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Pediatrics & Child Health Division, Th e Royal Australasian College of Physicians. ( 2006 ) . Guideline statement: management of procedure- related pain in neonates . J Paediatr Child Health , 42 (Suppl 1), S31 \200\22339. Sullivan , M. J. L. ( 2008 . Toward a biopsychomotor conceptualization of pain: implication s for research and intervention . Clin J Pain , 24 , 281 \200\223290. Suominen , P. , Caff i n , C. , Linton , S. , McKinley , D. , Ragg , P. , Davie , G. , and Eyres , R. ( 2004 ). Th e cardiac analgesic assessment scale (CAAS): a pain assessment tool for intubated and ve ntilated children aft er cardiac surgery . Paediatr Anaesth , 14 (4), 336 \200\223343. Peters , J. W. , Koot , H. M. , Grunau , R. E. , De Boer , J. , Van Druenen , M. J. , Tibbo el , D. , et al . ( 2003 ). Neonatal Facial Coding System for assessing postoperative pain in infants: item reduction is valid and feasible . Clin J Pain , 19 (6), 353 \200\223363. Registered Nurses Association of Ontario (RNAO). ( 2007 ). Assessment and management of pai n: supplement. Available at: < http://www.rnao.org/ Storage/29/2351_BPG_Pain_and_Supp.pdf > . Taddio , A. , Goldbach , M. , Ipp , M. , Stevens , B. , and Koren , G. ( 1995 ). Eff ect of neonatal circumcision on pain response during vaccination in boys . Lancet , 345 , 291 \200\2232. Ramelet , A. , Rees , N. , McDonald , S. , Bulsara , M. , and Abu-Saad , H. H. ( 2007 a). D evelopment and preliminary psychometric testing of the Multidimensional Assessment of Pain Scale: MAPS . Paediatr Anaesth , 17 (4), 333 \200\223340. Yamada , J. , Stevens , B. , De Silva , N. , Gibbins , S. , Beyene , J. , Taddio , A. , et al . ( 2007 ). Hair cortisol as a potential biologic marker of chronic stress in hospitaliz ed neonates . Neonatology , 92 (1), 42 \200\22349. Supplementary online materials Figure 35.2 Neonatal Facial Coding System. Reproduced from G runau, R and Craig, K, Pain expression in neonates: facial action and cry, PAIN , Volume 28, pp. 395 \200\223410, Copyright 1987. Th is \201 gure has been reproduced with perm ission of the International Association for the Study of Pain (IASP). Th e \201 gure ma y NOT be reproduced for any other purpose without permission. Th is \201 gure has been reproduced with permission of the International Association for the Study of Pain (IASP). Th e \201 gure may not be reproduced for any other purpose wi thout permission. Figure 35.4 PIPP-R: the Premature Infant Pain Pro \201 le-Revised (PIPP-R). Reproduced fro m Bonnie Stevens, Sharyn Gibbins, Janet Yamada, et al, Th e Premature Infant Pain Pro \201 le-Revised (PIPP-R): Initial Validation and Feasibility, Th e Clinical Journal of Pain , P ublished Ahead-of-Print, Copyright 2013, with permission from Lippincott Williams & Wilk ins, Inc. DOI: 10.1097/ AJP.0b013e3182906aed. Figure 35.3 Behavioral Indicators of Infant Pain (BIIP): preterm and full term. Reproduced from Holsti, L. and Grunau, R.E, Initial validation of the Behavioral Indicators of Infant Pain (BIIP), PAIN , Volume 132, pp. 264 \200\223272, Copyright 2007. CHAPTER 36 Self-report: the primary source in assessment after infancy Carl L. von Baeyer Summary Self-report is the primary source of information for assessment of pain and measure ment of its intensity in children age 3 years and older. Th is chapter provides an overview of the variables addressed in assessment, specifi c tools used to obtain self-reports, and inter- pretation of pain scores. Challenges include establishing whether children are able to understand and use self-report scales and interpreting self-reported pain scores when t hey confl ict with cli- nicians \200\231 observation. New developments in self-report asses sment are introduced, such as new support for the use of numerical rating scales and develo pment of computer and smartphone self-report tools. Recommendations are provided supporting integration of self-report of pain in pain management. presence of pain in parts of their body. Starting around age 3 years, children can learn to quantify the intensity of their pain (small, medium, big) and to describe its location and its temporal and sen- sory qualities. By early adolescence, the ability to use self-report measures is similar to that of adults. Complementing this chapter, several other detailed discus- sions of assessment of pediatric pain by self-report are available (Champion et al., 1998 ; Cohen et al., 2008 ; Huguet et al., 2010 ; Ruskin et al., 2011 ; Stinson et al., 2006 ; von Baeyer, 2006 , 2009a ). Background Assessment versus measurement Measurement is assigning a number to a quantity an d is most oft en done for pain intensity, although other aspects of pain such as its unplea s- antness and its temporal features can also be quantifi ed. Assessment is a broader enter prise: collecting and appraising qualitative as well as quantitative information, oft en fr om multiple sources, and taking the context into account. Measurement is oft en part of ass essment. Assessment includes appraisal of the developmental, psychosocial, and medical fact ors that trigger, exacerbate, and relieve the pain. Statement of aims Using information in this chapter, clinicians will be able to choose, adm inister, understand, and interpret appropriate self-report tools to assess and measure pain in children 3 years of age and older. Introduction Th e nature of self-report A self-report is an oral, written, or non-verbal ac count or portrayal of a person \200\231s own thoughts, feelings, or actions. Self-report is the principal means by which one can learn about someone else \200\231s expe- rience. Beca use pain is primarily an internal experience (Merskey and Bogduk, 1994 ), self-report, when available, is widely consid- ered to be the primary source for assessment and measurement of pain, taking priority over observation, reports by proxies such as family members, physi ological data, and knowledge of the clinical context (Pasero and McCaff ery, 2011 ). Howeve r, describing self- report as \200\230the gold standard \200\231 is misleading (Craig, 200 9 ; Craig and Badali, 2004 ). A gold standard score is a score which, in the pres- ence of confl icting data, must be regarded as the correct one. But there are many circumstances un der which self-reports of pain may be distorted or misunderstood, as detailed later in this chapter. Th e purposes of assessment include diagnosis of the cause of the pain, selection and evalu ation of treatments, goal setting, and allo- cation of resources such as laboratory investi gations. Th e purposes of measurement of pain intensity include quantifying pain before ana lgesic treatment and evaluating the eff ects of that treatment, both for individuals and in clinical trials. Domains of assessment Describing pain only in terms of its intensity is like describing mus ic only in terms of its loudness: it is a gross oversimplifi cation of the complexity of pa in experience (von Baeyer, 2006 ). Th at over- simplifi cation is needed to make decisions about pain management and to evaluate their outcome. However, numerous other aspects of pai n can be assessed by self-report, as reviewed and systematized by the Initiative on Methods , Measurement and Pain Assessment in Clinical Trials (IMMPACT, < http://www.immpact.org >). Th is is a multidisciplinary project to improve clinical trials of treatments In young children such as normally developing 2-year-olds, self- report may be limited to v ocalization and pointing to indicate the CHAPTER 36 self-report: the primary source in assessment after infancy 371 for pain based on expert consensus and commissioned reviews of literature. Th e pediatric I MMPACT project (McGrath et al., 2008 ) identifi es domains that would be important to asses s not only in clinical trials but in many clinical situations. (Th e word \200\230domain \200\231 is used here in the sense used in the adult and pediatric IMMPACT reports, that is , meaning the diff erent aspects or dimensions of pain, including intensity, location, sens ory qualities, etc. Th e word is used with a diff erent sense by Lee and Stevens ( Chapter 35 , this volume).) Self-report is an important source of information on each one. Th e dom ains include, among others, those listed in Table 36.1 . Th e functional measures include m easurement of interference caused by pain with physical, cognitive, emotional and social fu nctioning (e.g. school participation and performance), as well as coping. Data on these domains should be recorded in patient charts and fl ow sheets. A frequent con cern, however, is that most fl ow sheets and electronic medical records allow for only a si ngle number for a pain intensity score (parallel to the boxes for vital signs such as tempe rature). Th us the domains of assessment might be covered on admission, for example, in an Initial Pain Assessment Tool (< http:// www.partnersagainstpain.com/printouts/A7012AF4.pdf >), but might not be followed up systematically in subsequent assessments, although informa tion can be placed in narrative notes. Age-appropriate measurement of pain intensity Th e ability to self-report internal states n ormally develops start- ing around age 3 years, with particularly rapid increases in the pr eschool years (Besenski et al., 2007 ; Spagrud et al., 2003 ). Th is developmental change i s illustrated in Figure 36.1 , which is based on the assumptions that an age-appropriate se lf-report tool is used and that children are trained in use of the tool when not in acute d istress. Th e developmental course in this ability is parallel with advances in other langu age and cognitive skills, and is infl uenced by experience with pain (von Baeyer et al., 20 11 ). As shown in Table 36.1 , a mnemonic for domains of assessment that is widely accepted and u sed among emergency and other nurses is PQRST. Th e mnemonic is represented in many slightl y diff ering forms on the Web, adapted here. Table 36.1 Domains of assessment of pain a Ped-IMMPACT PQRST mnemonic Age 8 years and older: visual analog scale; numerical rating scale Th e most commonly admin istered scale, the numerical rating scale (NRS; < http://www.usask.ca/childpain/NRS >), is well supported by recent studies for use in children 8 years and older (Bailey et al., 2010 ; Mir et al., 2009 ; von Baeyer et al., 2009 ). An alternate name for the NRS, when it is administered entirely verbally, is verbal numeric scale (VNS): this name has the advanta ge of distinguishing the tool from scales administered on paper or electronically. Th ere a re no estab- lished or validated verbal descriptors for the maximal pain on the NRS or VNS (e.g. most hurt, worst pain, worst possible pain, most pain you could imagine), but these a nchor phrases have a marked infl uence on pain intensity scores (von Baeyer, 2009b ). Moreo ver, intermediate numbers have no fi xed meaning across individuals: a 6 out of 10 might me an moderate pain for some people and severe for others. Diffi culties oft en encountered wi th the VNS include using numbers above the top of the scale and reporting fractional num- b ers. Reduction of these diffi culties has been achieved for adults by showing the patient a visual aid, that is, a printed page showing the numbers from 0 through 10 with verbal anch ors at each end (Pasero and McCaff ery, 2011 ) while requesting a verbal response. \231 P = Provocation and Palliation. What \231 Pain intensity \231 Symptoms and adverse started the pain? What makes it worse? What makes it better? events \231 Q = Quality. What are the sensory \231 Physical functioning \231 Emotional functioning \231 Role functioning \231 Sle ep qualities of the pain (aching, stabbing, pricking, burning, etc.)? \231 R = Region and Radiation. Where is the pain located? Does it spread? \231 S = Severity. Score the pain intensity using a self-report or observational scale. \231 T = Timing and Type of onset. When did i t begin? How often does it occur? Is it sudden or gradual? How long does it last? Other \231 Past pain experiences: surgery, accident, illness \231 Family members \200\231 pain histories and pain behavior \231 Other pains in addition to the presenting problem \231 For each type of pharmacological, physical, and psychological treatment used in the past: e \200 ectiveness , adherence, and adverse e \200 ects Th e visual analog scale (VAS) is a well-established tool for obtaining self-report of pain intensity in normally developing children 8 years and older (Stinson et al., 2006 ), with some stud- ies suggesting that it can be used for younger children in the 5 to 7-year age r ange. Variants of the VAS have been explored, notably the colored analog scale (McGrath et al., 1996 ) which has been extensively validated and used in research. a Ped-IMMPACT refers to the pediatric project of the Initiative on Methods, Measurement and Pain Assessment in Clinical Trials, < http://www.immpact.org >. Categories listed under \200\230Other \200\231 are particularly relevant to recurrent and chronic pain. Figure 36.1 Faces Pain Scale \200\224Revised (FPS-R). Instructions in about 40 languages ar e available at <http://www.iasp-pain.org/FPSR>. Reproduced from Hicks et al., Th e Faces Pa in Scale \200\224Revised: toward a common metric in pediatric pain measurement, PAIN , Vo lume 93, Issue 2, pp. 173 \200\22383, Copyright 2001. Th is \201 gure has been reprodu ced with permission of the International Association for the Study of Pain (IASP). Th e \201 gure may NOT be reproduced for any other purpose without permission. SECTION 5 measurement of pain 372 For quick use, or for individuals who have diffi culty with these scales, simple word descr iptors of intensity sometimes suffi ce: for example, \200\230a little bit \200\231 of hurt , \200\230medium \200\231, \200\230a lot \200\231, \200\230a real lot \200\231 for young children, or \200\230slight \200\231, \200\230mild \200\231, \200\230moderate \200\231, \200\230strong \200\231, and \200\230intense \200\231 for older children (Ruskin et al., 2011 , p. 231). No standardized sets of these words have been evaluated and they cannot be recorded on the popular 0 to 10 common metric for pain intensity scales. Similarly, for in formal use, the rapid and simple fi nger span scale is avail- able: pain intensity is indic ated by the distance between the tip of the thumb and the tip of the index fi nger (Merkel 2002 ) with more space signifying more pain. Th e fi nger span scale has the advan- tages o f requiring no equipment, nor speech by the child, though the scale may be psychometrically inferior to faces and visual ana- logue scales (Goodenough et al., 2005 ). independently starting in the 1980s. Each has six faces and is scored 0 \200\2232 \200\2234 \200\2236 \200\2238 \200\22310, using the widely accepted 0 to 10 common metric (von Baeye r and Hicks, 2000 ). Th e scales are otherwise quite diff er- ent from each other. Th ere h as been debate over the psychometric properties, utility, and preference among these three faces scales (e.g. Chambers and Craig, 1998 ). Th e FPS-R has most oft en been recommended as the scale to use in research due to its explicit inter- val scale properties, its neutra l rather than smiling lower anchor, its lack of tears at the upper anchor, its validation i n several countries, and the availability of instructions in many languages (Tomlinson et a l., 2010 ). Th e Pieces of Hurt tool comprises four poker chips, checkers, or similar game pieces (Hest er 1979 ). Children are asked to indicate how many \200\230pieces of hurt \200\231 they ha ve, from 0 to 4 years. Various sets of instructions have been published. Th e tool was orig inally referred to as the Poker Chip Tool but this has elicited some resist- ance from pare nts who do not want their child exposed to gam- bling, so the more acceptable phrase \200 \230Pieces of Hurt \200\231 is commonly used. Although the research on this tool has been d one primarily with 5- and 6-year-olds, it has been recommended for use with children as you ng as 3 years (Stinson et al., 2006 ). As represented in Figure 36.1 , some normally-developing individ- uals over the age of 12, including perhaps 8% to 10% of adults, fi nd that pain intensity scales such as NRS and VAS do not make sense to them, and thus cannot make use of these tools, refl ecting the com- p lex and idiosyncratic nature of pain scales (Williams et al., 2000 ). Age 3 years and older: faces scales, Pieces of Hurt Th e VAS and the NRS are presumed to re quire the child to have some competence in seriation (putting things in order) and mag- nit ude estimation, as well as counting in the case of the NRS. Th ese skills are not well deve loped in most children before age 6 or 7. By contrast, faces scales, in principle, require only matching one \200\231s own state of distress to one of the pictures, without necessari ly hav- ing to estimate quantities along a numerical or spatial dimension (Champion et al., 1998 ). Th ese limited cognitive demands make faces scales more suitable for children of p reschool age than the VAS and NRS. Other simplifi cations of pain intensity scales adapted for pre- school-aged children have been proposed but not yet adequately studied. For example, one could ask whether the child has any hurt (using a word the child knows). If the answer is no, the score is 0. If yes, t hen a modifi ed faces scale comprising three faces \200\224small, medium, and large pain in tensity \200\224is administered (von Baeyer et al., 2011 , 2013 ). Th e faces would be redr awn to suit the prefer- ence and comprehension of young children. Interpretation of self-reported pain intensity scores In general, comparisons of pain inten sity scores across time within an individual are more valid than comparisons of such scores across diff erent children. In other words, the score 8/10 might mean some- thing quite di ff erent to one child than to another. However, within individuals, an increase or decrease over time can be interpreted as an index of the effi cacy of pain management eff orts. Dozens of faces scales have been created; of these, three have emerged as the predominant a nd best validated choices (Tomlinson et al., 2010 ): the Faces Pain Scale \200\223Revised ( FPS-R; Figure 36.2 ; < http://www.iasp-pain.org/FPSR >) (Hicks et al., 2001 ); the OUCHER ( Beyer et al., 1992 ; < http://www.oucher.org >); and the Wong-Baker FACES Pain Rating Scale (Whaley and Wong 1991 ; < http://www.wongbakerfaces.org >). Each of these was developed Despite these limitations in interpretation of self-report scores, there have been eff orts to create and validate algorithms governing analgesic administration by pain scores, where by drugs and dosages are selected following rules based on the intensity and duration of pa in (e.g. Falanga et al., 2006 ). Data on eff ects of such algorithms are mixed. 100 n e r d 80 l i h c 60 f o e g a t n e c r e P 40 20 Children \200\231s pain intensity scores do not always make sense to adults. Children somet imes assign high scores to their pain inten- sity when they are assumed to be in no or litt le pain (e.g. before a needle or operation); at other times they assign low scores when the y are believed to be in severe pain. Caregivers might not under- stand the numerous possibl e reasons for these discrepancies. 0 0 2 4 6 8 10 12 Age (years) Pieces of hurt Faces scales Visual analog scales Numerical scales \231 Young children might not understand the scale, so they oft en use a variety of irrel evant strategies to answer the caregiver \200\231s question (von Baeyer et al., 2009 ). For example, up to one-third of children aged 3 and 4 use only the bottom and top of pain scal es, treating them as dichotomous (pain or no pain) rather than graded scales. Figure 36.2 Estimated percentage of children who are able to provide valid self- report of pain intensity as a function of age. Adapted from Lara Spagrud et al., Children \200\231s S elf-Report of Pain Intensity: Th e Faces Pain Scale \200\223Revised, American Journal of Nu rsing , Volume 103, Issue 12, pp. 62 \200\22364, Copyright 2003 C. L. von Baeyer, with p ermission of the author. Th is \201 gure has been reproduced with permission of the Inter national Association for the Study of Pain (IASP). Th e \201 gure may not be reproduced for any other purpose without permission. \231 A variety of cognitive skills are required for accurate use of self- report scales, as cataloged by Besenski et al. ( 2007 ). Th ese skills CHAPTER 36 self-report: the primary source in assessment after infancy 373 develop gradually, with a majority of children but not all acquir- ing the necessary skills by age 7 or 8. of postoperative pain in children aged 3 to 7 years (Beyer et al., 1990 ), the median corre lation between concurrent scores on an observational measure, the Children \200\231s Hospit al of Eastern Ontario Pain Scale (CHEOPS), and the Oucher was r = 0.41, and between the CHE OPS and a mechanical VAS it was r = 0.35. Similarly, in a study of 5-year-olds undergoing i mmunization injections (Cassidy et al., 2001 ), Spearman correlations between a faces pain score and the CHEOPS during and aft er the needle were r s = 0.47 and r s = 0.33. In other words, in many cases the self-report scores were at variance with observers \200\231 scores on a well-established behav- ioural measure. \231 Children sometimes locate their pain within a body part, not in themselves, thus in a sense separating themselves from the pain and producing lower than expected pain ratings (Wennstrom and Bergh, 2008 ). \231 Adults have experience with a variety of mental models (Halford, 1993 ) for rating q uantities. Th ey have encountered volume con- trols to adjust loudness; thermometers, weigh t scales, and rul- ers; and star systems for rating quality of hotels or movies. Young chil dren have far less experience with such mental models, though they have encountered stairca ses (low to high steps), toys that can be placed in order from small to large, and pictures of small and larger numbers of objects. Such analogies can be useful in measurement of pai n intensity, as for example in the Pieces of Hurt tool. Th e modest observer \200\223child concordance, and the lack of a gold standard measure of pain intensity, lead to a dilemma for clinicians. Th ere is no validated way to combine and balance estimates of pain intensity from diff erent sources, nor to adjust self-report sco res to bring them into line with observation and knowledge of the clini- cal context. Yet s everal studies have shown that nurses oft en do so: they alter patients \200\231 self-repor ted pain scores when recording them in medical charts (Pasero and McCaff ery, 2011 , p. 18) , or fail to ask for self-report and substitute their own informal rating. Pasero and McCaf f ery suggest that when patients \200\231 self-report scores are not accepted and acted upo n, \200\230chaos quickly ensues \200\231 (p. 21) because each clinician has diff erent imp ressions, standards, and biases in judging patients \200\231 pain. On the other hand, somet imes self-reports confl ict with other sources of information (see case example). In this c ase example, much additional information is required beyond the simple pain intensity score . \231 Children probably have a very diff erent understanding of the top scale anchor (a hy pothetical maximal level of pain) than adults, as children have less direct and vicarious e xperience of severe pain. Moreover, young children might not be able simultane- ously to th ink of their own pain and a hypothetical maximal pain for comparison of the two, a characte ristic termed \200\230centra- tion \200\231 in Piaget \200\231s accounts of cognitive deve lopment (Gelman and Baillargeon, 2003 ). \231 Children might be inclined to deny or minimize their pain because they believe, accu rately or not, that something bad will happen as a result of giving a high score, e.g. havi ng to undergo further unpleasant diagnostic procedures, or disappointing their family, or n ot being allowed to do a desired activity.