PEDIATRICS Vol. 114 No. 5 November 2004, pp. 1220-1226 (doi:10.1542/10.1542/peds.2004-0355)
Children With Unexplained Chronic Pain: Do Pediatricians Agree Regarding the Diagnostic Approach and Presumed Primary Cause?
* Department of General Pediatrics
Rudolf Magnus Institute of Neuroscience, Department of Child and Adolescent Psychiatry, University Medical Center Utrecht, Utrecht, Netherlands
Department of Psychiatry and Academic Center for Child and Adolescent Psychiatry, University Medical Center St Radboud, Nijmegen, Netherlands
|| Julius Center for Health Sciences and Primary Care, Utrecht, Netherlands
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONSAPPENDIX: PUC STUDY GROUPREFERENCES |
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Objective. To investigate the opinions of general pediatricians regarding children with unexplained chronic pain (UCP), with respect to the presumed cause of the pain and the optimal diagnostic approach for these children.
Design. Diagnostic follow-up study.
Setting. Outpatient clinic of a university children’s hospital.
Participants. A total of 134 consecutive patients, 8 to 18 years of age, referred for pain of 
3-month duration without a satisfactory explanation at presentation.
Methods. A full copy of the patient records from routine medical practice and data from standardized psychiatric assessments, standardized questionnaires, and standardized follow-up assessments were provided to 17 pediatricians assigned to 3 panels.
Main Outcome Measures. Agreement regarding the presumed primary cause and diagnostic approach for children with UCP, with consensus being defined as 80% agreement among the pediatricians.
Results. The mean age of the children (73% girls) was 11.8 years (SD: 2.6 years). Psychiatric (co)morbidity was present for 60% of the children. Consensus regarding the presumed primary cause was reached for 43% of the patients (58 of 134 patients), ie, 72% (42 of 58 patients) primarily dysfunctional, 17% (10 of 58 patients) primarily psychologic, and 10% (6 of 58 patients) primarily somatic. Consensus regarding the diagnostic approach was reached for 63% of the children (84 of 134 children), leaving more than one-third of the children (37%) without diagnostic consensus.
Conclusions. The relatively high rates of disagreement regarding the optimal diagnostic approach and presumed primary cause illustrate the difficulties of diagnostic evaluation and subsequent therapeutic strategy design for this patient group. Therefore, children with UCP might be at risk for suboptimal care.
Key Words: diagnosis • pain • expert panel • chronic • consensus
Abbreviations: UCP, unexplained chronic pain • PUC, Pain of Unknown Origin in Children
Chronic pain without a definite cause at presentation is a common problem among children.1 In a recent Dutch study, 25% of a school sample reported chronic or recurrent pain.2 Fifty-seven percent of those children had consulted physicians for their pain; 31% had consulted general practitioners and 13.9% specialists, mainly pediatricians.3 To date, no published data are available with regard to the proportion of consultations in an outpatient pediatric clinic for unexplained chronic pain (UCP) as a whole. One study reported that 22% of patients referred to a neurology clinic were referred because of headache.4 In a study on musculoskeletal pain, 31% of patients who presented to a rheumatology clinic were found to have idiopathic musculoskeletal pain.5 In addition to its frequent occurrence, UCP is often a diagnostic dilemma for pediatricians. These children typically present with symptoms that have lasted for at least several months, for which previously consulted physicians (general practitioners, pediatricians, or other specialists) found no explanatory diagnosis. A somatic cause is present for only a minority of children with UCP, whereas psychiatric and psychosocial problems are more prevalent among children with UCP than among children without UCP.6–11 Clinical symptoms of patients presenting with UCP are often vague or nonspecific. Therefore, these patients are at risk of arbitrary diagnostic approaches. Frustration of both doctor and patient, incorrect timing of interventions, prolonged impairment, iatrogenic side effects, somatic fixation, and medical overconsumption can be consequences of this practice.12,13
To date, no studies have been published on the choices pediatricians make with respect to the diagnostic approach for this commonly encountered group of patients. Our Pain of Unknown Origin in Children (PUC) study was designed to provide more insight into the diagnostic process for children with UCP. The objective of this article is to (1) describe the opinions of general pediatricians regarding the presumed primary cause of the symptoms and (2) survey their suggestions regarding an optimal diagnostic strategy for children with UCP. We added standard psychiatric assessments to the routine medical evaluations because psychiatric causes tend to be underdiagnosed in routine medical practice and, if present, are of utmost relevance for the design of the therapeutic approach.14 To prevent interference with the routine, somatic, diagnostic evaluations, the psychiatric assessments were performed separately from routine medical practice.
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METHODS |
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Study Design
The PUC study was conducted in the Wilhelmina Children’s Hospital, University Medical Center Utrecht (Utrecht, Netherlands), between January 2000 and July 2002. Children who presented at the outpatient clinic were eligible when they met the following criteria: age between 8 and 18 years, pain lasting
3 months before this visit and without an explanatory diagnosis found by the referring doctor, first visit to a university pediatric outpatient clinic for this complaint, and sufficient knowledge of the Dutch language.
Our clinic is organized in such a way that 
50% of the general pediatric outpatient population and 15% of the other pediatric department populations consist of children evaluated only by a general practitioner before referral. The Dutch system differs from the American system in that specific pediatric primary care by pediatricians does not exist. General practitioners in the Netherlands take care of all primary care problems regardless of age. Children were recruited mainly from the department of general pediatrics and also from the pediatric departments of neurology, orthopedics, immunology and rheumatology, and gastroenterology.
Eligible patients were approached and included immediately after their first visit and before their second visit to the outpatient clinic. Every child was evaluated according to standard practice. Only after each child and parent had given informed consent were additional research data gathered with the routine medical practice. The medical ethics committee of our hospital approved the study.
Questionnaires covering functional disability (Child Health Questionnaire), somatization (Children’s Somatization Inventory), pain intensity (Pediatric Pain Questionnaire), and child personality (Dutch Personality Inventory for Youth) were completed by the child. Questionnaires covering behavior (Child Behavior Checklist) and parental psychopathologic features (Symptom Checklist 90) were completed by the child’s parent(s).15–20 An equivalent of the Child Behavior Checklist, the Teacher Report Form, was completed by the child’s teacher.21
An experienced child psychiatrist (J.v.d.H.) conducted the Semistructured Clinical Interview for Children and Adolescents. He subsequently integrated these data with data from a structured parent interview (Diagnostic Interview Schedule for Children-Parent Version) in a comprehensive psychiatric report.22,23 A final psychiatric classification was made for each child with diagnostic criteria from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. At the 12-month follow-up time, a semistructured telephone interview with the child and/or his or her parents was conducted, covering topics including pain persistence, pain intensity, interference with daily life, school absenteeism, occurrence of special events, and development of new physical symptoms.
Expert Panel
The pediatricians for the expert panel were selected from the database of the Pediatric Association of the Netherlands. Pediatricians with affinity for the subject (ie, pediatricians interested in psychosomatic medicine, as reflected in their daily clinical practice, field of research, or specialization) were contacted consecutively. Fifteen of the 23 pediatricians contacted agreed to participate. The reason for not participating was lack of time. During the evaluation process, 2 pediatricians quit because of unforeseen circumstances. Two new pediatricians evaluated the remaining files; therefore, a total of 17 pediatricians were involved in the study. The participating pediatricians worked in regional pediatric hospitals (n = 14), rehabilitation centers (n = 2), or a university children’s hospital (n = 1). Before the evaluation, panel members convened for a 2-hour meeting to acquire information on UCP, the study objectives, and the panel procedure.
The 17 pediatricians were allocated to 3 panels stratified according to age, working experience, gender, and field of primary interest, which created comparable panels. The panels received batches of 50, 45, and 39 consecutive patient files, to be evaluated by all members assigned to that panel. The general characteristics of the participating pediatricians (mean age, work experience, and gender) adequately reflected the characteristics of Dutch general pediatricians at large (data available from the Pediatric Association of the Netherlands).
The content of the patient files and the questions asked are outlined in Fig 1. In short, each panel member received a full copy of the standard practice medical record, study assessment outcomes (questionnaire results and a comprehensive psychiatric report), and follow-up data for each child. These data were combined into a single, chronologically ordered, patient file. The names and other identifying data for both the patient and the treating physician were carefully deleted from each file.
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During the file evaluations, panel members could contact pediatric expert consultants in the fields of psychology, psychiatry, gastroenterology, immunology/rheumatology, neurology, urology, and gynecology. Specific pain specialists (ie, trained anesthesiologists) were not part of the expert consultant team. The expert consultants were all specialists in our hospital and were aware of the PUC study. Hereafter, the word "psychologic" is used instead of the phrase "psychiatric and/or psychologic."
Evaluation Form
The final evaluation form consisted of 2 major questions (Fig 1). Having had the opportunity to review all patient data, panel members were first asked about their opinions regarding the primary cause of the pain. Then they were asked what their diagnostic approach would have been had they known about all data from the start. To answer these retrospectively oriented questions, the panel members were instructed not to take into account matters such as acceptability of the diagnostic proposal to the patient and parents, availability of resources, legal issues, or waiting list problems.
Consensus
Consensus among panel members was defined as either total agreement (5 of 5 members) or sufficient agreement (4 of 5 members). No consensus was defined as partial agreement (3 of 5 members) or no agreement (
2 of 5 members).
Statistical Analyses
Our primary goal was to describe the opinions of pediatricians regarding the primary cause of pain and the optimal diagnostic approach for children with UCP. Results are presented as numbers and percentages. 
2 analyses were used in cases of proportional data. In cases of continuous data, either Student’s t tests (parametric) or Kruskal-Wallis tests (nonparametric) were used. SPSS 11.5 software (SPSS, Chicago, IL) was used for statistical analysis. P values of <.05 indicated statistical significance.
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RESULTS |
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Figure 2 represents a flowchart of the inclusion procedure. Nonparticipants more often were boys (44%, 19 of 43 nonparticipants, vs 28%, 43 of 153 participants;
2 = 4.0, df = 1, P = .05). The general characteristics (age, gender, pain type, and pain duration) of the 19 children who eventually were excluded were comparable to those of the included children.
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A noteworthy finding, although not the primary objective of this study, was the high prevalence (60%) of psychiatric (co)morbidity, as established through semistructured psychiatric assessments, among the children (Table 1). Furthermore, the majority of our population consisted of girls (72%). There were no statistically significant differences in the distribution of patient characteristics among the 3 panels.
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The central objective of this study was to identify to what extent the panel members would agree regarding the diagnostic approach and the primary cause of the symptoms for children with UCP. The members had knowledge of all available diagnostic data and thus had the opportunity to look back and, if necessary, reconsider. Overall, consensus regarding the presumed cause was achieved for 43% of the patients (58 of 134 patients), ie, 72% (42 of 58 patients) primarily dysfunctional, 17% (10 of 58 patients) primarily psychologic, and 10% (6 of 58 patients) primarily somatic (consisting of codes .00 to .06) (Fig 2).
Consensus (sufficient agreement or total agreement) regarding the optimal diagnostic approach was reached for 84 children (63%), leaving 50 children (37%) without consensus (Table 2). A completely somatic approach was advocated for only 9% of the children with consensus, which is in accordance with the relatively small proportion of children for whom a purely somatic cause was considered. Purely somatic approaches were considered only for children with either abdominal pain (17%) or musculoskeletal pain (19%). Headache as a primary symptom invariably called for a combined diagnostic approach. In accordance, the cause in cases of headache was considered either dysfunctional (94%) or psychologic (6%). A strictly psychologic strategy was never chosen, at least not with sufficient agreement. However, the presumed cause for 10 children (17%) was primarily psychologic. In the majority of cases, the panel members eventually decided on a combined diagnostic approach (54%, 72 of 134 patients).
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSAPPENDIX: PUC STUDY GROUPREFERENCES |
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This study shows that disagreement was present for approximately one-third of the patients regarding the optimal diagnostic approach and for more than one-half of the patients regarding the primary cause of the symptoms. To our knowledge, this is the first study to consider the daily clinical routine of diagnostic decision-making for a group of patients with predominantly nonspecific symptoms at intake. In our study, we intentionally used a conceptual definition of chronic pain rather than an arbitrary focus on allegedly specific pain syndromes. The importance of this conceptual approach was noted by Wessely et al.24
Research on agreement regarding treatments or specific diagnostic tests shows that the variability in doctors’ recommendations appears to be related to uncertainty about treatment options and outcomes. The more focused the problem and the greater the availability of evidence on outcomes, the more clinicians tend to agree.25 When uncertainty exists regarding definite diagnostic aspects (recurrent tonsillitis) or outcomes of interventions (eg, tonsillectomy or surgical treatment of a univentricular heart), then disagreement among clinicians is greater.26,27 In this context, it is not surprising that disagreement existed for one-third of our sample. However, we used a broadly defined outcome variable, instead of limiting outcomes to specific diagnostic actions for children with UCP. If we had done the latter, then consensus rates would have been markedly lower.
Another notable finding in our study was the large proportion of combined diagnostic approaches chosen. The choice of a combined approach could have originated from prevailing uncertainty regarding the optimal diagnostic strategy, because pediatricians face an expectedly low yield of somatic explanations in the first contacts with patients with UCP.6–8 Consensus would then merely reflect homogeneity in uncertainty. The choice of a combined approach, even in cases with primarily psychologic causes, might have been the result of pediatricians’ intent not to overlook somatic disorders. Moreover, patients and their parents, when referred to a children’s hospital, expect a professional somatic evaluation and exclusion of specific disorders. However, the momentum to discuss psychologic investigations probably is best created in the first contacts with patients and their families. Such discussions should be initiated by pediatricians.28 Missing this opportunity may lead to patients who are reluctant to undergo psychologic evaluations later and have feelings of not being taken seriously in their quest for organic causes.29
Pediatric patients with unexplained somatic symptoms are thought to have relatively high levels of medical consumption.30 This might be partly a result of the apparently low level of agreement among pediatricians regarding the diagnostic approach. For more than one-third of these patients, at least 2 of 5 pediatricians would approach the problem differently, which would provide the patients with other options for additional diagnostic exploration. Awareness of the high probability that colleagues would take a different diagnostic approach might prompt treating physicians to discuss such patients sooner in multidisciplinary consultations.
A potential limitation of our study might have been nonparticipation in relation to reluctance for psychiatric assessment. The nonresponse rate in itself was acceptable. Only a minority of the nonresponders (10 of 43 nonparticipants) stated psychiatric assessment as their main reason for refusal. Even in the case of manifest psychiatric morbidity for all of these children, however, the influence on our overall findings would be modest.
The aim of our study was to gain more insight into the diagnostic strategy in daily clinical practice. Therefore, we chose a study design that mimicked clinical practice as closely as possible. For instance, we did not allow the panel members to convene and exchange opinions during evaluation, because forcing consensus would not have been in line with clinical routine.31 The conclusions of our panels represent expert opinions and are therefore subject to some subjectivity.32 However, judgmental subjectivity is inevitably linked to medical practice, particularly when objective standard criteria are lacking, such as for UCP.
In clinical practice, patients and doctors meet one another in person-to-person situations. Ideally, all pediatricians participating in our expert panel would have had the same opportunity. However, such an approach would have come with 2 important drawbacks. First, having 134 children examined face-to-face by all pediatricians, who came from different parts of the country, would not have been feasible. Second, Nimnuan et al33 showed that the perceptions of physicians confronted with patients with medically unexplained symptoms do have clear effects on their diagnostic behavior, although the direction of the effects might vary. A possible positive contribution of an actual pediatrician-patient encounter might be lacking in our study, although this absence probably contributed to more objectivity in our results. Therefore, we used the present design. The fact that we had different panels of pediatricians resembled daily practice, because children are not examined exclusively by the same set of physicians at a regular outpatient clinic.
Both the content of the diagnostic process and the timing of the diagnostic interventions for children with UCP deserve additional consideration, particularly given the relationship between the process of care and clinical outcomes.34 The incidence of psychiatric (co)morbidity encountered among our patients was high. We strongly believe that the emphasis in the diagnostic approach for children with UCP should be on early positive identification of possible psychologic causes, rather than on taking appropriate psychologic diagnostic actions only after completion of the somatic evaluation. Routine involvement of a child psychiatrist or psychologist early in the diagnostic process could be beneficial for at least a subgroup of children with UCP. Alternatively, or in addition, a pediatrician could be trained more thoroughly in the diagnostic evaluation of psychosomatic problems. UCP constitutes a considerable proportion of the problems encountered in an average outpatient pediatric clinic. Controlled studies are needed to determine the validity of a timely combined diagnostic approach in relation to patient outcomes and cost-effectiveness.
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CONCLUSIONS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSAPPENDIX: PUC STUDY GROUPREFERENCES |
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Pediatricians with full knowledge of all available diagnostic data (from both somatic investigations and standardized psychiatric assessments) did not reach consensus regarding the optimal diagnostic approach for approximately one-third of the children with UCP. Moreover, consensus regarding the primary presumed cause was reached for less than one-half of the patients with UCP. The relatively high rates of disagreement regarding the optimal diagnostic approach and presumed primary cause illustrate the difficulties of diagnostic evaluation and subsequent therapeutic strategy design for this patient group.
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APPENDIX: PUC STUDY GROUP |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSAPPENDIX: PUC STUDY GROUPREFERENCES |
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The PUC study group included (in alphabetical order) Pieter J. van Dijken, MD, PhD, MBA, St Elisabeth Hospital (Tilburg, Netherlands); Regina H. M. Dijkman-Neerincx, MD, Rijnstate Hospital (Arnhem, Netherlands); Alphons H. P. M. Essink, MD, Hieronymus Bosch Hospital (’s-Hertogenbosch, Netherlands); Boudien C. T. Flapper, MD, Beatrixoord (Haren, Netherlands); Ellen A. Fliers, MD, RIAGG Rijnmond Zuid, Department for Youth (Rotterdam, Netherlands); Jeanette K. ten Haaf, MD, MESOS Medical Center (Utrecht, Netherlands); Marchinus Hofkamp, MD, Gelre Hospitals (Apeldoorn, Netherlands); Syb B. van der Meer, MD, PhD, Atrium Medical Center (Heerlen, Netherlands); Marijn Moens, MD, Hospital Diakonessenhuis (Zeist, Netherlands); Rolf A. A. Pelleboer, MD, Catharina Hospital (Eindhoven, Netherlands); Aart van Rhijn, MD, Hospital Eemland (Amersfoort, Netherlands); Ingrid M. B. Russel, MD, University Medical Center Utrecht (Utrecht, Netherlands); Bernadien T. M. J. Thunnissen, MD, Center for Astma Heideheuvel (Hilversum, Netherlands); Arine M. Vlieger, MD, Antonius Hospital (Nieuwegein, Netherlands); Johanna M. B. Wennink, MD, PhD, St Lucas Andreas Hospital (Amsterdam, Netherlands); Hester van Wieringen, MD, MESOS Medical Center (Utrecht, Netherlands); and Pieter Zwart, MD, Isala Clinics de Weezenlanden (Zwolle, Netherlands).
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ACKNOWLEDGMENTS |
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We thank Dr Walter Balemans, Dr Elise van de Putte, and Dr Martha Pekelharing for testing the preliminary design of the method and the evaluation forms. We thank Renate Siebelink and Ester Gielis for administrative support. Dr Maarten Hoekstra is gratefully acknowledged for critical review of the manuscript.
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FOOTNOTES |
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Accepted May 10, 2004.
Address correspondence to Cuno S. P. M. Uiterwaal, MD, PhD, Julius Center for Health Sciences and Primary Care, DO1.33.5, PO Box 85090, 3508 AB, Utrecht, Netherlands. E-mail: c.s.p.m.uiterwaal{at}jc.azu.nl
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