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The use of complementary and alternative medicine (CAM) in paediatric patients varies between 11% and 68%. There are limited reports of its use in children with type 1 diabetes mellitus (T1DM).
To describe the use of CAM in children with T1DM, and the perceptions of both users and nonusers regarding the effect of CAM on diabetes management.
A cross-sectional, anonymous questionnaire survey was mailed to a randomly selected subgroup of patients with T1DM. Each patient’s main caregiver was asked to complete the questionnaire.
Of 403 questionnaires mailed, 195 (48%) were completed. The mean (± SD) age of the children was 12.2±4.0 years (56% boys). Use of CAM was reported in 110 children (56%) (vitamins/minerals [n=99], herbal medicine [n=22], dietary supplement [n=13]). When excluding the use of vitamins/minerals, the CAM number dropped to 47 children (24%). Only the current age of the child was significantly different between users and nonusers of CAM. In users, reasons cited for using CAM were to minimize symptoms, improve control, prevent complications and add benefits to insulin. Only 30% of CAM users stated that CAM improved diabetes control. Nonusers cited satisfaction with current diabetes treatment and lack of knowledge as reasons for not using CAM.
CAM use in children with T1DM was frequent, and appeared to be an attempt to improve control or prevent diabetes complications. However, improved control was not reported as a benefit. Diabetes care teams should assess the use of CAM in children with T1DM, and monitor for any potential positive or negative effects.
Le recours à la médecine complémentaire et parallèle (MCP) chez les patients pédiatriques varie entre 11 % et 68 %. Les rapports sur son utilisation chez les enfants atteints de diabète de type 1 (DT1) sont limités.
Décrire l’utilisation de la MCP chez les enfants atteints de DT1 ainsi que les perceptions des utilisateurs et des non-utilisateurs quant à l’effet de la MCP sur la prise en charge du diabète.
Les chercheurs ont posté un questionnaire transversal anonyme à un sous-groupe de patients atteints de DT1 sélectionné au hasard. Le principal dispensateur de soins de chaque patient a été invité à remplir le questionnaire.
Sur les 403 questionnaires postés, 195 (48 %) ont été remplis. Les enfants avaient un âge moyen (±ÉT) de 12,2±4,0 ans (56 % de garçons). L’utilisation d’une MCP était déclarée chez 110 enfants (56 %) (vitamines et minéraux [n=99], plantes médicinales [n=22], suppléments alimentaires [n=13]). Lorsqu’on excluait l’utilisation des vitamines et des minéraux, le nombre de MCP chutait à 47 enfants (24 %). Seulement l’âge courant de l’enfant était statistiquement significatif entre les utilisateurs et les non-utilisateurs de MCP. Chez les utilisateurs, les raisons invoquées pour utiliser la MCP étaient la réduction des symptômes au minimum, l’amélioration du contrôle, la prévention des complications et l’ajout des bienfaits à l’insuline. Seulement 30 % des utilisateurs de MCP déclaraient que la MCP avait amélioré le contrôle de leur diabète. Les non-utilisateurs citaient la satisfaction envers le traitement courant du diabète et l’absence de connaissances comme raisons de ne pas recourir à la MCP.
Les enfants atteints de DT1 utilisaient fréquemment la MCP, dans ce qui semblait être une tentative pour améliorer le contrôle ou prévenir les complications du diabète. Cependant, l’amélioration du contrôle ne faisait pas partie des bienfaits déclarés. Les équipes de soins du diabète devraient évaluer l’utilisation de la MCP chez les enfants atteints de DT1 et surveiller tout effet positif ou négatif potentiel.
The use of complementary and alternative medicine (CAM) has undergone exponential growth in recent years (1–3) and has evolved into a multibillion dollar industry (2,3) whose influence in modern medicine has become a force to be reckoned with. While the definition of CAM is somewhat vague and ill-defined (4), the National Institutes of Health (USA) has defined CAM as a “group of diverse medical and health care systems, practices, and products that are not generally considered to be part of conventional medicine” (5).
The current health care system is witnessing an increasing interest in the use of CAM, and this has been well documented in the United States (6–8), Canada (9,10) and Europe (11). Although children and adolescents are not exempt from its use, CAM prevalence in the paediatric population varied greatly from 11% to 68% (12). CAM is used most often by individuals who have serious, chronic or recurrent illness, sometimes for symptom control and sometimes to combat the primary disease (13). Therefore, we were not surprised to see a growing body of literature regarding the use of CAM, particularly reports demonstrating increased use of CAM in many paediatric chronic disease populations (13).
Type 1 diabetes mellitus (T1DM) is the most common paediatric endocrine disease, and one of the most common chronic conditions in children and adolescents (14). Insulin therapy is the mainstay of the medical management of T1DM. Contrary to other paediatric chronic conditions, there are very few reports in the literature of CAM use in children and adolescents. In 2002, one report from Italy described three patients with T1DM who experienced an unexpected worsening of their glycemic control due to a reduction in their insulin dosage in favour of some ‘alternative’ treatments using herbs, vitamins, alternative diets and trace elements prescribed by nonmedical professionals (15). Still, two recent large studies (16,17) – one in Germany and the other in the United States – showed that 18.4% and 36.4% of children with T1DM use CAM. However, there is a paucity of information on the frequency of serious side effects associated with most of the alternative therapies (18).
The aim of our study was to quantitatively describe the patterns and determinants of CAM use in children and adolescents with T1DM receiving care at the Alberta Children’s Hospital Diabetes Clinic in Calgary, Alberta.
The present study used a cross-sectional, anonymous postal survey method, based on the total study design described by Dillman (19), to optimize the response rate. This method uses personalized cover letters, individual stamps, postcard reminders and a second mailing of the questionnaire after four weeks if no answer is received. Eligible children were identified by the diabetes clinical database from the Alberta Children’s Hospital Diabetes Clinic. The only inclusion criterion was a diagnosis of T1DM before 18 years of age that had been made by an experienced paediatrician or a paediatric endocrinologist. The questionnaire was mailed to a randomly selected subgroup of caregivers of patients with T1DM followed in the diabetes clinic (representing approximately one-half of the clinic population). Parents of eligible children were mailed an eight-page anonymous, self-administered survey on the use of CAM. The study was approved by the Conjoint Research Ethics Board of the University of Calgary (Alberta). Informed consent was assumed on respondent participation as indicated by return of the completed questionnaire.
A self-reporting, 20-item questionnaire based on a previous survey on CAM use in children (20) was developed. Validation of this tool was conducted using five experts for face validity and 10 families for ease of administration and wording before the start of the study. The response format contained a combination of closed-ended and short-answer questions. The questionnaire contained information about patterns of CAM use, types of CAM testing that have been performed, determinants of CAM use, financial costs, sources of information about CAM, reasons for parents to use or not use CAM for their children, previous conventional treatments used, communication between the diabetes team at the Alberta Children’s Hospital and caregivers regarding concerns surrounding CAM use for children and adolescents with T1DM, sociodemographic information about the family, and medical information about the child or adolescent with T1DM. Survey respondents were asked to complete several tables that listed different types of CAM treatments. In addition, they were asked whether their child had ever tried any of the products or therapies listed. For each treatment, respondents were asked whether they believed it was useful, whether they had used it more than once and whether a doctor was aware that the treatment was being used. Demographic data, such as age of the child, age at diagnosis and parent education level, were also collected.
Descriptive statistics, including means, SDs and frequencies, were used to summarize response variables. Comparisons between groups were conducted by χ2 analysis for categorical variables and by Student’s t test for continuous variables, with significance levels set at P<0.05. Logistic regression was used to adjust for intercorrelations among multiple variables. To compare how CAM users and nonusers ranked the importance of reasons for choosing therapy, Wilcoxon’s rank sum test was used for two-group comparisons.
Of the 403 surveys originally mailed, 195 surveys were completed and returned, yielding a response rate of 48%. The population consisted of 109 males (56%) and 86 females (44%) with an average age of 12.2±4.0 years and a duration of diabetes of 5.2±3.1 years. Fifty-one children (26%) reported having another medical condition in addition to diabetes (ie, asthma, hypothyroidism, hyperthyroidism, celiac disease, etc). This sample was similar to the overall population in terms of age, sex distribution, duration of diabetes and frequency of other medical conditions.
Of the 195 respondents, 110 of the caregivers (56.4%) reported having used CAM for their child with diabetes and 51 children were still using CAM at the time of the survey’s completion. When vitamin and mineral use was excluded from this count, all-time use of CAM dropped to 47 children (24%). In terms of CAM usage, only an older age of the child and a trend toward a longer duration of diabetes were associated with use of CAM (Table 1).
The types of CAM most frequently used were vitamins and minerals (n=99), herbal medicines (n=22) and dietary supplements (n=13) (Table 2). Interestingly, according to parents, the use of vitamins was suggested by the diabetes clinic members in 50% of cases, by alternative medical members or pharmacists in 10%, with the remaining based exclusively on the decision of the family. Use of modified diets (aside from the one recommended for diabetes) was reported for only seven participants. Furthermore, although the survey did not include spiritual care or prayer, this was mentioned as an important part of the child’s care in the extra space for comments by five respondents.
Families were asked to rate 11 factors according to their importance in making a decision regarding CAM use. The results are shown in Table 3. In addition, the four most-cited reasons for CAM use were the following: to provide an additional benefit to insulin treatment in the management of diabetes; to minimize the symptoms of diabetes; a belief in the efficacy of CAM treatment from personal or familial experience; and a belief in the role of CAM in preventing complications.
As shown in Table 4, 30% of the user population believed that the use of CAM improved metabolic control, while 84% believed that CAM had no impact on the frequency of hypoglycemia. In the same group, 64% mentioned an improvement in quality of life. Nonusers of CAM reported satisfaction with current treatment (82%) and lack of or limited knowledge about CAM (58%) as reasons for not utilizing it. Of note, none of the families reported having stopped insulin while trying CAM.
Families were asked to identify who recommended the CAM therapy (excluding vitamins and minerals) that they tried. They cited mostly self-research (31%), family or friends (22%), or physicians (18%). The five most frequently cited sources of knowledge about CAM were physicians, dietitians, family, nurses and reported stories in the media. Of the 94 occurrences of CAM use (excluding vitamins and minerals) reported in 47 children, 29 were shared with the diabetes team, 27 were not disclosed, and in the remaining 38 occurrences, parents did not remember whether they had discussed CAM use with the diabetes team. Therefore, only 30% of CAM use had been disclosed to or discussed with the diabetes clinic team.
In the current literature, reasons for CAM use are largely based on experience with adult populations. Reasons include dissatisfaction of patients with the effectiveness of conventional treatments (21–24), the side effects of conventional therapies (25,26), the perception that conventional practitioners communicate and interact less effectively than their complementary counterparts (25), the need for a sense of control (26,27), personal identification with the philosophical underpinnings of CAM (28), the perception that CAM is natural and, therefore, safe (12), and a belief that CAM is effective (29). However, these theories may not be directly transferrable to parent or guardian decision-making for children and adolescents with T1DM, for whom the use of insulin is an absolute treatment required to avoid death or serious complications such as diabetic ketoacidosis.
We reported on the use of CAM in 195 children diagnosed with T1DM and followed in a Canadian tertiary paediatric diabetes centre. The present article is one of the largest surveys and, to our knowledge, the only Canadian study exploring the use of CAM in children with diabetes. The frequency of CAM use (excluding vitamin and mineral use) determined in the present study (24%) is comparable with reports in other populations of children with T1DM (6% to 43%) (16,17,30,31) and other Canadian general paediatric populations, which have varied from 11% to 24% (25,30,32,33). Some of the wide variation reported in frequency of use can be explained by the definition of CAM used. This is easily illustrated by our findings: 47 users (24%) when excluding the use of vitamins and minerals versus 110 (56%) when including these supplements.
In earlier studies, factors inconsistently found to influence use of CAM in children have been ethnicity (from cultural beliefs) (34), the educational level of parents (16,25,35), older children (17,25) and the use of CAM by parents (1,25,34). In the current report, information about ethnicity or parental use of CAM was not collected. In contrast to previously cited studies, the education level of parents was not found to be associated with CAM. This last observation may be explained by increased accessibility of information to a wider population through use of the Internet compared with an earlier Canadian study by Spigelblatt et al (25). However, we did find, similarly to others (17,25), that children who used CAM were older than children who did not use CAM.
In the present study, all subjects continued to use insulin even when opting for a trial of CAM. This finding is in concordance with the study by Dannemann et al (16), in which the parents of children with T1DM using CAM did not question the need for insulin. When accepting this, parents may expect CAM to be less helpful and, therefore, refrain from using it. Two-thirds of parents using CAM subjectively stated an improved quality of life from the use of CAM. This is a similar percentage observed by Dannemann et al (64% in their sample). Unfortunately, in both studies, this improved quality of life was assessed by family perception (single question) rather than through formal, more reliable and valid quality-of-life measurements. A recent study specifically designed to examine the relationship between quality of life measured with the Pediatric Quality of Life Inventory (PedQL) questionnaire and CAM use in children with T1DM (17) found no overall association between CAM use and quality of life. However, a subanalysis revealed a positive association between use of CAM diets and quality of life, but a negative association between supplements or stress-reduction therapies and quality of life. These authors also observed that smaller studies usually find no association with CAM and quality of life, in contrast to larger studies (more than 500 participants), which often report an association between poorer quality of life and CAM use.
The most common CAM therapies reported in the present study were vitamins and minerals, herbal therapies and dietary supplements. In our clinic, it is very common to suggest to patients that they use vitamins when we determine that they are not meeting their required daily dietary intake of foods from certain food groups as per the Canadian dietary recommendations. Thus, in these cases, recommended vitamin use would not be considered by the health care team and the family as using a form of CAM to manage the patient’s diabetes. The rate of use dropped from 56% to 24% when the use of vitamins was excluded from our definition. This illustrates the need to be specific in the definition used when comparing reports on CAM use because it has an impact on rates, and may explain some of the wide variations found in different reports.
As with mainstream treatments, CAM therapies have significant potential for adverse effects and drug interactions, some of which may be potentially serious (18,36). There is a distinct possibility that families using CAM for their children may not inform their paediatrician or family practitioner of this use. There is some information emerging regarding parent or guardian communication with their paediatrician or primary care physician about the use of CAM. A recent study of CAM use in children (37) found that 53% of the parents surveyed wished to discuss CAM with their paediatrician and 36% reported that they had discussed it with their child’s physician. In another study (38), 40% to 50% of paediatric CAM users told their physicians about it directly. In addition, a survey of paediatricians (39) revealed that 87% had been asked about CAM by a patient or parent in the three months before they were surveyed for that study. The authors mentioned that paediatricians recognize that many patients were interested in using CAM therapies, but were not comfortable discussing or recommending CAM therapies to their patients. If a child’s parents do not tell their doctor about CAM use, there is a potential risk for an adverse outcome. Therefore, it is important for the treating physician to be aware of CAM use, and to foster an open and trusting relationship with the family to avoid undesirable CAM interactions with the current treatment. Most of our clinic population had not informed their diabetes team about the use of CAM. Our study showed that medical professionals were still the most frequently sought sources of information about CAM use. This should be regarded as an opportunity to ensure the safety of patients who are considering the use of CAM.
For most parents, the use of CAM was determined to be an effort to improve control of the patient’s diabetes, or to prevent and curb complications in diabetic management. In contrast, improved metabolic control was not a reported benefit of the use of CAM. Our results showed that CAM was used as a supplement, rather than as a substitute, for insulin therapy. Again, these findings were similar to those of Dannemann et al (16).
The present study did have limitations. The small number of individuals who used CAM in the current sample makes the overall generalizability of the findings somewhat limited. As with any self-reported survey, there may be a selection bias in which those who chose to participate may not be representative of the whole population. Although the questionnaire was anonymous, individuals who would not disclose use of CAM with their diabetes care team may have been less likely to complete the survey. Another confounder is that parental report would not have yielded all of the correct information about adolescent use of supplements or CAM. In addition, the design of our questionnaire did not distinguish the purpose of the use of multivitamins: for general health, as recommended by a diabetes team dietitian, or used in the context of CAM. To maximize the response rate and maintain the anonymity of the questionnaires, we did not collect information about the child’s ethnicity or objective measures of metabolic control. We also could not cross-check information about medical history or outcomes with the child’s chart. Finally, we did not include questions about parental use of CAM, which has been found to be a predictor of CAM use in children (1).
Investigation of the use of CAM in children and adolescents with T1DM is important for a number of reasons. First, information derived from the present survey provides a better description of CAM use in children and adolescents. Second, it is very important that diabetes care teams enquire routinely, in a nonjudgemental manner, about CAM use in children and adolescents with T1DM, so that families feel at ease sharing their thoughts and beliefs with them. In addition, information about CAM use in the present population can be used to monitor patients who use CAM in terms of both benefits and side effects of these therapies. Finally, parents need to be reminded that very little research has been conducted to determine the efficacy, effectiveness and safety of many CAM therapies.
The use of CAM in children with T1DM is relatively common. Greater insight into the influences of CAM in the management and treatment of patients with T1DM could be achieved through assessment by diabetes care teams on the use of CAM in children with T1DM, and monitoring for any potential positive or negative effects. Similar to assessment of medication use or allergies, assessment of the use of CAM should be part of the routine evaluation of children with T1DM and any other chronic disease.
The authors acknowledge the assistance of Ms Allison Husband for her help with validation of the questionnaire, and Ms Claire Gougeon for data entry and analysis in the preparation of the manuscript. This study was supported by internal funding. All three authors had full access to all the data in the study, and take responsibility for the integrity of the data and the accuracy of the data analysis.