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Academy of Oncologic Physical Therapy EDGE Task Force on Cancer

A Systematic Review of Outcome Measures for Pain in Children

Miale, Susan, PT, DPT1; Harrington, Shana, PT, PhD2; Brown, Kristin, PT, PDT3; Braswell, Ashley, PT, DPT4; Cannoy, Jill, PT, DPT5; Krisch, Nancy, PT, DPT6; Rock, Kelly E., PT, DPT7

doi: 10.1097/01.REO.0000000000000165
SYSTEMATIC REVIEW
Free
SDC

Background: Children with cancer can experience pain throughout their clinical course. Accurate assessment of pain can lead to more effective pain management.

Purpose: To identify outcome measures used to assess pain in children and to appraise each tool based on psychometric properties, clinical utility, and application to pediatric oncology.

Methods: The authors searched 3 electronic databases (MEDLINE, CINAHL, and SCOPUS), using specific search terms to identify measures used to evaluate pain in children with cancer. Of the 956 articles found, 270 were reviewed and 17 measures were identified for further assessment. Each outcome measure was reviewed by 2 independent reviewers, who then ranked each measure using the 4-point Cancer EDGE Task Force Outcome Measure Rating Scale. Discrepancies were discussed to reach consensus.

Results: The Wong-Baker FACES Pain Rating Scale is highly recommended (4). The Oucher Pain Scale, Adolescent Pediatric Pain Tool, and Pieces of Hurt Assessment Tool/Poker Chip Tool are recommended (3). Six additional tools are deemed reasonable to use (2) and 7 tools are not recommended (1).

Conclusions: Based on clinical utility, psychometric properties, and application to children with oncologic diseases, 4 outcome measures are recommended for the assessment of pain in children with a diagnosis of cancer.

1Board-Certified Pediatrics Clinical Specialist, Clinical Associate Professor, Doctorate in Physical Therapy Program, School of Health Technology & Management, Stony Brook University, Stony Brook, NY

2Board-Certified Sports Clinical Specialist, Department of Exercise Science, Physical Therapy Program, University of South Carolina, Columbia, SC

3Board-Certified Pediatrics Clinical Specialist, Hasbro Children's Hospital, Providence, RI

4Board-Certified Pediatrics Clinical Specialist, Seattle Children's Hospital, Seattle, WA

5Board-Certified Pediatrics Clinical Specialist, Children's Healthcare of Atlanta - Scottish Rite, Atlanta, GA

6School of Health Technology & Management, Stony Brook University, Stony Brook, NY

7Board-Certified Pediatrics Clinical Specialist, Children's National Health System, Washington D.C.

Correspondence: Susan Miale, PT, DPT, School of Health Technology & Management, Stony Brook University, Stony Brook, NY 11794 (susan.miale@stonybrook.edu).

The authors have no conflicts of interest to disclose.

In the United States, cancer is the second leading cause of death after accidents in children from 1 to 14 years of age.1 It is estimated that 10 590 children (≤15 years of age) in the United States will be diagnosed with cancer in 2018.1 More than 80% of children diagnosed with cancer survive 5 years or more due to advances in treatment over the past several decades.1 Even with the improved survival statistics, childhood cancer remains a potentially life-threatening condition and as such creates a significant challenge to both the family and the child.2 Given the improved survival rate, it is important to be familiar with the unique challenges faced during treatment of pediatric cancer.

One such challenge is pain related to pediatric cancer diagnosis and treatment. Children and adolescents diagnosed with cancer are a unique population because they most likely have never experienced chronic or recurring pain.3 Pain in this population has been reported to be significant and debilitating both during and after treatment.4 This pain is said to affect the quality of life not only of the child, but of the family as well.4 In recent years, advances in pain management in children and adolescents have been made.5 However, deficiencies in how best to manage the pain caused by cancer continue.6 In fact, Finley and colleagues6 report that despite significant strides in the field of pediatric pain management, inadequacies remain in actually tending to pain in children.

Accurate assessment is critical for effective and appropriate management of pain in children and adolescents with cancer.7 Pain measurement improves pain management.8,9 At this time, the literature is sparse in understanding pain in children and adolescents with cancer. In a review of the literature, Sutters and Miaskowski10 identified only 4 studies that focused exclusively on assessment of cancer pain in children. Hester7 agreed with Sutters and Miaskowski that few studies have focused on assessing pain in children and adolescents after a comprehensive review of the child pain literature for the Cancer Pain Management Guidelines Panel for the Agency for Health Care Policy and Research.

In recent years, there has been a renewed interest in examining pain in children and adolescents with cancer.11–18 Although measures exist to assess pain in children, few studies have appraised the psychometric properties and clinical utility of these outcome measures. To the authors' knowledge, no previously work has evaluated pain across a variety of childhood cancer populations or made recommendations regarding which outcomes have sound psychometric properties and good clinical utility. Therefore, the purpose of this review was to critically appraise pain outcome measures to provide recommendations on measures with sound psychometrics that are clinically useful to evaluate pain in children with a diagnosis of cancer.

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METHODS

The American Physical Therapy Association's (APTA's) Evaluation Database to Guide Effectiveness (EDGE) Task Force was formed within the Section on Research in 2006.19 Since that time, the Task Force has expanded to include several other Sections and Academies within the APTA, including the Academy of Oncologic Physical Therapy. The Pediatric Cancer EDGE Task Force was formed in 2017 with an initial focus on clinical outcome measures for pain assessment.

The authors systematically searched the literature for outcome measures that evaluated pain in children with cancer. Once a list of tools was generated, the group members reviewed each measure to assess both the psychometric properties and clinical utility. The authors conducted the primary search on July 31, 2017, in MEDLINE, CINAHL, and SCOPUS. The search strategy in MEDLINE used the following terms: “pain measurement”[MeSH] AND “neoplasms”[MeSH] AND (“humans”[MeSH Terms] AND English[lang] AND (“infant”[MeSH Terms] OR “child”[MeSH] OR “adolescent”[MeSH Terms])) and yielded 504 results. The search strategy in CINAHL used the following terms: ((MH “Cancer Patients”)) AND ((MH “Pain Measurement”)) with an English language filter and yielded 443 results. The search strategy in SCOPUS used the following terms: “pediatric oncology” OR “childhood cancer” AND “pain measurement” and yielded 92 results.

Two hundred and seventy articles met the inclusion criteria: (1) written in the English language, (2) a measure of pain was administered to a child or an adolescent (birth to 18 years), and (3) had a diagnosis of cancer. After reviewing these articles, the authors identified 67 outcome measures. Upon discussion, all measures associated with specific conditions or procedures, such as the Oral Mucositis Daily Questionnaire and the Breakthrough Pain Questionnaire for Children were excluded. Measures that assess behavior, such as the Pain Coping Questionnaire, were excluded and measures that assessed distress, such as the Observational Scale of Behavioral Distress, were excluded because of the multifactorial nature of distress. The authors also chose only to include measures that require the child to rate his or her own pain. Measures based on parent or caregiver report were excluded, with the exception of measures of infant pain. Finally, versions of the Numeric Rating Scale, Visual Analog Scale, or Faces scale that were not validated and only created and used for one specific study were also excluded. The remaining 17 outcome measures were reviewed by the authors (Figure 1).

Fig. 1

Fig. 1

Each outcome measure underwent a primary review by one of the authors. The Cancer EDGE Task Force Outcome Measure Rating Form was completed for each measure. This form contains details regarding psychometric properties such as reliability, validity, and sensitivity to change, as well as information on clinical usefulness such as the length of the questionnaire, the time required to complete and interpret the results, the cost, and the availability of the tool. On the basis of this information, the reviewers ranked each measure using the Cancer EDGE Task Force Outcome Measure Rating Scale (Table 1). The completed primary reviews were sent for a second review completed by a different author. Any discrepancies between reviewers were discussed to reach a group consensus.

TABLE 1

TABLE 1

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RESULTS

After a comprehensive review of the literature, 17 outcome measures that assessed pain in children with cancer were identified. One measure, the Wong-Baker FACES (WBF) Pain Rating Scale received the top ranking of 4 (highly recommended) by the task force. Three additional measures, the Adolescent Pediatric Pain Tool (APPT), the Oucher Pain Scale, and the Pieces of Hurt Pain Assessment Tool (Poker Chip Tool), received a ranking of 3 (recommended). Six tools received a score of 2 (reasonable to use) and 7 tools received a score of 1 (not recommended). The ratings of the 17 outcome measures reviewed are presented in Table 2.

TABLE 2

TABLE 2

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DISCUSSION

The purpose of this review was to identify evidence-based pain assessment tools used in pediatric oncology and to rate them on the basis of psychometric properties and clinical utility using the Cancer EDGE Task Force Outcome Measure Rating Scale. Details regarding the highly recommended (4) and recommended measures (3) are provided in this discussion. Clinical usefulness of these measures is depicted in Table 3. The measures deemed reasonable to use (2) and not recommended (1) will also be briefly discussed. The clinical utility of these measures is presented in Table 4.

TABLE 3

TABLE 3

TABLE 4

TABLE 4

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EDGE Rating: 4 (Highly Recommended)

Wong-Baker FACES Pain Rating Scale. The WBF Pain Rating Scale uses a sequential series of 6 facial expressions to measure pain intensity in children from age 3 to 18 years.20 Children are told that each face represents a person who has a different level of pain.20 They are asked to choose the face that best matches their current pain.20 The WBF takes seconds to complete and is copyrighted but available at no cost to individual health care providers.20

The WBF was initially validated in hospitalized children.21 It has also been validated specifically for children in the emergency department,22 children with hematologic and oncologic diagnoses who have undergone painful procedures,23 African-American children,24 and children with physical disabilities.25 The Spearman correlation between the WBF the Visual Analog Scale (VAS) is high (ρ = 0.90).22 In children with physical disabilities, the WBF is strongly associated with the Numerical Rating Scale (r = 0.79) and with a verbal rating scale of bodily pain (r = 0.52-0.56), but the authors report that children tend to report higher levels of pain on the WBF than on other measures and state that this may decrease the validity of the tool.25

Children with hematologic and oncologic diagnoses demonstrate a high test-retest reliability (r = 0.90) using the WBF after a 15-minute time lapse when undergoing painful procedures.23 Garra et al22 report that the VAS increases uniformly across WBF categories in approximately 17 mm increments. The minimum clinically significant change for the VAS has been shown to be 10 mm for children with acute pain.22 The results of this study indicate that a change in one category on the WBF would be clinically significant, but this requires further testing.22

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EDGE Rating: 3 (Recommended)

Adolescent Pediatric Pain Tool. The APPT is modelled after the McGill Pain Questionnaire for use with children and adolescents aged 8 to 17 years.15 It is a paper-and-pencil tool that assesses 3 dimensions of pain: location, intensity, and quality. Location is measured by a body outline diagram in which the child is instructed to mark which areas are painful.15 Intensity is measured using a 100-mm word graphic rating scale that includes the following phrases: no pain, little pain, medium pain, large pain, and worst possible pain.15 The child is instructed to draw a vertical line somewhere along this horizontal scale to illustrate how much pain is present.15 Last, there is a list of descriptor words that describe sensory, affective, evaluative, and temporal qualities of pain.15 The child is instructed to circle all of the words that describe his or her pain.15 There is also a blank space for the child to write other descriptor words if desired.15 A large cohort of healthy and hospitalized children, including some with cancer, assisted in generating the words for the pain descriptor section of this tool.26

Scoring the APPT provides the individual with 5 subscale scores. The first subscale is pain location and is calculated by counting the number of pain sites marked on the body outline diagram.15 The second subscale is pain intensity and is calculated by using a 10-cm ruler to measure where the child placed his or her line on the word graphic rating scale.15 The third subscale is pain quality that is calculated by counting the number of sensory, affective and evaluative pain descriptor words circled by the child.15 The fourth subscale is temporal pain quality and is calculated by counting the number of temporal pain descriptors identified.15 Finally, adding both pain quality subscales provides a total pain quality subscale score.15

The APPT has been used and validated as a multidimensional measure of child and adolescent pain in a wide variety of conditions.15,26,27 Because this tool does not produce a total score, the APPT in its entirety has not been validated, but each dimension of the tool (location, intensity, quality) has demonstrated adequate reliability and validity independently.15,26,27 Several researchers have used the APPT to assess pain in children with hematologic and oncologic diseases as it is one of the only measures to address the quality of a child's pain.15,26 Responsiveness data have not been reported.

Oucher Pain Scale. The Oucher is a tool consisting of 2 scales used to help children report the intensity of their pain.28 The first scale is a numerical scale for use with older children that ranges from 0 to 10.28 The second scale is for younger children and includes 6 photographs of children in sequential states of distress.28 The photographs are on a poster that has the numerical scale aligned with the pictures.28 A seriation task is used to determine which scale is appropriate for use with the child, based on the level of cognition, and must be performed in order for the Oucher to be valid.28 Following this task, the appropriate Oucher scale is introduced to the child. The Oucher is explained and the child is asked to point to the picture or the number that best describes the pain they are feeling. Photographs correspond to even numbers on the 0 to 10 scale.28

The original (Caucasian) Oucher was developed for children aged 3 to 12 years.28 Children were able to correctly sequence the faces of the Oucher (Kendall's Coefficient of Concordance = 0.726) indicating content validity.29 Moderate to high correlations were also found between the Oucher and the Poker Chip Tool and with a visual analogue scale (gamma coefficient = 0.695-0.978) indicating construct validity.30–32 Finally, the Oucher has demonstrated moderate levels of test-retest reliability (r = 0.529 to 0.722).33 Currently, several Oucher scales have been developed to obtain higher degrees of cultural sensitivity. These scales include African American, Hispanic, Asian-Boy, Asian-Girl, First Nations-Boy, and First Nations-Girl.28 All versions of the Oucher have undergone psychometric testing and have demonstrated acceptable validity and reliability.28 Interestingly, the authors suggest that the child should self-select the Oucher scale that he or she identifies with. The caregiver should not choose for the child.28

Pieces of Hurt Pain Assessment Tool/Poker Chip Tool. The Pieces of Hurt Tool is an ordinal graphic rating scale.34 The current version of the tool is composed of 4 red poker chips.35 The original description instructs the patient as follows: “I want to talk with you about the hurt you may be having right now, and ask do you have any pain right now?”34 If the child says “no,” zero is recorded for the amount of pain whereas if the child says “yes,” they are given 4 poker chips.34 The child is then told, “these are pieces of hurt—one chip is a little hurt, and four chips are the most hurt you could ever have. Do you have one, two, three or four pieces of hurt?”34 Alternatively, health care professionals may align the chips in front of the child on a flat surface and explain, using simple terms, that the chips are pieces of hurt. The child is asked how many pieces of hurt they have right now.36 Other authors have gone into more detail about what each chip represents. For example: 1 chip indicates a little hurt, 2 chips symbolize a little more, 3 chips represent even more hurt, and 4 chips are the most hurt the child has ever experienced.37 Another adapted version of the Pieces of Hurt Tool consists of 1 white chip that represents no pain and 4 red chips that represent a pain level of 1 to 4.38 Last, the Multiple Size Poker Chip Tool uses chips of increasing size to evaluate the amount of pain perceived by the child.39 It has been discussed that in busy clinical settings, poker chips might not be readily available and other objects may be used to represent pieces of hurt, such as stars or triangles made of foam. These have been found to be interchangeable.35

The Pieces of Hurt Tool has been used to assess pain in children ranging from 3 to 18 years of age40 in a variety of pediatric clinical environments including pediatric postoperative, postprocedural, hematology/oncology clinics, and intensive care units.40 It is one of the only tools used in preschool-aged children with established reliability and validity for acute procedural and postoperative pain.40 This pain scale has even been recommended by the Task Force on Acute Pain of the International Association for the Study of Pain (IASP) for children 4 years and above, due to its wide use and comprehensive validation.41

The Pieces of Hurt Tool has evidence of test-retest reliability over 1-day21 and 8-hour42 time periods. This tool has strong evidence of convergent validity (r = 0.74–0.98) with other well-established pain intensity measures, including the Oucher,30,31 visual analogue scale,43 WBF,42 Faces Pain Scale,44 and verbal responses and vocal behaviors from an observational behavioral measure.34 The Pieces of Hurt Tool has some evidence of discriminant validity (c = 0.004–0.039) in that it has demonstrated low correlations with measures of fear31 and low to moderate correlation with pain affect.39

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EDGE Rating: 2 (Reasonable to Use)

Six measures of pain were deemed reasonable to use by the task force. Although these tools may demonstrate good clinical utility (Table 4), the authors did not recommend or highly recommend these tools for the reasons highlighted below. The Brief Pain Inventory was developed to measure pain in adults with cancer and has been used in those as young as 18 years.45 However, this tool has not been validated in the pediatric population and can therefore not be given a higher ranking despite its relevance to oncology. The COMFORT Behavior Scale is used to measure pain in infants and young children aged birth to 3 years and appears to have sound psychometric properties and good clinical utility.46 There are no studies regarding the use of or validity of this tool in infants with cancer, but it remains a viable option for those under age 3 as none of the recommended or highly recommended measures are appropriate for this age group.

The Visual Analog Scale and the Numeric Rating Scales demonstrate good psychometric properties and clinical utility in the adult and young adult populations but have less impressive psychometric properties or limited study in pediatrics and a lack of research in pediatric oncology.47,48 The Faces Pain Scale-Revised and the Pediatric Pain Questionnaire are the final 2 measures deemed reasonable to use. They both demonstrate good psychometric properties and clinical utility in children but have had inadequate study thus far in the pediatric oncology population.8,40,49,50

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EDGE Rating: 1 (Not Recommended)

The task force did not recommend the use of 7 measures. The Preschool and Adolescent Body Outlines do not measure pain intensity and would therefore need to be combined with another measure to accurately reflect a child's pain.11 The Color Analogue Scale has been shown to be valid and reliable in the acute care setting, but the authors were unable to locate the tool.51 Because of this difficulty in acquiring the sliding scale tool, the measure is not recommended. Similarly, the Rainbow Pain Scale could not be located and does not demonstrate adequate validity and reliability testing.52 The Faces, Legs, Activity, Cry and Consolability (FLACC) Behavioral Pain Assessment Scale has been used extensively with infants and children, but it is based on caregiver report, not child self-report.53 Also, a recent systematic review uncovered limited and conflicting data regarding psychometric properties of the tool that do not support its use at this time.54 The Pain Squad APP for the iPhone or iPad appeared promising as it was developed for measuring pain in children with cancer.55 However, it only allows pain to be recorded at specific times and therefore does not seem appropriate for use during individual therapy sessions. Finally, the McGill Pain Questionnaire and the Iowa Pain Thermometer demonstrate sound psychometric properties and clinical utility with adults, but have limited study in children.56,57 They are therefore not recommended for use at this time.

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LIMITATIONS

The authors recognize that new studies may have been published since the date of this literature search (July 31, 2017). There may be outcome measures that have been excluded from this review because of limited data available at the time. Similarly, a measure may have been given a lower rating score because of lack of study in the target population that has since been rectified. This search was limited to English-language journals, which could also limit the number of measures reviewed. This review did not assess the quality of study methodology, so it is possible that some psychometric data are flawed.

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CONCLUSION

Pain is extremely common in children with cancer.17 Accurate pain assessment leads to pain intervention.8,9 Therefore, assessing pain is of vital importance, especially in pediatric oncology. Identifying the most appropriate outcome measure for pain by finding the best available evidence and combining this with clinical expertise and patient characteristics is the key to best practice, both in research and in the clinic.58 This Task Force has highly recommended the use of the WBF Pain Rating Scale, and has recommended the use of the Oucher Pain Scale, the Adolescent Pediatric Pain Tool, and the Pieces of Hurt Pain Assessment Tool/Poker Chip Tool to measure pain in children with cancer. These recommendations should be considered in conjunction with the limitations discussed above. Clinicians and researchers should use these results as a guide to assist with clinical decision-making.

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Keywords:

cancer; children; pain measurement

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