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PEDIATRIC ANESTHESIOLOGY

A Clinical Profile of a Cohort of Patients Referred to an Anesthesiology-Based Pediatric Chronic Pain Medicine Program

From the Department of Anesthesia, Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, Indiana.

Address correspondence to Thomas R. Vetter, MD, Department of Anesthesiology, University of Alabama at Birmingham, JT 865, 619 19th Street South, Birmingham, AL 35249. Address e-mail to tvetter{at}uab.edu.

Abstract

BACKGROUND: Pediatric chronic pain is very common and results in significant health care costs. Pediatric chronic pain is both an individual and a public health concern. The primary objective of this study was to generate a descriptive clinical profile of the patients referred to an anesthesiology-based pediatric chronic pain medicine program. This patient profile was intended to serve as a surrogate for a more formal population needs assessment.

METHODS: A quantitative observational study design was applied. The independent study variables included the primary pain-related diagnosis, duration of pain symptoms, patient age, patient sex, insurance status, an intact biological family unit, fulltime school attendance, home schooling, and comorbid depression and/or anxiety. Using a series of previously well-validated measurement instruments, the dependent study variables included self-reported chronic pain intensity, self-reported and parent proxy-reported health-related quality of life, adverse family impact, and parental satisfaction. Study data collection occurred at the time of the first visit to the pediatric chronic pain medicine clinic but before interacting with any health care provider.

RESULTS: The enrolled patients (n = 100) were predominantly adolescent females, whose chronic pain had persisted for >1 yr and whose pain was frequently accompanied by clinically significant anxiety and depression. As compared with national and state norms, a significantly disproportionate percentage had a nonintact biological family unit (P < 0.001), was not attending school fulltime (P < 0.001), and was intentionally being home-schooled (P < 0.001). Ninety-five percent of the present cohort of patients had previously been under the care of at least one other subspecialist for their chronic pain condition. The mean initial patient self-reported and initial parent proxy-reported health-related quality of life scores (PedsQL Total Score) were also significantly lower than the PedsQL Total Score values previously observed in pediatric rheumatology patients (P < 0.0001), pediatric migraine patients (P < 0.0001), and pediatric cancer patients (P < 0.0001).

CONCLUSIONS: Pediatric chronic pain patients previously under the care of another subspecialist and subsequently referred to an anesthesiology-based pediatric chronic pain medicine program seemed to be experiencing significantly worse health-related quality of life. The routine assessment of chronic pain-related pediatric health-related quality of life seems feasible and worthwhile. Attention also needs to be focused on consistently addressing the strength of a patient's coping mechanisms, the presence of pain-promoting versus pain-reducing parental behaviors, and preexisting parental pain and disability.

Pediatric chronic pain is very common. Two large-scale epidemiologic studies have observed a 25% to 46% prevalence of pain of at least 3 mo duration in 10 to 18-yr-olds.1,2 Children and adolescents with chronic pain use various health care services and require prescription analgesic medications at a significantly greater rate than their healthy peers.3,4 Pediatric chronic pain is thus both an individual patient and a public health concern.

Pediatric chronic pain is a complex experience,5–7 which is often difficult for patients and their parents to describe fully using only a self-reported or observational unidimensional pain intensity scale.8,9 In contrast to more objective clinical assessments, the measurement of health-related quality of life provides more subjective yet equally important information about the adverse effects of a chronic disease, especially one associated with pain and disability.10 The metric of health-related quality of life can also provide clinicians with additional practical information that can be incorporated into the chronic pain treatment options presented to patients and their families.11,12 Despite the attendant methodological challenges, the assessment of health-related quality of life is a vital element of pediatric outcomes research.13

The primary objective of this study was to generate a descriptive clinical profile of the cohort of patients referred to an anesthesiology-based pediatric chronic pain medicine program. This patient profile was intended to serve as a surrogate for a more formal population needs assessment. This quantitative observational study focused on (a) patient self-reported chronic pain intensity; (b) patient self-reported and parent proxy-reported health-related quality of life; (c) the adverse impact of the patient's chronic pain condition on the family; and (d) parental satisfaction with the previous chronic pain treatment provided.

METHODS

Protection of Human Subjects
This study was approved by the Office of Research and Sponsored Programs at the Indiana University School of Medicine. The study complied with all privacy regulations set forth by Health Insurance Portability and Accountability Act. All collected clinical data became part of each study subject's permanent medical record. The present data were collected principally for nonresearch purposes (i.e., for routine medical diagnosis and treatment). Therefore, under the Common Rule, a waiver of parental consent for study participation and for parental authorization of release of medical information was obtained.

Study Population and Study Sample
The eligible study subjects were outpatients from 2 yr to 21-yr-of-age residing in the geographic catchment area of the Riley Hospital for Children. The convenience study sample represented all such patients who were sequentially referred to and evaluated by the multidisciplinary, yet primarily anesthesiology-based, Riley Pediatric Chronic Pain Medicine Program from its inception in October 2005 through May 2007. The Riley Pediatric Chronic Pain Medicine Program only accepted new patients by way of a direct referral from either their primary care physician or another subspecialist physician. Therefore, only outpatients with a chronic pain-related diagnosis were enrolled as study subjects.

Study Variables and Data Collection
A broad definition of an independent (intervening) variable that included any predictors, antecedents, presumed causes or influences, or participant attributes was applied.14 The 10 independent study variables were the primary chronic pain-related diagnosis International Classification of Diseases, Ninth Revision (ICD-9 coding), duration of pain symptoms (months), patient age (years), patient sex (male/female), insurance status (Medicaid/private commercial), an intact biological family unit (yes/no), fulltime school attendance if the patient was of school-age (yes/no), intentional home schooling if the patient was of school-age (yes/no), and comorbid depression (none/ moderate/severe) and/or anxiety (none/moderate/ severe). Baseline measurement of all independent study variables occurred at the first visit to the pediatric chronic pain medicine clinic but before interacting with any health care provider.

The four dependent (outcome) study variables were the patient's pain intensity, the patient's health-related quality of life, the impact of the patient's chronic pain condition on the family unit, and parental satisfaction specifically with their child's previous chronic pain-related medical treatment. Baseline measurement of the dependent variables occurred at the first visit to the pediatric chronic pain medicine clinic but before interacting with any health care provider. Pain intensity and health-related quality of life were routine elements of the initial pediatric chronic pain assessment.

Measurement Instruments
The Pediatric Pain Questionnaire (PPQ), the Pediatric Quality of Life Inventory (PedsQL^TM) Generic Core Scales, the PedsQL Family Impact Module, and the PedsQL Parent Satisfaction Survey (ParSS) appeared to be the optimal instruments for the present dependent variable data collection. Chronic pain-related psychological distress was assessed using the Pain Patient Profile.

PPQ
Originally the Varni-Thompson PPQ,15 the current PPQ is patient self-reported and age-specific (young child, child, or adolescent). The PPQ assesses the intensity, location(s) and other, more subjective characteristics of a patient's pain. The PPQ includes a 100 mm horizontal line (visual analog scale) that is without numbers but ranges from 0 (anchored either by a smiling cartoon face and "no hurt at all" or by "no pain, not hurting, no discomfort") to 100 (anchored either by a sad cartoon face and "hurting a whole lot" or by "severe pain, hurting a whole lot, very uncomfortable"). The PPQ has been shown to be a reliable and valid tool for measuring pediatric self-reported chronic pain intensity.16 The validity of the PPQ was confirmed in a study of children and adolescents with chronic musculoskeletal pain associated with rheumatologic disease.17 The PPQ has been the most widely used comprehensive pain questionnaire for children and adolescents with chronic pain disorders.18

The PedsQL Generic Core Scales
The PedsQL is a valid and reliable, yet brief, instrument that assesses patients' and parents' perceptions of generic health-related quality of life with chronic health conditions.19 The PedsQL instrument has evolved into the current 23-item (each with a 0 to 4 Likert scale) PedsQL 4.0 Generic Core Scales, which are comprised of the domains of Physical Functioning, Emotional Functioning, Social Functioning, and School Functioning and generate a composite 0 (lowest health-related quality of life) to 100 (highest health-related quality of life) Total Scale Score.20 A 0 to 100 subscore can be generated for each of the four domains on the PedsQL Generic Core Scales. The Physical Functioning subscale score is conventionally reported as the PedsQL Physical Health Summary Score. The often reported PedsQL Psychosocial Health Summary Score equals the sum of the items divided by the number of items answered on the Emotional, Social, and School Functioning subscales.21 Of note, the PedsQL was the most widely applied pediatric health-related quality of life measurement instrument in the MEDLINE database from 1966 to 2006.12

The PedsQL 4.0 Generic Core Scales were administered to 963 children and 1629 parents, recruited from general pediatric offices, hospital specialty clinics, and outpatient community health clinics.21 In these diverse clinical settings, the PedsQL demonstrated internal consistency reliability for its Total Scale Score (Cronbach's coefficient = 0.88 child report, = 0.90 parent report). The construct validity of the instrument was demonstrated using the known-groups method, correlations with indicators of morbidity and illness burden, and factor analysis.21 Similarly strong reliability (internal consistency and test-retest) and validity (criterion related, convergent, known-groups, and responsiveness to intervention) have been observed with the PedsQL 4.0 in children with recurrent headache.22

The PedsQL Family Impact Module
The PedsQL Family Impact Module has been shown to be a valid and reliable instrument for measuring the effects of a complex pediatric chronic health condition on parents and the family.23 The 36-item PedsQL Family Impact Module assesses the parent's own self-reported physical, emotional, social, and cognitive functioning, communication, and worry, in addition to the parent's perspective on family daily activities and family relationships. The items on the PedsQL Family Impact Module are reverse-scored and linearly transformed to a 0 to 100 scale so that higher scores indicate better parental functioning and less negative family impact.23 When administered to 23 families of children with complex chronic health conditions, internal consistency reliability was observed for the PedsQL Family Impact Module Total Scale Score (Cronbach's coefficient = 0.97).23

The PedsQL ParSS
The PedsQL also contains a ParSS (0 minimum to 100 maximum total score), which assesses four specific domains: General Satisfaction (Factor 1); Satisfaction with Staff Communication and Interaction Style (Factor 2); Satisfaction with Information Amount and Timeliness (Factor 3); and Satisfaction with the Staff's Provision of Emotional Support for the Patient and Parent (Factor 4). Questions on the ParSS are answered using a 5-point Likert scale, ranging from 1 (very dissatisfied) to 5 (very satisfied). The reliability of the ParSS was evaluated in a study of 113 parents of pediatric patients in a hematology and oncology setting.24 The overall internal consistency of the 24-item Global ParSS met a more stringent reliability criterion of 0.90 for individual patient scale scores (Cronbach's coefficient = 0.96).24

The Pain Patient Profile
The Pain Patient Profile (P-3) efficiently identifies comorbid, chronic pain-related anxiety, depression and/or somatization. The P-3 is a 48-item, multiple-choice, paper-and-pencil questionnaire, which is completed by the patient and then computer-scored.25 High positive correlations (0.69 to 0.90) have been observed between scores on the P-3 depression, anxiety, and somatization subscales and corresponding scores on the Beck Depression Inventory, the State-Trait Anxiety Scale, and the Somatization Scale of the Brief Symptom Inventory, respectively.26 The P-3 has exhibited adequate internal consistency reliability (Cronbach's coefficient = 0.85 to 0.91) and test-retest coefficients (r = 0.98 to 0.99 for the subscales).27 While previously validated in patients 17-yr-of-age and older, the P-3 is written at the 8th grade reading level, and the P-3 questions are considered cognitively appropriate for patients 13 yr and older.25 The P-3 was thus administered in the present setting to all apparently cognitively normal patients 13 yr and older.

Data Management
All of the baseline variable data were abstracted directly from each study participant's outpatient medical record by a designated clinical research associate. These study data included none of the 18 specific patient identifiers delineated in federal regulation 45 CFR 164.514(e) and thus was a limited data set under the federal Privacy Rule. From the time of initial primary data collection (medical chart abstraction) forward, all study participants were identified only by a sequential, yet anonymous, study identification number.

Efforts were made to address the most widely recognized data quality issues.28,29 To optimize their accuracy, uniqueness, and relatability, the de-identified study data were entered directly into an Access 2003 (Microsoft, Redmond, WA) database. This dataset was visually inspected for completeness, consistency, and validity by the principal investigator, and any identified deficiencies (i.e., any missing, contradictory, or improper attribute values) were remedied or confirmed by the designated research associate using each study participant's original outpatient medical record. The study data were subsequently transferred directly from Access 2003 to SPSS 14.0 (SPSS, Chicago, IL) using the corresponding Open Database Connectivity driver contained in Stat/Transfer 8.0 (Circle Systems, Seattle, WA).

Data Analysis
Demographic data were compared with Indiana and United States norms. For the purposes of the present data analysis, the sex ratio was assumed to be the Indiana ratio of 1.06 males to females under 18-yr-of-age30 and the national ratio of 1.05 males to females under 18 yr.30 The household relationship and family status were assumed to be the Indiana rate of 87.0%31 and the national rate of 67.8%32 of children under 18 yr living with both parents (i.e., an intact family structure). The combined primary and secondary fulltime school attendance rate was assumed to be the Indiana rate of 95.9%33 and the national rate of 91.0%.34 The rate of home schooling was assumed to be the Indiana rate of 2.2%35 and the national rate of 2.2%.36 The percentage of patients insured by Medicaid was assumed to be the 33% Indiana enrollment rate37 and the overall 35% national rate of pediatric Medicaid enrollment.38

Appropriate descriptive statistics were generated for the parametric and nonparametric study variables. The sample proportions for the selected dichotomous demographic variables were compared with their respective above-noted external normative values using a ² goodness of fit test. The presently observed sample means for the initial patient self-reported (n = 92) and parent proxy-reported (n = 97) PedsQL Total Scores were compared with published normative values for healthy children and adolescents (n = 401)21 using an independent sample t-test. The present health-related quality of life scores were also compared with previously reported values for specific cohorts of pediatric rheumatology patients (n = 231),39 pediatric migraine patients (n = 686),40 and pediatric cancer patients (n = 219)41 using an independent sample t-test. The presently observed sample mean for the initial PedsQL Family Impact Module Total Scores was compared with published values for families of medically fragile pediatric patients (n = 23)23 using an independent sample t-test.

For the independent sample comparisons of the presently collected continuous data with previously published continuous data, assumptions of equality of variance and normality were made. However, in addition to generating Q-Q plots, the Shapiro-Wilk test was applied to confirm the normality of the present continuous variable data and thus fitness for a parametric test statistic. Any descriptive demographic or clinical outcome variable found to lack normality was reported as a nonparametric value. All analyses were performed using SPSS 14.0 (SPSS, Chicago, IL) or GraphPad Software (www.graphpad.com) with a P < 0.05 considered significant.

RESULTS

Study Sample
One hundred patients were evaluated by the Riley Pediatric Chronic Pain Medicine Program between its inception in October 2005 and May 2007. Sixty-one of these patients were referred by another pediatric subspecialist (e.g., neurology, rheumatology, or gastroenterology) at the Riley Hospital for Children for further evaluation of their chronic pain condition. Of the 39 other patients, 34 had been evaluated and treated for their chronic pain condition by at least one other outside subspecialist before their referral to the Riley Pediatric Chronic Pain Medicine Program. Thus, 95% of the present cohort of patients had previously been under the care of at least one other subspecialist for their chronic pain condition.

Descriptive Clinical Patient Profile
The mean age of the present cohort of pediatric chronic pain patients was 14.0 ± 3.4 (sd) yr (skewness of –0.80). As compared with Indiana state and US national averages, a significantly larger percentage of the patients evaluated in the pediatric chronic pain medicine clinic were female patients, resided in a nonintact biological family unit, and were intentionally home schooled (Table 1). Compared with their peers in Indiana and nationwide, a disproportionate number of the patients were not attending primary or secondary school fulltime (Table 1). As with the Indiana and the overall US pediatric populations, the majority of the present patients were covered by private (nongovernmental) commercial health insurance (Table 1).

Patients presented to the pediatric chronic pain medicine clinic with a diversity of primary chronic pain-related, ICD-9 diagnoses (Table 2). The mean duration of their chronic pain was 26.9 ± 34.0 (sd) mo (skewness of 2.37). The mean initial self-reported pain intensity was 63.9 ± 26.1 (sd) (skewness of –0.77). Based upon the computerized results of the P3, the majority of patients exhibited evidence of clinically significant anxiety and/or depression (Fig. 1).

View larger version (11K): [in this window] [in a new window]   Figure 1. The prevalence and severity of patient anxiety and patient depression at the time of initial clinical evaluation by the Riley Pediatric Chronic Pain Medicine Program (n = 81).

The mean initial patient self-reported and initial parent proxy-reported health-related quality of life scores (PedsQL Total Score) in the present study cohort were, predictably, significantly lower than the PedsQL Total Scores previously observed in a large normative sample of healthy children and adolescents21 (Table 3). However, the present PedsQL Total Score were also significantly lower than the PedsQL Total Scores previously observed in pediatric rheumatology patients,39 pediatric migraine patients,40 and pediatric cancer patients41 (Table 3). For further descriptive purposes, the presently observed mean values of the PedsQL domain subscales are also reported (Table 4).

At the time of their children's first clinical encounter with the Riley Pediatric Chronic Pain Medicine Program, parents reported a degree of adverse parental and family impact that was statistically comparable to that experienced by a cohort of families caring for their medically fragile children with severe cerebral palsy or birth defects at home and that was significantly more than that experienced by a cohort of parents whose medically fragile children were residents of a long-term inpatient care facility23 (Table 5). At the time of their first clinical encounter with the Riley Pediatric Chronic Pain Medicine Program, parents reported low parental satisfaction with their child's previous chronic pain-related medical treatment, as reflected by a median total PedsQL ParSS of only 61.5 (total range of 8 to 100, interquartile range of 39 to 85).

DISCUSSION

In lieu of a more formal targeted population needs assessment, a descriptive clinical profile was generated of the original cohort of patients referred to the anesthesiology-based Riley Pediatric Chronic Pain Medicine Program. Patients in this cohort were predominantly adolescent females, whose chronic pain had persisted for >1 yr and whose chronic pain was frequently accompanied by clinically significant anxiety and/or depression. A disproportionate percentage of these patients had a nonintact biological family unit and were either not attending school fulltime or were intentionally being home-schooled. These patients' chronic pain conditions likewise seemed to be having a significant adverse impact on the parent and the family unit.

These presently observed clinical characteristics are consistent with those previously reported in a diverse group of 207 children and adolescents referred over a 2-yr period to a multidisciplinary pediatric pain management clinic.42 While no formal measurement of health-related quality of life was performed, a substantial majority of these prior patients exhibited practical evidence of chronic pain-related disability, including school absenteeism (95%), sleep disruption (71%), and an inability to participate in a sport (90%).42

While a different set of measurement instruments was applied, the present descriptive findings are also consistent with a previous report on the clinical characteristics, effect of maladaptive coping strategies, prevalence of depression, and functional disability in a clinically similar cohort of 73 children and adolescents referred to a dedicated outpatient pediatric pain medicine clinic for further evaluation and treatment.43 These previous authors observed that chronic pain had a substantial adverse impact on functional ability and that coexisting depression was strongly associated with functional disability.43

However, the patients in the present study reported significantly lower overall health-related quality of life scores on the PedsQL than those previously reported by pediatric rheumatology, pediatric migraine, and pediatric cancer patients when they were being treated in a rheumatology, neurology, and oncology subspecialty clinic, respectively.39–41 This is not surprising given that anesthesiology-based, multidisciplinary pediatric chronic pain medicine programs appear to often function as "the court of last resort" for particularly clinically enigmatic and challenging patients and families. This phenomenon may be reflected in the rather low presently reported parent health care satisfaction with previous, ostensibly inadequately effective chronic pain-related treatment.

Significant selection bias very likely occurred in the patient referral pattern to the Riley Pediatric Chronic Medicine Program, a specialized pediatric health care program located within a regional quaternary care children's hospital. Consequently, the present study participants are likely not representative of the general pediatric chronic pain population. The external validity (i.e., generalizability) of the findings of this study may thus be limited to pediatric patients who have failed to improve with initial chronic pain treatment.

Pediatric Health-Related Quality of Life
Increasing attention has been focused on pediatric health-related quality of life.44–49 The measurement of health-related quality of life in pediatric clinical trials and clinical practice nevertheless remains limited as compared with the adult population.50,51 Conceptual and methodological issues have hindered the routine assessment of health-related quality of life in chronically ill children and adolescents, including those suffering from chronic pain.46,52,53 One fundamental issue is the central, yet complex, role of child development and the associated dynamic social and psychological contexts in which a child or adolescent perceives health versus disease.54 Specifically, parents, siblings and peers, in addition to the classroom setting and the community, can all play an important role in the self-perceived health-related quality of life of a child or adolescent.46 Such diverse psychosocial factors were likely influential in the present cohort of pediatric chronic pain patients.55

This methodological challenge can be overcome if an age-appropriate pediatric health-related quality of life instrument is chosen.49,56,57 The present routine use of an age-appropriate version of the PedsQL was intended to facilitate patient/parent-physician communication, improve patient/parental satisfaction, identify latent physical and psychosocial functional morbidities, and assist in point-of-service clinical decision-making.12,50,53 Of note, the concomitant use of a generic and a condition-specific health-related quality of life instrument has been recommended to complement one another.58,59 However, given the diversity of chronic pain diagnoses, and to reduce patient and parental respondent burden, the generic PedsQL instrument was presently applied alone rather than in combination with a series of chronic pain condition-specific health-related quality of life instruments.

Chronic pain has a substantial adverse impact on children and adolescents, resulting in significantly worse physical functioning, psychological functioning, social functioning, as well as lower satisfaction with life and poorer self-perceived health status.60 While an overall adverse impact was documented in the present cohort of pediatric chronic pain patients, a further, more detailed assessment of the four specific (physical, emotional, social, and school) domains of health-related quality of life on the PedsQL Generic Core Scales is indicated to generate and to trend a more individualized and thus more precise pediatric chronic pain treatment plan.

Applying the Pain Experience Interview in 187 children from five different health groups, McGrath et al.61 have documented the population-based prevalence and impact of recurrent and chronic pain in children and adolescents. A group of 117 pediatric chronic pain patients, presenting to a multidisciplinary pain medicine clinic, have previously been shown to be a rather heterogeneous group, with varying degrees of psychopathology and other factors contributing to their pain and disability.62 While not done so in the present study setting, additional clinical attention thus needs to be focused on consistently determining, and in turn longitudinally addressing, the strength of a pediatric patient's coping mechanisms, the presence of pain-promoting versus pain-reducing parental behaviors, and preexisting parental pain and disability, all of which appear to be valid prognosticators of eventual patient outcome.43,63–66

Health-related quality of life has become a central issue in the management of pediatric chronic disease, and it has been posited that the measurement of health-related quality of life should be routine in pediatric clinical trials and clinical practice.67 At the same time, additional pediatric research needs to be focused on confirming the validity of health-related quality of life measures in detecting clinically meaningful change from the perspective of the patient, parent, and health care provider.56 Health-related quality of life is ultimately a patient-reported outcome. Therefore, important, yet largely thus far unexplored, questions in the pediatric age group include whether a perceived change in health status has occurred, the extent of the perceived change, the relevance of the perceived change, and the satisfaction with the change.56 Documenting these health-related quality of life variables is an important, though as of yet untapped, potential focus in clinical care and research.56

ACKNOWLEDGMENTS

The author thanks Kathy Hesler, BSN for her invaluable assistance in collecting these clinical study data.

Footnotes

Accepted for publication October 26, 2007.

Presented, in part, at the Annual Meeting of the American Society of Regional Anesthesia, April 2007, Vancouver, British Columbia, Canada and the Annual Meeting of the American Society of Anesthesiologists, October 2007, San Francisco, California.

Reprints will not be available from the author.

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