Attitudes and awareness in autonomous decision on medical treatment or inclusion in clinical trials amongst Slovenian adolescents: an online survey

Abstract

Background In Europe and elsewhere in the world, activities are taking place to improve the awareness of children and adolescents (hereinafter: adolescents) regarding their rights and obligations in autonomous decision-making about their own medical treatment and participation in clinical research. Methods The cross-sectional survey of adolescents was carried out using an anonymous online questionnaire. We obtained consent from the Commission of the Republic of Slovenia for Medical Ethics. Participating young people were invited through the network of primary and secondary schools, the Society of Dystrophy of Slovenia and through the dissemination of electronic messages. The online questionnaire was open from April 25 to May 6, 2023. Young people aged 13 to 20 joined the survey. The association between several factors and awareness of the minimum age limit was tested by univariate logistic regression. All statistical testing was performed at a significance level of 0.05. Results The responses of 458 respondents were analysed, of which 281 were male. Only 8.3% of participating adolescents knew the age limit set by law for autonomous decision-making about medical treatment at 15 years old. Most answered that a medical institution should inform them about their rights (62.4%). Only 5.02% responded that they do not need their parents’ consent when making decisions; 2.6% of respondents answered that they autonomously decided to undergo treatment without their parents’ knowledge. The majority obtained information about treatment from a doctor (more than 70%); 42.8% were in favour of new forms of treatment, especially chronic patients (more than 70%); 44.8% had already heard about clinical research, most of them through the media (55.4%); 70% of the respondents answered correctly about making an autonomous decision about participation in research at the age of 18. About three-quarters (75.6%) of respondents who had heard of clinical research believe that an individual should be paid for participating. Conclusions Our research showed insufficient awareness of the age limit of adolescents regarding medical treatment decisions and clinical research. The prevailing view is that health professionals should inform young people more about their rights. Most adolescents believe they should be paid to participate in clinical research. Supplementary Information The online version contains supplementary material available at 10.1186/s12909-024-06164-w.