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Comparing functional decline and distress from symptoms in people with thoracic life-limiting illnesses: lung cancers and non-malignant end-stage respiratory diseases
  1. Matilda Barnes-Harris1,
  2. Samuel Allingham2,
  3. Deidre Morgan3,
  4. Diana Ferreira3,
  5. Miriam J Johnson1,4,
  6. Kathy Eagar2,
  7. David Currow4,5
  1. 1Hull York Medical School, University of Hull, Hull, England
  2. 2Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia
  3. 3Research Centre for Palliative Care, Death and Dying, Flinders University, Adelaide, South Australia, Australia
  4. 4Wolfson Palliative Care Research Centre, University of Hull, Hull, England
  5. 5IMPACCT, University of Technology Sydney, Sydney, New South Wales, Australia
  1. Correspondence to Professor David Currow, Faculty of Heath, University of Technology Sydney, Sydney, NSW 2007, Australia; david.currow{at}


Background Malignant and non-malignant respiratory diseases account for >4.6 million deaths annually worldwide. Despite similar symptom burdens, serious inequities in access to palliative care persists for people with non-malignant respiratory diseases.

Aim To compare functional decline and symptom distress in advanced malignant and non-malignant lung diseases using consecutive, routinely collected, point-of-care national data.

Setting/participants The Australian national Palliative Care Outcomes Collaboration collects functional status (Australia-modified Karnofsky Performance Status (AKPS)) and symptom distress (patient-reported 0–10 numerical rating scale) in inpatient and community settings. Five years of data used Joinpoint and weighted scatterplot smoothing.

Results In lung cancers (89 904 observations; 18 586 patients) and non-malignant end-stage respiratory diseases (14 827 observations; 4279 patients), age at death was significantly lower in people with lung cancer (73 years; IQR 65–81) than non-malignant end-stage respiratory diseases (81 years; IQR 73–87 years; p<0.001). Four months before death, median AKPS was 40 in lung cancers and 30 in non-malignant end-stage respiratory diseases (p<0.001). Functional decline was similar in the two groups and accelerated in the last month of life. People with non-malignant diseases accessed palliative care later.

Pain-related distress was greater with cancer and breathing-related distress with non-malignant disease. Breathing-related distress increased towards death in malignant, but decreased in non-malignant disease. Distress from fatigue and poor sleep were similar for both.

Conclusions In this large dataset unlike previous datasets, the pattern of functional decline was similar as was overall symptom burden. Timely access to palliative care should be based on needs not diagnoses.

  • lung cancer
  • COPD pathology

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  • Contributors All authors made a substantial contribution to the concept or design of the work; or acquisition, analysis or interpretation of data. All authors drafted the article or revised it critically for important intellectual content. All authors approved the version to be published. All authors have participated sufficiently in the work to take public responsibility for appropriate portions of the content.

  • Funding Australian Government Department of Health funds PCOC which is a national palliative care project.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval Analysis and reporting of anonymised data collected as part of the PCOC programme were approved by the Human Research Ethics Committee of the University of Wollongong (approval ID: HE2006/045).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available upon reasonable request. All data are available to bona fide researchers through the Australian national Palliative Care Outcomes Collaboration through their standard operating procedure.

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