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

Abstract

Our findings demonstrate that cirrhosis (its symptoms, complications and treatment) is associated with significant concerns for patients. The discrepancies between the views of HP and patients suggest that we may not be measuring or addressing patients' needs appropriately.

Supportive and palliative care in people with cirrhosis: International systematic review of the perspective of patients, family members and health professionals

“…27,35 Younger patients and those with hepatitis C felt socially isolated, 32 with increased anxiety and depression. 35 Patients' perceived needs Four qualitative 9,27,28,32 and three quantitative studies 30,35,36 contributed to the theme of patients' perceived needs (Table 2).…”

“…Patients wanted to have better information about their cirrhosis and different aspects of care such as the admission process, the option of home-based care 9,27 and about how to manage their symptoms. 36 They also wanted information on a range of psychological and practical needs, such as stopping alcohol and substance misuse, developing cancer, losing the ability to do daily tasks, and fears about dying, the unknown and what the future holds. 36 Some patients raised issues about the practical difficulties of living with semi-permanent abdominal drains.…”

“…36 They also wanted information on a range of psychological and practical needs, such as stopping alcohol and substance misuse, developing cancer, losing the ability to do daily tasks, and fears about dying, the unknown and what the future holds. 36 Some patients raised issues about the practical difficulties of living with semi-permanent abdominal drains. 28 Many patients felt that their pain was undertreated.…”

“…However, having improved knowledge about their disease or their medication may not improve a person's adherence to their medication regimen. 30 Health professionals' perspectives Communication with patients with cirrhosis and family members about their disease and their treatment Three qualitative 11,25,37 and three quantitative studies 20,36,38 contributed to the theme of health professionals' perspectives of their communication with patients and families about liver disease and its treatments (Table 4). Health professionals were aware that both patients and family members had little understanding about their liver disease or its severity 11,20 which if addressed, would greatly benefit patients.…”

The Patient’s Perspective in Cirrhosis: Unmet Supportive Care Needs Differ by Disease Severity, Etiology, and Age

“…(10)(11)(12) In particular, patients with cirrhosis worry about development of liver cancer, disease symptoms and treatment, as well as the impact of the disease on social interactions and their ability to function effectively at home and/or work. (13,14) A key aspect of management for all patients with cirrhosis is supportive care and alleviation of symptoms. However, among patients with cirrhosis, there is little information on the extent of supportive care needs.…”