simple 0–10 numeric rating scale (NRS) for children aged eight years and older. A VAS to measure pain is a single line anchored by descriptors (i.e., from “no pain,” to “worst pain possible”) where the child or adolescent marks a place along the line to reflect the strength of the painful sensation. Several ratings can be useful, including the child’s perception of his or her usual pain level, the pain level at its worst or at its best, and current pain intensity. Children should be queried about whether the day of the clinic visit is a typical day in regard to how they are feeling and how they are experiencing pain. The clinician is directed to two excellent evidence-based reviews of existing pain-assessment measures for a thorough discussion of this topic: Stinson et al. (2006), which was commissioned by the Ped-IMMPACT group (McGrath et al., 2008); and Cohen et al. (2008), which was solicited by the Society of Pediatric Psychology’s Assessment Task Force.

In addition to pain intensity, children can describe other aspects of their pain, such as frequency and duration. Assessment of pain behaviors (e.g., Adolescent Pain Behavior Questionnaire; Lynch-Jordan, Kashikar-Zuck, & Goldschneider, 2010) may increase the clinician’s appreciation for how the parent or caregiver perceives the child’s behavior when the child is in pain. Pain body charts (also referred to as “body maps”) are sometimes included on intake questionnaires to help the child identify primary locations on the body of their pain as well as any other pains they may experience (von Baeyer et al., 2011). It is important to remember that children who experience one form of chronic pain (e.g., headaches) frequently have pain in other locations as well (e.g., abdominal pain; Anttila, Metsahonkala, Mikkelsson, Helenius, & Sillanpaa, 2001). Therefore, the clinician should assess all types of pain experienced, not just the pain problem that the referring provider identifies or the problem the child or family identifies as most distressing at the time of the assessment. The clinician may also consider measuring other somatic symptoms (e.g., Children’s Somatization Inventory; Garber, Walker, & Zeman, 1991) to gain a more complete understanding of related symptoms such as fatigue, muscle weakness, and dizziness that are common in children with chronic pain.

An important component of the pain history is the identification of patterns and triggers related to the pain, as well as typical pain-coping strategies. A child’s pain might be worse in the morning than the evening, or on school days than in non-school days. Children sometimes report spontaneous use of certain coping (p. 45) strategies (e.g., distraction: “I just try to think about something else”; relaxation: “I take a deep breath and hope it will go away”) which can provide insight into the aspects of a cognitive-behavioral treatment plan that may be most beneficial to that child. Most children and parents can identify certain precipitating and relieving factors for the pain, and this information is also invaluable in developing an effective treatment plan.

Queries can also be directed toward previous experience with different pain treatments (and any other ongoing treatments) and their effectiveness. It is informative to specifically ask families about the use of any complementary and alternative medicine approaches (e.g., consultation with a naturopath), as some families may fail to spontaneously report these interventions. Asking the parent and child about their beliefs about pain, what they think is causing the pain, and their expectations for treatment can also be helpful at providing insights into the family’s likely acceptance of a cognitive-behavioral approach to pain management.

Table 4.1 below lists interview probes the clinician can use to obtain a pain history from the child and parent. (p. 46)

Table 4.1 Interview Probes for Gathering a Pain History

Domain

Interview Probe

Pain onset

  • When did your pain first start?

  • How has it changed since then?

Pain frequency/duration

  • How many times have you had pain in the last week?

  • Are you experiencing pain today?

  • How long does your pain usually last?

  • Do you have any times with no pain?

Pain location

  • Where are you most bothered by pain?

  • Do you have pain in any other parts of your body?

Pain patterns/triggers

  • Have you noticed any patterns with your pain? (such as differences on school days vs. weekends; evenings vs. mornings; or in the summer vs. the rest of the year?)

  • Is there anything that you know of that you think makes your pain worse? Or better?

Pain interference

  • What kinds of things are hard to do (or you can’t do them) because of pain?

  • What things do you wish you were able to do that you aren’t able to do now?

Pain treatments

  • Which health professionals have you seen for pain in the past?

  • What treatments did they recommend, and which did you try? How did they work?

  • Have you used any complementary or alternative medicine approaches?

Pain beliefs

  • What do you think causes your pain?

  • Is there any explanation for your pain that you have heard that makes sense to you?

Treatment expectations

  • What would you like to see happen with your pain?

  • What do you expect with our pain treatment?

Medication Review

Both over-the-counter and prescription medications are often used to treat chronic pain in children. It is essential for psychologists to understand that many of the medications used with children have not been licensed for pediatric use, or not for the specific pain indication. In a thoughtful commentary on this topic, Finley and Gregoire (in press) highlight the lack of currently published guidelines or treatment algorithms for chronic pain in children, hindered in large part by the insufficient evidence base for medications. For most medication classes, there is a complete absence of randomized controlled trials in children with pain. However, because many children will have been prescribed medications, it is important for the clinician to have some basic familiarity with the most commonly used classes of drugs in children with pain, including antidepressants, anticonvulsants, and opioids.

Anticonvulsants were originally developed for seizure control but have been used frequently in individuals with chronic pain. Gabapentin and pregabalin have become popular in the treatment of neuropathic pain, including complex regional pain syndrome and phantom limb pain, and for some genetic and metabolic disorders (e.g., Fabry disease, Charcot-Marie-Tooth disease), as well as for other conditions such as fibromyalgia and chronic daily headache. Another major class of medication used primarily in the treatment of neuropathic pain is tricyclic antidepressants (e.g., amitriptyline). They may also be used to treat comorbid conditions (e.g., sleep problems, depression). Opioid medications, such as oxycodone and methadone, are used relatively less frequently in pediatric practice compared with adult practice, but are used extensively in some populations (e.g., cancer), especially where there are ongoing disease processes contributing to pain. Other medications may also be used, including topical anesthetics such as lidoderm patches for focal pain, clonidine patches for weaning children from opioids, and sleep medications (soporifics) for facilitating sleep onset or maintenance.

In performing a medication review, the clinician will want to obtain a complete list of medications that the child is taking. In addition, it is important to also ask about the timing (i.e., taking as needed, or on a scheduled basis) and dosage. Because some classes of medications (e.g., opioids) may cause drowsiness and affect daytime alertness, during medication review it is important to understand whether the child is able to engage in functional activities after taking medicines during the day. Table 4.2 lists commonly prescribed medications in children with chronic pain, and their intended purpose. (p. 47)

Table 4.2 Commonly Prescribed Medications in Children with Chronic Pain

Medication Class

Medication Example

Indication

Tricyclic antidepressants

Amitriptyline (Elavil)

Neuropathic pain, chronic daily headache

SSRIs and SSPR+

Citalopram (Celexa), duolexetine (Cymbalta)

Anxiety, depression

Anticonvulsants

Gabapentin (Neurontin), pregabalin (Lyrica), topiramate (Topamax)

Neuropathic pain, migraine headaches

Topical agents

Lidoderm patches

Neuropathic pain (focal)

Alpha adrenergics

Clonidine patches

Weaning from opioids

Opioids

Oxycodone, methadone, morphine, codeine

Analgesia

Sleep medications

Melatonin, desyrel (Trazodone), zolpidem (Ambien)

Sleep onset problems, insomnia

Assessment and Measurement of Function

Several broad measures of health and functioning are available, such as the generic Pediatric Quality of Life Inventory (PedsQL; Varni, Seid, & Rode, 1999), and the pain-specific impact measure the Bath Adolescent Pain Questionnaire (BAPQ; Eccleston et al., 2005). In some pain clinics, broad measures such as this are routinely incorporated into the assessment and reassessment of patients. There are several advantages of broad measures, including that norms are available for comparison of the patient to other children with chronic pain. In addition, there is efficiency in using one measure to capture the child’s functioning across multiple domains, including physical functioning, emotional functioning, school, family, and social relationships.

Assessment and Measurement of Emotional Functioning

Assessment of emotional functioning involves reviewing the child’s current emotional status, current or recent sources of stress for the child, and how the child (and family) typically deal with stress. Furthermore, children with chronic pain frequently experience high levels of emotional distress (e.g., depression symptoms, anxiety) that may either predate their pain or occur as a result of pain. The clinician should directly query the child and parent about the child’s current and previous mood, anxiety, and any other concerns related to emotional functioning. It is not uncommon for children with pain to present as “worriers” with perfectionist tendencies, so it is imperative that the clinician gain perspective on whether these issues are clinically significant and in need of intervention or are simply temperamental characteristics that are important to be aware of as treatment progresses. Table 4.3 lists interview probes in the area of emotional functioning. (p. 48)

Table 4.3 Interview Probes for Assessing Emotional Functioning

Domain

Interview Probe

Depressive symptoms

  • Tell me about your mood.

  • Have you ever felt sad or down?

  • Do you have trouble sleeping or eating normally?

  • Do you have any trouble with friends?

  • Do you have a hard time concentrating or getting things done?

  • How do you feel about yourself?

  • Do you ever feel hopeless?

Anxiety symptoms

  • What kinds of things do you worry about?

  • Do you feel tense?

  • Do you have a hard time letting things go that bother you?

  • Do you get annoyed or angry easily?

Recency of symptoms

  • Do you feel this way now?

  • How long have you felt that way?

  • How often do you feel like that?

  • How has having pain affected your mood?

Use of validated questionnaires that employ clinical cutoffs for the assessment of mood and other aspects of emotional functioning are often helpful to incorporate into the evaluation. The psychologist can opt to select questionnaires specifically targeting different psychological symptoms, depending on the presentation of the patient, such as the Children’s Depression Inventory (CDI), either the short or the long form (Kovacs, 1985), or the Revised Child Anxiety and Depression Scale (RCADS; Chorpita, Moffitt, & Gray, 2005). In addition, the clinician could utilize a broad-based measure such as the Behavior Assessment Scale for Children (BASC; Reynolds & Kamphaus, 1992) to provide a comprehensive assessment of the child’s emotional and behavioral functioning across multiple domains. Regardless of the specific measure selected, while there is good evidence for the psychometric properties of these measures when applied to clinical samples of children with pain (Eccleston, Jordan, & Crombez, 2006), it is important to remember that patients with chronic pain may experience elevations on certain items or subscales of these measures simply as an artifact of their chronic pain (i.e., they may endorse sleep disturbances or other somatic items, resulting in high scores for depression or anxiety, when these issues might be solely attributed to their pain rather than reflective of a mood disturbance). Clinical judgement is needed to determine the extent and role that any other psychological factors may be playing in the child’s pain experience. In some cases, the clinician will need to seek additional consultation or refer the patient to other mental health professionals for further intervention.

(p. 49) There are two pain-specific areas of emotional functioning that may be useful to assess in addition to the child’s more general emotional status. “Pain catastrophizing” refers to a person’s mental rumination, magnification, and helplessness about pain. It is expressed by individuals as worry about both pain and its consequences. There are now measures available of children’s own experience of pain catastrophizing (Crombez et al., 2003) and parental catastrophizing (Goubert, Eccleston, Vervoort, Jordan, & Crombez, 2006). In addition, measures are also available to evaluate children’s pain-related fears that may capture fears pertinent to behavioral avoidance of activity (Huguet, McGrath, & Pardos, 2011; Simons, Sieberg, Carpino, Logan, & Berde, 2011).

Assessment and Measurement of Physical Functioning and Lifestyle Factors

Declines in physical activity and activity restriction are very common among children with chronic pain. This withdrawal from physical activities can occur as a result of the pain, which can then lead to physical de-conditioning, which then further exacerbates the pain problem. This part of the assessment should include a discussion with the child and family regarding the extent to which pain interferes with activities of daily living (e.g., walking, eating), school participation (e.g., attending school, completing homework), physical activities (e.g., dancing, sports), and activities with peers (e.g., social events) and the family (e.g., going to church). Table 4.4 lists interview probes for assessing physical functioning.

Table 4.4 Interview Probes for Assessing Physical Functioning

Domain

Interview Probe

Daily living

  • Tell me about how you are able to walk and get around.

  • Do you eat meals regularly?

  • Are you able to get yourself ready and take care of your body?

School participation

  • How often do you attend school?

  • Do you stay at school for the whole day?

  • What is it like to stay on top of homework?

Physical activities

  • Do you participate in hobbies, like clubs or after-school activities?

  • Do you play sports?

  • Does pain stop you from doing physically active things (like running or doing gym class)?

Activities with peers

  • How often do you spend time with friends?

  • What do you do with friends?

Activities with family

  • Do you spend time with your parents or siblings?

  • What activities do you do with your family?

There are several questionnaire measures that can be used to assess pain-related activity interference, such as the Functional Disability Inventory (FDI; Claar & Walker, 2006; Walker & Greene, 1991) and the Children’s Activity Limitations Interview (CALI; Palermo, Lewandowski, Long, & Burant, 2008). Reducing the negative impact of pain and improving engagement in activities is usually a primary goal of chronic pain management. Therefore a comprehensive understanding of the child’s current level of functioning is invaluable in providing insights into what the potential goals in this area might be.

Other lifestyle factors, especially health-risk behaviors (e.g., diet, nutrition, tobacco use), can be assessed in an age-appropriate manner. Alcohol use, smoking, drug use, and sexual behavior can be covered in the interview with the adolescent patient directly. This part of the interview is best conducted with the young person alone, without the presence of the parent. Because history of childhood abuse has been associated with some types of chronic pain (e.g., Zafar et al., in press), it is important to ask the child directly (and the parent separately) about history of trauma and abuse. Table 4.5 lists sample interview questions concerning lifestyle factors.

Table 4.5 Interview Probes for Assessing Lifestyle Factors

Domain

Interview Probe

Diet/nutrition

  • What meals do you eat each day? How often do you eat?

  • What do you usually eat?

  • What beverages do you drink?

Caffeine

  • Do you ever have drinks with caffeine? How often?

  • When do you have drinks with caffeine?

Alcohol/tobacco use

  • Do you ever drink alcohol? Smoke?

  • When did you have your first drink? Cigarette?

  • How often do you drink? Smoke? How many drinks do you usually have in one day? Cigarettes in one day?

  • Do you usually drink with friends? Smoke with friends? Alone?

Drug use

  • Have you ever tried drugs? Which?

  • Do you still use them? How often?

  • Do feel that you need them, or feel bad when you don’t have them?

Sexual behavior

  • Have you ever had sex?

  • How many partners have you had?

History of trauma/abuse

  • Has anyone ever physically hurt you?

  • Has anyone ever touched you in places where you didn’t want them to?

Assessment and Measurement of Sleep

Because comorbid sleep disturbances are so prevalent in children with chronic pain, it is useful to obtain a detailed history of sleep patterns via a sleep diary, clinical interview, and/or a standardized questionnaire. The clinical interview should focus on obtaining a clear description of the child’s sleep, including their (p. 50) current sleep schedule and sleep habits, as well as information about current medications or treatments that may influence sleep, and any family history of sleep problems. Interview probes in the area of sleep assessment are listed below, in Table 4.6.

Table 4.6 Interview Probes for Assessing Sleep Problems

Domain

Interview Probe

Bedtime/wake-up time

  • What time do you usually go to bed? School nights? Weekends?

  • What time do you usually wake up? School nights? Weekends?

Sleep latency/disturbances

  • Once you’re in bed, how much time does it take you to fall asleep?

  • Do you ever wake up during the night? How many times a night?

  • How long does it take you to get back to sleep?

Sleep quality

  • Do you think that you sleep well?

  • Do you think that you sleep enough each night?

  • Do you feel rested when you wake up?

Daytime sleepiness

  • Do you feel like you have enough energy to get through the day?

  • Do you feel sleepy during the day?

  • Do you ever take naps? How often and how long are they?

Sleep hygiene

  • What do you do before you go to bed?

  • Do you use a computer, cell phone, TV, or iPod before bed?

  • Do you do things on your bed during the day, like homework or talking to friends?

Family history

  • Has anyone in your family ever had sleep problems?

  • What were they, and how were they treated?

Medicines

  • Do you take medicine to help yourself sleep?

  • What do you take and how often?

To supplement the clinical interview, questionnaire measures of children’s sleep may be administered (e.g., the Children’s Sleep Habits Questionnaire; Owens, Spirito, & McGuinn, 2000). Because sleep is a multidimensional domain, there are various questionnaire measures that have been developed to assess particular aspects (e.g., sleep quality) as well as several broad multidimensional measures. For a comprehensive review of available subjective sleep measures for children, see Lewandowski, Toliver-Sokol, and Palermo (2011). (See Chapter 10 for detailed information on sleep assessment and evaluation.)

Assessment and Measurement of Family Relationships

The clinician ought to also gain an understanding of who is considered part of the child’s family (this may include extended family members or nannies living in the home) and how these individuals in the family generally get along. For children who come from divorced or separated families, one needs to explore living and custody arrangements, and the role of any stepparents and siblings. Several areas in the assessment of family relationships include: 1) overall family function and level of conflict or dysfunction; 2) how different family members respond to pain complaints (e.g., attention to pain, resentment or hostility); 3) an understanding (p. 51) of who is responsible for the child’s pain management (i.e., what things are the child’s responsibility vs. the parent’s responsibility); and 4) an understanding of the impact of the child’s pain problem on the family (e.g., parental distress, changes in the marital relationship). Table 4.7 lists interview probes concerning family relationships.

Table 4.7 Interview Probes for Assessing Family Relationships

Domain

Interview Probe

Overall family function

  • How do you and your family usually get along?

  • Are there ever arguments or fights in your family? What are they about?

  • How often do you spend time with your parents or siblings?

  • What do you usually talk about?

  • What things do you do together?

Responses to pain complaints

  • When you have pain, do you tell people in your family? Whom do you tell, and what do they say?

  • What happens when you tell them about your pain?

Pain management

  • Does someone in your family check with you to see if you have pain? How often do they do this?

  • When you have pain, what do you do?

  • When you have pain, what does your mom or dad do?

  • Do they check later to see if the pain is better or went away?

Impact of pain problem (for parents)

  • How have things in your family changed since your child started having pain?

  • Has this changed your daily schedule or your spouse’s?

  • Who is usually responsible for managing your child’s pain complaints, you or your spouse?

  • Do you have any concerns about your communication with your child or with your spouse?

  • Has dealing with the pain problem affected your relationship with your spouse?

Various questionnaire measures are available to supplement the clinical interview, including measures of parental responses to pain, such as the Adult Responses to Children’s Symptoms (Walker, Levy, & Whitehead, 2006), and general measures of family functioning, such as the Family Assessment Device (Miller, Epstein, Bishop, & Keitner, 1985). Conversely, parenting a child with chronic pain can be stressful for the entire family. Gaining an understanding of the impact (e.g., stress, worry) of the child’s pain on caregivers and other family members is also important.

Assessment and Measurement of School Functioning and Peer Relationships

Pain frequently also interferes with children’s school functioning and their peer relationships. In the area of school functioning, the clinical interview covers (p. 52) current and past school attendance (particularly the number of missed days as a result of pain), academic functioning (including grades and performance, learning and behavior problems, and any prior psycho-educational testing), and school-related stressors. It can be helpful to ask the family to bring in a copy of a recent report card, and in some cases, obtain consent from the family to contact the teacher directly for input. Finding out how the teacher and school environment responds when the child has pain is useful as well.

In regard to assessing peer relationships, the clinician can ask patients whether they have friends they spend time with outside of school (and if so, how many), and the kinds of activities they like to engage in with their friends. Romantic relationships and time spent with partners can also be assessed. Discuss with patients whether their friends know about their chronic pain and how their peers respond. Knowing how well supported they are or how much attention is obtained from their friends can also be informative. Table 4.8 lists key interview questions in the area of school functioning and peer relationships. (p. 53)

Table 4.8 Interview Probes for Assessing School Functioning and Peer Relationships

Domain

Interview Probe

School attendance

  • How often do you attend school?

  • Do you usually arrive at school on time and stay for the whole day?

Academic functioning

  • What grades do you usually get in school?

  • Are you able to concentrate in class?

  • Do you finish assignments on time?

  • Have you ever been tested for a learning disability?

School-related stressors

  • Are there classes that you enjoy more than others?

  • How do you feel about your teachers?

  • Are there parts of school that you don’t look forward to?

  • Do you get bullied at school?

Peer relationships

  • Do you have close friends? How many? How long have you been friends?

  • How often do you spend time together and what do you do?

  • How do you get along with your friends?

Romantic relationships

  • Do you have a boyfriend/girlfriend? How long have you been dating?

  • How often do you see each other?

  • Have you had boyfriends/girlfriends before?

Peer responses to pain

  • Do your friends know about your pain problem?

  • How did you tell them about it and how did they respond?

  • Do you talk about your pain with friends?

Behavioral Observations

In keeping with a mental-status exam, the clinician has opportunity to observe and describe the patient and family’s current state of mind during the assessment, taking into account their appearance, attitude, behavior, mood and affect, speech, thought processes, thought content, perception, cognition, insight, and judgement. In particular, the clinical interview provides a context for careful observation of the child and parent. If the child experiences pain during the evaluation, pay attention to how the child reacts and how the parent(s) responds. Discuss these events as they occur (e.g., “When your child just had that pain, is that how you would normally react at home?”). Make a note of any unusual regressive behaviors that are demonstrated during the interview, such as a teenager sitting on the parent’s lap, that might provide further insight into the parent–child relationship. It can be helpful to close the clinical interview with a general question such as: “Is there anything else about you and your family that would be important for (p. 54) us to know about?” which provides the opportunity for the patient and family to share any final relevant details.

Use of Questionnaires

As mentioned above, many different questionnaires are available to supplement information gathered from the clinical interview with patients and their families, and their use will depend on the clinician’s preferences and the treatment setting. In an interdisciplinary pain clinic, the use of questionnaires is typically a team decision. However, there is a general movement in medicine toward measurement-based care, meaning that standardized assessments are conducted throughout the patient’s care to understand their response to interventions. While there is a general consensus about important domains to assess via interviews or questionnaires, there is no gold standard questionnaire battery consistently used by (p. 55) psychologists who work with children with chronic pain. Table 4.9 provides a summary of some of the most commonly used measures in psychosocial assessment of children and adolescents with chronic pain.

Table 4.9 Commonly Used Psychosocial Assessment Measures for Children with Chronic Pain

Assessment Domain

Questionnaire

Pain intensity

  • Faces Pain Scale-Revised (FPS-R)

  • Visual Analogue Scale (VAS)

  • Numeric Rating Scale (NRS)

Broad-based measures

  • Pediatric Quality of Life Inventory (PedsQL)

  • Bath Adolescent Pain Questionnaire (BAPQ)

Emotional functioning

  • Children’s Depression Inventory (CDI)

  • Revised Child Anxiety and Depression Scale (RCADS)

  • Behavior Assessment Scale for Children (BASC)

  • Fear of Pain Questionnaire (FOPQ)

  • Pain Catastrophizing Scale for Children (PCS-C)

Physical functioning

  • Functional Disability Inventory (FDI)

  • Child Activity Limitations Interview (CALI)

Sleep

  • Children’s Sleep Habits Questionnaire (CSHQ)

  • Adolescent Sleep Wake Scale (ASWS)

  • Adolescent Sleep Hygiene Scale (ASHS)

Parental responses/Family function

  • Adult Responses to Children’s Symptoms (ARCS)

  • Family Assessment Device (FAD)

Many interdisciplinary pain clinics have developed their own intake questionnaire batteries, which may include a combination of standardized questionnaires and non-standardized questions. The specific questionnaires selected for inclusion in the assessment battery will differ depending on the nature of the treatment setting, the age of the patient, and the type of pain, as well as more practical reasons such as cost (some questionnaires are available free of charge, while others are copyrighted measures that must be purchased) and ease of administration and scoring. Important considerations are not only which questionnaires to include in the assessment battery, but also the timing of when to administer these questionnaires. It is often helpful to have the information from the questionnaires available prior to conducting the clinical interview so that questions and discussion can be focused on areas of concern evident from the questionnaire responses. If families are expected to complete the questionnaire battery prior to the clinical interview, explain to the families the role of these questionnaires in informing the pain assessment. In addition, it is helpful to integrate and refer to responses made by the child and family on the questionnaires when conducting the clinical interview (e.g., “On the questionnaires you completed, I noticed that your pain seems to be (p. 56) particularly problematic in interfering with your ability to concentrate at school. Tell me more about that”). However, a drawback of asking families to complete questionnaires at home is that the timing and conditions cannot be monitored (e.g., the parent may assist the child in completing items). Therefore, a balance considering the advantages and disadvantages may lead to completion of certain questionnaires in the home setting prior to the clinic appointment, and perhaps reserving other questionnaires for administration in person in the clinic. The clinical interview can often be structured so that there is time spent alone with the child; this can provide an ideal window of opportunity for the completion of questionnaires by parents in the waiting area.

Use of Pain Diaries

There is some controversy among clinicians about the potential harm versus benefit of using pain diaries in clinical practice. On one hand, the pain diary (providing information on a day-to-day basis regarding when pain occurred, how long it lasted, what was happening just before and after the pain, what the child did to cope with the pain) can be a useful component of the pain assessment and can be a way to track progress and evaluate the child’s response to specific therapeutic interventions over the course of treatment. On the other hand, monitoring pain continuously may draw more attention to the pain, especially in families where there is already a high degree of vigilance to pain. For this reason, using pain diaries cannot be recommended in every case. It is up to the individual clinician to decide whether the assessment and treatment of an individual child with pain could be enhanced by use of a pain diary at least for short-term assessment (i.e., one to two weeks). It is not uncommon for parents to bring in their own records to the initial visit, which may include pain diaries and logs. This information should be reviewed with the parent, taking care to clearly communicate respect for their efforts even if the clinician decides that further monitoring will not be helpful.

There is no one universally agreed upon format for a pain diary; the review by Cohen and colleagues (2008) identified several different types of pain diaries that have shown good psychometric support. The pain diary typically consists of a table in which each pain episode during the reporting period is noted, as well as the duration and intensity of the pain, and any events that may have preceded or followed the pain. The diary can be modified as needed for children with persistent (constant) pain, or where there are particular additional issues to monitor. For example, if as part of the clinical interview or psychosocial questionnaire assessment the clinician became concerned that disrupted sleep may be negatively influencing the child’s pain, and treatment goals are developed around sleep, sleep-related variables (e.g., bedtime and wakeup time, number of awakenings throughout the night) could be added to the diary. Careful review of the pain diary with patients during the assessment may uncover previously undetected (p. 57) patterns to the pain or help the clinician understand the patient’s response to the interventions. There has been growing interest and a burgeoning evidence-base in support of the use of electronic pain diaries (e.g., Stinson, 2009). However, to date these electronic diaries have been primarily utilized in research settings and may be cost-prohibitive to adopt into routine clinical practice. Appendix 1 shows an example of a pain diary.

Integrating the Assessment Results

As described above, the psychosocial assessment and evaluation of a child with chronic pain covers numerous areas and is shaped by information obtained using a variety of assessment methods. It is not uncommon for information provided by different people (e.g., mother, father, child) to vary considerably. For example, it is common for children to dramatically underreport the extent to which their pain is interfering in their life, compared to their parents’ reports. In these cases, clinicians again should use their best judgement in deciding how much weight should be given to information provided by the different people in the assessment. Moreover, sometimes additional information can be sought from other sources (e.g., the teacher). The clinician must then integrate the various data in order to arrive at a biopsychosocial conceptualization of the child’s pain that identifies clear targets for intervention.

Assessment and evaluation of a child with chronic pain is an ongoing process during treatment that can assist in refining treatment goals, measuring progress, and evaluating the effectiveness of the various cognitive and behavioral interventions. Developing a shared treatment plan and specific goals is an important task of the initial visit that ideally emanates from the assessment results. Communicating assessment results to referring providers is best accomplished by focusing on behavioral goals rather than diagnoses. Very rarely are treatment plans developed around a mental health diagnosis for children and adolescents with chronic pain. Rather, the goals that are identified around pain management and additional areas such as physical functioning, emotional functioning, coping skills, and family function are behavioral, with measurable behavioral outcomes.

Tracking Progress

There are many different ways clinicians can track progress with cognitive-behavioral treatment of pediatric chronic pain. Recommendations have been made by experts convening at a consensus conference, the Pediatric Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (Ped-IMMPACT) concerning outcome domains that are important to assess in clinical trials with children and adolescents who have chronic or recurrent pain (McGrath et al., 2008). Eight domains were recommended: pain intensity, physical functioning, symptoms and (p. 58) adverse events, global satisfaction with treatment, emotional functioning, role functioning, sleep, and economic factors. Not all areas will be pertinent to each patient. However, as described earlier in the chapter, there are currently available measures of many of these domains that may supplement information obtained from the child in regard to attaining treatment goals.

For example, if the treatment goal is to reduce pain frequency and the interference of pain in daily activities, one could ask the child to report on pain frequency and the degree of pain-related interference in the child’s life (e.g., the number of hours or days of school attendance, or completion of the Functional Disability Inventory) at each visit. Often a specific goal is to expand the child’s repertoire of coping skills, in which case the outcome assessed could be the child’s use and perceived efficacy of different cognitive-behavioral strategies introduced in-session. These assessments can be accomplished either by having children provide a global rating pertaining to each goal (e.g., “How often did you have pain in the past two weeks?”) or by having them complete the same brief questionnaire at the beginning of each session (e.g., pain questionnaire, activity limitations questionnaire). The specific outcomes monitored will depend on each child and should map onto the agreed treatment goals.

It is often helpful to simultaneously track progress in more than one area. Regardless of the specific outcomes tracked, providing objective information on progress is invaluable for the child and parents (e.g., “When you first started coming to see me, your stomachaches were happening every day, and were about an eight out of ten [intensity]. Your goal was to have fewer stomachaches and to have them hurt less when you did have them. Now they are happening only once per week, and are now a three out of ten”; or, “Even though you are still having headaches every day, you made great progress toward your goal of being in school more and learning to use more coping skills. Now you’ve increased the number of hours you can be at school from one to three, and you are using relaxation strategies that help the headaches go away more quickly”). The information provided by tracking progress can steer the focus of sessions as treatment progresses, or new issues may be identified that suggest further intervention. For example, tracking the progress of a patient with pain and presumed pain-related mood disturbance could reveal persisting mood difficulties that might require more intensive intervention despite improvements in the patients’ pain. For an example of using regular reassessment of patient’s functioning using a standardized assessment tool (the Functional Disability Inventory), see the article by Lynch-Jordan and colleagues (2010) who accomplished this at their interdisciplinary pain clinic at Cincinnati Children’s Hospital.

Summary and Conclusions

Assessment is essential for understanding the child’s and family’s experience of pain, to uncover targets for intervention, and identify a baseline against which (p. 59) progress can be measured. Thorough assessment can be rapport-building—enhancing the family’s sense of being understood, believed, and hopeful about treatment. Fortunately, many useful measures of pain and pain impact are now available for the clinician to consider using in practice. Assessment is best viewed as, not confined to the first visit, but a continual process that allows the clinician to understand treatment response and thereby tailor treatment efforts.