TY - JOUR
T1 - Exploratory study into the unmet supportive needs of people diagnosed with cirrhosis in Queensland, Australia
AU - Valery, Patricia C.
AU - Clark, Paul J.
AU - McPhail, Steven M.
AU - Rahman, Tony
AU - Hayward, Kelly
AU - Martin, Jennifer
AU - Horsfall, Leigh
AU - Volk, Michael L.
AU - Skoien, Richard
AU - Powell, Elizabeth
N1 - Publisher Copyright:
© 2017 Royal Australasian College of Physicians
PY - 2017/4/1
Y1 - 2017/4/1
N2 - 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.
AB - 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.
KW - cirrhosis
KW - health professionals
KW - support services
KW - supportive care
KW - unmet needs
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U2 - 10.1111/imj.13380
DO - 10.1111/imj.13380
M3 - Article
C2 - 28145084
SN - 1444-0903
VL - 47
SP - 429
EP - 435
JO - Internal Medicine Journal
JF - Internal Medicine Journal
IS - 4
ER -