An exploratory study into the unmet supportive needs of people diagnosed with cirrhosis in Queensland, Australia

Background Many patients with cirrhosis follow complex medication and dietary regimens and those with decompensated cirrhosis suffer debilitating complications. These factors impact on activities of daily living and quality of life. Objective To explore the concerns and challenges of people with cirrhosis and their use of support services. Also, to describe health professionals’ (HP) perspectives of patients’ concerns. Methods Cross-sectional study at a tertiary liver clinic involving 50 patients and 54 HPs. Data were collected using structured questionnaires. Patients’ report of their challenges/problems now that they have cirrhosis (“patient-volunteered concerns”), and HPs’ report of patients’ concerns. Both also ranked a list of 10 potential concerns. Results Patients were on average 58 years old (SD=10.2), mostly male (78%), Caucasian (86%), and with compensated cirrhosis (60%). The patients’ most common volunteered concerns related to managing symptoms, emotional issues and disease. Most ranked ‘developing liver cancer’ (79%), ‘losing ability to do daily tasks for yourself’ (76%), ‘fear of dying’ (64%), and ‘fear of the unknown’ (64%) as priority concerns. Regarding use of support services, 24% of patients had accessed a dietician, 20% a pharmacist, and 18% a psychologist. From the HPs’ perspective, the patients’ most significant challenges related to managing disease (65%) and symptoms (48%), access to health care (56%), and information/knowledge (48%). Conclusions Our findings demonstrate that cirrhosis (its symptoms, complications and treatment) is associated with significant concerns for patients. The discrepancies between the views of HPs and patients suggest that we may not be measuring or addressing patients’ needs appropriately