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

Valery, Patricia C., Clark, Paul J., McPhail, Steven M., Rahman, Tony, Hayward, Kelly, Martin, Jennifer, Horsfall, Leigh, Volk, Michael L., Skoien, Richard and Powell, Elizabeth (2017) Exploratory study into the unmet supportive needs of people diagnosed with cirrhosis in Queensland, Australia. Internal Medicine Journal, 47 4: 429-435. doi:10.1111/imj.13380

Author Valery, Patricia C.
Clark, Paul J.
McPhail, Steven M.
Rahman, Tony
Hayward, Kelly
Martin, Jennifer
Horsfall, Leigh
Volk, Michael L.
Skoien, Richard
Powell, Elizabeth
Title Exploratory study into the unmet supportive needs of people diagnosed with cirrhosis in Queensland, Australia
Journal name Internal Medicine Journal   Check publisher's open access policy
ISSN 1445-5994
Publication date 2017-04-11
Year available 2017
Sub-type Article (original research)
DOI 10.1111/imj.13380
Open Access Status Not yet assessed
Volume 47
Issue 4
Start page 429
End page 435
Total pages 7
Place of publication Richmond, Australia
Publisher Wiley-Blackwell Publishing Asia
Language eng
Subject 2724 Internal Medicine
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.
Keyword cirrhosis
health professionals
support services
supportive care
unmet needs
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status UQ

Document type: Journal Article
Sub-type: Article (original research)
Collections: HERDC Pre-Audit
Queensland Brain Institute Publications
School of Medicine Publications
UQ Diamantina Institute Publications
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Created: Sun, 24 Dec 2017, 06:26:01 EST