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Use of complementary and alternative medicine (CAM) by parents in their children and adolescents with epilepsy – Prevelance, predictors and parents' assessment
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Official Journal of the European Paediatric Neurology Society
Original article
Use of complementary and alternative medicine (CAM) by parents in their children and adolescents with epilepsy e Prevelance, predictors and parents' assessment Nicole Hartmann a, Martina P. Neininger b, Matthias K. Bernhard a, Steffen Syrbe a, Petra Nickel a, Andreas Merkenschlager a, Wieland Kiess a, Thilo Bertsche b, Astrid Bertsche a,* a
University Hospital for Children and Adolescents, Centre for Paediatric Research, Liebigstr. 20a, 04103 Leipzig, Germany b Dept. of Clinical Pharmacy, Institute of Pharmacy, Drug Safety Center, Leipzig University, Eilenburger Str. 15a, 04317 Leipzig, Germany
article info
abstract
Article history:
Background: The use of complementary and alternative medicine (CAM) is popular. Parents
Received 10 September 2015
of children suffering from epilepsy may also consider administering CAM to their children.
Received in revised form
Systematic data about frequency of and motivations for CAM use, however, are scarce.
22 October 2015
Methods: In a university hospital's neuropaediatric department parents of patients aged
Accepted 1 November 2015
0e18 years suffering from epilepsy were consecutively invited to take part in a structured interview during 4 months in 2014.
Keywords:
Results: Of the invited parents, 164/165 (99%) agreed to participate. From those, 21/164 (13%)
Complementary and alternative
stated that they used CAM in their child. The highest independent predictive value of CAM
medicine (CAM)
use was the occurrence of adverse drug events (ADE) of anticonvulsants as judged by
Homeopathy
parents. Patients affected by ADE had a 5.6 higher chance of receiving CAM compared to
Osteopathy
patients without ADE. Most commonly used were homeopathy (14/21, 67%) and osteopathy
Children
(12/21, 57%). The internet was the most frequently used source of information (14/21, 67%).
Epilepsy
Of the parents, 10/21 (48%) described positive effects of CAM on seizure frequency, 12/21 (57%) on general condition of their child, and 20/21 (95%) wished to continue CAM for epilepsy therapy. From the non-users of CAM, 91/143 (66%) expressed the desire to learn more about CAM for epilepsy therapy. Limitations: Our study was performed in a university hospital in a large urban city in Eastern Germany. CAM user rates can differ in other parts of Germany and Europe, in other institutions and for chronic diseases other than epilepsy.
Abbreviations: CAM, complementary and alternative medicine; ADE, adverse drug events. * Corresponding author. University Hospital for Children and Adolescents, Centre of Social Paediatrics (SPZ), Centre for Paediatric Research, Liebigstr. 20a, 04103 Leipzig, Germany. Tel.: þ49 3 41 97 2 62 42; fax: þ49 3 41 97 2 60 09. E-mail address: [email protected] (A. Bertsche). http://dx.doi.org/10.1016/j.ejpn.2015.11.003 1090-3798/© 2015 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.
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Conclusion: The main reason for CAM use was the occurrence of ADE of anticonvulsants. More than half of the parents saw a benefit of CAM for their children. Almost all parents wished to continue CAM use, even those who did not see concrete positive effects. © 2015 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.
1.
Introduction
Cerebral seizures are common in children and adolescents. In Europe, the estimated number of children and adolescents suffering from epilepsy is 900,000 and worldwide about 10.5 million.1,2 Although more than 20 anticonvulsants are licensed for long-term treatment of epilepsy, a third of patients does not become seizure free.3e5 In this situation, parents also search for other options to support their children and may consider the use of complementary and alternative medicine (CAM).6,7 CAM includes practices such as homeopathy, osteopathy, acupuncture, EEG biofeedback, naturopathic treatment, yoga, kinesiology, vitamins and herbal remedies.8e10 The use of CAM for chronic diseases is becoming more common, but there is still a lack of population-based descriptions of its pattern and frequency of use, especially for children suffering from epilepsy.11e13 Worldwide, only few data on the use of CAM in children suffering from epilepsy exist.14e18 To our knowledge, only one study was conducted in Germany so far. 37% of parents of 6e12-year-old patients of a Western German university hospital who received a questionnaire by mail stated they used CAM for the epilepsy of their children. The study revealed a significant level of financial and time resources spent on CAM. Among the predictors for CAM use were duration of illness, use of CAM by parents themselves, and the parents' desire for their children to receive a holistic and natural treatment.17 The aim of our study was to analyse incidence of and motivation for CAM use in paediatric epilepsy patients, aged 0e18 years, of an Eastern German university hospital by consecutively interviewing their parents. We also aimed at gaining knowledge of motivations of parents who did not use CAM for the epilepsy therapy of their children.
2.
Patients and methods
2.1.
Patients and setting
hospitalised at the university hospital. Parents with insufficient German language skills and parents who were not legal guardians of their child were not included in the study. Informed consent was gained from all participating parents.
2.2.
The structured interview was developed by an expert panel including neuropaediatricians, psychologists and clinical pharmacists. By providing structured questions, we aimed to ensure that the interviewing process was consistent for all participating parents. The following aspects were included: 1. Questions about complementary and alternative medicine use (pattern and frequency of CAM use, information sources, motivations for using CAM, expectations in CAM, influence on conventional therapy, monthly costs and time spent on CAM, benefits, success and undesired side effects of CAM). 2. Demographics of the parents and the child. 3. Previous therapy with anticonvulsive drugs and adverse drug events (ADE) of anticonvulsants as judged by parents. Parents were asked if their child experienced ADE of anticonvulsants. They were asked for kind and frequency of occurrence of ADE and if the quality of life of the child was decreased due to ADE. 4. Furthermore, non-CAM users were asked for reasons for not using such therapies and whether they had a desire for advice on CAM. At the beginning of the interview, a list of the most common CAM therapies was shown to all participating parents (“naturopathic treatment”, “enzyme therapy”, “homeopathy”, “Schuessler tissue salts”, “vitamins”, “Bach flower remedies”, “herbal medicine”, “kinesiology”, “osteopathy”, “acupuncture”, “EEG biofeedback”, “magnetopathy”, “chiropractic”, and “yoga”). We used the terminology as used by the therapy providers without any scientific confirmation of the accuracy of the terms.
2.3. After obtaining the approval of the local Ethics Committee, this prospective observational study was performed at the neuropaediatric department of a university hospital located in the eastern part of Germany for the duration of 4 months in 2014. We performed a structured interview by using a questionnaire consisting of predefined questions. We consecutively included all patients aged from 0 to 18 years with the diagnosis “epilepsy” by ICD-10-GM that had an outpatient appointment at the neuropaediatric department or were
Structured interview based on a questionnaire
Statistics
Calculations were performed using SPSS (Statistical Package for the Social Science, Version 20, IBM, USA). Frequencies are reported as numbers and percentages, continuous data as median with first (25%) and third (75%) quartile (Q25/Q75) and minimum/maximum as appropriate. For comparison of CAM users and non-users we applied Chi-square tests, Fisher's Exact tests or Mann-Whitney-U tests depending on the underlying data. In addition to these standard tests, we
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Table 1 e Characteristics of parents and patients; n.s.: not significant with p > 0.05. Variables Age of surveyed parent Median Minimum Maximum Q25 Q75 Sex of surveyed parent (%) Male Female School graduation of the mother (%) No school graduation Special school “Hauptschule” (a school that prepares students mainly for vocational blue-collar careers) “Mittelschule” (a school that prepares students mainly for vocational white-collar careers) “Abitur/Fachhochschulreife” (i.e. the diploma necessary for entry into higher education) No statement School graduation of the father (%) No school graduation Special school “Hauptschule” (a school that prepares students mainly for vocational blue-collar careers) “Mittelschule” (a school that prepares students mainly for vocational white-collar careers) “Abitur/Fachhochschulreife” (i.e. the diploma necessary for entry into higher education) No statement Nationality (%) German Other Family income (%) <500V 500Ve < 1000V 1000Ve < 1500V 1500Ve < 2000V 2000Ve < 2500V 2500Ve < 3000V 3000Ve < 3500V 3500V and more No statement Religious affiliation (%) Yes No Parents' knowledge of epilepsy (self-estimation, %) Very good Good Satisfactory Fair Insufficient Burden of the disease as perceived/by parents (%) Very strong Strong Medium Little Not at all Use of CAM by parents themselves (%) Yes No Child's age (years) Median Minimum
CAM non-users (n ¼ 143)
CAM users (n ¼ 21)
p-value
38 20 57 32 43
39 28 47 35 43
n.s. (p ¼ 0.549)
31 (22) 112 (78)
4 (19) 17 (81)
n.s. (p ¼ 0.521)
12 (8) 1 (1) 40 (28)
0 (0) 0 (0) 4 (19)
48 (34)
4 (19)
38 (27)
13 (62)
4 (3)
0 (0)
12 (8) 1 (1) 45 (31)
0 (0) 0 (0) 6 (29)
32 (22)
5 (24)
38 (27)
8 (38)
15 (1)
2 (10)
n.s. (p ¼ 0.148)
137 (96) 6 (4)
21 (100) 0 (0)
n.s. (p ¼ 1.000)
6 (4) 17 (12) 19 (13) 13 (9) 20 (14) 19 (13) 16 (11) 25 (17) 8 (6)
0 0 2 4 3 1 5 6 0
(0) (0) (10) (19) (14) (5) (24) (29) (0)
n.s. (p ¼ 0.055)
37 (26) 106 (74)
9 (43) 12 (57)
n.s. (p ¼ 0.122)
11 61 44 16 11
(8) (43) (31) (11) (8)
3 (14) 13 (62) 5 (24) 0 (0) 0 (0)
p ¼ 0.013
17 28 43 34 21
(12) (20) (30) (24) (15)
3 5 8 3 2
n.s. (p ¼ 0.311)
(14) (24) (38) (14) (10)
45 (31) 98 (69)
15 (71) 6 (29)
8 1
9 1
p ¼ 0.004
p ¼ 0.001
(continued on next page)
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Table 1 e (continued ) Variables
CAM non-users (n ¼ 143)
Maximum Q25 Q75 Child's sex (%) Male Female
performed two types of binary logistic regressions in order to analyse potential predictors of CAM use. Firstly, we conducted a univariate regression of CAM use on each potential predictor variable. This procedure simultaneously served as a robustness check for the results of our standard tests. Secondly, we regressed CAM use on all significant predictors identified in the univariate setting. That is, we used a multivariate setting to control for the fact that a given predictor might simply be a proxy for another. This allowed us to identify key predictors in the predictor set. As a general rule, variables with a p-value 0.05 in the univariate regressions were included in the multivariate analysis. For each binary regression, we report
CAM users (n ¼ 21)
p-value
17 5 12
16 5 11
n.s. (p ¼ 0.661)
75 (52) 68 (48)
12 (57) 9 (43)
n.s. (p ¼ 0.816)
the odds ratio (OR), 95% confidence interval, and the p-value. Again, a p-value 0.05 was considered to indicate significance.
3.
Results
3.1.
Characteristics of patients and their parents
During the study period, 165 parents were invited to participate in the survey. A total of 164/165 (99%) agreed to take part in the interview. CAM use for the epilepsy treatment of their
Table 2 e Epilepsy and conventional therapy of patients; n.s.: not significant with p > 0.05. Variables
CAM non-users (n ¼ 143)
CAM users (n ¼ 21)
Duration of epilepsy (years) Median 3.32 2.9 Minimum 0.03 0.3 Maximum 17.15 10.40 Q25 1.88 1.93 Q75 7.09 5.40 Anticonvulsant medication (%) No medication 17 (12) 2 (10) 1 anticonvulsive drug 64 (45) 7 (33) 2 anticonvulsive drugs 41 (29) 6 (29) 3 anticonvulsive drugs 15 (10) 6 (29) 4 anticonvulsive drugs 6 (4) 0 (0) Number of epileptic seizures during the past 12 months (or since diagnosis of epilepsy if duration of epilepsy < 1 year; %) None 59 (41) 3 (14) 1e2 26 (18) 3 (14) 3e4 12 (8) 3 (14) 5e6 5 (3) 0 (0) more than 6 41 (29) 12 (57) Lack of efficacy of conventional medical therapy from the parents' point of view (%) Distinct deterioration of epilepsy 2 (1) 1 (5) Deterioration of epilepsy 14 (10) 4 (19) No change of epilepsy 3 (2) 1 (5) Amelioration of epilepsy 45 (31) 10 (48) Distinct amelioration of epilepsy 60 (42) 2 (10) No statement/no medication 19 (13) 3 (14) Seizure freedom with medication (%) Yes 66 (46) 7 (33) No 60 (42) 12 (57) No statement/no medication 17 (12) 2 (10) Seizure reduction with medication (%) Yes 112 (78) 15 (71) No 14 (10) 4 (19) No statement/no medication 17 (12) 2 (10) Adverse drug events as judged by parents (%) Yes 63 (44) 17 (81) No 59 (41) 2 (10) No statement/no medication 21 (15) 2 (10)
p-value
n.s. (p ¼ 0.532)
n.s. (p ¼ 0.203)
p ¼ 0.005
p ¼ 0.002
n.s. (p ¼ 0.212)
n.s. (p ¼ 0.229)
p ¼ 0.007
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Table 3 e Univariate analysis of predictors of CAM use. Variable
p-value OR
95% CI Lower bound Upper bound
School graduation of the father School graduation of the mother Family income Parents‘ knowledge of epilepsy (self-estimation) Use of CAM by parents themselves Burden of the disease as perceived by parents Number of epileptic seizures in the past 12 months (or since diagnosis of epilepsy if duration of epilepsy < 1 year) Lack of efficacy of conventional medical therapy from the parents’ point of view Adverse drug events as judged by parents Duration of epilepsy Age of surveyed parent
children was reported by 21/164 (13%) parents, whereas 143/ 164 (87%) claimed they had not used CAM for their children's epilepsy so far. Characteristics of patients and parents are displayed in Table 1. Table 2 summarises information on children's epilepsies and conventional therapies of the patients.
3.2.
Predictors of CAM use
In the univariate analysis we found correlations of CAM use with a higher school graduation of the mother, more parents' knowledge of epilepsy (self-estimation), use of CAM by parents themselves, a higher number of epileptic seizures in the past 12 months (or since diagnosis of epilepsy if duration of epilepsy < 1 year), lack of efficacy of conventional medical therapy from the parents‘ point of view, and occurrence of adverse drug events (ADE) of anticonvulsants as judged by parents (Table 3). In the multivariate case that controls for potential interaction between the predictors, only the occurrence of adverse drug events (ADE) of anticonvulsants as judged by parents remains a significant predictor of CAM use. Patients who were affected by ADE in the past had a 5.633 higher chance of receiving CAM compared to patients without ADE (Table 4).
3.3.
Included in multivariate model
0.113 0.008 0.054 0.014 0.001 0.311 0.008
1.482 2.246 1.259 2.119 5.444 1.217 1.344
0.911 1.232 0.996 1.162 1.982 0.832 1.081
2.411 4.096 1.591 3.864 14.954 1.782 1.670
No Yes No Yes Yes No Yes
0.009
1.712
1.142
2.565
Yes
0.007 0.365 0.517
7.960 0.937 1.023
1.763 0.814 0.956
35.947 1.079 1.094
Yes No No
67%) and osteopathy (12/21, 57%), for detailed information see Table 5. Parents decided to use CAM for epilepsy therapy of their children after a median time of 6 months (Q25/Q75: 0/12 months, range 0e42 months) after the diagnosis. Sources of information used by parents (multiple answers possible) were the internet (14/21, 67%), family and friends (13/21, 62%), treating physicians (9/21, 43%), non-medical practitioner (German “Heilpraktiker”, 8/21, 38%), newspapers (7/21, 33%), pharmacists (5/21, 24%), and others (6/21, 29%).
3.4.
Motivations and expectations
Asked for their motivation to use CAM for the epilepsy therapy of their children, 20/21 (95%) of parents expressed the desire to try every possible treatment option. 16/21 (76%) judged CAM as more natural and 17/21 (81%) believed CAM has less side effects than conventional medical therapies. 5/21 (24%) assumed that herbal and natural remedies are riskless. In one case, the parents stated they used CAM because they were unsatisfied with the conventional care. All parents (21/21, 100%) expected an improvement in general condition, and 20/ 21 (95%) a reduction of seizure frequency. Other expectations were reduction of stress (18/21, 86%), a holistic and individual perception (15/21, 72%), and a reduced need for anticonvulsant medication (13/21, 62%).
Prevalence and pattern of CAM use 3.5.
Of the 21 parents who stated they used CAM for the epilepsy of their children, 15 (71%) did so at the time of the survey, 6 (29%) in the past. Most commonly used were homeopathy (14/21,
Communication to treating physician
Of all interviewed CAM users, 16/21 (76%) informed their child's treating physician about the use of CAM. These parents
Table 4 e Multivariate analysis of predictors of CAM use. Variable
School graduation of the mother Parents' knowledge of epilepsy (self-estimation) Use of CAM by parents themselves Number of epileptic seizures during the past 12 months (or since diagnosis of epilepsy if duration of epilepsy < 1 year) Lack of efficacy of conventional medical therapy from the parents' point of view Adverse drug reactions as judged by parents
p-value
OR
95% CI Lower bound
Upper bound
0.110 0.072 0.125 0.110
1.840 2.096 2.544 1.301
0.870 0.936 0.771 0.942
3.890 4.694 8.400 1.797
0.924 0.039
1.028 5.633
0.585 1.091
1.807 29.086
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Table 5 e Methods of CAM used for children with epilepsy as stated by their parents (multiple answers possible). Used CAM therapy (n ¼ 21)
Treated children, n (%)
Homeopathy Osteopathy Schuessler tissue salts Natural remedies Bach flower therapy Yoga Vitamins Kinesiology Chiropractic Others
14 12 6 4 4 4 4 2 2 7
(67) (57) (29) (19) (19) (19) (19) (10) (10) (33)
were asked about their physician's approach regarding their CAM use. In 2/16 (12%) children, the treating physician performs the CAM therapy himself, while in 13/16 (82%) children, he does not perform the CAM therapy himself but approves of it, according to the parents. In 1/16 (6%), the parents could not assess the doctor's attitude. 5/21 (24%) did not tell their neuropaediatrician about their CAM use. When they were asked why they decided not to provide their physician with this information (multiple answers were possible), 4/5 (80%) stated that they did not consider this information important, and in 4/5 (80%), the treating physician did not actively ask for CAM therapies of the child. 1/5 (20%) thought that the treating physician would not endorse CAM therapies.
3.6.
Effectiveness of CAM
Freedom from seizures during CAM use was reported in 4/21 (19%) children, and in 6/21 (29%), the seizure frequency was reported to have been reduced. Of all CAM-using parents, 9/21 (43%) stated they did not observe any effects of CAM. An increase of seizures during the use of CAM was reported in 1/21 (5%) case. 1/21 (5%) could not assess the effectiveness of CAM. Furthermore, parents were requested to estimate other changes during the use of alternative therapies. The answers to these questions are displayed in Table 6. Of all CAM-using parents, 2/21 (10%) judged the total success of CAM as “excellent” and 13/21 (62%) as “rather good”. In 6/21 (29%) of patients, the therapies were judged as not having any effect. No parent, however, described a deterioration of the disease.
Table 6 e Changes observed by parents during CAM treatment of their children suffering from epilepsy (n ¼ 21). Improved Unvaried Aggravated I don't know Seizure frequency General health/ quality of life Coping with epilepsy Coping with everyday life Emotional stability
8 (38%) 12 (57%)
12 (57%) 6 (29%)
0 (0%) 0 (0%)
1 (5%) 3 (14%)
9 (43%)
10 (48%)
0 (0%)
2 (10%)
9 (43%)
10 (48%)
0 (0%)
2 (10%)
7 (33%)
11 (52%)
0 (0%)
3 (14%)
3.7.
Conventional anticonvulsive medication and CAM
Asked to compare the effect of CAM and conventional anticonvulsive medication, 1/21 (5%) of parents judged CAM as superior, 5/21 (24%) as equally effective, whereas 7/21 (33%) estimated the effect of CAM as inferior. 8/21 (38%) did not feel able to compare therapies. Of the 21 parents using CAM in their children 17 (81%) reported ADE of anticonvulsants (see Table 2). The ADE reported were (multiple answers possible) concentration deficit/fatigue: 14, behavioural problems/aggressiveness: 6, delay in speech development: 2, enuresis: 1, diplopic images: 1, liver impairment: 1, dry skin: 1, coryza: 1, cold limbs: 1, weakening of immune system: 1. The frequency of ADE was described as permanent by 11/17 (65%) parents, frequent by 5/17 (29%) parents and seldom by 1/17 (6%) parent. Asked if quality of life was decreased by ADE of anticonvulsants, 11/17 (65%) stated quality of life was severely decreased, 6/17 (35%) said it was mildly decreased. No parent stated there was no decrease of quality of life due to ADE. The conventional anticonvulsant therapy was not altered by parents themselves in 18/21 (86%) patients. 2/21 (10%) of parents partially reduced the anticonvulsant medication and 1/21 (5%) child had no long-term medication. According to the patient charts the dose of anticonvulsant medication was reduced due to ADE in 7/17 patients (41%), in 8/17 patients (47%) medication was changed, in 2/17 (12%) medication was continued without any change. 9/21 (43%) parents assumed that there could be interactions between CAM and conventional anticonvulsive medication. 6/21 (29%) were able to provide concise information on the assumed effect of interactions, e.g. increase of seizure frequency.
3.8.
Monthly and total expenditures
11/21 (52%) parents stated they did not pay more than 50V per month. 5/21 (24%) paid 50e100V for CAM per month, 4/21 (19%) 100e150V and in 1/21 (5%) of cases, parents paid more than 200V per month. 3/21 (14%) stated they did not pay more than 100V in total for CAM therapies. 9/21 (43%) estimated the total costs for epilepsy treatment with CAM at 100e500V, 6/21 (29%) at 500e1000V, 1/21 (5%) at 1000e3000V, and in 2/21 (10%), costs were higher than 5000V. The total amount of costs for CAM was not covered by health insurances in any of the patients. 7/21 (33%) received some benefits from their health insurances for osteopathy, 2/21 (10%) for homeopathy. 18/21 (86%) of parents stated they were willing to pay more for CAM therapies if their child became seizure free. 1/21 (5%) thought that the treatment was too expensive, 2/21 (10%) were indifferent regarding therapy costs.
3.9.
CAM use in the future
Of the parents using CAM for the epilepsy of their children, 20/ 21 (95%) expressed a desire to continue CAM use in the future, and 16/21 (76%) would advise other parents of children suffering from epilepsy to ask for CAM.
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3.10.
Reasons for not using CAM
The trust in conventional medicine (108/143, 76%) and the lack of knowledge of CAM (94/143, 66%) were the reasons most commonly mentioned for not using such therapies. Of the parents not using CAM, 13/143 (9%) rated the providers of alternative therapies as unreliable, and 7/143 (5%) judged CAM as useless. Altogether, 91/143 (67%) of parents not using CAM for epilepsy treatment of their children wished to get more information about CAM.
3.11.
CAM use for other diseases
33/143 (23%) of all non-users and 3/21 (14%) of all CAM users for epilepsy therapy of their children applied CAM to fight other diseases such as a fever or the common cold.
4.
Discussion
4.1.
General considerations
We performed a prospective study on CAM use in routine care of children with epilepsy by performing a structured interview with their parents. We aimed at gaining information on prevalence of, predictors for and parents' assessment of CAM use. In this study, approximately 13% of all interviewed parents used at least one of the predefined CAM therapies for epilepsy treatment of their child. This indicates a frequent use of CAM in this population, especially as in the eastern part of Germany, CAM use is not as popular as in other parts.19,20 About half of the parents reported positive effects of CAM on seizure frequency and on their child's general condition. Surprisingly, even a high fraction of the other half of parents not reporting such a positive outcome intended to continue CAM. Even those parents who had not administered CAM to their children yet wished to be better informed about CAM, indicating the popularity of these therapies. Interestingly, not the lack of efficacy of conventional therapy was the main reason to use CAM, but the occurrence of ADE in the current or former anticonvulsive therapy as judged by parents (not necessarily confirmed by the treating physician). The majority of parents using CAM reported ADE and in most cases the occurrence was described as permanent or frequent. This indicates that the occurrence of ADE as judged by parents should be addressed in greater extent in routine practice. Otherwise, parents might quit the prescribed medication to begin a CAM treatment without their neuropaediatricians' knowledge. Many parents started CAM very early in epilepsy treatment. Other reasons than ADE such as personal convictions might contribute to this decision as well. Parents who have a positive attitude towards CAM might be more critical concerning ADE and more easily refer symptoms as fatigue as ADE of medication. In most cases medication was reduced or changed by the neuropaediatrician if ADE were reported by parents. Nevertheless, parents decided to continue CAM use. This also indicates that certain subgroups of parents are very likely to use CAM in their children. Health care professionals should provide more information about CAM because the interest of parents is high and most of them gain their
17
information about CAM from (not always very reliable) web sites on the internet.
4.2.
Predictors of CAM use
The only independent variable to predict CAM use was the occurrence of adverse drug events (ADE) in the past. All other variables tested were not significant in the multivariate analysis. In the comparison of CAM users and non-users, however, we found differences in school graduation of the mother, parents‘ knowledge of epilepsy (self-estimation), use of CAM by parents themselves, number of epileptic seizures in the past 12 months, and lack of efficacy of conventional medical therapy from the parents‘ point of view. Especially if parents used CAM themselves, the chance that the children received CAM was 5.4 times higher than if parents did not use CAM themselves. The information on predictors for CAM use may help the treating physician to identify parents who are likely to use CAM for their children's epilepsy and to address the topic in the conversation with the parents. Physicians should be especially encouraged to ask actively for ADE of anticonvulsants as judged by parents and to discuss strategies to minimise these ADE. Otherwise parents could tend to use CAM instead of administering the medication as prescribed by their physician.
4.3.
Differences in CAM use compared to other studies
The CAM methods most commonly reported in our study were homeopathy and osteopathy. This pattern has also been observed in other studies. Especially in Germany, the UK and the Netherlands, these methods are commonly used to treat children with chronic diseases.4,14,19,21e23 Compared to other studies, the rate of CAM use in our study, 13%, is quite low. Another study on CAM for epilepsy in children found rates as high as 37%.14 Several factors might contribute to this difference. By approaching parents directly by interviewing them, we reached a response rate of 99%. Studies using questionnaires sent to families by mail such as the study by Doering et al. might overestimate the rate of CAM use, as CAM users are more likely to return the questionnaire than parents not interested in CAM.14 On the other hand, we were only able to interview parents who still showed some compliance with conventional medicine, as the others were not likely to show up in the neuropediatric department. However, the number of families with a child suffering from epilepsy who completely cease to see a neuropaediatrician is probably quite low. The difference between the social structure in Western and Eastern Germany might also contribute to the lower rate of CAM use in our study. A study on use of CAM in diabetes mellitus type 1 showed that parents from Western Germany are more likely to use CAM than parents from Eastern Germany.19 A survey on the use of CAM in general indicated that CAM are more popular in Western than in Eastern Germany.20
4.4.
Motivations for CAM use
Although many parents using CAM for epilepsy therapy of their child did not report a reduced seizure frequency or any positive effects on their child's general condition, almost all
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parents wished to continue CAM use for epilepsy therapy of their children in the future. Most parents expressed the desire to try every possible treatment option. A possible explanation for this discrepancy might be the parents' need to actively do something supportive in a situation in which they feel helpless. This indicates the parents' need of further support in this stressful situation.24,25
4.5.
Sources of information in CAM use
Most parents reported the internet as the main source of information on CAM. During the last decade, the internet has become an important source of information and a tool to answer patients' and their relatives' medical questions. The internet might be a reliable source of information on the aetiopathogenesis of diseases, but information regarding treatment is often controversial and can have a major commercial angle.26e29 Thus, patients should be given the opportunity to critically discuss web based information with their physician. They should be encouraged to make the use of CAM known to their treating physician. This is especially important due to possible interactions between CAM and conventional therapy. Parents should also be deterred from spending unreasonable amounts of money on CAM.
4.6.
Expectations of non-users of CAM
More than two thirds of all non-users wish to discuss the opportunities of CAM. This fact shows that most parents search for additional options to help their children in the critical situation of a disease such as epilepsy. It might also reflect the desire for more communication with the treating physician in general.
5.
Limitations
Our study has some limitations. The CAM methods used are very heterogeneous. For most methods there is a lack of scientific evidence. For the group of natural remedies which includes substances such as cannabis scientific effects are proven or discussed.30 As we performed the interviews with parents showing up in the neuropaediatric department, parents who completely deny conventional medicine might not be reached. We believe, however, that this is a negligible fraction of patients as even children whose parents deny any anticonvulsive treatment are often hospitalised in case of acute seizures. In total, we enrolled a high number of participants indicating highly representative results. The absolute number of participants using CAM, however, was low. Even if the results are representative it might be difficult to draw conclusions for different CAM forms in this limited number of CAM users. We conducted our study in a large urban city in Eastern Germany. Due to different social structures, rates of CAM use can differ in other parts of Germany and Europe. As we performed our study in a university hospital with a certified epilepsy out-patient clinic, patients with difficult-to-treat epilepsies are overrepresented in our cohort. This might influence results of the study. Rates of CAM users might differ in
other institutions as general hospitals on the one hand and epilepsy centres only treating epilepsy patients on the other hand. Besides, rates of users might differ for other chronic diseases. This limits the conclusions that can be drawn from our results.
6.
Conclusion
The main reason for CAM use was the former occurrence of ADE in anticonvulsive therapy as judged by the parents. This indicates a severe problem of adherence to the prescribed therapy. More than half of the parents saw a positive outcome for their children by using CAM. An ever higher fraction of 95% intended to continue CAM e among them a high fraction that described no positive outcome of CAM.
Conflict of interest None.
Acknowledgements We would like to thank Lena Schrader for language editing of the manuscript and Dr. Benjamin R. Auer for his statistical advice.
references
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Official Journal of the European Paediatric Neurology Society
Original article
Use of complementary and alternative medicine (CAM) by parents in their children and adolescents with epilepsy e Prevelance, predictors and parents' assessment Nicole Hartmann a, Martina P. Neininger b, Matthias K. Bernhard a, Steffen Syrbe a, Petra Nickel a, Andreas Merkenschlager a, Wieland Kiess a, Thilo Bertsche b, Astrid Bertsche a,* a
University Hospital for Children and Adolescents, Centre for Paediatric Research, Liebigstr. 20a, 04103 Leipzig, Germany b Dept. of Clinical Pharmacy, Institute of Pharmacy, Drug Safety Center, Leipzig University, Eilenburger Str. 15a, 04317 Leipzig, Germany
article info
abstract
Article history:
Background: The use of complementary and alternative medicine (CAM) is popular. Parents
Received 10 September 2015
of children suffering from epilepsy may also consider administering CAM to their children.
Received in revised form
Systematic data about frequency of and motivations for CAM use, however, are scarce.
22 October 2015
Methods: In a university hospital's neuropaediatric department parents of patients aged
Accepted 1 November 2015
0e18 years suffering from epilepsy were consecutively invited to take part in a structured interview during 4 months in 2014.
Keywords:
Results: Of the invited parents, 164/165 (99%) agreed to participate. From those, 21/164 (13%)
Complementary and alternative
stated that they used CAM in their child. The highest independent predictive value of CAM
medicine (CAM)
use was the occurrence of adverse drug events (ADE) of anticonvulsants as judged by
Homeopathy
parents. Patients affected by ADE had a 5.6 higher chance of receiving CAM compared to
Osteopathy
patients without ADE. Most commonly used were homeopathy (14/21, 67%) and osteopathy
Children
(12/21, 57%). The internet was the most frequently used source of information (14/21, 67%).
Epilepsy
Of the parents, 10/21 (48%) described positive effects of CAM on seizure frequency, 12/21 (57%) on general condition of their child, and 20/21 (95%) wished to continue CAM for epilepsy therapy. From the non-users of CAM, 91/143 (66%) expressed the desire to learn more about CAM for epilepsy therapy. Limitations: Our study was performed in a university hospital in a large urban city in Eastern Germany. CAM user rates can differ in other parts of Germany and Europe, in other institutions and for chronic diseases other than epilepsy.
Abbreviations: CAM, complementary and alternative medicine; ADE, adverse drug events. * Corresponding author. University Hospital for Children and Adolescents, Centre of Social Paediatrics (SPZ), Centre for Paediatric Research, Liebigstr. 20a, 04103 Leipzig, Germany. Tel.: þ49 3 41 97 2 62 42; fax: þ49 3 41 97 2 60 09. E-mail address: [email protected] (A. Bertsche). http://dx.doi.org/10.1016/j.ejpn.2015.11.003 1090-3798/© 2015 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.
12
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Conclusion: The main reason for CAM use was the occurrence of ADE of anticonvulsants. More than half of the parents saw a benefit of CAM for their children. Almost all parents wished to continue CAM use, even those who did not see concrete positive effects. © 2015 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.
1.
Introduction
Cerebral seizures are common in children and adolescents. In Europe, the estimated number of children and adolescents suffering from epilepsy is 900,000 and worldwide about 10.5 million.1,2 Although more than 20 anticonvulsants are licensed for long-term treatment of epilepsy, a third of patients does not become seizure free.3e5 In this situation, parents also search for other options to support their children and may consider the use of complementary and alternative medicine (CAM).6,7 CAM includes practices such as homeopathy, osteopathy, acupuncture, EEG biofeedback, naturopathic treatment, yoga, kinesiology, vitamins and herbal remedies.8e10 The use of CAM for chronic diseases is becoming more common, but there is still a lack of population-based descriptions of its pattern and frequency of use, especially for children suffering from epilepsy.11e13 Worldwide, only few data on the use of CAM in children suffering from epilepsy exist.14e18 To our knowledge, only one study was conducted in Germany so far. 37% of parents of 6e12-year-old patients of a Western German university hospital who received a questionnaire by mail stated they used CAM for the epilepsy of their children. The study revealed a significant level of financial and time resources spent on CAM. Among the predictors for CAM use were duration of illness, use of CAM by parents themselves, and the parents' desire for their children to receive a holistic and natural treatment.17 The aim of our study was to analyse incidence of and motivation for CAM use in paediatric epilepsy patients, aged 0e18 years, of an Eastern German university hospital by consecutively interviewing their parents. We also aimed at gaining knowledge of motivations of parents who did not use CAM for the epilepsy therapy of their children.
2.
Patients and methods
2.1.
Patients and setting
hospitalised at the university hospital. Parents with insufficient German language skills and parents who were not legal guardians of their child were not included in the study. Informed consent was gained from all participating parents.
2.2.
The structured interview was developed by an expert panel including neuropaediatricians, psychologists and clinical pharmacists. By providing structured questions, we aimed to ensure that the interviewing process was consistent for all participating parents. The following aspects were included: 1. Questions about complementary and alternative medicine use (pattern and frequency of CAM use, information sources, motivations for using CAM, expectations in CAM, influence on conventional therapy, monthly costs and time spent on CAM, benefits, success and undesired side effects of CAM). 2. Demographics of the parents and the child. 3. Previous therapy with anticonvulsive drugs and adverse drug events (ADE) of anticonvulsants as judged by parents. Parents were asked if their child experienced ADE of anticonvulsants. They were asked for kind and frequency of occurrence of ADE and if the quality of life of the child was decreased due to ADE. 4. Furthermore, non-CAM users were asked for reasons for not using such therapies and whether they had a desire for advice on CAM. At the beginning of the interview, a list of the most common CAM therapies was shown to all participating parents (“naturopathic treatment”, “enzyme therapy”, “homeopathy”, “Schuessler tissue salts”, “vitamins”, “Bach flower remedies”, “herbal medicine”, “kinesiology”, “osteopathy”, “acupuncture”, “EEG biofeedback”, “magnetopathy”, “chiropractic”, and “yoga”). We used the terminology as used by the therapy providers without any scientific confirmation of the accuracy of the terms.
2.3. After obtaining the approval of the local Ethics Committee, this prospective observational study was performed at the neuropaediatric department of a university hospital located in the eastern part of Germany for the duration of 4 months in 2014. We performed a structured interview by using a questionnaire consisting of predefined questions. We consecutively included all patients aged from 0 to 18 years with the diagnosis “epilepsy” by ICD-10-GM that had an outpatient appointment at the neuropaediatric department or were
Structured interview based on a questionnaire
Statistics
Calculations were performed using SPSS (Statistical Package for the Social Science, Version 20, IBM, USA). Frequencies are reported as numbers and percentages, continuous data as median with first (25%) and third (75%) quartile (Q25/Q75) and minimum/maximum as appropriate. For comparison of CAM users and non-users we applied Chi-square tests, Fisher's Exact tests or Mann-Whitney-U tests depending on the underlying data. In addition to these standard tests, we
13
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Table 1 e Characteristics of parents and patients; n.s.: not significant with p > 0.05. Variables Age of surveyed parent Median Minimum Maximum Q25 Q75 Sex of surveyed parent (%) Male Female School graduation of the mother (%) No school graduation Special school “Hauptschule” (a school that prepares students mainly for vocational blue-collar careers) “Mittelschule” (a school that prepares students mainly for vocational white-collar careers) “Abitur/Fachhochschulreife” (i.e. the diploma necessary for entry into higher education) No statement School graduation of the father (%) No school graduation Special school “Hauptschule” (a school that prepares students mainly for vocational blue-collar careers) “Mittelschule” (a school that prepares students mainly for vocational white-collar careers) “Abitur/Fachhochschulreife” (i.e. the diploma necessary for entry into higher education) No statement Nationality (%) German Other Family income (%) <500V 500Ve < 1000V 1000Ve < 1500V 1500Ve < 2000V 2000Ve < 2500V 2500Ve < 3000V 3000Ve < 3500V 3500V and more No statement Religious affiliation (%) Yes No Parents' knowledge of epilepsy (self-estimation, %) Very good Good Satisfactory Fair Insufficient Burden of the disease as perceived/by parents (%) Very strong Strong Medium Little Not at all Use of CAM by parents themselves (%) Yes No Child's age (years) Median Minimum
CAM non-users (n ¼ 143)
CAM users (n ¼ 21)
p-value
38 20 57 32 43
39 28 47 35 43
n.s. (p ¼ 0.549)
31 (22) 112 (78)
4 (19) 17 (81)
n.s. (p ¼ 0.521)
12 (8) 1 (1) 40 (28)
0 (0) 0 (0) 4 (19)
48 (34)
4 (19)
38 (27)
13 (62)
4 (3)
0 (0)
12 (8) 1 (1) 45 (31)
0 (0) 0 (0) 6 (29)
32 (22)
5 (24)
38 (27)
8 (38)
15 (1)
2 (10)
n.s. (p ¼ 0.148)
137 (96) 6 (4)
21 (100) 0 (0)
n.s. (p ¼ 1.000)
6 (4) 17 (12) 19 (13) 13 (9) 20 (14) 19 (13) 16 (11) 25 (17) 8 (6)
0 0 2 4 3 1 5 6 0
(0) (0) (10) (19) (14) (5) (24) (29) (0)
n.s. (p ¼ 0.055)
37 (26) 106 (74)
9 (43) 12 (57)
n.s. (p ¼ 0.122)
11 61 44 16 11
(8) (43) (31) (11) (8)
3 (14) 13 (62) 5 (24) 0 (0) 0 (0)
p ¼ 0.013
17 28 43 34 21
(12) (20) (30) (24) (15)
3 5 8 3 2
n.s. (p ¼ 0.311)
(14) (24) (38) (14) (10)
45 (31) 98 (69)
15 (71) 6 (29)
8 1
9 1
p ¼ 0.004
p ¼ 0.001
(continued on next page)
14
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Table 1 e (continued ) Variables
CAM non-users (n ¼ 143)
Maximum Q25 Q75 Child's sex (%) Male Female
performed two types of binary logistic regressions in order to analyse potential predictors of CAM use. Firstly, we conducted a univariate regression of CAM use on each potential predictor variable. This procedure simultaneously served as a robustness check for the results of our standard tests. Secondly, we regressed CAM use on all significant predictors identified in the univariate setting. That is, we used a multivariate setting to control for the fact that a given predictor might simply be a proxy for another. This allowed us to identify key predictors in the predictor set. As a general rule, variables with a p-value 0.05 in the univariate regressions were included in the multivariate analysis. For each binary regression, we report
CAM users (n ¼ 21)
p-value
17 5 12
16 5 11
n.s. (p ¼ 0.661)
75 (52) 68 (48)
12 (57) 9 (43)
n.s. (p ¼ 0.816)
the odds ratio (OR), 95% confidence interval, and the p-value. Again, a p-value 0.05 was considered to indicate significance.
3.
Results
3.1.
Characteristics of patients and their parents
During the study period, 165 parents were invited to participate in the survey. A total of 164/165 (99%) agreed to take part in the interview. CAM use for the epilepsy treatment of their
Table 2 e Epilepsy and conventional therapy of patients; n.s.: not significant with p > 0.05. Variables
CAM non-users (n ¼ 143)
CAM users (n ¼ 21)
Duration of epilepsy (years) Median 3.32 2.9 Minimum 0.03 0.3 Maximum 17.15 10.40 Q25 1.88 1.93 Q75 7.09 5.40 Anticonvulsant medication (%) No medication 17 (12) 2 (10) 1 anticonvulsive drug 64 (45) 7 (33) 2 anticonvulsive drugs 41 (29) 6 (29) 3 anticonvulsive drugs 15 (10) 6 (29) 4 anticonvulsive drugs 6 (4) 0 (0) Number of epileptic seizures during the past 12 months (or since diagnosis of epilepsy if duration of epilepsy < 1 year; %) None 59 (41) 3 (14) 1e2 26 (18) 3 (14) 3e4 12 (8) 3 (14) 5e6 5 (3) 0 (0) more than 6 41 (29) 12 (57) Lack of efficacy of conventional medical therapy from the parents' point of view (%) Distinct deterioration of epilepsy 2 (1) 1 (5) Deterioration of epilepsy 14 (10) 4 (19) No change of epilepsy 3 (2) 1 (5) Amelioration of epilepsy 45 (31) 10 (48) Distinct amelioration of epilepsy 60 (42) 2 (10) No statement/no medication 19 (13) 3 (14) Seizure freedom with medication (%) Yes 66 (46) 7 (33) No 60 (42) 12 (57) No statement/no medication 17 (12) 2 (10) Seizure reduction with medication (%) Yes 112 (78) 15 (71) No 14 (10) 4 (19) No statement/no medication 17 (12) 2 (10) Adverse drug events as judged by parents (%) Yes 63 (44) 17 (81) No 59 (41) 2 (10) No statement/no medication 21 (15) 2 (10)
p-value
n.s. (p ¼ 0.532)
n.s. (p ¼ 0.203)
p ¼ 0.005
p ¼ 0.002
n.s. (p ¼ 0.212)
n.s. (p ¼ 0.229)
p ¼ 0.007
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Table 3 e Univariate analysis of predictors of CAM use. Variable
p-value OR
95% CI Lower bound Upper bound
School graduation of the father School graduation of the mother Family income Parents‘ knowledge of epilepsy (self-estimation) Use of CAM by parents themselves Burden of the disease as perceived by parents Number of epileptic seizures in the past 12 months (or since diagnosis of epilepsy if duration of epilepsy < 1 year) Lack of efficacy of conventional medical therapy from the parents’ point of view Adverse drug events as judged by parents Duration of epilepsy Age of surveyed parent
children was reported by 21/164 (13%) parents, whereas 143/ 164 (87%) claimed they had not used CAM for their children's epilepsy so far. Characteristics of patients and parents are displayed in Table 1. Table 2 summarises information on children's epilepsies and conventional therapies of the patients.
3.2.
Predictors of CAM use
In the univariate analysis we found correlations of CAM use with a higher school graduation of the mother, more parents' knowledge of epilepsy (self-estimation), use of CAM by parents themselves, a higher number of epileptic seizures in the past 12 months (or since diagnosis of epilepsy if duration of epilepsy < 1 year), lack of efficacy of conventional medical therapy from the parents‘ point of view, and occurrence of adverse drug events (ADE) of anticonvulsants as judged by parents (Table 3). In the multivariate case that controls for potential interaction between the predictors, only the occurrence of adverse drug events (ADE) of anticonvulsants as judged by parents remains a significant predictor of CAM use. Patients who were affected by ADE in the past had a 5.633 higher chance of receiving CAM compared to patients without ADE (Table 4).
3.3.
Included in multivariate model
0.113 0.008 0.054 0.014 0.001 0.311 0.008
1.482 2.246 1.259 2.119 5.444 1.217 1.344
0.911 1.232 0.996 1.162 1.982 0.832 1.081
2.411 4.096 1.591 3.864 14.954 1.782 1.670
No Yes No Yes Yes No Yes
0.009
1.712
1.142
2.565
Yes
0.007 0.365 0.517
7.960 0.937 1.023
1.763 0.814 0.956
35.947 1.079 1.094
Yes No No
67%) and osteopathy (12/21, 57%), for detailed information see Table 5. Parents decided to use CAM for epilepsy therapy of their children after a median time of 6 months (Q25/Q75: 0/12 months, range 0e42 months) after the diagnosis. Sources of information used by parents (multiple answers possible) were the internet (14/21, 67%), family and friends (13/21, 62%), treating physicians (9/21, 43%), non-medical practitioner (German “Heilpraktiker”, 8/21, 38%), newspapers (7/21, 33%), pharmacists (5/21, 24%), and others (6/21, 29%).
3.4.
Motivations and expectations
Asked for their motivation to use CAM for the epilepsy therapy of their children, 20/21 (95%) of parents expressed the desire to try every possible treatment option. 16/21 (76%) judged CAM as more natural and 17/21 (81%) believed CAM has less side effects than conventional medical therapies. 5/21 (24%) assumed that herbal and natural remedies are riskless. In one case, the parents stated they used CAM because they were unsatisfied with the conventional care. All parents (21/21, 100%) expected an improvement in general condition, and 20/ 21 (95%) a reduction of seizure frequency. Other expectations were reduction of stress (18/21, 86%), a holistic and individual perception (15/21, 72%), and a reduced need for anticonvulsant medication (13/21, 62%).
Prevalence and pattern of CAM use 3.5.
Of the 21 parents who stated they used CAM for the epilepsy of their children, 15 (71%) did so at the time of the survey, 6 (29%) in the past. Most commonly used were homeopathy (14/21,
Communication to treating physician
Of all interviewed CAM users, 16/21 (76%) informed their child's treating physician about the use of CAM. These parents
Table 4 e Multivariate analysis of predictors of CAM use. Variable
School graduation of the mother Parents' knowledge of epilepsy (self-estimation) Use of CAM by parents themselves Number of epileptic seizures during the past 12 months (or since diagnosis of epilepsy if duration of epilepsy < 1 year) Lack of efficacy of conventional medical therapy from the parents' point of view Adverse drug reactions as judged by parents
p-value
OR
95% CI Lower bound
Upper bound
0.110 0.072 0.125 0.110
1.840 2.096 2.544 1.301
0.870 0.936 0.771 0.942
3.890 4.694 8.400 1.797
0.924 0.039
1.028 5.633
0.585 1.091
1.807 29.086
16
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Table 5 e Methods of CAM used for children with epilepsy as stated by their parents (multiple answers possible). Used CAM therapy (n ¼ 21)
Treated children, n (%)
Homeopathy Osteopathy Schuessler tissue salts Natural remedies Bach flower therapy Yoga Vitamins Kinesiology Chiropractic Others
14 12 6 4 4 4 4 2 2 7
(67) (57) (29) (19) (19) (19) (19) (10) (10) (33)
were asked about their physician's approach regarding their CAM use. In 2/16 (12%) children, the treating physician performs the CAM therapy himself, while in 13/16 (82%) children, he does not perform the CAM therapy himself but approves of it, according to the parents. In 1/16 (6%), the parents could not assess the doctor's attitude. 5/21 (24%) did not tell their neuropaediatrician about their CAM use. When they were asked why they decided not to provide their physician with this information (multiple answers were possible), 4/5 (80%) stated that they did not consider this information important, and in 4/5 (80%), the treating physician did not actively ask for CAM therapies of the child. 1/5 (20%) thought that the treating physician would not endorse CAM therapies.
3.6.
Effectiveness of CAM
Freedom from seizures during CAM use was reported in 4/21 (19%) children, and in 6/21 (29%), the seizure frequency was reported to have been reduced. Of all CAM-using parents, 9/21 (43%) stated they did not observe any effects of CAM. An increase of seizures during the use of CAM was reported in 1/21 (5%) case. 1/21 (5%) could not assess the effectiveness of CAM. Furthermore, parents were requested to estimate other changes during the use of alternative therapies. The answers to these questions are displayed in Table 6. Of all CAM-using parents, 2/21 (10%) judged the total success of CAM as “excellent” and 13/21 (62%) as “rather good”. In 6/21 (29%) of patients, the therapies were judged as not having any effect. No parent, however, described a deterioration of the disease.
Table 6 e Changes observed by parents during CAM treatment of their children suffering from epilepsy (n ¼ 21). Improved Unvaried Aggravated I don't know Seizure frequency General health/ quality of life Coping with epilepsy Coping with everyday life Emotional stability
8 (38%) 12 (57%)
12 (57%) 6 (29%)
0 (0%) 0 (0%)
1 (5%) 3 (14%)
9 (43%)
10 (48%)
0 (0%)
2 (10%)
9 (43%)
10 (48%)
0 (0%)
2 (10%)
7 (33%)
11 (52%)
0 (0%)
3 (14%)
3.7.
Conventional anticonvulsive medication and CAM
Asked to compare the effect of CAM and conventional anticonvulsive medication, 1/21 (5%) of parents judged CAM as superior, 5/21 (24%) as equally effective, whereas 7/21 (33%) estimated the effect of CAM as inferior. 8/21 (38%) did not feel able to compare therapies. Of the 21 parents using CAM in their children 17 (81%) reported ADE of anticonvulsants (see Table 2). The ADE reported were (multiple answers possible) concentration deficit/fatigue: 14, behavioural problems/aggressiveness: 6, delay in speech development: 2, enuresis: 1, diplopic images: 1, liver impairment: 1, dry skin: 1, coryza: 1, cold limbs: 1, weakening of immune system: 1. The frequency of ADE was described as permanent by 11/17 (65%) parents, frequent by 5/17 (29%) parents and seldom by 1/17 (6%) parent. Asked if quality of life was decreased by ADE of anticonvulsants, 11/17 (65%) stated quality of life was severely decreased, 6/17 (35%) said it was mildly decreased. No parent stated there was no decrease of quality of life due to ADE. The conventional anticonvulsant therapy was not altered by parents themselves in 18/21 (86%) patients. 2/21 (10%) of parents partially reduced the anticonvulsant medication and 1/21 (5%) child had no long-term medication. According to the patient charts the dose of anticonvulsant medication was reduced due to ADE in 7/17 patients (41%), in 8/17 patients (47%) medication was changed, in 2/17 (12%) medication was continued without any change. 9/21 (43%) parents assumed that there could be interactions between CAM and conventional anticonvulsive medication. 6/21 (29%) were able to provide concise information on the assumed effect of interactions, e.g. increase of seizure frequency.
3.8.
Monthly and total expenditures
11/21 (52%) parents stated they did not pay more than 50V per month. 5/21 (24%) paid 50e100V for CAM per month, 4/21 (19%) 100e150V and in 1/21 (5%) of cases, parents paid more than 200V per month. 3/21 (14%) stated they did not pay more than 100V in total for CAM therapies. 9/21 (43%) estimated the total costs for epilepsy treatment with CAM at 100e500V, 6/21 (29%) at 500e1000V, 1/21 (5%) at 1000e3000V, and in 2/21 (10%), costs were higher than 5000V. The total amount of costs for CAM was not covered by health insurances in any of the patients. 7/21 (33%) received some benefits from their health insurances for osteopathy, 2/21 (10%) for homeopathy. 18/21 (86%) of parents stated they were willing to pay more for CAM therapies if their child became seizure free. 1/21 (5%) thought that the treatment was too expensive, 2/21 (10%) were indifferent regarding therapy costs.
3.9.
CAM use in the future
Of the parents using CAM for the epilepsy of their children, 20/ 21 (95%) expressed a desire to continue CAM use in the future, and 16/21 (76%) would advise other parents of children suffering from epilepsy to ask for CAM.
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3.10.
Reasons for not using CAM
The trust in conventional medicine (108/143, 76%) and the lack of knowledge of CAM (94/143, 66%) were the reasons most commonly mentioned for not using such therapies. Of the parents not using CAM, 13/143 (9%) rated the providers of alternative therapies as unreliable, and 7/143 (5%) judged CAM as useless. Altogether, 91/143 (67%) of parents not using CAM for epilepsy treatment of their children wished to get more information about CAM.
3.11.
CAM use for other diseases
33/143 (23%) of all non-users and 3/21 (14%) of all CAM users for epilepsy therapy of their children applied CAM to fight other diseases such as a fever or the common cold.
4.
Discussion
4.1.
General considerations
We performed a prospective study on CAM use in routine care of children with epilepsy by performing a structured interview with their parents. We aimed at gaining information on prevalence of, predictors for and parents' assessment of CAM use. In this study, approximately 13% of all interviewed parents used at least one of the predefined CAM therapies for epilepsy treatment of their child. This indicates a frequent use of CAM in this population, especially as in the eastern part of Germany, CAM use is not as popular as in other parts.19,20 About half of the parents reported positive effects of CAM on seizure frequency and on their child's general condition. Surprisingly, even a high fraction of the other half of parents not reporting such a positive outcome intended to continue CAM. Even those parents who had not administered CAM to their children yet wished to be better informed about CAM, indicating the popularity of these therapies. Interestingly, not the lack of efficacy of conventional therapy was the main reason to use CAM, but the occurrence of ADE in the current or former anticonvulsive therapy as judged by parents (not necessarily confirmed by the treating physician). The majority of parents using CAM reported ADE and in most cases the occurrence was described as permanent or frequent. This indicates that the occurrence of ADE as judged by parents should be addressed in greater extent in routine practice. Otherwise, parents might quit the prescribed medication to begin a CAM treatment without their neuropaediatricians' knowledge. Many parents started CAM very early in epilepsy treatment. Other reasons than ADE such as personal convictions might contribute to this decision as well. Parents who have a positive attitude towards CAM might be more critical concerning ADE and more easily refer symptoms as fatigue as ADE of medication. In most cases medication was reduced or changed by the neuropaediatrician if ADE were reported by parents. Nevertheless, parents decided to continue CAM use. This also indicates that certain subgroups of parents are very likely to use CAM in their children. Health care professionals should provide more information about CAM because the interest of parents is high and most of them gain their
17
information about CAM from (not always very reliable) web sites on the internet.
4.2.
Predictors of CAM use
The only independent variable to predict CAM use was the occurrence of adverse drug events (ADE) in the past. All other variables tested were not significant in the multivariate analysis. In the comparison of CAM users and non-users, however, we found differences in school graduation of the mother, parents‘ knowledge of epilepsy (self-estimation), use of CAM by parents themselves, number of epileptic seizures in the past 12 months, and lack of efficacy of conventional medical therapy from the parents‘ point of view. Especially if parents used CAM themselves, the chance that the children received CAM was 5.4 times higher than if parents did not use CAM themselves. The information on predictors for CAM use may help the treating physician to identify parents who are likely to use CAM for their children's epilepsy and to address the topic in the conversation with the parents. Physicians should be especially encouraged to ask actively for ADE of anticonvulsants as judged by parents and to discuss strategies to minimise these ADE. Otherwise parents could tend to use CAM instead of administering the medication as prescribed by their physician.
4.3.
Differences in CAM use compared to other studies
The CAM methods most commonly reported in our study were homeopathy and osteopathy. This pattern has also been observed in other studies. Especially in Germany, the UK and the Netherlands, these methods are commonly used to treat children with chronic diseases.4,14,19,21e23 Compared to other studies, the rate of CAM use in our study, 13%, is quite low. Another study on CAM for epilepsy in children found rates as high as 37%.14 Several factors might contribute to this difference. By approaching parents directly by interviewing them, we reached a response rate of 99%. Studies using questionnaires sent to families by mail such as the study by Doering et al. might overestimate the rate of CAM use, as CAM users are more likely to return the questionnaire than parents not interested in CAM.14 On the other hand, we were only able to interview parents who still showed some compliance with conventional medicine, as the others were not likely to show up in the neuropediatric department. However, the number of families with a child suffering from epilepsy who completely cease to see a neuropaediatrician is probably quite low. The difference between the social structure in Western and Eastern Germany might also contribute to the lower rate of CAM use in our study. A study on use of CAM in diabetes mellitus type 1 showed that parents from Western Germany are more likely to use CAM than parents from Eastern Germany.19 A survey on the use of CAM in general indicated that CAM are more popular in Western than in Eastern Germany.20
4.4.
Motivations for CAM use
Although many parents using CAM for epilepsy therapy of their child did not report a reduced seizure frequency or any positive effects on their child's general condition, almost all
18
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parents wished to continue CAM use for epilepsy therapy of their children in the future. Most parents expressed the desire to try every possible treatment option. A possible explanation for this discrepancy might be the parents' need to actively do something supportive in a situation in which they feel helpless. This indicates the parents' need of further support in this stressful situation.24,25
4.5.
Sources of information in CAM use
Most parents reported the internet as the main source of information on CAM. During the last decade, the internet has become an important source of information and a tool to answer patients' and their relatives' medical questions. The internet might be a reliable source of information on the aetiopathogenesis of diseases, but information regarding treatment is often controversial and can have a major commercial angle.26e29 Thus, patients should be given the opportunity to critically discuss web based information with their physician. They should be encouraged to make the use of CAM known to their treating physician. This is especially important due to possible interactions between CAM and conventional therapy. Parents should also be deterred from spending unreasonable amounts of money on CAM.
4.6.
Expectations of non-users of CAM
More than two thirds of all non-users wish to discuss the opportunities of CAM. This fact shows that most parents search for additional options to help their children in the critical situation of a disease such as epilepsy. It might also reflect the desire for more communication with the treating physician in general.
5.
Limitations
Our study has some limitations. The CAM methods used are very heterogeneous. For most methods there is a lack of scientific evidence. For the group of natural remedies which includes substances such as cannabis scientific effects are proven or discussed.30 As we performed the interviews with parents showing up in the neuropaediatric department, parents who completely deny conventional medicine might not be reached. We believe, however, that this is a negligible fraction of patients as even children whose parents deny any anticonvulsive treatment are often hospitalised in case of acute seizures. In total, we enrolled a high number of participants indicating highly representative results. The absolute number of participants using CAM, however, was low. Even if the results are representative it might be difficult to draw conclusions for different CAM forms in this limited number of CAM users. We conducted our study in a large urban city in Eastern Germany. Due to different social structures, rates of CAM use can differ in other parts of Germany and Europe. As we performed our study in a university hospital with a certified epilepsy out-patient clinic, patients with difficult-to-treat epilepsies are overrepresented in our cohort. This might influence results of the study. Rates of CAM users might differ in
other institutions as general hospitals on the one hand and epilepsy centres only treating epilepsy patients on the other hand. Besides, rates of users might differ for other chronic diseases. This limits the conclusions that can be drawn from our results.
6.
Conclusion
The main reason for CAM use was the former occurrence of ADE in anticonvulsive therapy as judged by the parents. This indicates a severe problem of adherence to the prescribed therapy. More than half of the parents saw a positive outcome for their children by using CAM. An ever higher fraction of 95% intended to continue CAM e among them a high fraction that described no positive outcome of CAM.
Conflict of interest None.
Acknowledgements We would like to thank Lena Schrader for language editing of the manuscript and Dr. Benjamin R. Auer for his statistical advice.
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