What information do people with cirrhosis and their family members want during out-patient appointments? A qualitative study exploring the perspectives of patients, close family member and liver health professionals.

Background: Good communication between health professionals and patients is important in healthcare, but difficult to implement in practice. This is highlighted in care for people with cirrhosis where patients have little understanding about their disease and feel stigmatized when communicating with health professionals. No study has explored the conversation exchanges between health professionals and patients with cirrhosis. This paper reports on secondary data analysis to explore the contents of patient doctor communication in hepatology out-patient clinics. Methods: Semi-structured interviews and focus groups were conducted with 12 patients, 5 close family members and 14 liver health professionals, aimed at exploring aspects of the consultation: questions asked or not asked during the consultation, the ease of answering questions, understanding of information received, and their preparation for the consultation. All interviews were audio-taped and data analysed using framework analysis. Results: Questions discussed centred on test results, symptoms and their management. Patients and family members felt comfortable with asking health professionals questions, but wanted better information about prognosis, the effects of medication on their symptoms and the likelihood of further deterioration in their liver disease. Patients had difficulty in understanding information received as it was couched in technical terms. Emphasis in consultations focused on the physical aspect of patient care leaving little time to discuss the psychological impact of their disease. Some clinicians felt patients should ask questions about their future, particularly about advance care plans. Key barriers in asking questions included: a) limited time for out-patient appointments, b) expectation that only medical issues could be discussed, c) fear about giving ‘negative’ information to patients, d) memory issues resulting from hepatic encephalopathy. Conclusions: Health professionals should use simple language when providing patients and their families with explanations about liver disease, its physical and psychological impact and prognosis. Information sheets about these topics should be made available for patients to take home. Doctors should be willing to explore supportive care issues with patients or consider referring patients to another health care professional with more time and expertise to discuss specific issues. Further work needed to explore the interactions between these groups using observational methods.