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Calling for better care for people with chronic lung disease, and increased prevention efforts

Introduction by Croakey: A draft clinical care standard for Chronic Obstructive Pulmonary Disease (COPD) has been released for public consultation by the Australian Commission on Safety and Quality in Health Care.

Croakey readers have until 18 December to provide feedback.

Meanwhile, the Lung Foundation Australia is calling for improved prevention and diagnosis, and increased funding for community management of this “underappreciated public health concern”.

Dr Catherine Runge and Paige Preston from Lung Foundation Australia highlight below the importance of early diagnosis, ahead of this Wednesday’s World COPD Day, with the theme: Breathing is Life – Act Earlier.


Catherine Runge and Paige Preston write:

Chronic obstructive pulmonary disease is under-recognised, underdiagnosed, and underfunded. For far too long this serious lung disease has flown under the radar, despite the high prevalence, contribution to disability, cost to the health system, and impact on patients and their families.

Approximately 1 in 13 Australians over the age of 40 have COPD. For World COPD Day last year, Lung Foundation Australia – the peak Australian body for lung health – launched a Blueprint for Action to put COPD on the national agenda. Developed in partnership with people living with COPD, clinicians, and researchers, the Blueprint provides a framework to prevent the disease and improve outcomes for people living with it.

Ahead of this year’s World COPD Day on Wednesday 15 November, Lung Foundation will launch a campaign that focuses on two recommendations from the Blueprint: improving diagnosis and funding community management.

The term COPD itself causes uncertainty, with the most common type, emphysema, having greater name recognition. COPD describes a chronic lung disease characterised by obstructed airflow, with breathlessness the key symptom.

The disease results from long-term exposure to irritants, most often cigarette smoke, but also occupational hazards and air pollution. Genetics, prenatal events, low birth weight, and frequent respiratory infections are also risk factors. There is no cure, but early diagnosis, treatment, and proper management can slow progression.

Underdiagnosed

Australian Institute of Health and Welfare estimated prevalence in 2018-2019, finding that 2.7 percent of Australians aged 35 years and over had COPD as determined by COPD‑related health service use. This reflects the last National Health Survey (2017-2018) that found a self-reported rate of 2.5 percent for all Australians.

However, a cross-sectional study that used spirometry testing – the gold standard – estimated a rate of 7.5 percent in Australians aged 40 years and over.

This means that many Australians are undiagnosed and missing the opportunity to slow COPD progression.

Despite the high morbidity and mortality caused by COPD worldwide, healthcare resources and research funding are often disproportionate and inequitable. In Australia in 2021, COPD was the fifth most common cause of death and in 2022 it caused the fifth highest disease burden.

COPD costs the Australian healthcare system around $1 billion a year, and is the most common cause of potentially preventable hospitalisations for chronic conditions – more than heart failure, diabetes complications, and asthma.

Top five chronic conditions by potentially preventable hospitalisations in Australia, 2017-18. Image supplied by LFA

Lived experience

The testimonies of people with COPD convey the lived impact.

In the Blueprint, an advocate Cathy described the experience of a COPD exacerbation, which is when symptoms become much more severe:

My first big exacerbation was the most terrifying night of my life. Went to sleep a little unwell, woke up at 1 am, and couldn’t breathe….

Nine days in hospital, five weeks to recover back to some semblance of normal and a setback on my lungs that I won’t recover from. I was petrified of going to sleep for weeks after in case it happened again, so I ended up an absolute zombie from lack of sleep. I’m still nervous at night.”

COPD can impact many aspects of a person’s life beyond physical health, such as their finances (including out-of-pocket medical costs) and social life (due to symptom burden and/or fear of exposure to respiratory infections).

Stigma

There is evidence that COPD is not well understood worldwide.

In 2022, AstraZeneca commissioned survey research with 14,890 people in 14 countries. Of 1,000 nationally representative Australians, 35 percent understood that COPD is a lung condition, and 17 percent had never heard of it (AstraZeneca market research used with permission from AstraZeneca).

Where there is awareness, there is often stigma driven by adverse attitudes to diseases related to tobacco use.

Cathy has experienced this:

So many people have no idea what COPD actually is, but most people do know what emphysema is and associate that with being a ‘smoker’s disease’.

I have actually had someone say to me that I deserve to be sick.”

People with COPD are more likely to report experiencing stigma compared to those with other or no chronic illnesses.

Building awareness of COPD requires building empathy and acknowledging the impact of commercial influences, an emphasis on the tobacco industry as the root cause of smoking-related diseases, rather than individual victim-blaming.

Improving diagnosis

COPD is underdiagnosed. A spirometry test is the gold standard for diagnosing COPD; however, it is underused in primary care due to a range of barriers, including low confidence of clinicians in performing the test and a lack of adequate time to perform it.

The COVID-19 pandemic paused spirometry in primary care due to infection control guidelines; however, data from the Medicare Benefits Schedule show that testing has not returned to pre-pandemic levels.

While spirometry is key to diagnosis, early diagnosis through risk assessment is also paramount.

Naomi had to fight for her diagnosis. She recounted her story in the Blueprint (read more about Naomi on page 30):

I fell pregnant and during the third trimester I could not control my coughing. Yet again, the doctor I saw made me feel like it was all in my head. But I knew it wasn’t normal.”

A review of the diagnosis of COPD is urgently required.

Funding community management

It is entirely possible to live a long and full life with COPD. Management provided through community care is cost-effective and helps people live well, and stay out of hospital. Pulmonary rehabilitation is part of the gold standard of COPD management.

Ongoing exercise often helps maintain the benefits of pulmonary rehabilitation, which John explains in the Blueprint: “Often doctors tell their patients to go home and rest, but I have found that you need to keep active. Try and do your rehab exercises and keep learning as much as possible.”

Funding for pulmonary rehabilitation and exercise maintenance programs in Australia is suboptimal and services in non‑metropolitan areas are lacking.

Culturally safe services for Aboriginal and Torres Strait Islander people are also insufficient. This is despite COPD burden being higher for Aboriginal and Torres Strait Islander people, and for Australians living in rural and remote areas. Funding for COPD community management is desperately needed.

COPD is an underappreciated public health concern. There are, however, many opportunities for primary, secondary and tertiary prevention, and improved care, which all Australian jurisdictions need to action.

Federally, Lung Foundation Australia recommends that:

  • The Department of Health and Aged Care conduct a review of the diagnosis of COPD and other chronic respiratory diseases to improve prognosis.
  • The Australian Government fund COPD community management to give Australians the care they deserve.

More information

Lung Foundation Australia webinar on 15 November 2023, to share the lived experiences of people living with COPD. Registration and more details here.

Read Lung Foundation Australia’s COPD Blueprint here.

See Ian’s story about living with COPD here.

Author details

Dr Catherine Runge is a Policy and Project Officer at Lung Foundation Australia and an Adjunct Fellow at The University of Queensland.

Paige Preston is General Manager, Policy, Advocacy and Prevention at Lung Foundation Australia, and an Adjunct Lecturer at The University of Queensland.

L-R: Dr Catherine Runge, Paige Preston

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