PATIENT DECISION MAKING ABOUT UTILIZATION OF TREATMENT AND MANAGEMENT METHODS: TOWARD ENHANCED PROMOTION OF PREVENTIVE SELF-MANAGEMENT FOR ULCERATIVE COLITIS

Abstract

Abstract BACKGROUND Living with Ulcerative Colitis (UC) is accompanied by physical and psychosocial burdens that significantly detract from quality of life. To accommodate, individuals employ multiple treatment and management methods to mitigate gastrointestinal (GI) disease symptoms, reduce pharmaceutical dependence, and respond to the daily challenges of living with UC. This study examines why and how patients choose to utilize treatment and management methods, with emphasis on patient perspectives and experiences. METHODS Adults living with UC for at least 5 years, who had experienced at least one disease flare, were recruited to participate in individual, semi-structured qualitative interviews (N=21). Verbatim transcripts were thematically analyzed using emergent coding with Nvivo12®. RESULTS Decision making about the use of treatment and management methods was shaped by participants’ sources of information, attitudes toward self-management, and personal motivations. Participants rarely expressed feelings of personal responsibility for the unpredictable course of illness. However, some believed that they could, to varying degrees, take charge of their UC experience. A few individuals described an active approach to managing their illness through self-adjusting treatment methods, health behavior change, and self-advocacy towards satisfaction with treatment options and enhanced patient-provider communication. The poor quality of life associated with the daily burden of living with UC emerged as a primary motive for exploration and utilization of treatment and management methods. Participants drew conclusions about diet’s impact on disease activity by observation of immediate GI symptoms. While most patients aimed to mitigate UC symptoms by taking medications, reducing stress, and avoiding perceived ‘trigger’ foods, participants reported primarily utilizing treatment and management methods as reactive responses to flares instead of as preventive measures against disease activity and disease progression. DISCUSSION Results provide insight into patient decision making and may inform individualized patient care, improve patient-provider communication, and guide interdisciplinary efforts to support self-management among patients with UC. Findings highlight a need for greater focus on promoting preventive self-management lifestyle behaviors to protect against disease activity and progressive impairment. This research supports the promotion of disease prevention and self-management both inside and outside of the clinical setting.