Management Pain in Childhood Cancer

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    1990;86;814Pediatrics

    P. J. McGrath, J. Beyer, C. Cleeland, J. Eland, P. A. McGrath and R. PortenoyManagement of Pain in Childhood Cancer

    Report of the Subcommittee on Assessment and Methodologic Issues in the

    http://pediatrics.aappublications.org/content/86/5/814

    the World Wide Web at:The online version of this article, along with updated information and services, is located on

    ISSN: 0031-4005. Online ISSN: 1098-4275.

    PrintIllinois, 60007. Copyright 1990 by the American Academy of Pediatrics. All rights reserved.by the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village,it has been published continuously since 1948. PEDIATRICS is owned, published, and trademarkedPEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly publication,

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    8 1 4 P E D IA T R IC S V o l. 8 6 N o .5 N o v e m b e r 1 9 9 0

    Repo r t o f th e Subcomm ittee on A ssessm en tand M e thodo log ic Is su es in th e M anagem en t o fP a in in C h ild hood C ance rP . J . M cG ra th (co -o rd in a to r ), J . B eyer , C . C lee land , J . E land ,P . A . M cG ra th , and R . Po rtenoy

    P ain is a com plex , m u ltid im en sion al ex pe riencetha t h as a t lea s t tw o m a jo r com ponen ts . T he firs t,n oc icep tion , is a sen so ry com pon en t d irectly rela tedto ac tiv ity in neura l p athw ay s re sp on sive to tissuedam age . T he second is th e com plex p sycho log ic ,ph ys io log ic , em otion al, an d beh av io ra l re sponse tothe n oc icep tion . T h is re sponse is de te rm ined bym any in trin s ic and ex trin s ic facto rs . In gene ral ,ch ild ren w ill h av e le ss p ain w hen the ex ace rba tingfa cto rs , w h ich a re o u tl ined in T ab le 1 , a re m in i-mized .

    B ecause p ain is ex pe rienced ind iv id ua lly an d sub-jec tiv ely , a ssessm en t o f p ain in each in d iv idu al isessen tial. A ssum ption s reg ard in g an ind iv idua lspa in shou ld no t and canno t b e in ferred from th eam oun t o f tissue dam ag e he o r she h as exp e rien ced .T he refo re , rega rd in g assessm en t o f pa in in ch ild renw ith cance r, th e fo llow ing prin cip le s w e re ag reedupon .

    1 . System a tic asses sm en t o f pa in shou ld b e con -s id ered a necessary p art o f the m an agem en t o fcance r. M ost ch ild ren w ith can cer w ill b e at riskfo r s ign ific an t pa in at som e tim e du rin g the cou rseo f th eir illn ess . Su ch p ain can be cau sed by thed isease itse lf, by invasive d iagno stic an d m on ito ringprocedu res , and by treatm en t. T he refo re , adequ atecare m u st inc lud e a p lan fo r com prehen sive a sse ss-m en t and m anagem en t o f a ll fo rm s o f p a in inadd itio n to th e d isea se-m anagem en t p ro to co l.

    2 . A sse ssm en t o f pa in m u st be ongo in g th ro ugh -o u t th e cou rse o f th e illne ss . Sources o f noc icep tio nand m odify in g fac to rs w ill ch ang e th ro ugh tim e andm ust b e eva lua ted con tinu ou sly .

    MEASUREMENT OF PA INA lth ough com prehensiv e a sse ssm en t o f pa in

    m u st in clude m o re than m easurem en t o f in ten s ityo r seve rity , th is a spect o f pa in is im portan t an d hasbeen s tu d ied th e m o st w ide ly . S im p le, c lin ic allyuse fu l m easu res fo r ev alua ting the in tens ity o f p ain

    in ch ild ren aged 3 years and o lde r a re bo th read ilyava ilab le and va lid ated .

    S ev e ra l im po rtan t fea tu re s o f the m easu rem en to f p a in are no tew o rthy .

    1 . T he ch ild s rep ort o f p ain , if ava ilab le an dso lic ited in an app rop ria te m anne r, is th e b estin d ica to r o f pa in . If a ch ild says h e or she is in p ain ,the ch ild sh ou ld be be lieved .

    2 . If pa in becom es g rea ter than th at w h ich isexp ec ted from know n cau se s , un de tec ted fac to rsw h ich m ay b e a ffec tin g its in tens ity shou ld be su s-pec ted .

    3. If a ch ild den ies p ain w hen th ere is o bv io usev idence of t issu e dam age or if a l tered b eh av io rin d ica tes pa in (see T ab le 2 ), th e rea so ns fo r th eincon sistency be tw een phys ica l f ind in gs, behav io r ,and se lf-report sh ou ld be inves tig ated tho rough ly .

    4. N eona tes an d in fan ts fee l pa in , and neona tesa re n o t le ss sens itiv e to n ox iou s s tim ula tio n thano lde r ch ild ren and adu lts4 T he re fo re , assessm en t o fp ain , a l tho ugh m o re com plex th an in o lde r ch ild ren ,shou ld b e consid ered essen tia l to th e care o f neo-n ate s and in fan ts . In in fan ts , re liance on fac ia lexp ress ion , cry , p os tu re , an d phy sio lo g ic va riab le ssuch as hea rt ra te , resp irato ry rate , b lo od p ressu re ,and p alm ar sw eating are im po rtan t a s po ten tia lind icato rs o f p ain .

    5. Q uestion s such as H ow are you feelin g? orH ow is your pa in ? sh ou ld be con side red soc ia lgam bits and no t m easu re s o f p ain .

    6 . D eve lopm en tal co ns id era tio ns p lay a m ajo rro le in the se lection of m easu res o f pa in (see T ab le3) . B efore 2# {189}ears o f age , no quan tifiab le se lf-rep ort is u su a lly ava ilab le , and assessm en t o f pa inis in fe rred from behav io ra l and phy sio lo g ic re -sponses. W hen language first b eg ins, on ly y es or node te rm in a tion s a re po ss ib le . H ow eve r, by 3 y ears o fag e , in d ication s o f g rea te r o r le sser are usua llyp oss ib le b y use of term s from th e ir ow n exp e rien cesuch as b ig hurt o r little h u rt.

    T hus by 3 years o f ag e, m o st ch ild ren w ith ou t

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    T A B L E 1. Factors Exacerbating Children s Pain

    S U P P LE ME N T 8 1 5

    I ntrinsic factorsChilds anxiety, depression, and fearPrevious experience with inadequately managed painChilds lack of controlExperience of other aversive symptoms (nausea, fa-

    tigue, dyspnea)Child s negative interpretation of situation

    Extrinsic factorsA nxiety and fears of parents and siblingsPoor pr ognosi sInvasiveness of treatment regimenParental reinforcement of extreme under-reaction

    (stoicism) or over-reaction to painInadequate pain management practices of health care

    staffBoring or age-inappropriate environment

    cancer can provide reports of varying levels of in-tensity of pain. In a clinical setting, an estimate ofrelative intensity of pain can often be obtainedthrough careful interview ing using the childs ownlanguage and his or her previous experience withpain. M ore precise measurement ofpain in childrenolder than 3 years is also possible using develop-mentally appropriate specialized measures thathave been validated.57 In these instruments, chil-dren are presented with a series of photographs orcartoon faces of children in various phases of dis-comfort, and they are asked to select the face whichmirrors the degree of pain they are experiencing.M ost children from 3 to 6 years of age accept thesemeasures easily. M edical staff generally find themextremely helpful, and their use in clinical practiceis strongly encouraged.

    Simple, self-report measures are recommendedfor children older than 6 years of age. Among themost useful scales for measuring intensity of painare (a) visual analogue scales (either vertical orhorizontal) (see Fig. 1) and (b ) simple numericalscales such as: I f 0 means no hurt or pain and 10means the biggest hurt or pain you could ever have,tell me how much hurt or pain you have now.

    In contrast to measurement of adult pain, the useof adjectival categorical scales such as mild,moderate, severe, and excruciating are notrecommended for children younger than 13 yearsof age.

    Behavioral observations should not be used inlieu of self-report. H owever, behavioral observa-tions (T able 2) are invaluable in several importantsituations. (a) W hen self-report is not available,for example in children younger than 2 years of ageor in children without verbal ability due to disabilityor disease, behavior provides the primary means ofpai n assessment. (b ) I n the presence of noxiousstimuli, behavioral pain indicators should arouse

    suspicion and should prompt additional investiga-tions even in the absence of a verbal report of pain.

    The behaviors outlined in Table 2 should beconsidered clues to pain. In the context of knownpain-producing stimuli, they support and augmentthe verbal report and, in some cases, give amplejustification for analgesic therapy, even if no reportis forthcoming. T here are individual differences inpain behaviors that may be assessed best in con-sultation with the child s parents, who are usuallymost familiar w ith their child s behavior and itsimplications. Behavioral responses to the acutepain of invasive procedures, such as bone marrowaspiration, are usually more pronounced than re-sponses to chronic pain such as that caused by thecancer. L ike adults, children adapt to prolongedpain, and both behavioral and physiologic responsesmay not be evident. M ore subtle changes, such asa child s reduction in play, may be helpful in thiscontext.

    H eretofore there has been a tendency to assumethat the degree of childrens distress relates tofactors other than pain, eg, separation from parentsor anxiety. This attitude can compromise the med-ical staff s response to the child s pain. A s in adults,the context of the pain should be used to clarify thebehavior. I n the presence of tissue damage, distressbehaviors can be assumed to be caused by painunless there is evidence to the contrary.

    There are currently no physiologic measures thatreliably indicate pain. T reatment of pain shouldnever be withheld based on the lack of physiologicperturbations alone.THE PA IN PROB L EM L IST

    The committee proposes that clinicians developand use a Pain Problem L ist for every child withcancer. The Pain Problem L ist is the outcome ofan assessment process that begins with the painhistory. The history is used to characterize the painaccording to its mechanism (neuropathic, somatic,visceral), the related syndrome (spinal cordT A B L E 2. Behavioral I n dicators of Pain

    Behavior N ot Present PresentCrying 0 0Fussing, irritability 0 0W ithdrawal from social 0 0

    interactionSleep disturbance 0 0Facial grimacing 0 0Guarding 0 0N ot easily consoled 0 0Reduction in eating 0 0Reduction in play 0 0Reduction in attention 0 0

    span

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    T A B L E 3. A ge and M easures of Pain Intensity*

    816 M A NA G EM ENT OF CA NCER PA IN

    Age Self-report M easures Behavior M easures PhysiologicM easures

    Birth to 3 y Not av ai labl e Of primary importance Of secondaryimportance

    3 y to 6 y Speci al iz ed, dev el op-mentally appropri-ate scal es av ai labl e

    Primary i f se lf-reportno t av ai lab le

    Of secondaryimportance

    >6 y Of primary importance Of secondary impor-tance

    * M easures of pain in children have been reviewed by Beyer and W ells,5 M cGrath andU nruh,6 M cGrath,7 and Ross and Ross.8

    NO PA IN

    F ig 1 . V isual analogue scale.

    PA IN ASSEVERE ASPOSSIBLE

    compression, generalized bone pain), and other keyfeatures that may influence the decision to imple-ment one therapy rather than another. W heneverpossible, it is essential to identify the source of thetissue-damaging stimuli. I n some cases, such asprocedure-related pain, the source is obvious, andthe clinician should proceed to assess the charac-teristics of this pain (intensity, location, temporalcharacteristics, pain quality, and provocative andpalliative factors) and the modifying factors (Table1). W hen the source of nociception is not obvious,vigorous efforts should be made to elucidate it bymeans of the medical history, physical examination,and confirmatory imaging and other laboratorytests. I t is rare for pain to be present w ithout anunderlying cause. U nderlying causes may resultfrom complex interactions between the disease andthe treatment of the disease.

    The purpose of the Pain Problem L ist is to iden-tify problems amenable to intervention and to as-sist in selecting the most appropriate treatments toreduce pain in accord with the cause and contrib-uting factors. The Pain Problem L ist can be partic-ularly helpful because there are multiple sourcesand dimensions of pain; there are multiple treat-ments available, and several may be required si-multaneously; pain occurs in the context of ongoingmedical disease and other ongoing medical andpsychosocial problems which will require continu-ing care; and optimal management may require amultidisciplinary approach, and the problem listwill help organize the resources.

    For example, the current Pain Problem L ist fora 4 year old with acute leukemia and mucositis afterchemotherapy might be:

    1. Severe mouth pain related to mucositis2. M ild bone pain related to invasion of bone

    marrow

    3. Anxiety related to pain and concern aboutprognosis4. Reduced eating related to mouth pain5. N ightmares and disturbed sleep related to

    bone marrow aspirations.This problem list then serves as the basis for

    generating specific interventions to ameliorate thepain.

    The Pain Problem L ist is a subsection of thepatient s problem list and should be entered in theappropriate section of the medical record.A SSESS ING THE EFFECTS OFINTERVENT IONS

    The goal of analgesia is to provide maximum painrelief w ith minimal side effects. In some cases,adequate analgesic management can produce com-plete elimination of pain without uncomfortableeffects. In others, a trade-off w ill have to be madebalancing pain against side effects. T he wishes ofthe child and the child s family should be para-mount in assessing this aspect of analgesic therapy.For example, some children tolerate some pain sothat complete alertness can be retained, whereasothers will accept drowsiness which may indeedbecome a welcome relief from the struggle againstthe d isease.

    Children and adolescents have difficulty respond-ing to scales that assess the degree of improvement.T herefore, it is usually unwise to ask, H ow muchhas your pain improved? Repeated measures ofintensity should be used, and reductions in painintensity scores should be considered an indicationof improvement. Children can be reminded of theirprevious rating to help them assess changes as well.

    Children younger than 6 years of age are oftenunable to answer questions regarding the accepta-bility of the side effects of analgesics.A SSUR ING QUA L ITY CA RE

    Every member of the child s health team is re-sponsible for the appropriate assessment and man-agement of pain. Pain is a complex problem that

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    S U P P L E M E N T 8 1 7

    frequently requires the input of all health disci-plines. The primary care giver (physician or clinicalnurse) should compile the Pain Problem L ist whichshould be entered in the medical chart. M easure-ment of pain should be considered the equivalentof vital signs and regularly recorded at the child sbedside and entered in the medical chart. Pain flowsheets may facilitate such charting and are recom-mended. I nstitutional Quality A ssurance Programsshould require these measures and should monitorthe measurement of pain and treatment standards.

    Recently, M ohide et al9 have developed a qualityassurance audit, scoring guide, and instructionmanual for adult cancer pain. Such an approachshould be developed for pediatric cancer pain.

    Parents have a key role to play in the assessmentand management of their child s pain. Parents areusually careful observers of their child s behaviorand will notice subtle changes caused by pain. Par-ents should be encouraged to exercise their rightsto be advocates for adequate pain control for theirchildren.

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    1990;86;814PediatricsP. J. McGrath, J. Beyer, C. Cleeland, J. Eland, P. A. McGrath and R. Portenoy

    Management of Pain in Childhood CancerReport of the Subcommittee on Assessment and Methodologic Issues in the

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