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Original Articles: Gastroenterology: Inflammatory Bowel Disease

Complementary and Alternative Medicine Use in Children With Inflammatory Bowel Diseases: A Single-Center Survey

Serpico, Mark R.∗,†; Boyle, Brendan M.∗,‡; Kemper, Kathi J.‡,§; Kim, Sandra C.∗,‡

Author Information
Journal of Pediatric Gastroenterology and Nutrition: December 2016 - Volume 63 - Issue 6 - p 651-657
doi: 10.1097/MPG.0000000000001187
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Abstract

What Is Known

  • Inflammatory bowel disease prevalence is increasing in children
  • Complementary and alternative medicine use is common in pediatric inflammatory bowel disease
  • Predictors of complementary and alternative medicine use include more severe disease and prior adverse effects with conventional medications

What Is New

  • Complementary and alternative medicine use is very common (84%) and increasing
  • The definition of complementary and alternative medicine is variable, as demonstrated by only 24% of patients considering themselves to be using complementary and alternative medicine
  • Female sex, an income range of $50–100K, and private insurance were associated with use of various types of complementary and alternative medicine therapy, rather than complementary and alternative medicine utilization as a whole.
  • Physicians are the most common source of knowledge for patients regarding complementary and alternative medicine

See “Complementary and Alternative Medicine in Pediatric Gastroenterology” by Meyer and Goda on page e208.

Inflammatory bowel diseases (IBD) including Crohn disease (CD), ulcerative colitis (UC), and indeterminate colitis (IC) are chronic, relapsing inflammatory diseases of the gastrointestinal tract of uncertain etiology (1,2) with increasing incidence and prevalence, especially in children (3–5). Additional morbidity unique to pediatric IBD includes increased disease severity, linear growth failure, and significant psychosocial stressors (6). Furthermore, conventional immunosuppressive IBD therapies can negatively affect growth and skeletal health (7). Diet and stress can affect the gastrointestinal microbiota, highlighting the importance of incorporating these considerations into care (8–10). Medication side effects and increasing awareness of the role of stress and nutrition on disease outcomes have led to increased family and practitioner awareness and usage of complementary and alternative medicines (CAM) in pediatric patients with IBD (3,11).

The National Institutes of Health defines complementary medicine as the use of nonmainstream approaches together with conventional medicine, and alternative medicine as the use of a nonmainstream approach in the place of conventional medicine. The 2007 and 2012 National Health Interview Surveys estimated that 12% of children in the general population used some form of CAM, with higher use among children and adolescent with chronic health conditions (12,13). Prior pediatric IBD studies surveying patients at IBD centers from the different regions of the US, Europe, and Canada found the prevalence of CAM use to range from 41% to 61% (3,11,14,15), although variable definitions of CAM contributes to uncertainty about actual prevalence of CAM use (16). For example, when prayer is included in the definition of CAM, 62% of adults report having used some form within the past 12 months, but only 36% used CAM when prayer was not included (12,17). Prior pediatric IBD studies found that the most commonly used CAM modalities were dietary supplements, spiritual interventions, and dietary changes. These studies found predictors of CAM use included poor quality of life, adverse effects from medications, higher parental education level, parental CAM usage, and white ethnicity (3,6,11,18).

We aimed to expand upon the existing pediatric IBD literature through the assessment of the frequency with which patients with IBD are using CAM therapy in a large, midwestern IBD center. In addition, we aimed to identify factors associated with patient and family interest in and attitude toward use of CAM. Lastly, we aimed to understand how patients perceived the role of their physicians in helping shape their care decisions regarding use of CAM.

MATERIALS AND METHODS

We conducted a survey of pediatric IBD patients seen within a large midwestern gastroenterology division at Nationwide Children's Hospital during June to July, 2014. Any patient (age 2–18 years) with an established diagnosis of CD, UC, or IC who was seen for a follow-up visit by any provider within our gastrointestinal clinic was considered. Eligible patients were identified from a clinical database the week before their clinic visit. Newly diagnosed patients (within the past 6 weeks), and patients/families who were non-English speaking were excluded. The study was approved by the Nationwide Children's Hospital Research Institute Institutional Review Board (No. 14-00346).

Questionnaire

Patients and families were approached following their clinic visit and asked to complete the questionnaire. A de-identified information sheet accompanied each questionnaire to inform the patient and parents of the research goals, benefits, and risks of the research. Completion of the entire survey was voluntary. Surveys with incomplete data were included.

Demographic information obtained from the questionnaire included the child's age, sex, race/ethnicity, parental education level, estimated family income, and insurance type (public vs private). Disease information as perceived by the patients and their family included specific IBD diagnosis, disease duration, disease severity, and quality of life.

Families were asked to complete 2 tables about therapies for IBD. Families recorded previous use of conventional therapies (CT) including 5-aminosalicylic acid, thiopurines, methotrexate, steroids, antitumor necrosis factor therapy, antibiotics, or enteral therapy. Categories of CAM included special exercise, vitamin and dietary supplements, dietary changes, stress management, and alternative professional care. The format and therapies chosen for inclusion in the CAM-related table were based on a study by Rouster-Stevens et al comparing the prevalence of CAM to CT among patients with juvenile idiopathic arthritis (19). Patients recorded if any CAM therapies had previously been used. The types of CAM therapies in the table represented our inclusive definition of CAM, which included prayer and dietary supplements such as multivitamins (MVI), vitamin D, calcium supplementation, and probiotics as CAM therapies. A narrower definition of CAM excluding MVI, vitamin D, calcium, and prayer due to the high proportion of patients using these therapies was also used. Data from the narrower definition were used for each subsequent comparative analysis. After completion of the CAM therapy table, patients recorded if they considered any of the therapies they had used to be CAM, to ascertain patient definitions of CAM. The survey also included questions about the patients’ overall health, attitudes toward CAM, and perceptions about their physicians’ attitudes and knowledge toward CAM therapy.

Simple descriptive statistics for each variable were determined. Pearson chi-square test, Fisher exact test, and the Wilcoxon rank-sum test were used for correlations. Data analyses were completed with support from Nationwide Research Institute Biostatistics Core, using SAS (Cary, NC) version 9.3.

RESULTS

Patient Demographics

Demographic data are summarized in Table 1. The survey was completed by 104 out of the 118 families (88%) that were approached for inclusion in the study. Small variability in n values for some statistics can be attributed to some patients electing to not answer all questions. Patients were an average age of 13.9 ± 3.1 years (range: 5–18 years); 57% were men. Average disease duration was 2.8 ± 2.3 years. IBD type included 75% (78/104) with CD, 19% UC (20/104), and 6% IC (6/104). Self-reported IBD severity was quiescent/mild in 58%, whereas 42% reported moderate/severe disease severity. Eighty-two percent of patients had private insurance. Household income was >$50,000 per year in 72% of families (39% were >$100,000). A very good or excellent quality of life was reported by 81% of all patients.

TABLE 1
TABLE 1:
Patient information

Conventional Therapies

All patients (n = 104) were on a CT to treat their IBD. Patients had previously used an average of 3.1 ± 1.3 CT with no significant difference by type of IBD. The most commonly used medications included corticosteroids (82%), thiopurines (60%), and antitumor necrosis factors (52%) (Table 2). Side effects from prior CT were reported by 79 of 104 (76%) patients. Side effects related to steroid therapy were most commonly reported (84%).

TABLE 2
TABLE 2:
Prior conventional inflammatory bowel diseases therapies

Complementary and Alternative Medicine Use

A complete list of CAM therapies and their use are summarized in Table 3. Using our inclusive definition of CAM, all patients reported use of at least one form of CAM. Using the more narrow definition of CAM, we found that 84% of patients had used CAM. There were no differences in CAM use between patients with UC and CD.

TABLE 3
TABLE 3:
Complementary and alternative medicine use by category

Special Exercises

Special exercise (ie, yoga, swimming) was used in 35% of patients. Women were more likely than men to use a special exercise therapy (P = 0.024).

Vitamin/Dietary Supplements

Vitamins or dietary supplements were used by 97% of patients. The most commonly used dietary supplements included MVI (91%), vitamin D (71%), calcium (41%), and probiotics (31%). Factors associated with supplement usage included patients with private (vs public) insurance (P = 0.05), and self-reported moderate/severe versus mild/quiescent disease (P = 0.002).

Dietary Changes

Fifty-eight percent of patients self-reported dietary changes, with the most commonly avoided foods being dairy (n = 16, 15%), nuts/seeds (n = 15, 14%), spicy foods (n = 15, 14%), corn (n = 12, 12%), and fried or greasy foods (n = 8, 8%). A gluten-free diet was followed by 10% of patients. Use of dietary changes was associated with any prior side effects from CT (P = 0.0007).

Stress Management

In total, 61% of patients used stress management with 45% reporting the use of prayer for health reasons. Twenty-two percent used music and 11% used a support group.

Alternative/Professional Care

Alternative medical professionals were sought out by 33% of patients. The most common form of professional care was a counselor (19%). Families in the income range of $50 to 100K were more likely to seek out alternative medicine professionals than were families in the higher income range of >$100K (P = 0.01). Side effects with CT (P = 0.02) were also associated with use of nonphysician professional care (eg, counseling, acupuncture, chiropractic, physical therapy, or massage).

Interest and Attitudes Toward Complementary and Alternative Medicine

Seventy-seven percent of families reported interest in learning more about CAM. Factors associated with increased interest in CAM included side effects from CT (P = 0.01) and self-reported moderate/severe (vs quiescent or mild) disease (P = 0.002). Although 84% of patients were using CAM by the narrow definition, only 24% of patients considered themselves to be using a CAM therapy; the remainder considered these therapies part of comprehensive conventional care.

Physicians and Complementary and Alternative Medicine

Families perceived their physicians to be knowledgeable and helpful regarding use of CAM, with 97% of families considering their practitioner to be somewhat to very knowledgeable about CAM. Physicians were the most common source of information for families about CAM (42%). Twenty-nine percent of families reported that their physician had a positive effect on their decision to use CAM (Table 4).

TABLE 4
TABLE 4:
Complementary and alternative medicine attitudes and interest

DISCUSSION

Our study evaluated factors associated with CAM usage as reported by patients and families in a large pediatric gastroenterology division in the midwestern region of the United States. When using our inclusive definition of CAM, all patients surveyed used CAM therapy. Using a narrower definition of CAM excluding MVI, vitamin D, calcium, and prayer, 84% of patients were still using CAM. The percentage of patients using CAM has increased by 34% from the most recent comparable study evaluating CAM use in pediatric IBD (11). In addition, 77% of patients and families we surveyed are interested in learning more about CAM. The 2009 study by Wong et al predicted an increase in CAM use. Our study confirms that CAM is continuing to become more widely accepted by both patients and physicians. Families reported that discussions with their care providers were their most common source of information about CAM.

As has been noted in prior studies, we found that the definition of CAM is dynamic, and the prevalence of CAM use varies and is dependent upon the definition used. When defined inclusively, as CAM was defined in 1993 (20), 100% of patients whom we surveyed used CAM. Past studies have shown CAM use in pediatric IBD to be 41% to 61% (3,6,11,18), which is a frequency comparable to other chronic pediatric diseases such as pediatric asthma 33% to 89% (21), juvenile idiopathic arthritis 38% to 92% (19,22), and autism 50% to 75% (23,24). After applying our narrower definition, 84% of patients were using CAM. Interestingly, only 24% of patients surveyed considered any of the therapies they were using to be CAM. This implies a need for physicians to ask specifically about these types of therapies in clinic visits. It may be more useful for practitioners to describe a category or class of therapies and give examples, a strategy that was used in our study, rather than simply asking about “conventional” versus “CAM” therapies.

Our study was unique in that rather than assessing predictive factors for all types of CAM use, we analyzed different categories of CAM therapies and looked for associations with use of these categories of CAM therapy. Vitamins and dietary supplements were the most commonly used category of CAM therapies. This is the first study to associate variables with different types of CAM rather than CAM as a whole. We found that female sex, having private insurance, income range of $50 to 100K, moderate/severe versus mild/quiescent disease severity, and the presence of self-reported side effects with CT affected type of CAM therapy used. Our findings confirm reports from earlier studies in regards to private insurance, disease severity, and side effects of CT (3,6,11,18,25), but differs in regards to sex and income. We found that patients with income in the middle range ($50–100K) were more likely to seek out alternative medicine professionals than those in the highest income ranges. The study by Heuschkel et al found higher income to be associated with CAM use; this association was not specific to alternative medicine professionals. Furthermore, we found that sex affected the type of CAM therapy used with women being more likely than men to use special exercise. The majority of patients reported a change in diet as part of their IBD management. Furthermore, 10% reported a gluten-free diet. The study by Gerasimidis et al in Scotland reported gluten-free diets had been tried by 15% of pediatric patients with IBD. Recognition of associated factors could help physicians anticipate which patients and families are more likely to be interested in CAM and could help guide proactive discussions about choosing types of CAM therapy (26).

Our study expands upon prior studies assessing pediatric IBD CAM use. To our knowledge, our study is the first to ask explicitly about patient/family perceptions of physician attitudes toward CAM. We found that physicians were the most common source of information about CAM therapies, suggesting patients were comfortable discussing these therapies with their practitioners. Gerasimidis et al (6) found that the majority of pediatric patients with IBD (86%) thought that practitioners were supportive of CAM use. Most patients viewed physicians as knowledgeable and somewhat supportive of their interest in CAM. There was little indication of overt negativity toward CAM. We also found a very high interest level in CAM. An interest level this high is important for physicians to recognize and use to teach patients about CAM when the opportunity presents itself.

A limitation of our study is that families’ perceptions may have been biased if they were trying to please or avoid a negative description of physician's input/attitude about CAM given that the survey was completed in the clinic setting. Having an open attitude and recognizing that some patients may have interest in CAM may make patients more likely to feel comfortable having these discussions (27). There are additional limitations to our study. All of the data were self-reported, which add the potential for recall bias. That there were questions about interest and attitudes toward CAM immediately following a list of CAM therapies added a potential for bias. We did not explore some predictive factors identified by other studies such as school absences and expenditures on nonprescription treatments (3). Future studies should consider combining data from multiple centers, or adding a non-IBD comparison group. To complement the self-reported data from patients, it would be beneficial to survey practitioners about their understanding of CAM to better delineate factors that can improve practitioner understanding and communication of integrative medicine modalities.

In conclusion, despite the changing definitions of CAM, pediatric patients with IBD frequently integrate CAM into their care plans. In our cohort, CAM use is higher than previously reported and is often used with physician guidance and support. Patient/family interest in and use of CAM is high and continues to increase compared with previously published studies in the past decade. CAM use is greatest among those with self-reported adverse effects from CT and those who reported more severely active IBD. Physicians can use this information to guide discussions with patients and families, and to proactively counsel patients about available CAM therapies.

Acknowledgments

The study was made possible by the support and funding from the Crohn's and Colitis Foundation of America and Wright State University Boonshoft School of Medicine. The authors would also like to gratefully acknowledge research coordinator Beth Skaggs and the Biostatistics Core at the Research Institute at Nationwide Children's Hospital for the support provided for this project.

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Keywords:

Crohn disease; integrative medicine; ulcerative colitis

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