The majority of patients with the severe liver disease cirrhosis may not be getting the medical support they want or need, according to a study by QIMR Berghofer Medical Research Institute and The University of Queensland.
Cirrhosis is the advanced stage of a range of chronic liver diseases. The number of deaths and hospital admissions due to cirrhosis is continuing to increase in Australia.
The researchers created a validated assessment tool to collect information about the needs of cirrhosis patients to identify what supportive care they require. The tool, named the Supportive Needs Assessment tool for Cirrhosis (SNAC), lists 39 areas of need, separated into four subgroups: practical and physical needs; lifestyle changes; psychological concerns; and, information needs.
The lead researcher and head of QIMR Berghofer’s Cancer and Chronic Disease research group, Professor Patricia Valery, said 88 per cent of the 458 Australian adult cirrhosis patients who took part in the study reported they needed ‘A little’, ‘Some’, or ‘A lot’ of help with at least one item.
“If people aren’t having their supportive-needs met, they may be managing their chronic disease sub-optimally and that can affect their quality of life,” Professor Valery said.
“Our study uncovered a number of unmet patient needs that clinicians were not identifying during consultations, including a need for help in managing common, debilitating symptoms.”
Supportive care embraces the full range of services and health providers such as general practitioners, social workers, dieticians, psychological support (e.g. psychiatrist, psychologist), exercise physiologist, and respite care.
The study found more than one in three patients reported they were not getting adequate support to address their lack of energy, tiredness, and poor sleep. Thirty-one per cent said they needed help with feeling unwell, and a quarter of patients indicated that they needed help with tasks around the house. As the severity of the patient’s cirrhosis increased, so did their need for practical and physical help.
Patients with more advanced cirrhosis had almost double the rate of need for psychosocial support compared to patients in the early stages of cirrhosis. These patients described anxiety, stress, feeling down or depressed, and a general lack of interest. Common concerns included fears about their illness deteriorating and developing liver cancer.
Leading causes of cirrhosis include alcohol-related liver disease, chronic hepatitis B and C, and non-alcoholic fatty liver disease (NAFLD). Cirrhosis is also the greatest risk factor for primary liver cancer, which is now the most rapidly rising cause of cancer death in Australia.
Professor Valery said the researchers found the level and type of unmet needs differed according to the patients’ age and their type of liver disease, irrespective of disease severity.
Younger patients and those of working age (18-64 years) had an increased need for help with practical and physical issues, psychosocial issues, and making lifestyle changes compared to patients aged 65 years or older.
Patients with NAFLD had a higher rate of unmet needs than other liver diseases, specifically in the areas of lifestyle change and practical and physical needs.
Director of the network Centre for Liver Disease Research at The University of Queensland, and Princess Alexandra Hospital Hepatologist, Professor Elizabeth Powell, said the complexity of the disease and the associated psychological and social impacts of a diagnosis of cirrhosis posed challenges for clinicians.
“As cirrhosis progresses, the amount of medical intervention and care that patients require changes. This in turn may impact on their ability to function independently and influence their quality of life,” Professor Powell said.
“Accurate assessment of the supportive needs of patients with cirrhosis is important to improve care and we believe the validated Supportive Needs Assessment tool for Cirrhosis that we developed could help to identify those needs and assist clinicians adapt their treatment and direct referrals to appropriate support services.“
Professor Valery said to be effective, supportive care services had to match the unique needs of each patient.
“The use of the SNAC tool in the clinic could help health professionals to clearly understand what their cirrhosis patients need and assist them in providing the optimal support and care in their treatment,” Professor Valery said.
“From a research perspective the tool can also help us understand where the system is falling down and help inform the development of better resources and areas of study.”
The study findings have been published in the journal Hepatology Communications.
The study was funded by the 2020 Queensland Metro South Health Research Support Scheme Project (Women in Health Research).