Participation in healthcare behavior by adolescents with epilepsy and factors that influence it during the transition period: A cross-sectional study in China

Abstract

Purpose: Given the importance of adolescents' participation in the care of their chronic diseases during their transitional period in the healthcare system, the present study investigated the degree of participation in healthcare behavior by Chinese adolescents with chronic epilepsy and identified factors that should be addressed by health interventions.

Methods: The study used a convenience sample of 1238 adolescent patients with epilepsy, who were hospitalized in 17 tertiary A-level children or maternal and child specialty hospitals in China between January 2017 and March 2020. Several scales were used to measure their degree of participation in healthcare behavior and the factors that influence it. Data collection was conducted after uniform training of the investigators. The adolescents who met the inclusion and exclusion criteria could scan the QR code of the questionnaire via a mobile phone.

Results: The age of the participants ranged from 12.2 to 17.8 years (mean 14.2 years), and the sample had a male-to-female ratio of 1.25:1. The patients' average total score of participation in healthcare behavior was 125.58 (SD = 12.25), which was lower than the norm for China. Their scores on the six dimensions of participation were highest for information interaction, followed in descending order by medical decision-making, treatment and care, appeal, diagnosis and treatment decision-making, and questioning supervision. Multiple linear regression found significant associations between health-care participation and five personal and disease variables (gender, age, course of disease, number of comorbid diseases, type of family structure), self-efficacy, and coping styles (cognitive-palliative and acceptance), which explained 52.1% of the variance in patients' total scores on participating in healthcare behavior.

Conclusions: The participation of young Chinese patients with epilepsy in transitional healthcare behavior needs to be improved. Participation was positively associated with being female, a longer course of disease, fewer comorbidities, and living in a nuclear family. Patients who used cognitive-palliative and acceptance coping styles and those who had higher self-efficacy also had significantly higher levels of participation in healthcare behavior. The study provides useful reference points for adolescents with chronic disease to participate in healthcare programs, in order to achieve a smooth transition from childhood to adulthood.

Keywords: Adolescents; Epilepsy; Healthcare behavior; Participation; Transition period.