Yizhen Wang,1,2,* Shijing Zhang,1,2,* Wenjuan Fang,2 Yanli Yao,1 Qun Yu,1 Xia Zhao,1 Xinqiong Zhang1 

1School of Nursing, Anhui Medical University, Hefei, Anhui, People’s Republic of China; 2Department of Gastroenterology, The First Affiliated Hospital of Anhui Medical University, Hefei, Anhui, People’s Republic of China

*These authors contributed equally to this work

Correspondence: Xinqiong Zhang, School of Nursing, Anhui Medical University, Hefei, Anhui, People’s Republic of China, 230032, Email hixqzhang@163.com

Purpose: This study aimed to evaluate the current status and the discrepancies between anticipated and actual involvement in decision-making roles among patients with inflammatory bowel disease, as well as to explore the factors that influenced actual decision-making participation.
Patients and Methods: From December 2023 to June 2024, a convenience sampling method was employed to recruit patients with inflammatory bowel disease from the Department of Gastroenterology at a tertiary hospital in Anhui, China. A general information questionnaire, the Control Preference Scale, the All Aspects of Health Literacy Scale, and the Decision Dilemma Scale were utilized for investigation and analysis.
Results: A total of 274 patients with inflammatory bowel disease were recruited.The distribution of patients’ expected participation in decision-making preferences was as follows: 68 cases (24.82%) actively, 143 cases (52.19%) shared, and 63 cases (22.99%) passively. Actual participation in decision-making roles was as follows: 39 cases (14.23%) actively, 147 cases (53.65%) shared, and 88 cases (32.12%) passively. Expected participation in decision-making preferences and actual participation in decision-making roles were moderately consistent, with a compliance rate of 69.34% and a kappa value of 0.498 (p < 0.001). The overall health literacy score was (24.34± 5.47), and the decision-making dilemma score was (25.22± 15.20). Factors affecting actual participation in decision-making roles included marital status, education level, Average monthly household income, current work status, type of disease diagnosis, current treatment modalities, and health literacy.
Conclusion: Patients with inflammatory bowel disease have high expectations and a genuine willingness to participate in decision-making, along with overall health literacy. However, decision-making dilemmas persist, and a discrepancy exists between expectations and actual decision-making roles. Healthcare professionals should prioritize assessing patients’ individual circumstances and decision-making needs while actively engaging them in the decision-making process. Patient engagement and satisfaction can be enhanced by providing targeted and personalized strategies.

Keywords: decision-making preferences, inflammatory bowel disease, health literacy, decision-making dilemmas, shared decision-making