Pediatric Measures of Pain The Pain Behavior Observation Method, Pain Coping Questionnaire (PCQ), and Pediatric Pain Questionnaire (PPQ)

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1 Arthritis & Rheumatism (Arthritis Care & Research) Vol. 49, No. 5S, October 15, 2003, pp S90 S95 DOI /art , American College of Rheumatology MEASURES OF PAIN Pediatric Measures of Pain The Pain Behavior Observation Method, Pain Coping Questionnaire (PCQ), and Pediatric Pain Questionnaire (PPQ) Michael A. Rapoff PAIN BEHAVIOR OBSERVATION METHOD General Description Purpose. This is the only observational pain behavior measure that has been validated with children who have juvenile rheumatoid arthritis (JRA). This measure would be particularly useful for assessing pain in children who have difficulty with self-report measures (younger children or those with cognitive limitations) and to document children s abilities to perform activities of daily living (1). Content. The final version retained 6 pain behaviors (guarding, bracing, active rubbing, rigidity, single flexing, and multiple flexing) that are coded by observers viewing a videotape of a 10-minute session during which children perform a series of behaviors including sitting, walking, standing, and reclining in a standardized sequence (two 1-minute sitting periods, two 1-minute standing periods, two 1-minute reclining periods, and four 1-minute walking periods). Pain behaviors are coded using an interval sampling method, for a total of twenty 30-second intervals (with a 20- second observation phase followed by a 10-second recording phase for each 30-second interval). As with all observational measures, this measure requires fairly extensive training and assessment of interobserver reliability. Supported by a grant from AstraZeneca. Michael A. Rapoff, PhD: University of Kansas Medical Center, Kansas City. Address correspondence to Michael A. Rapoff, PhD, Chief, Behavioral Sciences, Department of Pediatrics, University of Kansas Medical Center, 3901 Rainbow Boulevard, Kansas City, KS mrapoff@kumc.edu. Submitted for publication April 23, 2003; accepted April 24, Developer/contact information. Theresa M. Jaworski, PhD, 5500 Main Street, Suite 207, Williamsville, NY Versions. English. Number of items in scale. Six pain behaviors retained in the final version: guarding, bracing, active rubbing, rigidity, single flexing, and multiple flexing. Subscales. Frequency of 6 individual behaviors and total pain behavior frequency. Populations. Developmental/target. Validated for children and adolescents, 6 17 years. Other uses. Could be used for children younger than 6 years. Administration Method. Observer views a videotape of a 10- minute session during which children perform a series of behaviors including sitting, walking, standing, and reclining in a standardized sequence (two 1-minute sitting periods, two 1-minute standing periods, two 1-minute reclining periods, and four 1-minute walking periods). Pain behaviors are coded using an interval-sampling method, for a total of twenty 30-second intervals (with a 20- second observation phase followed by a 10-second recording phase for each 30-second interval). Behaviors observed during any 20-second observation phase are only coded once, regardless of the number of time the behaviors were observed. Training. Extensive. Pain behavior coding definitions and training videos are used to train observers. Time to complete. Approximately 10 minutes once observers are trained. S90

2 Pediatric Pain S91 Equipment needed. Coding sheet and video cassette recorder. Cost/availability. Nominal; cost of videotapes and mailing of forms and tapes. Scoring Responses. Scale. Frequency of 6 pain behaviors (guarding, bracing, active rubbing, rigidity, single flexing, and multiple flexing). Total pain behavior score. Score range. The range is 0 20 for each pain behavior, for total pain behavior score. Interpretation of scores. Higher scores represent greater number of pain behaviors. Method of scoring. Frequency of observed pain behaviors across the twenty 30-second intervals. Time to score minutes. Training to score. Extensive. Training to interpret. Minimal. Norms available. 30 children/adolescents, 6 to 17 years with JRA (23 were White; 22 were female; mean months since diagnosis was 49). Psychometric Information Reliability. Internal consistency. Not applicable. Test-retest/stability. Not available. Interrater. Percentage overall agreement is 90 95%. Percentage effective agreement (occurrences only) is 63 87%. Kappa coefficients 0.53 to Validity. Content/domain/face. Correlations between pairs of individual pain behaviors generally not significant (amount of variance shared by all possible pairs of behaviors ranged from 13% to 25%). Construct. Total pain behavior score significantly correlated with functional disability (r 0.64, P ), but not significantly correlated with selfreports of depression. Concurrent. Total pain behavior score significantly correlated with children and parents visual analog scale ratings (VAS) of pain (r 0.50, P and r 0.48, P 0.007, respectively). Responsiveness. Not available. Comments and Critique This is a reliable and valid measure of pain behaviors suitable for children and adolescents with JRA of all ages. It does require fairly extensive training (and possibly periodic retraining) of observers to established standards of interobserver reliability. There is only one published study to date with 30 subjects. More studies are needed to further establish the reliability and validity of this measure and to obtain more normative data. Clinically, this measure may prove to be useful for younger children or those with cognitive deficits who cannot utilize self-report measures of pain, such as the visual analog scale (VAS). It could also help to document functional limitations and supplement self-report measures. However, this measure (and any other observational measure) should not be considered a substitute for selfreport measures of pain, which remain the gold standard for assessing pain in children. References 1. (Original) Jaworski TM, Bradley LA, Heck LW, Roca A, Alarcón GS. Development of an observation method for assessing pain behaviors in children with juvenile rheumatoid arthritis. Arthritis Rheum 1995; 38: PAIN COPING QUESTIONNAIRE General Description Purpose. To assess how children and adolescents cope with pain (1). Content. Children or adolescents are asked to rate how often they say, do, or think some things people do when they hurt or are in pain (e.g., Ask questions about the pain. ) Developer/contact information. Graham J. Reid, PhD, CPsych, Assistant Professor Bill and Anne Brock Family Professor in Child Health Psychology & Family Medicine, University of Western Ontario, SSC 7310, London, Ontario N6A 5C2, Canada. E- mail: greid@uwo.ca. Versions. English, Dutch. Number of items. There are 39 items. Subscales. The questionnaire yields 8 subscales (information seeking, problem solving, seeking social support, positive self-statements, behavioral distraction, cognitive distraction, externalizing, and

3 S92 Rapoff internalizing/catastrophizing) and 3 higher-order scales (approach, distraction, and emotion-focused avoidance). Populations. Developmental/target. Children and Adolescents (8 18 years). Other uses. College undergraduates (in the initial development). Administration Method. Self-report. Reading level estimated at Grade 3 (Flesch-Kincaid index). Difficulty. Appropriate for children as young as 8 years of age. Training. None. Time to complete. 10 to 15 minutes. Equipment needed. None. Cost/availability. No charge. Available from Dr. Reid. Scoring Responses. Scale. 5-point rating scale for items (1 never, 2 hardly ever, 3 sometimes, 4 often, or 5 very often). Sum subscale items and compute mean. Score range. Range is 1 5. Interpretation of scores. Higher scores indicate greater use of coping strategy. Method of scoring. Items on subscales and higher-order scales summed and then averaged. Time to score. Under 5 minutes. Training to score. Minimal. Training to interpret. None. Norms available. Healthy children and adolescents; children and adolescents with recurrent pain (headaches or arthritis). Psychometric Information Reliability. Internal consistency. Eight subscales, ranged from 0.78 to Three higher-order scales, ranged from 0.85 to Test-retest/stability. Not available. Interrater. Correlations between child and parent ratings were moderate (r ; median 0.33). Validity. Content. Initial item selection based on 10 raters (students and faculty conducting pain and coping research) being given 158 items in random order and asked to sort each item into one of 8 conceptual categories. Also, ratings of each item s wording clarity were obtained. Construct. Factor analysis confirmed 8 hypothesized subscales and three higher-order scales. Concurrent. Significant correlations (in the expected direction) between scale scores and pain intensity, pain controllability, coping effectiveness, emotional distress, and functional disability. Responsiveness. Not available. Comments and Critique This is one of the very few comprehensive questionnaires available to measure pain coping strategies among children and adolescents. It has been validated with healthy samples and with children and adolescents with recurrent pain, including headaches and arthritis. Internal consistency reliability is acceptable for research purposes. This instrument fills a significant gap in the pediatric pain literature and can be used to examine the effects of different types of coping strategies on pain, emotional distress, and functional outcomes. It can also be used in intervention studies to document changes in coping strategies and concomitant changes in pain and functional outcomes. The Pain Coping Questionnaire (PCQ) needs further validation by other investigators and with other samples of children and adolescents with different types of recurrent pain. The clinical utility of the PCQ needs further elaboration but presumably could be used to determine what type of effective coping strategies are present or absent from the repertoire of specific patients to guide interventions. Reference 1. (Original) Reid GJ, Gilbert CA, McGrath PJ. The pain coping questionnaire: preliminary validation. Pain 1998;76: Additional References Reid GJ, Chambers CT, McGrath PJ, Finley GA. Coping with pain and surgery: children s and parents perspectives. Int J Behav Med 1997;4:

4 Pediatric Pain S93 Bedard GBV, Reid GJ, McGrath PJ, Chambers CT. Coping and self-medication among a community sample of junior high students. Pain Res Man 1997;3: Unruh AM, Ritchie J, Merskey H. Does gender affect appraisal of pain and pain coping strategies? Clin J Pain 1999;15: PEDIATRIC PAIN QUESTIONNAIRE General Description Purpose. To assess pain intensity and location and the sensory, affective, and evaluative qualities of pain, appropriate for children and adolescents (1). Content. VAS describing pain intensity, body outline to describe location of pain, and words describing pain to assess qualities of pain. Developer/contact information. James W. Varni, PhD. Website: Versions. Child, Adolescent, and Parent Versions. Number of items. See subscales. Subscales. VAS for present and worst pain; and body outline (location and severity of pain) on all versions. Populations. Developmental/target. Children and adolescents with juvenile rheumatoid arthritis (5 16 years). Other uses. Children, adolescents, and young adults with sickle cell disease (5 25 years). Administration Method. Self-rated questionnaire or interview format. VAS is a 10-cm horizontal line, anchored with descriptors not hurting or no pain and hurting a whole lot or severe pain and person marks a vertical line on the VAS for present pain and the VAS for worst pain for the previous week. Body outline is gender-neutral front and back whole body drawing and 4 boxes underneath descriptive categories of pain intensity ( none, mild, moderate, severe ). Given a standard set of 8 colors, person selects colors to match pain intensities (coloring the 4 boxes with selected colors) and then colors in the body outline with the selected color/intensity match. Children younger than 7 years will usually need to be read instructions for completing the VAS and body outline. Training. Minimal. Time to complete. Child version, approximately minutes; Adolescent and parent versions, approximately minutes. Equipment needed. Standard box of 8 crayons. Cost/availability. Free for unfunded research. See website for ordering information and current costs ( Scoring Responses. Scale. Pain intensity (VAS). Number of body sites with pain and mean pain intensity across sites with pain (body outline). Score range. VAS, 0 (no pain) to 100 (severe pain). Body outline intensity, 0 (none) to 3 (severe). Interpretation of scores. Higher scores represent more severe or more intense pain. Method of scoring. Use standard ruler to identify mark on VAS to score intensity. Overhead template used for body outline (number of sites can be individualized by the investigator or clinician); sum the number of sites with pain and compute mean pain intensity of sites with pain. Time to score. Under 5 minutes. Training to score. Minimal. Training to interpret. Minimal. Norms available. Mainly for children and adolescents with juvenile rheumatoid arthritis. Psychometric Information Reliability. Internal consistency. Not applicable. Test-retest/stability. 6-month moderate stability. Interrater. Significant and positive intercorrelations between patient, parent, and physician VAS pain intensity ratings. High agreement between coders of pain location on the body outline. Validity. Content. VAS and body outline are standard components of pediatric pain questionnaires.

5 S94 Rapoff Construct. VAS pain ratings significantly and positively correlated with disease activity, functional limitations, anxiety, and depression. Responsiveness. Used in pain treatment studies to document pre- to post-treatment changes in pain intensity. Comments and Critique This is the most widely used and validated comprehensive pain questionnaire for children and adolescents with rheumatic disease. The body outline is particularly useful clinically, as patients can communicate the location and severity of pain in an enjoyable fashion. Adolescents also prefer to color in the body outline (on the original version, they wrote in numbers to rate pain intensity by location). The VAS is now available in a plastic mechanical (slide-rule type) format. There are other elements in the original version of the Pediatric Pain Questionnaire (PPQ) that are most useful for research purposes (such as pain descriptors self-generated and chosen from a list of sensory, affective, and evaluative words). In general, the PPQ should be useful for assessing children and adolescents with chronic or recurrent pain (e.g., as has been done with patients with sickle-cell disease related pain). There is currently no comprehensive manual, with detailed instructions for administering and scoring the PPQ. Reference 1. (Original) Varni JW, Thompson KL, Hanson V. The Varni/Thompson Pediatric Pain Questionnaire. I. Chronic musculoskeletal pain in juvenile rheumatoid arthritis. Pain 1987;28: Additional References Benestad B, Vinje O, Veierod MB, Vandvik. Quantitative and qualitative assessments of pain in children with juvenile chronic arthritis based on the Norwegian version of the Pediatric Pain Questionnaire. Scand J Rheumatol 1996;25: Gragg RA, Rapoff MA, Danovsky MB, Lindsley CB, Varni JW, Waldron SA, et al. Assessing chronic musculoskeletal pain associated with rheumatic disease: further validation of the Pediatric Pain Questionnaire. J Pediatr Psychol 1996;21: Graumlich SE, Powers SW, Byars KC, Schwarber LA, Mitchell MJ, Kalinyak KA. Multidimensional assessment of pain in pediatric sickle cell disease. J Pediatr Psychol 2001;26: Thompson KL, Varni JW, Hanson V. Comprehensive assessment of pain in juvenile rheumatoid arthritis: an empirical model. J Pediatr Psychol 1987;12: Varni JW, Rapoff MA, Waldron SA, Gragg RA, Bernstein BH, Lindsley CB. Effects of perceived stress on pediatric chronic pain. J Behav Med 1996;19: Varni JW, Rapoff MA, Waldron SA, Gragg RA, Bernstein BH, Lindsley CB. Chronic pain and emotional distress in children and adolescents. J Dev Behav Pediatr 1996;17: Walco GA, Dampier CD. Pain in children and adolescents with sickle cell disease: a descriptive study. J Pediatr Psychol 1990;15: Walco GA, Ilowite NT. Cognitive-behavioral intervention for juvenile primary fibromyalgia syndrome. J Rheumatol 1992;19: Walco GA, Varni JW, Ilowite NT. Cognitive-behavioral pain management in children with juvenile rheumatoid arthritis. Pediatrics 1992;89:

6 Pediatric Pain S95 Summary Table of Comparison of Pediatric Pain and Pain-Coping Measures* Measure/scale Content Measure outputs No. of items Response format Method of administration Time for administration Psychometric properties Validated populations Reliability Validity Responsiveness Pain Behavior Observation Method Pain Coping Questionnaire Pediatric Pain Questionnaire Observational pain behavior measure validated with children who have JRA. 6 pain behaviors Self-report measure of how children and adolescents cope with pain A measure of pain intensity (visual analog scale; VAS) and location (body outline) and the sensory, affective, and evaluative qualities of pain (words describing pain). Appropriate for children and adolescents. Frequency of six pain behaviors (guarding, bracing, active rubbing, rigidity, single flexing, and multiple flexing). Total pain behavior score. 8 subscales (information seeking, problem solving, seeking social support, positive selfstatements, behavioral distraction, cognitive distraction, externalizing, and internalizing/ catastrophizing) and three higher-order scales (approach, distraction, and emotion-focused avoidance). Pain intensity (VAS) Number of body sites with pain and mean pain intensity across sites with pain (body outline) 6 Frequency of 6 pain behaviors Total pain behavior score 0 to 120 (0 to 20 for each pain behavior). 39 Items scored from 1 ( never ) to 5 ( very often ). Items on subscales and higherorder scales summed and then averaged. 1 VAS. 1 body outline VAS, 0 (no pain) to 100 (severe pain) Body outline intensity, 0 (none) to 3 (severe) Observer views a videotape of a 10-minute session during which children perform a series of behaviors including sitting, walking, standing, and reclining in a standardized sequence Children or adolescents are asked to rate how often they say, do, or think some things people do when they hurt or in pain (e.g., Ask questions about the pain.) Self-rated questionnaire or interview format. 10 minutes once observers are trained. Extensive training required. Children with JRA minutes Healthy children and adolescents; children and adolescents with recurrent pain (headaches or arthritis) minutes Children and adolescents with JRA Interrater agreement: acceptable Internal consistency good Moderate stability. Interrater: agreement acceptable. Concurrent validity established Construct and concurrent validity established. Concurrent validity established Not available Not available Used in pain treatment studies to document pre- to posttreatment changes in pain intensity. * JRA juvenile rheumatoid arthritis.

Measures of Adult Work Disability The Work Limitations Questionnaire (WLQ) and the Rheumatoid Arthritis Work Instability Scale (RA-WIS)

Measures of Adult Work Disability The Work Limitations Questionnaire (WLQ) and the Rheumatoid Arthritis Work Instability Scale (RA-WIS) Arthritis & Rheumatism (Arthritis Care & Research) Vol. 49, No. 5S, October 15, 2003, pp S85 S89 DOI 10.1002/art.11403 2003, American College of Rheumatology MEASURES OF FUNCTION Measures of Adult Work