Pediatric Pain Measurement

Psychological and Functional Assessment Tools in Pediatric Pain

By Laura Wright, PhD and Rachael Coakley, PhD
Boston Children’s Hospital / Harvard Medical School

Comprehensive assessment of pediatric pain is imperative for the advancement of theory-driven research, clinical intervention development, evaluation of response to treatment, and integration of evidence-based practice. Over the past several years, there has been a heightened focus on improving and refining assessment approaches to increase the rigor of clinical trials and more effectively implement empirically-supported treatments. Towards this goal, The Pediatric Initiative on Methods, Measurement, and Pain Assessment in Clinic Trials [PedIMMPACT(1)] was developed to strengthen the integrity of clinical trials and foundation for evidence-based treatment in pediatric acute and chronic pain. This initiative recommended primary outcome domains and measures based on the integration of available literature and consensus among a group of international experts in academic research, government funding/regulatory agencies, and the pharmaceutic industry.

Although measurement development is an ongoing endeavor in the field of pediatric pain, this article reviews current empirically-supported and well-established measures that assess functional and psychological domains primarily impacted by pain. All measures presented in this review are summarized in Table 1. 

Pain-related disability/Risk
Pain predominantly interferes with engagement in daily activities and physical functioning. Indeed, several large epidemiological studies have documented the disabling impact of pain on youth (2,3). As a result, it has been recommended to assess children’s perceptions of activity limitations and degree of disability in pediatric pain clinical trials (1). As evidence supports a recovery trajectory that typically includes measurable improvements in functioning prior to a patient’s report of decreased pain, it is especially important to evaluate changes in disability over the course of treatment.

The Functional Disability Inventory [FDI (4)] is a highly utilized 15-item measure that asks children and adolescents to rate their ability to engage in a range of activities of everyday living (i.e., physical, school, social, routine, and recreational domains). Although initially developed for chronic abdominal pain (5), the FDI has been validated across a broad spectrum of chronic pain conditions and was recommended to assess physical functioning outcomes by the PedIMMPACT group (1). In addition to the extensive use of the FDI as a primary outcome in clinical trials, it has also been integrated as a tracking tool to assess patient outcomes and response to treatment in outpatient multidisciplinary pain clinics (6). A multicenter study further strengthened the clinical and research utility of the FDI by developing clinical reference points that capture distinct classifications of disability (No/Minimal, Moderate, Severe) (7). This effort has unquestionably improved the utility of this measure in both research and clinical settings.

Despite the widespread use of the FDI, the 21-item Child Activity Limitations Interview [CALI-21] was developed to address a few of the measure’s limitations (8,9). Most notably, the FDI includes some items that are less applicable to chronic pain populations (e.g., running the length of a football field) and fails to differentiate categories of activity limitations. The CALI-21 was developed and validated among diverse clinical samples of youth with mixed chronic pain conditions and uniquely generates scores for active (e.g., participating in gym class) and routine (e.g., reading, eating regular meals) activity subscales. More recently, a brief 9-item version of the measure (CALI-9) was derived for child self-report and parent proxy report that maintained the two-factor structure (Active and Routine domains) and provided more interpretable scoring (10). Despite further support and validation for this measure, one significant limitation is the absence of a classification nomenclature (i.e., mild, moderate, severe disability) comparable to what has been developed for the FDI that can help to identify severity of symptoms. 

The Pediatric Pain Screening Tool [PPST(12)] was developed with the express purpose of helping to efficiently screen level of pain- and disability-related risk in youth. The intent of this measure is to facilitate clinical decision-making by enabling providers to categorize degree of risk based on clinical cut-off scores. This type of early risk categorization may help to more succinctly match patients with treatment (e.g., low-risk patients requiring psychoeducation and outpatient physical therapy, high-risk requiring intensive day treatment multidisciplinary approaches). This nine-item measure was recently validated in mixed chronic pain and headache samples (12,13).

Pain-related attitudes, emotions, and cognitions
Fear-avoidance models from the adult pain literature have been applied to pediatric chronic pain to illustrate how cognitive-affective processes contribute to and maintain the pain-disability cycle (14,15). Given the impact these factors have on functional outcomes and treatment response, assessing attitudes, emotions, and cognitions in the context of pain is imperative. A recent systematic review and meta-analysis described existing measures evaluating pain anxiety, fear of pain, and pain catastrophizing in youth, identified well-established measures, and evaluated their construct validity (16). Most measures supported the fear-avoidance model of pain by demonstrating consistent correlations with pain intensity, disability, generalized anxiety, and depression. 

Two primary overlapping constructs within this area are fear of pain and pain catastrophizing. Fear of pain is defined as distressing emotional reactions and maladaptive beliefs individuals uphold in the threat of imminent and future pain (17). The Fear of Pain Questionnaire for Children [FOPQ-C (18)] contains 24 items evaluating pain-related cognitions, behavioral responses, and physiological reactions across two distinct fear and avoidance subscales. Although reductions in pain-related fear are related to decreased disability and depressive symptoms during treatment, pain-related fear represents a risk factor for poorer treatment response (19). Pain catastrophizing is comprised of rumination, magnification, and helplessness and generally refers to exaggerated cognitive appraisals of pain. The Pain Catastrophizing Scale for Children [PCS-C (20)] was adapted from the Pain Catastrophizing Scale for adult chronic pain (21) and has been consistently used in international research. Furthermore, clinical reference points have been established for the PCS-C to facilitate clinical assessment and treatment monitoring (22).

As outlined by Fisher and colleagues (16), prominent measurement limitations still need to be addressed. Firstly, available cognitive-affective assessment tools for pediatric pain share a high degree of content overlap, which limits their distinctive conceptual foundations. Future research should prioritize evaluating additional psychometric properties (test-retest reliability, discriminant validity, factor analysis) to determine sensitivity to change over the course of treatment. Finally, these measures were primarily adapted from adult tools and may fail to capture the full extent of emotions, cognitions, and behavioral responses directly observed in children. Nevertheless, fear-based constructs remain critical targets to assess theoretically and in the context of psychological treatment.  

Emotional functioning
Given the toll pain exerts on daily living, it is common for youth with persistent pain to experience symptoms of generalized anxiety and depression (23,24). The Children’s Depression Inventory [CDI-2 (25)] was derived from the Beck Depression Inventory (BDI) and provides a total score of depressive symptoms in addition to five subscales: Negative Mood, Ineffectiveness, Anhedonia, Negative Self-Esteem, and Interpersonal Problems. Compared to children with other chronic illnesses, youth with ongoing pain report higher scores on the CDI (26). The factor structure and validity of the CDI has been supported among a multisite pediatric chronic pain sample; however, it has been recommended to interpret scores with caution given the overlap between somatic symptoms resulting from pain and those associated with depression (27). The Center for Epidemiological Studies-Depression Children (CES-DC) scale is another established measure that assesses depressive symptoms in children and adolescents (28–30). Scores above 14 are indicative of depressive symptoms and a cut-off score of 21 has been used to diagnose major depression. This measure has maintained its valid psychometric properties in pediatric pain populations (31,32).    

Regarding anxiety assessments, the Revised Children’s Manifest Anxiety Scale [RCMAS-2 (33)] is a self-report measure that provides a total anxiety symptom score in addition to four subscale scores for physiological anxiety, worry, social anxiety, and defensiveness. The Screen for Child Anxiety Related Disorders - Child Report (SCARED-C) is a common screening tool for clinically elevated anxiety symptoms in youth ages 8 and above based on the DSM-IV-TR (34,35). Respondents rate the frequency of their anxiety symptoms over the past three months with total scores of at least 25 reflecting clinically significant anxiety. The SCARED has been validated in a pediatric pain sample (36) and more recently used among youth with functional abdominal pain (37).

Finally, there are two measures that capture both anxiety and depressive symptomatology. The Bath Adolescent Pain Questionnaire (BAPQ) was developed to comprehensively assess the impact of chronic pain on youth (38) and includes seven subscales, two of which evaluate depression and general anxiety. The Revised Child Anxiety and Depression Scale (RCADS) corresponds to several disorders in the DSM-IV and includes a Total Anxiety Scale and Total Internalizing Scale in addition to the following subscales: separation anxiety disorder, social phobia, generalized anxiety disorder, panic disorder, obsessive compulsive disorder, and major depressive disorder (39). T-scores are calculated based on the child’s gender and grade in school and scores of 65 and above are suggestive of clinically elevated symptoms. The RCADS has previously been used in pediatric pain samples to capture emotional functioning (40,41). Additionally, the reliability and validity of an abbreviated version of the RCADS, RCADS-25, has been supported (42). Measures reviewed in this section that generate raw scores and T-scores capturing clinical severity are particularly valuable for research and clinical endeavors.          

Patient-Reported Outcomes Measurement Information System (PROMIS)
The Patient Reported Outcomes Measurement Information System (PROMIS) initiative directed by the National Institutes of Health has aimed to develop and validate precise, standardized patient-reported outcomes among healthy and disease-specific populations for research and clinical care purposes. Rigorous methodology, including item response theory, was utilized for measurement development to minimize historical measurement error and limitations. Preliminary evidence has supported the construct validity and responsiveness to change of seven PROMIS measures developed for pediatric chronic pain (Pain Interference, Fatigue, Anxiety, Depression, Mobility, Upper Extremity Function, and Peer Relationships) when administered within an outpatient chronic pain clinic and intensive amplified pain day-treatment program (43). However, PROMIS measures did not demonstrate as much longitudinal improvement when compared to “legacy” (i.e., gold standard) measures. Another recent study outlined the psychometric development and validation of the PROMIS pediatric pain behavior short form (44). Of note, these brief, unidimensional screeners appear more advantageous for clinical research, but fall short in comprehensively assessing multidimensional constructs used for diagnostic purposes in clinical care (e.g., depression severity). Ongoing validation efforts with larger, diverse pediatric pain samples are warranted.

Parent Report Measures
While this article has predominantly focused on youth self-report measures, the influence of parent attitudes, emotions, cognitions, and behavioral responses cannot be overstated. Given the developmental context of pediatric pain, parental and family factors not only shape the chronic pain experience, but also contribute to dysfunction or adaptation (45–47). As a result, several parent measures have been developed to complement validated child questionnaires. For instance, the parent version of the Pain Catastrophizing Scale [PCS-P (48)] evaluates parental catastrophic thinking about their child’s pain and the Parent Fear of Pain Questionnaire [PFOPQ (49)] assesses parents’ fears and avoidance behaviors related to their child’s pain. Another widely used measure is the Adult Responses to Children’s Symptoms [ARCS (50)] that assesses parent behaviors and response styles. As overly protective parenting is most detrimental in response to children’s pain (51), the Protect subscale is frequently used, well-established, and sensitive to change in this population.

Given the socioecological context of pediatric pain, future work in ongoing measure development will be critical to capture the dynamic processes at the individual, parent/family, social, and environmental levels over time.

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