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Complementary and Alternative Medicine Use in Adults with Autism

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Complementary and Alternative Medicine Use in Adults with Autism Höfer et al. BMC Psychiatry (2019) 19:53 https://doi.org/10.1186/s12888-019-2043-5 RESEARCH ARTICLE Open Access Complementary and alternative medicine use in adults with autism spectrum disorder in Germany: results from a multi-center survey Juliana Höfer1*, Falk Hoffmann1, Inge Kamp-Becker2, Charlotte Küpper3, Luise Poustka4, Stefan Roepke3, Veit Roessner5, Sanna Stroth2, Nicole Wolff5 and Christian J. Bachmann6 Abstract Background: Complementary and Alternative Medicine (CAM) is widely used both in the general population and for the treatment of somatic and psychiatric disorders. Studies on CAM use among patients with autism spectrum disorder (ASD) have so far only focused on children and adolescents. The aim of this study was to investigate patterns of CAM use among adults with ASD. Methods: A questionnaire survey concerning current and lifetime use of CAM was distributed to adults with ASD between November 2015 and June 2016. Participants diagnosed by experienced clinicians using the current diagnostic gold standard were recruited from four ASD outpatient clinics in Germany. Questionnaire data was then linked to supplementary clinical data. Results: The final sample consisted of 192 adults (response: 26.8%) with a mean age of 31.5 years (80% male; diagnoses: Asperger’s syndrome (58%), childhood autism (27%), atypical autism (12%)). 45% of the respondents stated that they were currently using or had used at least one CAM modality in their life. Among the participants with lifetime CAM use, almost half had used two or more different types of CAM. Alternative medical systems (e.g. homeopathy, acupuncture) were most frequently used, followed by mind-body interventions (e.g. yoga, biofeedback, animal assisted therapy). Overall, 20% of respondents stated that they would like to try at least one listed CAM modality in the future. Conclusions: This is the first study on CAM use in adults with ASD, demonstrating considerable CAM use in this population. Given the popularity of CAM, patients should be informed about the effectiveness and potentially dangerous side effects of CAM treatments, as evidence for the majority of CAM methods in ASD is still limited. Keywords: Autism spectrum disorder, Autism, Complementary and alternative medicine, CAM, Prevalence, Adults, Germany Introduction whereas alternative medicine is used in place of conven- The term “Complementary and Alternative Medicine tional medicine [2]. (CAM)” denotes a heterogeneous group of diverse med- The utilisation of CAM is widespread, both in healthy ical and health care practices that are not considered to be individuals and those with somatic or psychiatric disor- part of conventional health care systems [1]. Complemen- ders. In a systematic review of 49 studies from 15 coun- tary medicine is typically defined as nontraditional prac- tries, the prevalence of CAM use in the general tices that are used together with conventional medicine, population ranged from 10 to 76% [3], with the large vari- ance being due to geographical, economic, social, cultural * Correspondence: [email protected] and methodological factors. However, several studies have 1Department of Health Services Research, Carl von Ossietzky University demonstrated that typical CAM users are likely to be fe- Oldenburg, Ammerländer Heerstraße 140, 26129 Oldenburg, Germany male, better educated and to have a higher income [4–9]. Full list of author information is available at the end of the article © The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Höfer et al. BMC Psychiatry (2019) 19:53 Page 2 of 8 CAM therapies are also used for the treatment of many Recruitment and participants physical as well as mental disorders, and especially those Data for this study was collected in four academic ASD of a more chronic nature, e.g. cancer, asthma, depression outpatient clinics in Germany (Berlin, Dresden, Mann- or autism spectrum disorders (ASD) [10]. Compared to heim, and Marburg). Between November 2015 and June the general population, the utilization of CAM is higher 2016, these study centers recruited adults with an ASD amongst individuals with these disorders [4, 5, 7, 11–14]. diagnosis, who received services from or had been diag- ASD is a neurodevelopmental disorder which is charac- nosed at one of these outpatient clinics. Patients were in- terized by pervasive difficulties in interaction and commu- cluded if they were 18 years or older, and had a confirmed nication that are accompanied by unusually restricted, diagnosis of ASD according to ICD-10 (F84.0, F84.1, repetitive behavior and interests since early childhood [15, F84.5, F84.8, F84.9). Regarding the classification of ASD 16]. It is a high-cost and lifelong condition that affects up diagnoses in this study, it should be noted that, unlike the to 1% of adults [17]. For children, the prevalence was 16.8 DSM-5, the ICD-10 has not incorporated the concept of per 1000 children in 2014 [18], with prevalences steadily autism as a “spectrum disorder”, and therefore offers dif- increasing in recent decades [19–21]. To date, no causal ferent diagnostic categories for patients with autism (e.g. treatment for ASD is known, but there exist various med- “atypical autism” (F84.1), which is equivalent to ical, behavioral and educational interventions that aim to PDD-NOS in DSM-IV (299.80)). All participants were di- mitigate the core deficits related to the disorder, and to agnosed by experienced clinicians using the current diag- improve psychiatric comorbidity [16]. Comorbid symp- nostic gold standard in ASD, the Autism Diagnostic toms of ASD such as hyperactivity, anxiety, aggression, or Observation Schedule (ADOS) and – if parents were avail- insomnia, are frequently treated with both conventional able – the Autism Diagnostic Interview-Revised (ADI-R) therapies, including psychopharmacological agents, and [21, 30, 31]. CAM therapies [10, 22]. While there is limited evidence for the effectiveness of Questionnaire and data collection some types of CAM for the treatment of ASD core Based on the Client Service Receipt Inventory (CSRI) symptoms and associated comorbidities [23, 24], most [32], a self-administered questionnaire on sociodemo- CAM treatments have not yet been adequately studied graphic data (including educational level), and health for this indication [25]. and social service use, including CAM, was developed Although many CAM modalities are noninvasive and and has been mailed to the participants. In exceptional free from side effects (e.g. yoga or music therapy), there cases, the questionnaire was handed over personally. are some types of CAM, such as chelating agents or Each questionnaire was accompanied by a cover letter, a megavitamin therapy, for which safety concerns exist participant information sheet and a written informed due to potentially dangerous side effects. Furthermore, consent form, in which participants could consent to knowledge on pharmacological interaction effects be- data linkage between their questionnaire data and their tween CAM therapies and psychotropic drugs is scarce clinical data (e.g. age, sex, ICD 10-diagnosis, IQ). [26–29], and some treatments (e.g. special diets) might The questionnaire item on CAM use was configured be associated with potentially harmful, long-term side ef- as follows: Following the classification of the National fects, such as nutritional deficits [25]. Center for Complementary and Integrative Health Despite the limited evidence for CAM use in ASD, a re- (NCCIH), we listed five CAM categories: [1] Alternative cent systematic review yielded relatively high prevalences medical systems or complete systems of therapy and of CAM use in children and adolescents with ASD, ran- practice (e.g. acupuncture), [2] mind-body interventions ging from 28 to 95% (median: 54%), with special diets or (e.g. yoga), [3] biologically based therapies (e.g. diets), [4] dietary supplements (including vitamins) being the most manipulative and body based methods (e.g. craniosacral frequent CAM treatments [10]. However, none of the sur- therapy), and [5] other CAM practices (e.g. quigong) veys covered by the afore-mentioned review was con- [33]. For each of the five categories (a non-exhaustive ducted in adults with ASD. Therefore, the aim of the list of examples was provided), participants could mark present study was to investigate prevalence and type of one of the following response options: “Yes, I use this CAM use among adults with a diagnosis of ASD. CAM category currently”, “Yes, I used in the past”, “I would like to try it”,or“No”. Methods Participants’ level of education was defined in accord- This study was conducted as a part of a large clinical and ance with the International Standard Classification of research network, the ASD-Net, which is funded by the Education (ISCED) [34, 35], and classified into three German federal ministry of education and research groups: low (ISCED level 0–2B), medium (level 2A) and (BMBF), and which focuses on the key challenges in ASD high education (level 3A). Referring to the German diagnostics, therapy and health service research [21]. school system, low educational level complies with 9 Höfer et al. BMC Psychiatry (2019) 19:53 Page 3 of 8 years of schooling or leaving school without having ac- Table 1 Baseline characteristics quired any school-leaving qualification. Medium educa- Characteristics (number of respondentsa)n % tional level is equivalent to 10 years of schooling, and Sex (n = 192) high educational level complies with 12 or 13 years of Male 153 79.7 schooling and a school-leaving qualification, which Female 39 20.3 opens access to higher education institutions [36, 37].
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