Journal of Pediatric Gastroenterology & Nutrition:
Accuracy of Pain Recall in Children
Chogle, Ashish*; Sztainberg, Marcelo†; Bass, Lee*; Youssef, Nader N.||; Miranda, Adrian¶; Nurko, Samuel#; Hyman, Paul**; Cocjin, Jose††; Di Lorenzo, Carlo‡‡; Saps, Miguel*
*Division of Gastroenterology, Hepatology and Nutrition, Children's Memorial Hospital
†Department of Computer Science, Northeastern University, Chicago, IL
‡NPS Pharmaceuticals, Bedminster
§Digestive Healthcare Center, Hillsborough
||Department of Pediatrics, University of Medicine and Dentistry of New Jersey, Newark, NJ
¶Division of Pediatric Gastroenterology, Hepatology and Nutrition, Medical College of Wisconsin, Milwaukee, WI
#Division of Gastroenterology and Nutrition, Children's Hospital Boston, Boston, MA
**Department of Gastroenterology, Children's Hospital, New Orleans, LA
††Division of Gastroenterology, Children's Mercy Hospital and Clinics, Kansas City, MO
‡‡Division of Pediatric Gastroenterology, Nationwide Children's Hospital, Columbus, OH.
Address correspondence and reprint requests to Dr. Miguel Saps, MD, Division of Pediatric Gastroenterology, Hepatology, and Nutrition, Children's Memorial Hospital, 2300 N Children's Plaza, PO Box 57, Chicago, IL 60614 (e-mail: firstname.lastname@example.org).
Received 9 March, 2011
Accepted 25 October, 2011
The study was supported in part by the 2003 Clinical Research Award from the American College of Gastroenterology, grant no. CHP 19596 RA501, and grants M01 RR-00048, M01 RR-00084, and M01 RR-02172 from the National Center for Research Resources, National Institutes of Health.
The authors report no conflicts of interest.
Background and Aim: Chronic abdominal pain (AP) is common in children. Recall of symptoms is used clinically to determine management, to assess treatment progress, and in drug studies to assess outcomes. Limited data exist on accuracy of AP recall in children. The aim of the present study was to assess ability to accurately recall AP in children.
Methods: The study was a secondary analysis of data obtained from a double-blind, randomized, placebo-controlled trial, evaluating amitriptyline in children with functional gastrointestinal disorders. Children ages 8 to 17 years with AP predominant functional gastrointestinal disorders based on Rome II criteria were recruited from 6 centers. Those with evidence of organic disease were excluded. Patients maintained AP diary daily for 1 month (presence, frequency, and intensity). At the end of the study, patients reported the number of days of AP during previous month. Agreement between daily pain reports and recalled pain was assessed. Univariate analysis was conducted with Spearman rank correlations.
Results: We recruited 63 children (45 girls, mean age 12.8 years). Sixteen percent children had perfect agreement on number of days of AP. Fifty-four percent of children recalled fewer episodes of pain. The average number of days with AP by recall was 17.7/month, whereas by diary it was 23.5/month (P = 0.001). Correlation between patient recall of the last week of symptoms (r = 0.47) was no better than correlation between recall of the last 30 days of symptoms (r = 0.48). On comparing AP recall versus various pain intensities, reported AP did not reflect only AP of greater severity. Higher correlation of recall of symptoms was seen in children 11 years or younger (r = 0.59) as compared with children older than 11 years (r = 0.26).
Conclusions: Few children can accurately recall the episodes of AP. Children commonly recall a lower frequency of AP than that assessed by prospective diary reports. Reported recall does not reflect a shorter recollection period. Recall is not related to intensity of pain. Adolescents have worse recall of symptoms.
Chronic abdominal pain (AP) is a common complaint in children (1,2). Commonly accepted data on the prevalence of chronic AP in children mostly rely on retrospective studies based on patients’ recall. Limited information exists on accuracy of AP recall in children (3). A better understanding of a child's recall has important implications for clinical and research purposes. Recall of symptoms is used clinically to determine initial treatment plan, assess progress, and decide changes to management. Inaccurate recall could result in over- or underestimation of AP complaints leading to erroneous changes in medications. Accuracy of data is relevant in drug studies to assess treatment success. Inexact reports could lead to an inaccurate estimation of drug efficacy. To overcome these potential problems, pediatric research trials presently use daily symptom diaries. The use of daily diaries is cumbersome, time-consuming, expensive, and frequently requires using electronic data entry. Proving the accuracy of child's AP recall may potentially avoid the use of daily diaries. Studies on children's recall of stool characteristics have shown fair agreement between the child's recall and daily reports of defecation parameters (4). There are no studies examining the ability of children to recall AP symptoms. We have performed a post hoc analysis of data obtained from a prospective double-blind, randomized, placebo-controlled interventional trial in children with functional gastrointestinal disorders (FGIDs) to assess the children's ability to accurately recall AP. We hypothesized that the collection of AP data by recall does not accurately represent prospectively recorded data.
The study was a secondary analysis of data obtained from a double-blind, randomized, placebo-controlled trial, evaluating amitriptyline in children with a diagnosis of functional AP, functional dyspepsia, and irritable bowel syndrome according to the Rome II criteria (5). Children were recruited from the pediatric gastroenterology clinics of 6 tertiary care centers geographically dispersed in the United States: Children's Hospital of Pittsburgh (Pittsburgh, PA), Goryeb Children's Hospital at Atlantic Health System (Morristown, NJ), Kansas University Medical Center (Kansas City, KS), Children's Hospital of Boston (Boston, MA), Children's Hospital of Wisconsin (Milwaukee, WI), and Children's Memorial Hospital (Chicago, IL). Each eligible patient was evaluated by clinical history, physical examination, and standardized laboratory testing across sites. Children diagnosed as having an organic disease, plotted below the fifth percentile for weight or height, or had abnormal laboratory testing were excluded. Patients completed a daily diary for at least 4 weeks. Daily assessment included the AP Word-Graphic Rating Scale, a 100-mm visual analogue-Likert scale, designed to document the presence, frequency, and intensity of AP in children (6). At the end of study, patients were asked to report the number of days of AP during previous month (“During the last month, how many times per week did you have AP?”). Final evaluation was scheduled within the fifth week following randomization (first day of drug/placebo). To account for the possible variation in number of daily reports between randomization and time of final evaluation (28–35 days/daily pain diaries) and in cases of children who completed daily diaries for >30 days, only the last month was considered. In cases of children reporting daily pain for 28 to 30 days, the daily average of pain was calculated and the value obtained was multiplied by 30 to account for 1 month of pain. Because children had to mark with a vertical line on the horizontal 100-mm pain scale their daily report of AP intensity, and to avoid the possibility of the child inadvertently reporting more than 0 mm of AP when the intention was drawing the line on the 0-mm mark, we considered AP to be present when the child reported intensity of AP >10 mm on the 100-mm scale. Accuracy of recall was assessed by analyzing the agreement between daily AP reports and recalled AP. For the purpose of the study, correlation coefficients were considered as weak (0–0.3), moderate (0.31–0.7), and high (0.71–1). Children who had not completed at least 80% of daily pain diaries assessment were excluded from the study. Correlations between variables were evaluated by univariate analysis with the Spearman rank correlation test.
Daily AP reports and end-of-study AP recall data were obtained from 63 children (34 drug, 29 placebo; 45 girls, mean age 12.6 years standard deviation [SD] 2.7 years, age range 8–17 years). Only 3 children of 63 completed their final evaluation (assessment of outcome) >35 days after randomization. Average duration of AP reported by the children was 25 months (range 2–130 months). Fifty-nine children reported visiting a pediatrician in the last year for AP; 51 (81%) had >1 visit to the doctor. Eighteen children (29%) had visited the ER for AP in the last year.
Analysis of data showed that mean duration of AP was 15.5 days (SD 9.0). Mean level of AP as per visual analogue scale was 37.7 (SD 22.5). Average number of symptom-free days was 4.7 days (SD 7.6). A moderate positive correlation was found between AP recall at the end of the study and daily AP diary data (r = 0.4, 95% confidence interval [CI] 0.17%–0.59%) (Fig. 1). Average number of days by recall and dairy was 4.1/week and 5.5/week, respectively, difference 1.4/week (SD 2.6, P = 0.001). Only 16% children had perfect agreement between the number of days in which they recalled having AP and the daily report of AP. Fifty-four percent children recalled fewer episodes of AP compared with the daily diary report, and 40% of children recalled more episodes of AP compared with the daily diary report.
To better understand the various factors influencing AP recall in children, we analyzed AP recall by age, length of time of recall, and pain intensity. For age, data on AP recall were analyzed for children in 2 age groups: 8 to 11 years of age (children) and 12 to 18 years of age (adolescents). The age subdivision was set in agreement with the developmental sequence of children's understanding of pain (7). We found a higher correlation between AP recall at the end of the study and AP recall by daily diaries in children 11 years and younger (r = 0.59, 95% CI 0.36%–0.78%) as compared with children older than 11years (r = 0.26, 95% CI 0.06%–0.42%) (Table 1). For length of time of recall, due to the lack of information of AP recall in children and their ability to recall pain events occurring several weeks earlier, we were interested in assessing whether recalled AP reflected the whole period or exclusively reflected the children's experience of AP during the previous week. A comparison of the report of AP by recall with the data from the diaries of the first 3 weeks of the study showed a moderate correlation between both variables (r = 0.48, 95% CI 0.26%–0.65%). We found a similar correlation in recall between the child's report of AP of the first 3 weeks and the week before the survey (r = 0.46, 95% CI 0.24%–0.64%) (Fig. 2).
For pain intensity, considering that children in the study had AP for a long period of time and may be accustomed to pain and therefore ignore episodes of AP of low intensity, we investigated whether children's recall only reflected the presence of AP of higher intensity. For this purpose, we analyzed separately the AP recall data with the data on AP episodes with intensity >50 mm and >75 mm on the 100-mm pain scale. We found that reported AP did not reflect days of AP of greater severity. Analysis of the data showed a moderate correlation between AP pain recall and AP episodes >50 mm (r = 0.45, 95% CI 0.23%–0.63%) and a weak correlation with AP episodes >75 mm (r = 0.28, 95% CI 0.04%–0.49%) (Fig. 3 and Table 1). Pain recall according to pain intensity showed a differential effect between children in the drug or placebo group only in the assessment of pain episodes that had an intensity >10 mm, whereas the behavior (accuracy of recall) was similar in patients receiving drug or placebo when episodes of pain intensity >25 mm, >50 mm, >75 mm were considered. Pain recall correlation in episodes of pain intensity >10 mm was (r = 0.49, 95% CI 0.24%–0.56%) in children receiving drug versus (r = 0.21, 95% CI 0.06%–0.36%) in those receiving placebo.
The results of our study provide relevant data for clinical and research purposes. Our study found that children had limited ability to recall AP. Only 16% of children were able to accurately recall the exact frequency of AP. Most children reported a lower frequency of AP by recall than by daily diaries. Although this could be considered a healthy coping tool by the children that show a tendency to “forget” some of the AP episodes, the results are troubling for clinical and research purposes. Doctors usually assess the progress of a patient's treatment based on patient recall of symptoms. Inaccurate reports that underestimate the extent of AP episodes may result in the practitioner considering a treatment successful when in fact the treatment failed. In terms of research, the inaccuracy of recall found in our study implies that trials will have to continue relying on daily report of symptoms instead of evolving into a cheaper and less bothersome approach to AP assessment, the patient's recall. This is particularly significant in view of the novel regulations of the Food and Drug Administration's requiring patients’ reported outcomes to assess the efficacy of a treatment intervention.
The results of our data should be taken into consideration for future versions of the Rome criteria. The Rome III criteria established strict minimum requisites of AP frequency to diagnose an FGID. Because Rome criteria–based diagnosis relies on an accurate recall of a minimum of 8 weeks, a longer period of recollection than our investigation (4 weeks), it is likely that the recall is even less accurate, with some children not meeting criteria for a FGID when in fact they should.
Our findings differ from a previous study that showed that children were able to accurately recall general pain intensity after 1 week in 83% of cases (3). A possible explanation is that Zonneveld and colleagues’ study was conducted on children who had pain while admitted to the hospital, with some or all of them having acute pain related to a salient medical procedure. Memory of chronic pain in ambulatory patients is likely to be affected by several factors that do not occur in hospitalized patients, in which the pain experience is more vivid, limited in time and external stimuli are limited. As compared with ambulatory care for pain, hospitalization is characterized by a greater attention to pain by parents, children, and medical staff who inquire multiple times per day about the presence and intensity of pain, which may lead to more accurate pain recall. Our analysis of the data could not unmask any individual factors affecting the patient's recall of pain, with the exception of age. This underscores the complexity of pain memory and its possible multifactorial nature. Age was found to affect the pain recall in our patients. Recall of AP was worse among adolescents than younger children. These findings are in agreement with previous studies showing an inverse correlation between recall of pain and age in children admitted to a tertiary care center (3). A possible explanation to these findings is that adolescents may pay less attention to their body symptoms or care less to be precise when answering the doctor's questions. To assess the possible effect of memory decay on recall, we compared data on accuracy of recall of the first 3 weeks of the study with the week before the pain recall assessment. We found similar AP recall during both periods. This shows that poor pain recall cannot be explained as a result of memory decay and that children's reports do not reflect the most recent episodes of pain. This goes against the principles of cognitive heuristics by which evaluation of frequency, probability, and causality relations relies on how easily information is recalled from memory. Entrenched painful memories have been thought to play an important role in establishment of chronic pain syndromes via the mechanism of sensory reexperiencing of pain (8). Memory of pain is known to be affected by pain perception (9). Greater pain intensity could theoretically result in stronger memories of pain, and children's recall could reflect those episodes of pain of greater intensity; however, our analysis demonstrated that children's recall did not reflect episodes of different pain intensity and did not help us to better understand pain recall in children.
The limitations of our study include the retrospective design and investigation of a sample of tertiary care patients, which may not represent the universe of children with AP. There are limited published data on baseline characteristics of recall in children and adolescents, and no criterion standard with which the results of our study can be compared. This does not allow us to assess whether our results are unusual because a moderate correlation between daily pain and recall may be the norm and expected. We cannot exclude that the results of our study may not represent the reality of daily clinical care. Children in our study were active participants in their daily assessment of pain and were cognizant of their role assessing the possible efficacy of a drug that may have resulted in a more accurate recall than could be expected in children attending a regular medical consultation. An even more limited recall in regular medical consultation would be bothersome and make our results even more significant. Conversely, continued illness may cause underreporting of exposure, if present illness hampers respondents’ ability to concentrate. Future prospective studies should investigate whether our findings can be reproduced in a population of community-based and primary care office consulting children.
Few children can accurately recall the episodes of AP. Children commonly recall a lower frequency of AP than that assessed by prospective diary reports. The reported recall does not reflect a shorter recollection period. Recall is not related to the intensity of pain. Adolescents were found to have worse recall of symptoms than younger children.
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