Chronic Pain Assessment Tools forCerebral Palsy: A Systematic ReviewShauna Kingsnorth, PhDa,b,c, Taryn Orava, MAa, Christine Provvidenza, MSca, Ellie Adler, MSca,Noam Ami, MSca, Tessa Gresley-Jones, NPd,e, Deepali Mankad, PhD, MDd, Naomi Slonim, PhD, CPsychd,Linda Fay, BSc OT, OT Reg (Ont.)c,d, Nick Joachimides, MCISc, RNf, Andrea Hoffman, BScH, MD, FRCPCb,d,g,Ryan Hung, MD, MScb,d,g, Darcy Fehlings, MD, MSc, FRCPCb,d,g

abstractBACKGROUND AND OBJECTIVE: Chronic pain in children with cerebral palsy (CP) is underrecognized,leading to detriments in their physical, social, and mental well-being. Our objective was toidentify, describe, and critique pediatric chronic pain assessment tools and makerecommendations for clinical use for children with CP. Secondly, develop an evidence-informed toolbox to support clinicians in the assessment of chronic pain in children withdisabilities.

METHODS: Ovid Medline, Cumulative Index to Nursing and Allied Health Literature, and Embasedatabases were systematically searched by using key terms “chronic pain” and “clinicalassessment tool” between January 2012 and July 2014. Tools from multiple pediatric healthconditions were explored contingent on inclusion criteria: (1) children 1 to 18 years; (2)assessment focus on chronic pain; (3) psychometric properties reported; (4) written inEnglish between 1980 and 2014. Pediatric chronic pain assessment tools were extractedand corresponding validation articles were sought for review. Detailed tool descriptionswere composed and each tool underwent a formal critique of psychometric properties andclinical utility.

RESULTS: Of the retrieved 2652 articles, 250 articles met eligibility, from which 52 chronic painassessment tools were retrieved. A consensus among interprofessional working groupmembers determined 7 chronic pain interference tools to be of importance. Not all tools havebeen validated with children with CP nor is there 1 tool to meet the needs of all childrenexperiencing chronic pain.

CONCLUSIONS: This study has systematically reviewed and recommended, through expertconsensus, valid and reliable chronic pain interference assessment tools for children withdisabilities.

aEvidence to Care, bBloorview Research Institute, dChild Development Program, and fQuality, Safety and Performance, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada;and cDepartment of Occupational Science and Occupational Therapy, eLawrence S. Bloomberg Faculty of Nursing, and gDivision of Developmental Pediatrics, Department of Pediatrics,University of Toronto, Toronto, Ontario, Canada

Dr Kingsnorth conceptualized and designed the study, led study selection, tool critique, review and assessments of tools for inclusion, as well as substantialcontributions to the draft manuscript; Ms Adler and Mr Ami participated in study selection, data acquisition, and tool critique; Ms Fay, Ms Gresley-Jones,Dr Hoffman, Mr Joachimides, Dr Mankad, and Dr Slonim participated in study selection, tool critique, review, and assessment of tools for inclusion;Dr Fehlings, Dr Hung, and Ms Provvidenza participated in the review and assessment of tools for inclusion; Ms Orava updated the search with respect to studyselection, data acquisition, and drafted the initial manuscript; all authors helped shape execution of the study; and all authors approved the final manuscript assubmitted.

This review has been registered at PROSPERO: International Prospective Register of Systematic Reviews (identifier CRD42014013255).

www.pediatrics.org/cgi/doi/10.1542/peds.2015-0273

DOI: 10.1542/peds.2015-0273

Accepted for publication Jul 7, 2015

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Chronic pain, defined as pain thatpersists longer than 3 months or thatof the expected time to heal, is anincreasingly common concern forchildren and adolescents withdisabilities.1 Children with cognitiveand physical impairments such ascerebral palsy (CP) are at risk forchronic pain rooted fromgastrointestinal dysfunctions,musculoskeletal complications,therapeutic procedures, as well asother universal causes includingtrauma, infection, and commonchildhood pain.2,3

CP is the most common physicaldisability among pediatricpopulations, with an incidence rate of2 to 2.5 cases per 1000 births withinthe United States.4 It is classified asa group of permanent disorderscaused by nonprogressivedisturbances to the developingbrain.5 Children with CP experiencedisturbances associated withbehavior, cognition, communication,and perception, in addition toaccompanying risk of epilepsy andmusculoskeletal issues.5,6 The GrossMotor Function Classification System(GMFCS) is used with children withCP to classify physical function ina clinically significant manner.7 As theGMFCS scale moves from level I to V,a child becomes increasingly limitedin their gross motor movement andmore reliant on assistive equipment.7

Previous research has documenteda correlation between GMFCS levelsand the presence of chronic pain.8

Children with more severe motorimpairments may experience painstemming from musculoskeletalchanges (eg, hip subluxation/dislocation, fragility fracturessecondary to a reduction in bonemass), neurologic issues (eg,hypertonia, spasticity, dystonia),gastrointestinal issues (eg, gastroesophageal reflux), and/or assistiveequipment (eg, uncomfortableseating).6,9 This is not to say thatchildren at lower levels of GMFCS donot experience chronic pain. Previous

estimates suggest that pain isexperienced by upwards of 60% ofchildren with CP who can self-report,and as high as 73% of children whenreport is provided by a caregiverproxy.8,10 Within a Canadian context,1 in 4 children with CP havemoderate to severe pain and in somecases, report multiple sources ofpain.9 The vast heterogeneity of theCP condition, as well as multiplepotential sources of pain and variedcommunicative abilities hampersaccurate assessment; this often leavespain unrecognized anduntreated.9,11,12

Unrecognized pain can have negativeimplications on health and quality oflife, with the possibility thatchildhood pain will persist andprogress into adulthood.1,9,11,13–20

Chronic pain can significantlyinterfere with participation in dailyliving activities, both as a result oflimited mobility resulting from thesource of pain and fear-drivenavoidance of specificactivities.8,15,16,21–24 Childhoodchronic pain has been associated withdisturbances in sleep, increasedfatigue, depression, and decreasedphysical functioning.11 Unmanagedpain leads to social, functional, andbehavioral consequences, increasedstress on the family, and unnecessaryprolonged suffering by the child.25

To effectively manage chronic pain inchildren with CP, the source, site, andways in which participation in dailyliving activities is limited must firstbe accurately identified.Recommendations have been gleanedfrom general pediatric pain researchincluding the emphasis on using self-report measures as much as possibleto capture the subjectivity of paininterference.26–30 However, theheterogeneity of physical andcognitive impairments associatedwith CP makes it difficult to assesschronic pain using a singlestandardized tool.26–32 Further,barriers to assessment stem froma lack of awareness among health

professionals of psychometricallysound tools and/or a lack ofstandardization within organizationsfor routine chronic painassessment.32–34 Although previousreviews have identified measures toinform clinical practice, theapplication to children withdisabilities is lacking.27–31,35,36

Therefore, the primary aim of thisreview was to identify, describe, andcritique pediatric chronic painassessment tools currently availableand make recommendations forclinical use for children with CP. Toaddress the gap between researchand practice, a secondary aim was toselect relevant assessment tools forinclusion in a clinical practice toolboxto support health care professionalsin their efforts to accurately identifyand assess chronic pain in childrenwith physical disabilities.

METHODS

Interprofessional Working Group

From the outset, this project wasundertaken with the goal of directlyinfluencing clinical care. In keepingwith an integrated knowledgetranslation approach,37 aninterprofessional working group wascreated to guide and contribute to allstages of project development, datacollection, analysis, and tool selection.The working group includedrepresentation from the following:developmental pediatrics,occupational therapy, psychology,nursing, research, knowledgetranslation, patient safety, seniormanagement, as well as client andfamily representation.

Search Strategy

In developing the review searchstrategy, the working group took intoaccount the following: the generallack of diagnostic-specific pediatricpain tools; the potential applicabilityof pediatric chronic pain toolsaddressing other physical disabilitiesand/or common childhoodconditions; and the breadth of

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cognitive, communicative, andfunctional impairments associatedwith a diagnosis of CP. Based on theseconsiderations, the researchers optedto conduct a broad search to identifyas many relevant pediatric chronicpain assessment tools as possible.

Consistent with the PreferredReporting Items for SystematicReviews and Meta-Analysesstatement and A Measurement Toolto Assess Systematic Reviewchecklist,38,39 the comprehensivesearch strategy was designed byclinicians, methodological experts,and a Health Sciences Librarian. Peer-reviewed articles were searchedwithin 3 scientific databases: OvidMedline, Embase, and the CumulativeIndex to Nursing and Allied HealthLiterature. Initial searches wereconducted in January and February2012 and subsequently updated inJuly 2014 by using terms outlined inthe Supplemental Information. Ahand search for additional titles wasconducted by scanning reference listsof retrieved articles meetingeligibility criteria. This searchstrategy and systematic review wereregistered with PROSPERO:International Prospective Register ofSystematic Reviews(CRD42014013255).

Inclusion/Exclusion Criteria

Articles were included if the eligibilitycriteria were met: (1) involveda pediatric population (1–18 years);(2) assessed chronic pain, detailed aspain lasting more than 3 months orlasting longer than expected; (3)reported tool psychometricproperties; and (4) an Englishpublication between 1980 and 2014.Articles were excluded based on: (1)the wrong age group (eg, neonates oradults); (2) a nonclinical population(eg, athletes, professionals); (3)nature of pain did not align withchronic pain as defined; (4)a pediatric population with diseasesor disorders not habitual toa pediatric rehabilitation context:psychosomatic nerve pain, HIV/AIDS,

gynecologic/prostate pain or mentalhealth concerns devoid of anunderlying physical diagnosis; (5)tool did not measure pain asa primary or secondary focus; (6)psychometric properties wereunreported; and/or (7) tool was notvalidated in English.

Study Selection

Each title, abstract, and full-textarticle was independently appraisedby a minimum of 2 reviewersfrom the working group (Ms Adler,Ms Fay, Ms Gresley-Jones, Dr Hoffman,Mr Joachimides, Dr Kingsnorth,Dr Mankad, Ms Orava, Dr Slonim). Theexclusion criteria were pilot-testedto ensure interrater reliability.Discrepancies during review werediscussed between pairs of reviewersand resolved through consensus witha majority of working group members.

Tool Identification

From the full-text articles, a masterlist of unique tools used in eacharticle was created. A total of 9working group members (Ms Adler,Mr Ami, Ms Fay, Mr Joachimides,Dr Kingsnorth, Dr Mankad,Ms Nizigama, Ms Orava, Dr Slonim)were assigned groupings of thesetools, which were then screened toensure a pediatric and chronic painfocus. After identification of pediatricchronic pain assessment tools,a reverse mapping exercise wasconducted, by which articlesvalidating and/or using the chronicpain assessment tools were retrievedfor data extraction. Copies of theoriginal full versions of each toolwere also obtained from publishedmaterials and/or by directlycontacting the developers.

Data Extraction

Five working group members (Ms Adler,Mr Ami, Ms Hanlon, Dr Kingsnorth,Ms Nizigama) completed andcross-checked a predefined dataextraction template by using MicrosoftExcel. Extracted data from retrievedarticles included the following: original

and secondary source information(article citation, origin of toolquestions, pain condition of interest,sample size, mean age and SD, setting,and study design), tool accessibility(how to access a full copy of the tool),tool components (domains of pain,single versus multidimensional,validated age range, number ofsubscales, number of items/questions,and scoring metrics), and qualitymetrics (criterion and constructvalidity, responsiveness, and interraterand/or test-retest). Extracted dataand full tool versions were sharedwith working group members asbackground materials to inform thetool critique procedures.

Tool Critique

Tools were critiqued on the merit ofpsychometric properties and clinicalutility and selected for inclusionwithin the best practice toolbox byusing processes hereafter described.

Psychometric Properties

The Society of Pediatric PsychologyAssessment Task Force developeda schematic for the formal critique ofmeasures to assist in theidentification, selection, and intendeduse of evidence-informed assessmenttools in standard practice.40 Thecriteria are based upon the use of thetool within peer-reviewedpublications, sufficient level of detailwithin primary source validationarticles for a well-informed critiqueto be developed, and demonstrationof good reliability and validity withthe target population.40 Reviewers(Ms Adler, Mr Ami, Ms Hanlon,Dr Kingsnorth, Ms Nizigama) critiquedthe psychometric properties by usingextracted data from each article citingidentified tools and provided anoverall Society of PediatricPsychology Assessment Task Forcecriteria rating: well-established,approaching well-established, orpromising assessment.40 Forexample, based upon the cumulativedata extracted from cited articles,a tool would be categorized as well-

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established if the tool had been usedwithin published studies from 2 ormore investigator teams, the detailspertaining to tool use were presentedin the validation article, allowing forreplicability, and at least 1 of thearticles had presented statisticallysignificant reliability and validity foruse with children with chronic pain.

Clinical Utility

Although a tool may be grounded inevidence and have endured rigorouspsychometric testing, a measure maybe underutilized if the tool does notmeet the needs of the targetpopulation.41 Assignment of a clinicalutility rating involved a 2-stepprocess, by which results of step 1informed that of step 2. During step 1,each tool was rated independently by2 members of the working group withdirect clinical experience (Ms Fay,Ms Gresley-Jones, Mr Joachimides,Dr Mankad, Dr Slonim) usingcriterion adapted from existing ratingschemas developed to assess paintools (Table 1).42,43 Select contentwas modified and included 3sections: usability (ie, format, length,scoring, suitable for population;Q1–4), comprehensiveness (ie, impactof pain, consideration of varied gross

motor abilities, appropriate window;Q5–8) and other considerations (ie,additional measures, considerationsof varied verbal abilities; Q9–10).42,43

Working group members were askedto select a rating of clinical utility foreach tool based upon the overallscore (ie, weak, 0–5 points; moderate,6–11 points; strong, 12–16 points)and strengths within usability,comprehensiveness, and otherconsiderations. These ratings wereused to facilitate group discussionswith a majority of working groupmembers in step 2. Members wereasked to weigh the strengths andlimitations of each tool, consideringits real-world applicability withina tertiary rehabilitation setting andpredicted value for assessing chronicpain in children with CP. A final rating(ie, weak, moderate, strong) wasselected through group consensus.

Expert Consensus

Based upon ratings of psychometricproperties and clinical utility,consideration of tools in their entirety(ie, relevance of all subscales) and allsupporting materials (ie, results ofdata extraction, cited articles, fulltools), triads of working groupmember (Ms Chin, Ms Fay, Dr Fehlings,

Mr Geremia, Ms Gresley-Jones,Dr Hoffman, Dr Hung, Dr Kingsnorth,Dr Mankad, Ms Provvidenza, Dr Slonim)made independent recommendationsto include or exclude each toolwithin the best practice toolbox.Tools receiving unanimous agreementfor inclusion from working groupmembers were included in thetoolbox. Tools receiving conflictingrecommendations were thenpresented to the full workinggroup, with inclusion based on amajority vote.

Tool Description

Upon selection, a formativedescription of each tool wasdeveloped incorporating: (1)assessment tool type; (2) reportingtype; and (3) clinical populations eachtool had previously been used with.

Tool Assessment Type

Each tool was further categorized asdiscriminative or evaluative.44 Thepurpose of a discriminativeassessment is to compare 2 or moreindividuals or groups at a given pointin time in the absence of a goldstandard measure.45 For the purposeof this review, discriminative toolswere used to identify the presence or

TABLE 1 Rating Schema for Assessing Clinical Utility of Chronic Pain Tools Within a Tertiary Rehabilitation Setting

Factor Item Applicable forChildren With CPa

Can Be Used for ChildrenWith CP, but With Caveatsb

Not Applicable forChildren With CPc

Usability 1. Have questions that are easy to understand.2. Is easy to score and interpret.3. Is not too time consuming.4. Is appropriate for use with

children and adolescents with CP.Comprehensiveness 5. Gives me useful information

about how pain affects functionor quality of life.

6. Tells me if the client doesor does not have pain.

7. Can be used with a client of any GMFCS8. Assesses chronic pain/pain

behavior over number of days$14 d 1–13 d #1 d

Other considerations 9. Measures outcomes otherthan pain (ie, depression, anxiety).

Yes/noIf yes, what does it measure?

10. A child with CP with verbalskills would be able to self-report pain using this tool.

Yes/no

a Two points = the tool is effective in this situation.b One point = the tool can be used in this situation but with caution.c Zero points = the tool is not effective in this situation.

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absence of chronic pain. Evaluativeassessment tools, on the other hand,are intended to track the progress ofthe dimension of interest (ie, chronicpain) of a person or a group overtime.45

Tool Reporting Type

The reporting type of each tool wasidentified as self-report,observational, or combination. Self-report measures are considered to bethe gold standard in painassessment3,46 and require anindividual to reflect upon his or herunique pain experience.Observational measurements callupon a health care professional,parent, or caregiver as a proxy toreport signs and symptoms of chronicpain on the child’s behalf.Observational tools are highlyvaluable and frequently used forindividuals with cognitive orcommunicative impairments.47–49

Some tools provide different versions,such that either a self-report and/orobservational version can be selecteddepending on the specific needs ofthe child. When appropriate, bothversions may be completed to gaininformation on the experience ofchronic pain from multipleperspectives.50,51

Tool Use With Clinical Populations

Based upon information collectedfrom original source articlesidentified through the review, a list ofpediatric clinical populationspreviously having used each tool wasgenerated. The list aimed to recordboth physical disabilities and othermedical conditions for which chronicpain is prevalent. As few tools existfor children with CP, the workinggroup considered the capacity of eachtool to be used with children withphysical limitations associated withweight bearing and mobility. Fourmembers with practical experiencedelivering assessment tools tochildren across the spectrum ofGMFCS (Ms Fay, Ms Gresley-Jones,Dr Hoffman, Dr Mankad) used

extracted data and tool descriptions,alongside professional judgment, tomake recommendations for use forGMFCS levels I to III (independent/some assistance) and/or GMFCSlevels IV to V (full assistance).

RESULTS

Identification of Assessment Tools

The results of the comprehensivesearch strategy are outlined in Fig 1.In total, 2652 records were retrievedfrom Medline (n = 1356), Embase (n =873), and the Cumulative Index toNursing and Allied Health Literature(n = 423; as of July 2014). As shownin Fig 1, screening of titles, abstracts,and articles yielded 240 studies fortool identification.

From these studies, 308 assessmenttools were identified and screened,from which 254 tools were excludeddue to varied reasons (as described inSupplemental Table 3). Ultimately, 54chronic pain assessment toolsunderwent a formal critique ofpsychometric properties, clinicalutility, and expert consensus fromwhich 15 chronic pain assessmenttools were selected for inclusion inthe best practice toolbox.

Selection of Tools

The 15 tools were divided into 1 of 2categories focused on how chronicpain interferes with daily activities orhow children cope with chronic pain.Based on the weight of the evidence,the in-depth overview providedherein focuses solely on the formalcritique of chronic pain interferencetools, alongside expertrecommendations made by theworking group in regards to toolapplicability. In contrast to thechronic pain coping tools, the chronicpain interference tools had a strongerevidence base pertaining to childrenwith disabilities and held higherratings of clinical utility. Thus theworking group prioritized thiscategory of tool as the first step inidentifying the site, source, and ways

in which chronic pain affects a childwith CP. Although the working groupadditionally recognized theimportance of assessing strategiesused to cope with chronic pain, therewas no empirical evidence validatingthe identified tools for use amongchildren with CP. Focusing on chronicpain interference tools as the prioritywas also supported by thejustification that chronic pain cannotbe effectively managed if it is notaccurately identified.

Selected Chronic Pain InterferenceTools

Table 2 summarizes thecharacteristics of the 7 pediatricchronic pain interference toolsselected through working groupconsensus. The tools were intendedto determine if a child had chronicpain (Body Diagram,Noncommunicating Children’s PainChecklist-Revised [NCCPC-R],Pediatric Pain Questionnaire [PPQ]),track pain over time (Bath AdolescentPain Questionnaire [BAPQ], ChildActivity Limitations Interview [CALI],Pediatric Pain Interference Scale[PPIS]), or both (Pediatric Pain Profile[PPP]). They relied on observational(NCCPC-R, PPP), self-report (BodyDiagram), or combination reportingstyles (BAPQ, CALI, PPIS, PPQ). Alltools had been validated witha pediatric population and a broadrange of medical conditions; of note,the NCCPC-R, PPIS, PPP, and PPQhave been used specifically to assesspain in children with CP. Ratings ofpsychometric properties, clinicalutility, and recommendations for tooluse according to GMFCS levels arepresented.

Bath Adolescent Pain Questionnaire

The BAPQ is an evaluative tool usedto assess chronic pain in adolescentsfrom the perspective of theadolescent52 or parent (BAPQ-P).53

The 61-item questionnaire has broadapplicability because it coversmultiple domains related to chronicpain, including development and

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family functioning, which are uniqueattributes of adolescence.52 The BAPQhas not been used with children withCP but has been validated withchildren who experience chronicmusculoskeletal pain conditions(Table 2).52–59 The working groupdeemed the BAPQ and BAPQ-P aswell-established with weak clinicalutility. The working group suggeststhis tool to be of potential value forchildren with GMFCS levels I to IIIbecause it inquires about impact of

pain on mobility. However, reviewerscritiqued its lengthy format and felt itmay be a challenge to embed withinclinic workflow.

Body Diagram

The Body Diagram was originallydeveloped, validated, and used withan adult population to assess thelocation, distribution, and intensityof acute and chronic pain.60,61 Thisdiscriminative tool has beenvalidated with children with chronic

pain conditions (Table 2).62–67 Theworking group deemed the BodyDiagram to be approaching well-established in psychometricproperties with strong clinical utility.As a standalone tool, the BodyDiagram would not provide as muchdetailed information related tochronic pain interference andthereby, is recommended by currentreviewers to be paired with anothertool. A benefit of this tool is theabsence of weight bearing ormobility-specific questions, and isrecommended for use with childrenof all GMFCS levels.

Child Activity Limitations Interview

The CALI was designed to assess theimpact of functional impairment frompain on a child’s ability to participatein his or her activities of daily living.66

This evaluative chronic pain-specifictool has been validated both as aninterview for parent and child anda self-report, paper-pencil tool.66,68

The CALI has been used with childrenwith a number of chronic painconditions (Table 2).67–70 Reviewersfound value in the meaningful contentof the CALI, because the individual isasked to select and rate 8 of 21activities that are difficult because ofpain.66 The child and/or caregiver areable to select the activities, which havethe most personal meaning.71 Thistool has been classified as having well-established psychometric propertiesand moderate clinical utility. Althoughthe CALI rated high in usability, thisquestionnaire does contain weightbearing and mobility-based questions.Although a child may choose otheractivities, the reviewers haverecommended the CALI for use forchildren with GMFCS levels I to III.

Noncommunicating Children’s PainChecklist–Revised

The NCCPC was developed throughsemistructured interviews withprimary caregivers of children whoare nonverbal72 and later validatedwith caregivers of children witha broad array of cognitive and motor

FIGURE 1Results of the systematic review.

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TABLE2

PediatricChronicPain

Interference

Tools

Tool

Name

AssessmentType

ReportingStyle

Exam

ples

ofTool

UseWith

PediatricMedical

Conditions

Ratingof

Psychometric

Properties

Ratingof

Clinical

Utility

Considerations

forUse

forChildrenWith

CPSelf-Report

Observation

BAPQ

Evaluative

✓✓

•Complex

regional

pain

syndrome

Well-established

Weak

GMFCSI-III

•Juvenileidiopathicarthritis

•Juvenilewidespreadidiopathic

musculoskeletal

pain

•Lowback

pain

•Recurrentabdominal

pain

Body

Diagram

Discriminative

✓•Chronicheadache

Approachingwell-established

Strong

GMFCSI-V

•Complex

regional

syndrome

•Cysticfibrosis

•Functionalabdominal

pain

•Juvenileidiopathicarthritis

•Musculoskeletal

pain

•Myofascialpain

•Sicklecelldisease

CALI

Evaluative

✓✓

•Abdominal

pain

Well-established

Moderate

GMFCSI-III

•Back

pain

•Cancer

•DucheneandBecker

musculardystrophy

•Juvenilechronicarthritis

•Neuropathicpain

•Migraine

•Musculoskeletal

pain

•Myofascialpain

•Obesity

•Sicklecelldisease

NCCPC-R

Discriminative

✓•Autism

spectrum

disorder

Well-established

Strong

GMFCSI-V

•CP

•Congenitalhydrocephalus

•Epilepsy

•Downsyndrome

•Lennox-Gastaut

syndrome

•Motor

disabilities

•Rettsyndrome

•Severe

cognitive

impairment

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TABLE2

Continued

Tool

Name

AssessmentType

ReportingStyle

Exam

ples

ofTool

UseWith

PediatricMedical

Conditions

Ratingof

Psychometric

Properties

Ratingof

Clinical

Utility

Considerations

forUse

forChildrenWith

CPSelf-Report

Observation

PPIS

Evaluative

✓✓

•Abdominal

pain

Approachingwell-established

Moderate

GMFCSI-III

•Attentiondeficitdisorder;

attention-deficit/hyperactivity

disorder

•Allergies

•Arthritis

•Asthma

•CP

•Chronicfoot

pain

•Chronicheadaches

•Chroniclowback

pain

•Complex

regional

pain

syndrome

•Diabetes

•Fibrom

yalgia

•Gastrointestinal

disorders

•Immunedisorders

•Mentalhealth

disorders

•Migraines

•Musculoskeletal

pain

•Progressivepseudorheumatoid

chondrodysplasia

•Spinal

cord

injury

PPP

Discriminative/

evaluative

✓•Cerebral

malform

ations

Well-established

Moderate

GMFCSI-V

•CP

•Congenitalandchromosom

aldisorders

•Developm

entaldelay

•Sanfilippo

syndrome

•Spastic

quadriplegia

Varni-Thompson

PPQ

Discriminative

✓✓

•Abdominal

pain

Well-established

Moderate

GMFCSI-III

•CP

•Fibrom

yalgia

•Juvenilerheumatoidarthritis

•Irritablebowelsyndrome

•Migraines

•Musculoskeletal

pain

•Myofascialpain

•Recurrentabdominal

pain

•Regional

pain

syndrome

•Spinabifida

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impairments, including CP(Table 2).73–77 This observational,discriminative tool can be used toassess past chronic pain, pain as itoccurs, or postoperative pain.73,74

The revised version requires a 2-hourobservational period followed by thecompletion of the 30-itemquestionnaire.75 The NCCPC-R hostsstrong external validity aspsychometric testing has taken placewithin natural and clinical settings.74

Researchers have affirmed theNCCPC-R accurately captures painbehaviors across various levels ofa child’s development.78 The workinggroup recommended the NCCPC-R forchildren with GMFCS levels I to Vbecause of its well-establishedpsychometric properties and strongclinical utility. One consideration,however, is the 2-hour time framerequired for completion, which limitsits appropriateness for clinicalapplication.

Pediatric Pain Interference Scale

The PPIS was developed by theNational Institutes of Health PatientReported Outcomes MeasurementInformation System initiative.79 TheNational Institutes of Health PatientReported Outcomes MeasurementInformation System hosts an itembank, which has been developed byusing Item Response Theory andallows for customization of items tomeet clinical needs.79 This evaluativescale was initially developed for anadult population to assess pain-related behaviors across 5 domains(pain, fatigue, physical functioning,social health, and emotional health).79

The tool has since been validatedwith pediatric populations (5–18years) representing a variety ofchronic health conditions, includingCP (Table 2).80–83 A parental proxyitem bank can also be used whenchild self-report is not feasible.82,84

The working group categorized thePPIS as approaching well-established,with moderate clinical utility. Thepaper-based, observational tool wasfound to be easy to administer;

however, items related to mobilityand weight bearing restricts the useto children with GMFCS levelsbetween I and III.

Pediatric Pain Profile

The PPP was specifically developedto assess pain in children withneurologic impairments, includingCP (levels I–V; Table 2).3,85–87 Thefoundation for the 20-itemquestionnaire stemmed fromqualitative interviews with healthcare professionals and caregivers ofchildren with significant neurologicimpairments.3 The clinical utility ofthis dual purpose scale (evaluativeand discriminative) scored highwithin usability; however, reviewersfelt the information provided wouldnot fully capture the impact of painon function or quality of life.Therefore, the PPP was classified ashaving well-establishedpsychometric properties andmoderate clinical utility forrecommended use for children withGMFCS levels I to V.

Varni/Thompson PPQ

Varni and Thompson (1987)88

developed the PPQ to assesschronic pain from the perspective ofthe child and the parent. This tool,which was based upon the McGillPain Questionnaire for adults,89

was validated with children withchronic pain conditions, and morerecently, has been adapted for usewith children with CP(Table 2).90,91 Within this modifiedversion, parents were instructed touse verbal and nonverbal cues toindicate the presence and quality oftheir child’s pain.91 Although allGMFCS levels were representedwithin this research, the reviewershave categorized the psychometricproperties as well-established, yet,with moderate clinical utility.Children within GMFCS levels I toIII may be able to self-report byusing the PPQ; however, moreresearch is needed to validate themodified version of the PPQ for use

with children with GMFCS levelsIV to V.

DISCUSSION

Previously published systematicreviews regarding pediatric chronicpain assessment have focused ontypically developing children who arehigh functioning, with a singlediagnosis causing chronic pain, whopossess the ability to self-report.27,29–31,36 Authors of thesereviews suggest further research isneeded for applicability of findings tomeet the needs of children withcognitive impairments and physicaldisabilities.35,92 Against thesereviews, we sought to address thisgap by systematically reviewing andcritiquing pediatric assessment toolsto be used to evaluate chronic paininterference in children with CPacross a broad range of physical anddevelopmental function.

An exhaustive search of 3 scientificdatabases retrieved 2652 recordsfrom which 54 pediatric chronic painassessment tools were identified andmet eligibility criteria. A consensusstrategy conducted with aninterprofessional working groupconsidered the psychometricproperties and clinical utility of alltools, electing 15 chronic pain tools tobe nominated for inclusion. Thesewere further divided into toolsfocused on pain interference withdaily activities and tools focused oncoping with chronic pain. This reviewprovided in-depth details of chronicpain interference tools, which weremainly classified as well-establishedwith moderate clinical utility. Theywere found to be the most relevant tochildren with CP in so far that chronicpain cannot be managed if it has notbeen assessed.

The working group maderecommendations for clinical useaccording to GFMCS levels. Fourinterference tools had beendeveloped and/or used with childrenwith CP, with all tools recommendedfor use with children with GMFCS

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levels I to III. Only the NCCPC-R andPPP were developed to be used withchildren with GMFCS levels IV and V,which addresses a gap in chronicpain assessment for children withsevere cognitive, motor, and physicalimpairments. The PPIS and PPQ werenot initially designed for childrenwith CP, but have since been adaptedand validated for use in childrenwith GMFCS levels I to III.91,93

Authors of the remaining tools(ie, BAPQ, CALI) could follow suit inextending the reach of their toolsto include all GMFCS levels. Forexample, through its design the CALIoffers great flexibility in allowingchildren and their parents to selectfrom a list of activities that havepersonal meaning. It also allows forthe identification of a child’s ownseries of activities, including bothambulatory and nonambulatoryevents. Further work could beundertaken to generate a prescribedlist of nonambulatory activitiestargeted at children in GMFCS levelsIV and V. Likewise, opportunities toexpand tool reach across the GMFCScontinuum were also noted withrespect to their assessmentapproach. The majority of toolsrecommended solely for GMFCSlevels I to III were evaluative,drawing attention to the need forfuture validation of discriminativetools to assist with thedetermination of presence orabsence of pain for thissubpopulation.

Due to the heterogeneous nature ofCP, selecting appropriate tools tomeet the assessment needs ofa specific child (ie, self-report,observational, or combination tools)can be challenging in clinicalpractice. A 1-size fits all approach isnot realistic; not all children with CPare able to self-report and not allchildren with CP requireobservational measures. The currentreview brings to light gaps in theassessment of chronic pain.However, simply calling fordevelopers to respond may not be

viable because tool developmenttakes years to accomplish.Therefore, the authors advocate forthe validation of existing chronicpain assessment tools with childrenof all GMFCS levels to advanceunderstanding of best practicerecommendations.

Previous research highlights theimportance of a “toolbox” to assistclinicians in selecting rigorous andclinically significant measurementtools for a range of clientele withCP.94 Furthermore, by forming anevidence-based toolbox, health careprofessionals from around the globecan use the same set of standardizedmeasures, bettering universalapproaches to care.94 Thus, anoutput of this work is the ChronicPain Assessment Toolbox forChildren with Disabilities (Availableat www.hollandbloorview.ca/toolbox). Included in the toolbox arethe 15 chronic pain assessment toolsidentified through this systematicreview and a compendium ofevidence-informed best practiceproducts intended to assist healthcare professionals in the assessmentof chronic pain in children withdisabilities. The toolbox includes the7 interference tools discussed hereinand 8 chronic pain coping tools,which have yet to be validated witha CP population and require furtherresearch to be generalized to meetthe needs of children with physicaldisabilities. Since 2013, the Toolboxhas been implemented in eightoutpatient clinics at HollandBloorview Kids RehabilitationHospital (Toronto, Ontario, Canada).The utility of the toolbox is currentlyundergoing a formative evaluation,with emphasis on developinga standard of practice for chronicpain interference assessment forchildren with CP.

A few considerations exist forapplication of the toolbox and futuredevelopment. The included toolsfocus on general chronic pain, assymptom-specific chronic pain tools

(eg, headache, abdominal pain) wereexcluded during the tool selectionprocess. This was done on the basisthat the toolbox in its current formencompasses a holistic approach tochronic pain assessment with manypossible sources and/or sites of pain.Future work may broaden the scopeas evidence validating the use ofsingle-scale tools (eg, the NumericalRating Scale) for chronic painassessment is emerging95; it mayalso consider the inclusion of non-English assessment tools, such as thePain Evaluation Scale for ClientsWith Cerebral Palsy.96

The strengths of this review includedthe comprehensive search strategy,which spanned articles publishedover 3 decades to identify tools withfew restrictions on special medicalconditions, broadening the scope ofretrieved articles beyond those thatmay have been selected if a strictCP-focus was taken. Moreover, a majorstrength was the evaluation of theclinical utility of tools by a group ofclinicians actively involved in servicesand care for children with CP. Althoughauthors were not able to shorten orrank the list of included tools on thebasis of psychometric properties andclinical utility, the provision of 7chronic pain interference tools ensuresthat all health care professionals haveaccess to a valuable resource to meetthe broad needs of their clients withCP, accounting for client-specificcommunication and gross motorabilities.

Moving forward, it is hoped thisresearch will foster conversationswith both tool-developers and end-users and help strengthen chronicpain assessment approaches forchildren across all GMFCS levels.With the growing emphasis ontoolbox development, it is alsohoped that considerations of theapplicability of this toolbox orsimilarly developed resourcesmight be extended to otherpopulations of children who mayalso have restrictions to cognition,

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communication, and/or physicalfunctioning. This will help ensureall children with disabilities willhave accurate chronic painassessments and attempts are madeto limit pain that interferes withtheir activities of daily living.

ACKNOWLEDGMENTS

We thank the interprofessionalworking group members whocontributed to this body of work. Firstand foremost, we would like to showour appreciation to Shawna Wade(Senior Director) for the opportunityto tackle this evidence-to-practice

gap. We thank Pui Ying Wong (HealthSciences Librarian) for her expertiseand guidance in the development andexecution of the search strategy, andAline Nizigama and Kelly Hanlon(Research Assistants) for theirassistance with data extraction. Wealso thank Bruno Geremia (FamilyLeader) and Crystal Chin (YouthLeader) for their support in the reviewand critique of pain tools. Lastly, wethank Ashleigh Townley (Evidence toCare Knowledge Broker) for hercontributions in the formation of theChronic Pain Assessment Toolbox forChildren With Disabilities.

ABBREVIATIONS

BAPQ: Bath Adolescent PainQuestionnaire

CALI: Child Activity LimitationsInterview

CP: cerebral palsyGMFCS: Gross Motor Function

Classification SystemNCCPC-R: Noncommunicating

Children’s PainChecklist-Revised

PPIS: Pediatric Pain InterferenceScale

PPP: Pediatric Pain ProfilePPQ: Pediatric Pain Questionnaire

Address correspondence to Shauna Kingsnorth, PhD, Evidence to Care, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Rd, Toronto, ON, M4G 1R8, Canada.

E-mail: skingsnorth@hollandbloorview.ca

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2015 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

FUNDING: All phases of this study were supported by the Holland Bloorview Kids Rehabilitation Hospital (Holland Bloorview) Foundation.

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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