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Exploratory study into the unmet supportive needs of people diagnosed with cirrhosis in Queensland, Australia
Author(s) -
Valery Patricia C.,
Clark Paul J.,
McPhail Steven M.,
Rahman Tony,
Hayward Kelly,
Martin Jennifer,
Horsfall Leigh,
Volk Michael L.,
Skoien Richard,
Powell Elizabeth
Publication year - 2017
Publication title -
internal medicine journal
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.596
H-Index - 70
eISSN - 1445-5994
pISSN - 1444-0903
DOI - 10.1111/imj.13380
Subject(s) - medicine , cirrhosis , pharmacist , quality of life (healthcare) , disease , family medicine , nursing , pharmacy
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.