Objective: The objective of this qualitative study was to examine patients' perspectives on their relationships with healthcare providers (HCPs) as communicated in their expressive writings about irritable bowel syndrome (IBS).
Methods: As part of a large national online study, IBS patients were asked to: (a) write expressively about their IBS illness experience for 30 min/day for four consecutive days and (b) answer the question, "What is the most important thing your HCP can do to maximize his/her relationship with you?" A key word search was used to identify comments that mentioned the words "doctor," "doc," "physician," "MD," "gastroenterologist," "nurse," "nurse practitioner," or "physician assistant" in the 228 expressive writings completed by the first 57 participants (four writings for each subject). Analyses of the comments about the patient-HCP relationship and responses to the above question were performed by the authors who identified themes and their frequencies over several sessions using a quantitative content analysis method.
Results: We report the results of the first 57 subjects who participated in the study. Subjects' mean age was 41.1 (± 12.7) years, gender was 82% female, 98% had seen an MD for IBS, 58% had IBS <10 years, with mild/moderate disease severity (IBS severity scale (IBSSS) 190.6 + 45.55), and IBS-quality of life (QOL; 62.7.3 + 21.58). Of the 57 subjects who wrote expressively about their experiences related to IBS, 40 (70%) wrote about their relationships with their HCPs in at least one of their four writings. Of the 197 relationship comments about HCPs made in a total of 84 writings, 106 (54%) were categorized as "negative," 22 (11%) as "positive," and 69 (35%) comments were categorized as "neutral mentions." The top five themes identified were: "I need more empathy and listening from my HCP about how much IBS affects my life" (27%), "Nothing my HCP does helps my IBS" (25%), "My HCP has been helpful and reassuring" (17%), "My HCP thinks I'm crazy" (8%), and "I don't trust my HCP" (5%). Forty-nine (86%) subjects answered the question regarding maximizing the relationship with their HCP, with 53% reporting that listening, empathy, and providing education were the most important factors for maximizing the relationship.
Conclusion: Our results demonstrate that the patient-HCP relationship is central to patients' illness experience. The majority of our study subjects viewed their relationships with HCPs negatively, with major concerns relating to being heard and receiving empathy. The study findings highlight the need for improved patient-HCP communication. Further research utilizing novel modalities, such as expressive writing, in eliciting patient information and perspectives, may provide valuable educational tools.