title: Exploratory study into the unmet supportive needs of people diagnosed with cirrhosis in 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.
  
  
  OBJECTIVE
  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.affiliation: Population Health, QIMR Berghofer Medical Research Institute, Brisbane, Queensland, Australia.|School of Medicine, University of Queensland, Brisbane, Queensland, Australia.
authors.forename: Patricia C
authors.initials: PC
authors.lastname: Valery
authors.affiliation: Population Health, QIMR Berghofer Medical Research Institute, Brisbane, Queensland, Australia.|School of Medicine, University of Queensland, Brisbane, Queensland, Australia.|Pharmacy Department, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
authors.forename: Paul J
authors.initials: PJ
authors.lastname: Clark
authors.affiliation: Institute of Health and Biomedical Innovation and School of Public Health and Social Work, Queensland University of Technology, Brisbane, Queensland, Australia.|Centre for Functioning and Health Research, Metro South Health, Brisbane, Queensland, Australia.
authors.forename: Steven M
authors.initials: SM
authors.lastname: McPhail
authors.affiliation: Prince Charles Hospital, Metro North Health, Brisbane, Queensland, Australia.
authors.forename: Tony
authors.initials: T
authors.lastname: Rahman
authors.affiliation: School of Medicine, University of Queensland, Brisbane, Queensland, Australia.|Pharmacy Department, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
authors.forename: Kelly
authors.initials: K
authors.lastname: Hayward
authors.affiliation: School of Medicine and Public Health, University of Newcastle, New Castle, New South Wales, Australia.|Diamantina Institute, University of Queensland, Brisbane, Queensland, Australia.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Martin
authors.affiliation: Pharmacy Department, Princess Alexandra Hospital, Brisbane, Queensland, Australia.|The Centre for Liver Disease Research, University of Queensland, Brisbane, Queensland, Australia.
authors.forename: Leigh
authors.initials: L
authors.lastname: Horsfall
authors.affiliation: Loma Linda University Medical Center, Loma Linda University, Loma Linda, California, USA.
authors.forename: Michael L
authors.initials: ML
authors.lastname: Volk
authors.affiliation: Population Health, QIMR Berghofer Medical Research Institute, Brisbane, Queensland, Australia.|School of Medicine, University of Queensland, Brisbane, Queensland, Australia.|Department of Gastroenterology, Royal Brisbane and Women's Hospital, Brisbane, Queensland, Australia.
authors.forename: Richard
authors.initials: R
authors.lastname: Skoien
authors.affiliation: Pharmacy Department, Princess Alexandra Hospital, Brisbane, Queensland, Australia.|The Centre for Liver Disease Research, University of Queensland, Brisbane, Queensland, Australia.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Powell
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology*; D000328:Adult; D000359:Aftercare / Q000592:standards*; D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety / Q000453:epidemiology*; D002908:Chronic Disease; D003430:Cross-Sectional Studies; D003863:Depression / Q000453:epidemiology*; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008103:Liver Cirrhosis / Q000453:epidemiology / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D011793:Queensland / Q000453:epidemiology; D012944:Social Support; D012959:Socioeconomic Factors
keywords: cirrhosis; health professionals; support services; supportive care; unmet needs