How do pediatric patients perceive adverse drug events of anticonvulsant drugs? A survey

Abstract

Anticonvulsant drugs have a high risk of adverse drug events. Little is known about the perception of those events by pediatric patients. We performed a survey in the neuropediatric departments of two university hospitals. Using a questionnaire, we interviewed patients aged 6-18 years with current anticonvulsant treatment regarding (i) their fears about potential adverse drug events, (ii) experienced adverse drug events, and (iii) perceived burden of experienced adverse drug events. One hundred patients took part in the interview. (i) 40 (40%) expressed fears that the medication could harm them. Eighteen of 40 (45%) named fears concerning specific adverse drug events. Of those, 12/18 (67%) feared neurologic or psychiatric symptoms. (ii) 37 (37%) of children described altogether 60 experienced adverse drug events. Of those, 38 (63%) concerned neurologic or psychiatric symptoms. (iii) 32/37 (82%) children who experienced adverse drug events felt bothered by the experienced event. Among others, they described an emotional burden (11/37, 30%), and restrictions in school performance (8/37, 22%) and favorite leisure activities (4/37, 11%). Conclusion: School-aged children are well able to describe adverse drug events of their anticonvulsant medication. Almost two thirds of the described events concern neurologic or psychiatric symptoms that cause an emotional burden and restrictions according to the patients. What is Known: • Anticonvulsants have a high potential of adverse drug events. • In an earlier survey, parents expressed fears of severe adverse drug events such as liver failure, which seldom occur, and reported a high number of neurological and psychological adverse drug events. What is New: • Many children fear that their anticonvulsants could harm them, and they fear and experience neurological and psychological adverse drug events. • According to the children, adverse drug events cause an emotional burden and restrictions in school performance and favorite leisure activities.

Drug-Handling Problems and Expectations of the Ideal Pediatric Drug — Reported by Children and Their Parents

“…Preferences of children and parents concerning drug formulations differed in around half of the reports. Our ndings are in line with earlier studies that have shown that children are indeed well able to express experiences and expectations concerning their drug therapy [10,22]. Nevertheless, physicians tend to talk to the parents when they aim at exploring the children's needs.…”

Physicians’ perspectives on adverse drug reactions in pediatric routine care: a survey

“…With regard to ADRs, it is important before treatment initiation to consider which ADRs may occur and to choose the anti-seizure medication that best meets the needs of the patients. For example, psychiatric and neurologic ADRs were judged by pediatric patients and their parents to negatively affect peer interaction and school/leisure activities [ 9 , 10 ]. Paying more attention to these patient-specific perceptions when selecting drug therapy might help to prevent discontinuation of drug therapy or change of active ingredients.…”

“…The questionnaire was based on researches on patients’ perceptions on adverse drug reactions [ 9 , 10 ]. In this research, some points remained open that can only be answered by considering the physician’s perspective.…”

“…Thus, it is important that physicians take the parents' and patients' concerns seriously and provide advice to alleviate those concerns, offer support and give further explanations, e.g., on the importance of regular drug intake [9,10,26]. In addition, children and adolescents with chronic conditions desire to be actively involved in physicians' counseling [9,26,27]. Those measures also could contribute to increase patients' adherence [28][29][30].…”

“…This discrepancy could be caused by the fear of potential legal consequences in the case of ADRs owing to medication errors or off-label use [8]. Studies showed a major impact of ADRs on the quality of life of children/adolescents and their families [9][10][11] and on therapy failure due to ADRs [12]. However, little is known about the extent to which physicians include ADRs in their treatment decisions or in the communication to parents and patients.…”