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Journal of Pain and Symptom Management

Vol. 23 No. 2 February 2002

Original Article

Assessment of Sickle Cell Pain in Children and Young Adults Using the Adolescent Pediatric Pain Tool
Linda S. Franck, PhD, RN, RGN, RSCN, Marsha Treadwell, PhD, Eufemia Jacob, RN, MS, PhD(c), and Elliott Vichinsky, MD
Great Ormond Street Hospital for Children NHS Trust (L.S.F.), Kings College, London United Kingdom, and Childrens Hospital (M.T., E.J., E.V.), Oakland, California, USA

Abstract The objectives of this study were to describe and compare the characteristics of pain experienced by children and young adults with sickle cell disease (SCD) in inpatient and outpatient settings. The Adolescent Pediatric Pain Tool (APPT), a multidimensional self-report pain assessment, was completed by African American children and young adults (mean age 15.39 4.32) with SCD during a clinic visit (n 52), day hospital visit (n 29), or during the rst 24 hours of an inpatient stay (n 72). Multiple linear regression revealed that pain intensity, number of body areas with pain, and the quality of pain were related to age, sex, and care setting. Pain intensity, location, and quality were of greater magnitude than previous reports of early postoperative pain in children. Examining the specic dimensions of pain intensity, location, and quality and the inuencing factors of age, sex, and care setting may lead to more effective treatments for SCD pain. J Pain Symptom Manage 2002;23: 114120. U.S. Cancer Pain Relief Committee, 2002. Key Words Sickle cell disease, pain assessment, children

Introduction
Pain is a common and severe symptom of sickle cell disease (SCD) and is the major reason that patients seek health care services.14 Sickle cell disease pain may be acute and chronic, varying in intensity, location, quality, and temporal pattern. It is associated with lifethreatening exacerbation of the disease4 and has emotional and psychological significance,

Address reprint requests to: Linda S. Franck, School of Nursing & Midwifery, Kings College London & Great Ormond Street Hospital for Children NHS Trust, Directorate of Nursing, Great Ormond Street, London WC1N 3JH, United Kingdom. Accepted for publication: June 2, 2001.
U.S. Cancer Pain Relief Committee, 2002 Published by Elsevier, New York, New York

affecting quality of life.5,6 Sickle cell disease pain is complex and its characteristics cannot be adequately assessed by a numeric rating of pain intensity. Clinicians require more robust assessment tools in order to describe the pain and determine efficacy of treatment.7 Lack of understanding of the characteristics of SCD pain may contribute to mistrust, stigmatization, and excessive control by health professions of patients pain management, leading to both over- and undertreatment of pain.8 The goals of pain assessment are to quantify and observe the patients pain status and related experiences over time and to document the efficacy of interventions.9,10 Standards for the assessment and management of SCD pain have been published in recent years in re0885-3924/02/$see front matter PII S0885-3924(01)00407-9

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sponse to the need for guidelines for practitioners.1113 These guidelines recommend use of standard pain measures and regular, documented assessment as the first step in pain management. Our previous research has demonstrated that a quality improvement approach that includes education and ongoing monitoring can lead to substantial and sustained improvement in the use of standardized pain assessment in the pediatric hematology/oncology setting.14 Nevertheless, it has proved difficult to ensure that comprehensive and consistent pain assessment and treatment is provided to patients in all health care settings.15 Beginning in 2001, inpatient and outpatient health care settings seeking accreditation by the Joint Commission of Accreditation of Health Care Organizations (JCAHO) in the United States are expected to meet standards that ensure all clients receive appropriate pain assessment during each episode of care.16 The Adolescent Pediatric Pain Tool (APPT) is a multidimensional pain assessment instrument that has demonstrated validity and clinical utility for children and adolescents in hospital settings.1720 The purpose of this investigation was to describe the characteristics of pain experienced by children and young adults with SCD and to compare the pain experienced in inpatient and outpatient settings. We hypothesized that the pain intensity, location, and quality characteristics of SCD pain would vary depending on heath care setting.

ity (84%) had hemoglobin SS phenotype, 8.9% had hemoglobin SC phenotype, and 7.7% had hemoglobin sickle beta thalassemia phenotype. Inpatients were admitted for a mean of 6.35 days ( 4.05; range 1 to 24 days). The primary reason for inpatient admission was painful vaso-occlusive episode. The day hospital unit operates as an alternative care setting for patients experiencing uncomplicated painful episodes. Patients receive intravenous fluids and pain medication for up to 8 hours during the day. Clinic visits were pre-scheduled for routine examinations or for uncomplicated symptom management. Day hospital or clinic visits were included in the sample only if the participants were discharged home and not admitted to the inpatient unit.

Adolescent Pediatric Pain Tool

The Adolescent Pediatric Pain Tool (APPT) is a multidimensional pain instrument for children and adolescents. It consists of three components: 1) a body outline, 2) a 100-mm visual analog scale with 5 equidistant pain intensity word anchors (i.e., word-graphic scale), and 3) a pain quality word descriptor list. The validity and reliability of each component of the APPT was established in a series of studies with multiethnic healthy and ill children, ages 8 to 18.1720 During the clinic or day hospital visit, or daily for inpatient admissions, all English literate children and young adults were asked to complete the APPT by nurses as part of the hospital quality improvement project. At the time that these data were collected, the data from the APPT assessments were used to establish baseline characteristics of pain in the populations served by the hospital. These data were not used to guide individual patient pain management. Children and young adults on the inpatient units received intravenous (IV) opioid analgesia for their complaints of pain according to the hospital clinical practice guideline for vaso-occlusive pain (available upon request). In the clinic and day hospital setting, pain was managed according to clinician judgement.

Methods
Participants and Setting
This investigation was conducted as part of a quality improvement project to implement standardized pain assessment for all clients served by a large tertiary care childrens hospital on the West Coast of the United States.14 Children and young adults with SCD were asked to complete the APPT while receiving health care in an outpatient or inpatient setting. A total of 56 African American children and young adults (mean age 15.39 4.32; 26 males and 30 females) completed 153 APPT assessments during a clinic visit (n 52), day hospital visit (n 29), or within the first 24 hours of an inpatient admission (n 72). Demographic characteristics of the children and young adults are shown in Table 1. The major-

Statistical Analyses
The APPT from the first day of admission only was used in the analysis. Each component of the APPT was scored separately. First, the total number of body areas with pain was counted using a clear plastic template overlay divided

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Table 1 Patient Characteristics by Site of Care

Clinic Age (mean SD) Sex (n) Male Female Reason for visit (n) Vaso-occlusive episode Routine visit Avascular necrosis Pneumonia/acute chest Infection Skin ulcers Ovarian cyst 17.40 26 26 23 20 7 1 1 3.92 Day Hospital 18.69 9 20 25 4 3.63 Inpatient 16.07 24 48 59 3 4 4 2 4.05

into 43 body segments. Second, pain intensity was measured in millimeters (0 to 100) from the left of the word graphic scale to the participants mark. Third, the total number of pain descriptors and the percentage of sensory, affective, evaluative, and temporal words were calculated.20 Descriptive statistics were calculated for each component of the APPT by setting of care. Pain characteristics were compared with respect to site of care and participant characteristics of age and sex using univariate analysis of variance (ANOVA). Multiple linear regression was used to predict pain characteristics.

Results
Pain characteristics of children and young adults with SCD are shown by setting of care in Table 2. Univariate ANOVA indicated that pain characteristics varied based on age, sex, and setting of care (P 0.05). Girls tended to report higher pain intensity (P 0.07), more body areas with pain (P 0.001), and used more word descriptors to describe the quality of their pain (P 0.01). Older children and young adults

reported more body areas with pain (P 0.001) and used more evaluative and temporal words to describe their pain (P 0.02, P 0.04). Patients seen in the day hospital reported pain in more body areas (P 0.03) than patients seen in the clinic and used more temporal words to describe their pain (P 0.03) than patients seen in the inpatient setting. Multiple linear regression revealed main effects on pain location of age, sex and setting of care (F 11.37, df 150, P 0.001); main effects on pain intensity score of age and setting of care (F 5.07, df 146, P 0.007); main effects on evaluative pain quality words of sex (F 3.41, df 144, P 0.001), and main effects on temporal pain quality words of sex and setting of care (F 6.84, df 144, P 0.001). Examination of the APPT for patients who were seen in more than one setting of care during the study period revealed that the number of body areas with pain was moderately to highly correlated across the three settings (Spearmans rho 0.550.81, P 0.020.001). Pain intensity scores were only correlated between the clinic and day hospital settings (Pearsons Prod-

Table 2 Pain Characteristics by Site of Carea

Clinic Body Area Pain Intensity Sensory words (%) Affective words (%) Evaluative words (%) Temporal words (%)c
aMean bClinic

Day Hospital 10.23 6.99 19.73 15.15 50.04 33.08 8.82 1.56 11.88 12.60 34.52 19.26

Inpatient 7.85 6.88 18.34 17.10 39.65 22.36 7.78 2.05 11.74 19.03 30.42 13.38

(no.)b

5.86 5.92 18.59 16.23 39.53 30.71

4.59 2.62 16.47 23.82 27.09 29.55

cInpatient

SD. Day Hospital, P 0.03. Day Hospital, P 0.03.

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uct Moment r 0.712, P 0.009). There was no relationship between pain intensity during the first inpatient day and length of hospital stay. Further analysis of the body areas with pain indicated similarities and differences in the location of pain most commonly reported in the three settings of care (Figure 1). Pain was reported for each area of the body diagram by at least three patients. Many patients (33% to

68%) reported chest, upper and lower back, and leg pain, regardless of care setting. Day hospital patients more frequently reported leg and arm pain. Longer length of inpatient hospital stay was associated with more body areas with pain (r 0.24, P 0.05). There were similarities and differences in the words used by patients in the three settings to describe their pain (Table 3).The same sen-

Fig. 1. Most common body areas with pain (percent reporting).

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sory, affective, and emotional words were used most frequently by patients in each setting. There was less consistency in the temporal words used by patients in the different settings.

Discussion
These data provide the first systematic multidimensional comparison of the characteristics of SCD pain in children and young adults in different settings of care. The findings from this study indicate the pervasiveness of pain of SCD patients across all settings. Furthermore, the magnitude of pain was greater than previously reported for children during the first postoperative day with respect to intensity (6.73 2.22 vs. 5.84 2.5), number of body areas (7.69 7.61 vs. 3.0 2.8), and number of words used to describe pain (21.19 13.50 vs. 8.7 7.8).20 Variations in predominate location of pain based on setting of care may be related to disease or medical procedures. However, these findings must be interpreted with caution due to the lack of complete independence between the groups. Differences in SCD pain characteristics related to age and sex have been suggested by previous research. Several studies of children with SCD pain managed in the home setting reported differences in pain related to age. Two studies10,21 have found that older children reported higher levels of pain than younger children. However, Shapiro and colleagues11 found that older children had longer painful episodes but no differences in frequency or in-

tensity of pain based on age. Some studies have found differences in pain11 and pain coping strategies22,23 between males and females, as well as among caregivers of children.24 Baum and colleagues25 found an interaction effect on pain between age and sex, noting sharp increase in the incidence of painful episodes for males ages 15 to 25 with no age related change for females in that age group. The present findings of age and sex differences in pain location and quality must be interpreted with caution because data on procedures and treatment of individual patients were not recorded and may have influenced pain characteristics based on age, sex, or setting of care. Our findings regarding the distribution of SCD pain are consistent with previous reports in hospitalized adults26 and adults and adolescents in a clinic setting27 that found lower back pain to be the most common location of pain, followed by the abdomen, legs, and chest. Our findings support those of Sporrer and colleagues10 that children with diffuse pain had longer lengths of stay, however we did not find that higher pain scores were associated with longer length of stay. The APPT provides children and young adults with a systematic method for describing the characteristics of their pain and provides clinicians with more objective measures for determining the effectiveness of pain relief interventions. Routine assessment of pain in all healthcare settings is now mandated by the JCAHO.15 The findings from this study suggest the feasibility of implementing routine multidimensional

Table 3 Most Frequently Used Words to Describe Sickle Cell Disease Pain
Clinic (%) Sensory words Aching (50) Hurting (50) Throbbing (48) Pressure (42) Awful (33) Dizzy (29) Crying (27) Uncomforable (58) Miserable (44) Annoying (42) Bad (40) Sneaks up (40) Continuous (33) Off and on (33) Comes suddenly (31) Day Hospital (%) Hurting (62) Aching (59) Throbbing (52) Pressure (52) Awful (59) Crying (38) Dizzy (21) Uncomfortable (66) Bad (59) Annoying (55) Miserable (45) Continuous (59) Constant (45) Steady (41) Inpatient (%) Hurting (51) Throbbing (49) Aching (43) Pressure (33) Dizzy (31) Crying (25) Awful (24) Uncomfortable (63) Annoying (46) Bad (33) Miserable (32) Steady (29) Constant (26) Comes and goes (26)

Affective words Evaluative words

Temporal words

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pain assessment in clinic, day hospital, and inpatient settings. Consistent use of the same tool across settings of care may have additional advantages, particularly for patients with complex pain, such as SCD pain, who are cared for in multiple settings. Future research is needed to test the efficacy of analgesia and cognitive, behavioral, and physical pain-relieving interventions. Most painrelief trials in children have used pain intensity as the sole outcome measure. Multidimensional assessment of pain during such trials may reveal that some interventions are effective in altering the quality or location of pain, which may be of equal or greater importance to the client than reducing pain intensity alone. Other dimensions of the pain experience such as mood and analgesic side effects (e.g., sedation) should also be assessed. By examining the specific dimensions of pain intensity, location, and quality, more effective treatments for SCD pain can be developed tailored specifically for different heath care settings and individual patients.

pact of sickle cell pain on child and family quality of life. Fifth International Symposium on Paediatric Pain, London June 1821, 2000. 7. Beyer J. Judging the effectiveness of analgesia for children and adolescents during vaso-occlusive events of sickle cell disease. J Pain Symptom Manage 2000;19(1):6372. 8. Maxwell K, Streetly A, Bevan D. Experiences of hospital care and treatment seeking for pain from sickle cell disease: qualitative study. BMJ 1999;318: 15851590. 9. Beyer J, Platt A, Kinney T, et al. Assessment of pain in adults and children with sickle cell disease. In: Shapiro B, Schechter N, Ohene-Frempong K, eds. Sickle cell disease related pain: assessment and management conference proceedings. Mt. Desert, ME: New England Regional Genetics Groups, 1994:1026. 10. Sporrer KA, Jackson SM, Agner S, et al. Pain in children and adolescents with sickle cell anemia: a prospective study utilizing self-reporting. Am J Pediatr Hematol/Oncol 1994;16(3):219224. 11. Shapiro B, Dinges D, Orne E, et al. Home management of sickle cell related pain in children and adolescents: natural history and impact on school attendance. Pain 1995;61(1):139144. 12. Benjamin LJ, Dampier CD, Jacox A, et al. Guidelines for the management of acute and chronic pain in sickle-cell disease. Glenview, IL: American Pain Society, 1999. 13. Beyer JE, Platt AF, Kinney TR, et al. Practice guidelines for the assessment of children with sickle cell pain. J Soc Pediatr Nurs 1999;4(2):6173. 14. Treadwell M, Franck LS, Vichinsky E. Using quality improvement strategies to enhance pediatric pain assessment. International Journal for Quality in Health Care (in press). 15. American Pain Society Quality of Care Committee. Quality improvement guidelines for the treatment of acute pain and cancer pain. JAMA 1995; 274:18741880. 16. Joint Commission on Accreditation of Healthcare Organizations. Standards for pain management; retrieved on August 3, 1999. Available at http: //www.jcaho.org/standards/pm. 17. Savedra MC, Tesler MD, Holzemer WL, et al. Adolescent pediatric pain tool (APPT) preliminary users manual. San Francisco: University of California, 1989. 18. Wilke DJ, Holzemer WL, Tesler MD, et al. Measuring pain quality: validity and reliability of childrens and adolescents language. Pain 1990;41: 151159. 19. Tesler MD, Savedra MC, Holzemer WL, et al. The word-graphic rating scale as a measure of childrens and adolescents pain intensity. Res Nurs Health 1991;14:361371. 20. Savedra MC, Holzemer WL, Tesler MD, et al. Assessment of postoperation pain in children and ado-

Acknowledgments
This study was supported in part by a grant from the Sickle Cell Disease Program, Heart, Lung and Blood Institute, National Institutes of Health, to the Northern California Comprehensive Sickle Cell Center (HL 20985); and by the Pediatric Clinical Research Center, Childrens Hospital Oakland (5 M01 RR01271).

References
1. Brozovic M, Davies SC, Brownell AI. Acute admissions of patients with sickle cell disease who live in Britain. Br Med J 1987;294:12061208. 2. Ballas, S. Sickle cell pain. Progress in pain research and management, vol. 11. Seattle, WA: International Association for the Study of Pain, 1998. 3. Platt O, Thorington B, Brambilla D, et al. Pain in sickle cell disease: rates and risk factors. New Engl J Med 1991;325(1):1116 4. Vichinsky EP, Neumayr LD, Earles AN, et al. Causes and outcomes of the acute chest syndrome in sickle cell disease. N Engl J Med 2000;342(25): 18551865. 5. Fuggle P, Shand PAX, Gill LJ, Davies SC. Pain, quality of life, and coping in sickle cell disease. Arch Dis Child 1996;75(3):199203. 6. Palermo TM, Schwartz L, McGowan K, et al. Im-

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lescents using the Adolescent Pediatric Pain Tool. Nursing Res 1993;42:59. 21. Connor-Warren R. Pain intensity and home pain management of children with sickle cell disease. Issues Compr Pediatr Nurs 1996;19(3):183195. 22. Gil K, Abrams M, Phillips G, Williams D. Sickle cell disease pain. II: Predicting health care use and activity at nine-month follow-up. J Consul Clin Psych 1992;60:267273. 23. Gil K, Phillips G, Webster D, et al. Experimental pain sensitivity and reports of negative thoughts in adults with sickle cell disease. Behav Ther 1995;26: 273294.

24. Hill S, Zimmerman M. Valiant girls and vulnerable boys: the impact of gender and race on mothers caregiving for chronically ill children. J Marriage Family 1995;57(1):4353. 25. Baum K, Dunn D, Gillian H, Serjeant G. The painful crisis of homozygous sickle cell disease: a study of risk factors. Arch Intern Med 1987;147:12311234. 26. Ballas SK, Delengowski A. Pain measurement in hospitalized adults with sickle cell painful episodes. Ann Clin Lab Sci 1993;23(5):358361. 27. Sergeant GR, Ceulaer CDE, Lethbridge R, et al. The painful crisis of homozygous sickle cell disease: clinical features. BMJ 1994;87:586591.