Use of Complementary and Alternative Medicine by Pediatric Patients With Functional and Organic Gastrointestinal Diseases: Results From a Multicenter Survey
- Arine M. Vlieger, MDa,
- Marjolein Blink, MDa,
- Ellen Tromp, PhDb,
- Marc A. Benninga, MD, PhDc
Author Affiliations
Abstract
OBJECTIVES. Many pediatric patients use complementary and alternative medicine, especially when facing a chronic illness for which treatment options are limited. So far, research on the use of complementary and alternative medicine in patients with functional gastrointestinal disease has been scarce. This study was designed to assess complementary and alternative medicine use in children with different gastrointestinal diseases, including functional disorders, to determine which factors predicted complementary and alternative medicine use and to assess the willingness of parents to participate in future studies on complementary and alternative medicine efficacy and safety.
PATIENTS AND METHODS. The prevalence of complementary and alternative medicine use was assessed by using a questionnaire for 749 children visiting pediatric gastroenterology clinics of 9 hospitals in the Netherlands. The questionnaire consisted of 35 questions on the child's gastrointestinal disease, medication use, health status, past and future complementary and alternative medicine use, reasons for its use, and the necessity of complementary and alternative medicine research.
RESULTS. In this study population, the frequency of complementary and alternative medicine use was 37.6%. A total of 60.3% of this group had used complementary and alternative medicine specifically for their gastrointestinal disease. This specific complementary and alternative medicine use was higher in patients with functional disorders than organic disorders (25.3% vs 17.2%). Adverse effects of allopathic medication, school absenteeism, age ≤11 years, and a low effect of conventional treatment were predictors of specific complementary and alternative medicine use. Almost all (93%) of the parents considered it important that pediatricians initiate complementary and alternative medicine research, and 51% of parents were willing to participate in future complementary and alternative medicine trials.
CONCLUSIONS. Almost 40% of parents of pediatric gastroenterology patients are turning to complementary and alternative medicine for their child. Lack of effectiveness of conventional therapy, school absenteeism, and adverse effects of allopathic medication are more important predictors of complementary and alternative medicine use than the type of gastrointestinal disease. Because evidence on most complementary and alternative medicine modalities in children with gastrointestinal disorders is lacking, there is an urgent need for research in this field.
The term “complementary and alternative medicine” (CAM) refers to a spectrum of diagnostic and therapeutic modalities that complement mainstream medicine by contributing to a common whole by satisfying a demand not met by orthodoxy or by diversifying the conceptual frameworks of medicine,1 a definition adopted by the Cochrane Collaboration. CAM incorporates many different approaches and methodologies, ranging from ancient techniques like acupuncture and ayurvedic medicine to chiropractic, homeopathy, spiritual healing, and body-mind medicine. Most of these modalities are aimed not only at relieving symptoms and restore wellness, like in conventional medicine, but also at helping the individual in a process of self-healing within a holistic view of health, in which body, mind, and spirit are addressed. CAM has become prominent in the last decades, with approximately one third of both adult and pediatric patients using CAM.2–5 Higher prevalences have been found in children with chronic or life-threatening diseases, like attention-deficit/hyperactivity disorder, asthma, and cancer.6–8
Functional gastrointestinal disorders (FGIDs) like regurgitation, irritable bowel syndrome (IBS), functional abdominal pain, and defecation disorders are highly prevalent in childhood.9–11 These conditions can be bothersome, often affect daily activities, and are associated with a high medical consumption. A large proportion of children with FGIDs remain symptomatic for years despite conventional treatment.12–14 It is reasonable to assume that parents become dissatisfied and consult practitioners of alternative medicine. However, so far, no studies have been performed examining the prevalence of CAM use in this group of patients. Also, for other gastrointestinal disorders in pediatric patients, research has been limited and has been focused mainly on children with inflammatory bowel disease (IBD), with CAM prevalences between 41% and 72%.15–18 In an Australian study, ∼36% of 92 children attending gastroenterology outpatient clinics were using CAM and/or probiotic agents.19 This latter study, however, could not define usage patterns in subgroups of patients with different gastrointestinal disorders, because these groups contained relatively small numbers of patients. Wong et al17 studied the use of CAM in 3 pediatric medical centers in the United States, comparing a group of children suffering from IBD with children presenting with chronic constipation, but no other gastrointestinal disorders were examined. Thus, so far it is unknown whether differences exist in CAM usage in several of various gastrointestinal disorders and especially if differences exist between pediatric patients with organic disorders like IBD or celiac disease and patients with FGIDs.
Finally, neither safety nor efficacy of most CAM therapies has been investigated systematically yet in children. Because so many patients are using CAM these days, and because CAM therapies are not always devoid of adverse effects, there is an urgent need for good research in this area. It is unknown, however, whether parents are willing to have their children participating in pediatric CAM studies.
We undertook this study to assess CAM use in children with different gastrointestinal diseases and to test the hypothesis that FGIDs are associated with a higher use of CAM compared with organic disorders. Our second objective was to determine which patient and disease characteristics, such as health status or duration of symptoms, are associated with CAM use in this patient group. Third, we assessed the parents’ attitude toward pediatric CAM research and their willingness to participate in future safety and efficacy studies.
PATIENTS AND METHODS
Patients
Between July and December 2005, parents of children attending the gastroenterology outpatient clinics of 5 academic hospitals in the Netherlands (Academic Medical Center, Amsterdam; Free University Medical Center, Amsterdam; University Medical Center, Groningen; University Medical Center, Nijmegen; and University Medical Center, Utrecht) and of 4 teaching hospitals (St Antonius Hospital, Nieuwegein; Alkmaar Medical Center, Alkmaar; Isala Clinics, Zwolle; and Gelre Hospital, Apeldoorn) were invited to participate in this study. The prevalence of CAM use was assessed using a questionnaire to be filled in by the parents. They were asked to complete the questionnaire while attending the outpatient department and to return the form before leaving. A cover page outlined the intent of the study and emphasized the anonymity of the study. Parents were asked to fill in the questionnaire completely, but they were free to leave questions open that they did not want to answer. Unique patient numbers were recorded on the questionnaire with the only purpose of confirming the gastrointestinal diagnosis of the child 6 months later. This was done by checking the medical files.
Questionnaire
The questionnaire consisted of 35 questions, and completion took ∼15 minutes. It was modified from an instrument developed to assess CAM use among general pediatric patients in the Netherlands5 and included questions on the child's age, diagnosis, disease history, medication use, adverse effects, health status, and the perceived efficacy of the conventional treatment on a scale of 1 (no effect) to 5 (very effective). We asked questions on the child's use of CAM in the past 12 months and the reasons for the CAM use. Ten different CAM modalities were listed, and parents were asked to comment on the perceived efficacy of each of the used modalities, again on a scale of 1 to 5. The questionnaire also contained questions on future CAM use in 3 hypothetical situations (“Would you use CAM if [A] your child would not be symptom free despite conventional medication? [B] your child would be free of symptoms but needs to use medication for a long time without side effects? [C] your child can become asymptomatic but only by taking medication with severe side effects?”). Finally, parents were asked for the necessity of CAM research and their possible participation in future trials.
Data Analysis
In this study, we defined CAM users as those who used any of the different CAM modalities listed in our questionnaire. Furthermore, we defined “specific” CAM users as those who used CAM for the same gastrointestinal disorder for which the outpatient clinic was visited. The group of functional disorders consisted of regurgitation, functional abdominal pain, IBS, and functional constipation, diagnosed according to the Rome II criteria for FGIDs.20 IBD, celiac disease, liver and gallbladder disorders, and infectious diseases were defined as organic disorders. Feeding problems, food allergies, aspecific diarrhea, and a rest group (such as failure to thrive e cause ignota (e.c.i.) or gastric stomas) were defined as “other disorders.”
Univariate and multiple logistic regression analyses (backward elimination, P < .05) were performed to identify potential predictors associated with specific CAM use. To facilitate clinical interpretation, all of the categorical and continuous variables were dichotomized before they were entered into the analyses. Cutoff points were defined for age (≤11 years), duration of symptoms (≤3 months), duration of treatment (≤3 months), adverse effects allopathic medication ([very] much), perceived effect of conventional therapy (little/no effect), health status (fair/poor), feelings of pain or discomfort ([very] much), and school absenteeism (>5 days). For significant predictors, odds ratios (ORs) and 95% confidence intervals (CIs) were calculated. Data were analyzed by using SPSS 14.0 (SPSS Inc, Chicago, IL).
RESULTS
A total of 749 questionnaires were completed, 505 in a university hospital and 244 in a teaching hospital. Only 2 of the participating hospitals had recorded how many parents refused to participate (6%). The most cited reasons for not participating were lack of time and insufficient knowledge of the Dutch language. Not all of the questions were answered in every questionnaire, resulting in different total numbers per analysis. Patient demographics and disease data of the patients are shown in Table 1.
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TABLE 1
Patient Demographics and Disease Data
Use of CAM
A total of 278 children (37.6%) of 739 had used ≥1 CAM modality in the last 12 months; 63.7% of them had visited a CAM therapist. The other 36.3% had used over-the-counter remedies or were receiving treatments from their parents like Reiki and massage therapy. The frequency of specific types of CAM use and the experienced effect are listed in Table 2. Herbal remedies (46.0%), food supplements (36.0%), manual therapies (23.7%), and homeopathy (21.9%) were the most commonly used CAM modalities. Many patients were reasonably satisfied with the used CAM therapy: 90 of 255 parents reported a good or very good effect (35.3%), and another 86 (33.7%) experienced a moderate effect. Seventy-nine parents (31%) noticed no or little effect. No significant difference was found in the mean experienced effect for each of the CAM therapies; it varied between 2.68 and 3.65 (Table 2). The mean of the experienced effect for conventional medicine was 3.05.
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TABLE 2
Use of the Different CAM Therapies
Reasons for CAM Use
Parents were asked to indicate whether they used CAM for the gastrointestinal disease of their child, other medical disorders, or in promoting general well-being. These figures were 60.3% (n = 132), 21.5% (n = 47), and 18.2% (n = 40), respectively, in the 219 patients who answered this question. The most frequent reasons given by parents for their child's CAM use are shown in Table 3. Approximately half of the parents discussed CAM use with their pediatrician or pediatric gastroenterologist (51%). Most physicians reacted neutrally to disclosure of CAM use (54.3%), 40.9% of the physicians reacted positive, and only 4.7% gave a negative response.
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TABLE 3
Reasons for Overall Use of CAM as Provided by the Parents
Predictors of Specific CAM Use
Univariate logistic regression analysis revealed 6 positive predictors for specific CAM use: age ≤11 years, a low perceived effect of conventional treatment, severe adverse effects of allopathic medication, a low health status as reported by the parents, feelings of discomfort related to the gastrointestinal disorder, and school absenteeism >5 days (Table 4). Type of hospital (academic versus nonacademic), duration of symptoms, duration of treatment, and use of medication were not associated with CAM use. All of these variables were then included in a multivariate logistic regression analysis, showing that age ≤11 years, severe adverse effects of allopathic medication, a low perceived effect of conventional treatment, and school absenteeism >5 days were independent predictors of specific CAM use (Table 4). Analysis per disease group showed that severe adverse effects were a more important predictor in the group with organic disorders and a low perceived effect of conventional treatment in the group with functional disorders (data not shown).
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TABLE 4
Variables Associated With Specific CAM Use
A significant difference was found in specific CAM use between functional and organic or other disorders (Table 5; OR: 1.57 [95% CI: 1.10–2.24]). Analysis of all of the disorders separately revealed a significantly higher specific CAM use in patients with IBS (OR: 1.86 [95% CI: 1.04–3.32]) and food allergies (OR: 4.13 [95% CI: 1.37–12.45]).
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TABLE 5
Total and Specific CAM Use per Gastrointestinal Disorder
Future CAM Use and Interest in Research
Parents were asked if they would use CAM in the future in 3 different situations. In the hypothetical situation that their child would not become symptom free despite conventional therapy, 347 of 693 parents (50.1%) would be prepared to use CAM; 243 (33.8%) did not know this yet; and only 92 (13.3%) would not use CAM. If the child would become symptom free but only with medications with significant adverse effects, the percentages were 40.4%, 38.7%, and 20.9%, respectively. If the child would be free of symptoms but had to take medications for years without any adverse effects, the interest in CAM use further decreased: 30.4% would use it, 34.8% did not know, and 34.6% would not consider CAM use. We found a significant difference in all 3 of the scenarios between CAM users and nonusers (P < .001) Almost all of the parents considered it important that pediatricians initiate CAM research (641 of 691 [93%]), only 15 parents were against CAM research (2.2%), and 35 (5.1%) had no opinion. No difference was found between CAM users and nonusers. Fifty-one percent of parents (355 of 696) were willing to participate in future CAM trials, whereas 37% (262) did not know. A significant difference was found between CAM users and nonusers: 58.9% of the CAM users would participate versus 46.3% of the nonusers (P < .01).
DISCUSSION
This is the largest study to date to describe CAM use in pediatric patients with different gastrointestinal disorders. A total of 37.6% of 739 patients reported some form of CAM use in the past 12 months. Sixty percent of these patients had visited a CAM practitioner at least once. These data are not surprising given the prevalences found so far in studies among pediatric IBD patients and general pediatric gastroenterology patients.15–17,19 It is interesting that we did not find any differences in the experienced effect of all of the different CAM modalities. This may suggest that all of the CAM therapies only have a nonspecific or nontrue therapeutic effect. On the other hand, no difference was seen as well with the experienced effect of conventional medicine. Therefore, it may also be possible that asking parents for the experienced effect on a scale of 1 to 5 is not an adequate way of investigating perceived efficacy.
No difference was found in overall CAM use between children whose diseases were classified as functional and children with organic disorders. However, significantly more patients with functional disorders had used CAM specifically for their gastrointestinal condition compared with patients in the other groups. This finding is consistent with some studies in adult patients with gastrointestinal disorders,21,22 although other adults studies did not show such a difference.23,24 Most of these adult studies compared functional disorders with IBD patients. We, however, also included other organic diseases, like liver and gallbladder disorders and celiac disease. In our study, patients with celiac disease had the lowest prevalence of specific CAM use. After removing the latter group from the group-to-group analysis, the difference was not significant anymore. Children with celiac disease are often asymptomatic with a gluten-free diet and have a normal quality of life.25 It is, therefore, not surprising that the prevalence of specific CAM use in this group of patients was only 7.9%.
This study has a number of limitations. Although the survey was voluntary and anonymous, parents may have been reluctant to disclose the use of CAM, possibly resulting in an underreporting of CAM use. Because parents were asked to recall CAM use over the previous year, there may also have been a recall bias. Finally, we cannot exclude the possibility that some patients were misdiagnosed. We think, however, that this was not a high number of patients, thereby not significantly influencing the results of this study.
For pediatricians, it may be important to know why and when parents of their patients will seek alternative medical care. A low perceived effectiveness of conventional treatment was 1 of the predictors of specific CAM use, especially in the group of functional disorders. This is not surprising, given the fact that, for example, many patients with chronic constipation are dissatisfied with traditional treatment options, primarily because of a lack of efficacy.26 Also, for functional abdominal pain and IBS, available treatment options have limited efficacy, resulting in dissatisfied patients. With the increasing popularity of CAM these days in mind, it, therefore, seems just a matter of time before patients with functional disorders not responding to conventional treatment will consider an alternative route. Severe adverse effects of allopathic medication were also associated with CAM use, which is in accordance with the studies in children with IBD.15–17 We were surprised by the fact that children ≤11 years of age used CAM for their gastrointestinal disease more often than older children. This may be caused by the fact that adolescents can be more skeptical about alternative therapies and, thus, are unwilling to go to a CAM practitioner. We noticed, for example, in our recent study evaluating the effectiveness of hypnotherapy in pediatric functional abdominal pain and IBS, that adolescents were more reluctant to participate than younger children.27 Another predictor of specific CAM use was school absenteeism; this finding has also been reported by Markowitz et al.16 Heuschkel et al,15 however, could not find a relation between CAM and the number of sickness days. The relation between CAM use and these characteristics is also reflected in the answers of the parents on hypothetical situations. More than 50% of the parents will consider CAM if their child does not respond to conventional treatment. This figure is still 40% if symptoms do disappear but only because of medication, but with significant adverse effects.
We were surprised as well by the high percentage of parents (93%) who consider it important that pediatricians initiate CAM research and by the fact that 50% of the parents were willing to participate in future CAM studies. So far, CAM research in children has been limited and has been focused mainly on efficacy. However, safety studies in CAM are also very important, especially in pediatrics. We and others found that herbal medicine is the most frequently used CAM modality.3,28 One of the reasons why phytotherapy is so popular is that parents equate “natural” with safety. However, especially with herbal medicines, it is known that they have the potential to elicit severe adverse reactions because of contamination with heavy metals, adulteration with synthetic drugs, or direct toxic effects.29 Problems of toxicity and drug interactions can be exaggerated in young children whose metabolism and organ function are immature and less tolerant of even subtle changes in comparison with adults. This highlights the need for rigorous CAM studies in pediatrics.
There are, however, some hurdles to take before initiating CAM research of good quality. The first is the problem of study design. One of the most used methods in conventional research, the double-blind, randomized, placebo-controlled trial, is not always ideal for investigating CAM, because many of the alternative therapies are rooted in the concept of individualized care rather than disease-based treatment.30 Blinding patients to their treatment arm may also be problematic, for example, in massage-based therapies or body-mind modalities. Funding can be another important obstacle. Although governments and private foundations are increasingly investigating CAM research, the available budgets are still very small in comparison with the budgets for conventional research.31–33
CONCLUSIONS
A total of 37.6% of parents of pediatric gastrointestinal patients are turning to CAM for their child and even more will do so when their child is not helped adequately by conventional medicine. Because evidence on efficacy and safety of most CAM modalities is lacking, especially in pediatrics, there is an urgent need for good quality research in this field. This study shows that parents are willing to have their child participate in this kind of research.
Acknowledgments
We thank the pediatricians and pediatric gastroenterologists of the Academic Medical Center, Amsterdam; the Free University Medical Center, Amsterdam; the University Medical Center, Groningen; the University Medical Center, Nijmegen; the University Medical Center, Utrecht; the St Antonius Hospital, Nieuwegein; the Alkmaar Medical Center, Alkmaar; the Isala Clinics, Zwolle; and the Apeldoorn Hospital, Apeldoorn, for cooperation in this study.
Footnotes
- Accepted March 27, 2008.
- Address correspondence to Arine M. Vlieger, MD, Department of Pediatrics, St Antonius Hospital, PO Box 2500, 3430 EM Nieuwegein, Netherlands. E-mail: a.vlieger@antonius.net
- The authors have indicated they have no financial relationships relevant to this article to disclose.
- What's Known on This SubjectUse of CAM is common in pediatric patients with IBD, but no studies have looked at the use of CAM in children with other gastrointestinal diseases such as functional disorders.What This Study AddsThis study shows that CAM use is also common in children with other gastrointestinal disorders. A low perceived effect of conventional medicine and adverse effects of allopathic medications are predictors for CAM use. Parents are interested in CAM research.
REFERENCES
- Copyright © 2008 by the American Academy of Pediatrics
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