Patricia C Valery1,2, Paul J Clark1,2,3, Steven M McPhail4,5, Tony Rahman6, Kelly Hayward2,3, Jennifer Martin7,8, Leigh Horsfall3,9, Michael L Volk10, Richard Skoien1,2,11, Elizabeth Powell3,9. 1. Population Health, QIMR Berghofer Medical Research Institute, Brisbane, Queensland, Australia. 2. School of Medicine, University of Queensland, Brisbane, Queensland, Australia. 3. Pharmacy Department, Princess Alexandra Hospital, Brisbane, Queensland, Australia. 4. Institute of Health and Biomedical Innovation and School of Public Health and Social Work, Queensland University of Technology, Brisbane, Queensland, Australia. 5. Centre for Functioning and Health Research, Metro South Health, Brisbane, Queensland, Australia. 6. Prince Charles Hospital, Metro North Health, Brisbane, Queensland, Australia. 7. School of Medicine and Public Health, University of Newcastle, New Castle, New South Wales, Australia. 8. Diamantina Institute, University of Queensland, Brisbane, Queensland, Australia. 9. The Centre for Liver Disease Research, University of Queensland, Brisbane, Queensland, Australia. 10. Loma Linda University Medical Center, Loma Linda University, Loma Linda, California, USA. 11. Department of Gastroenterology, Royal Brisbane and Women's Hospital, Brisbane, Queensland, Australia.
Abstract
BACKGROUND: Many patients with cirrhosis follow complex medication and dietary regimens, and those with decompensated cirrhosis suffer debilitating complications. These factors impact activities of daily living and quality of life. AIMS: To explore the concerns and challenges of people with cirrhosis and their use of support services and to also describe health professionals' (HP) perspectives of patients' concerns. METHODS: This is a cross-sectional study at a tertiary liver clinic involving 50 patients and 54 HP. Data were collected using structured questionnaires. The study includes patients' report of their challenges/problems now that they have cirrhosis ('patient-volunteered concerns') and HP' 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 the use of support services, 24% of patients had accessed a dietician, 20% a pharmacist and 18% a psychologist. From the HP' perspective, the patients' most significant challenges related to managing disease (65%) and symptoms (48%), access to healthcare (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 HP and patients suggest that we may not be measuring or addressing patients' needs appropriately.
BACKGROUND: Many patients with cirrhosis follow complex medication and dietary regimens, and those with decompensated cirrhosis suffer debilitating complications. These factors impact activities of daily living and quality of life. AIMS: To explore the concerns and challenges of people with cirrhosis and their use of support services and to also describe health professionals' (HP) perspectives of patients' concerns. METHODS: This is a cross-sectional study at a tertiary liver clinic involving 50 patients and 54 HP. Data were collected using structured questionnaires. The study includes patients' report of their challenges/problems now that they have cirrhosis ('patient-volunteered concerns') and HP' 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 the use of support services, 24% of patients had accessed a dietician, 20% a pharmacist and 18% a psychologist. From the HP' perspective, the patients' most significant challenges related to managing disease (65%) and symptoms (48%), access to healthcare (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 HP and patients suggest that we may not be measuring or addressing patients' needs appropriately.
Authors: Nneka N Ufere; Jan Hinson; Simon Finnigan; Elizabeth E Powell; John Donlan; Cathy Martin; Phil Clark; Patricia C Valery Journal: Curr Treat Options Gastroenterol Date: 2022-04-19
Authors: Patricia C Valery; Christina M Bernardes; Katherine A Stuart; Gunter F Hartel; Steven M McPhail; Richard Skoien; Tony Rahman; Paul J Clark; Leigh U Horsfall; Kelly L Hayward; Rohit Gupta; Elizabeth E Powell Journal: Patient Prefer Adherence Date: 2020-03-18 Impact factor: 2.711
Authors: Hamish Innes; Alex J Walker; Jennifer Benselin; Jane I Grove; Vincent Pedergnana; M Azim Ansari; Shang-Kuan Lin; John McLauchlan; Sharon J Hutchinson; Eleanor Barnes; William L Irving; Indra Neil Guha Journal: Clin Transl Gastroenterol Date: 2022-02-09 Impact factor: 4.396