South Australians suffering from the most common fatal lung disease face an ongoing struggle with health services, according to new research from the University of Adelaide.
The results of the study - now published in the Internal Medicine Journal - highlight a wide range of problems with the care of patients with COPD (chronic obstructive pulmonary disease).
The study's authors make a number of recommendations for changes to healthcare that would improve patients' lives.
COPD is most commonly caused by smoking and is an increasing cause of deaths in Australia and around the world. Patients with end-stage COPD can experience physical symptoms and psychological distress as severe as patients with lung cancer.
The study involved interviews with COPD patients, their carers, experts, and healthcare service providers, to better understand the level of care and quality of life experienced by patients.
It found that the needs of people with COPD are not being met by the health system:
-- there is no coordinated plan for their healthcare, which is fragmented and reactive;
-- there is a lack of communication between GPs and hospital specialists;
-- there are barriers to obtaining support to assist with daily living;
-- the role of carers assisting patients in the home is poorly recognised;
-- patients with COPD find it harder to access palliative care compared with cancer patients, despite the severity of their condition;
-- there is no clear transition from severe COPD to end-stage disease, and a palliative approach to care and active treatment can occur at the same time.
"There is no doubt that there are severe problems with the healthcare of people with COPD. This is a group of patients with specific needs that is falling under the radar," says the study's lead author, Associate Professor Gregory Crawford from the University of Adelaide's School of Medicine.
"COPD has a devastating impact on people's lives, both in terms of their physical functioning and social roles.
"Breathlessness means that basic tasks such as personal care, cooking and cleaning are a struggle for all sufferers, and impossible for many. Activities outside the home are restricted. There is a strong sense of panic among patients because of their severe breathlessness.
"For those who live alone, the challenges of managing day-to-day are enormous. Carers - for those who are lucky enough to have them - are over-burdened.
"The main focus of service provision should be on assisting people to live at home, providing access to a range of community services and an increased recognition of, and support for, carers," Associate Professor Crawford says.
"A palliative approach should be taken at all phases of the illness, with a focus on the patients' needs, not on their age or prognosis, with clear plans and communication about the focus of care and treatment options, good symptom management and emotional and psychological support."