Highlights
- •Caregivers’ interest in cannabidiol is high, even in pharmacoresponsive epilepsies, often resulting in self-initiated therapy.
- •Caregivers have high expectations in efficacy and tolerance, which were not met during therapy in a large proportion.
- •Self-reported level of information is poor, especially regarding potential interactions with concomitant medication.
Abstract
Background
Cannabidiol (CBD) has gained popularity among parents of children with epilepsy, even
before evidence of efficacy and safety was available. The aim of our survey was to
gain information about parental attitude to CBD, as well as expectations and knowledge
of CBD for treatment of their child's epilepsy.
Methods
A survey using an open-access online questionnaire for parents or caregivers of children
with epilepsy within German-speaking countries from March to June 2019 was used.
Results
Of 378 complete questionnaires (mean age of children: 11.1 (standard deviation [SD]
7.4) years), 28% (n = 106) reported previous or current CBD treatment over a mean
time of 17.31 months (SD: 19.74), whereas 72% had no personal experience with CBD.
Treatment was proposed by parents and not by physicians in 83% of cases and was mainly
carried out with prescription-only products (71%, n = 67). Nevertheless, 29% used
unregulated, artisanal products. Of all parents with previous experience, n = 77 (73%)
reported that they expected CBD to be more efficient than the common antiseizure drugs
(ASDs) at the beginning. Forty-five percent reported that their expectations were
not met during therapy. Consistently, lack of seizure reduction was the most common
reason to discontinue CBD (12/26). Of those responders without CBD experience, 93%
would consider CBD for their child. However, the self-reported level of information
was considered to be poor or very poor regarding efficacy (76%, n = 177), tolerance
(83%, n = 191), interaction with other medication (91%, n = 211), and potential long-term
effects (87%, n = 212).
Conclusions
There is a huge interest in CBD but includes potentially unrealistic expectations
of its efficacy and tolerance combined with a low level of information. Neuropediatricians
should address parents of children with epilepsy regarding potential motivation and
expectations of CBD. In addition, parental education, especially on interactions and
potential side effects, is strongly recommended.
Abbreviations:
ASD (antiseizure drug), CBD (cannabidiol), SD (standard deviation), THC (tetrahydrocannabinol)Keywords
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Article info
Publication history
Published online: July 06, 2020
Accepted:
June 12,
2020
Received in revised form:
June 12,
2020
Received:
May 27,
2020
Identification
Copyright
© 2020 Elsevier Inc. All rights reserved.
