REPORT ON LUNG CANCER IN AUSTRALIA LITERATURE REVIEW AND CONSULTATION ON FACTORS IMPACTING ON LUNG CANCER OUTCOMES This project is an initiative of Cancer Australia’s National Lung Cancer Program funded by the Australian Government. The report was prepared by Curtin University. Report on Lung Cancer in Australia. Literature review and consultation on factors impacting on lung cancer outcomes ISBN: 978-1-74241-375-4 Online ISBN: 978-1-74241-376-1 Publications Number: D0161 Copyright Statements: Paper-based publications © Commonwealth of Australia 2011 This work is copyright. Apart from any use as permitted under the Copyright Act 1968, no part may be reproduced by any process without prior written permission from the Commonwealth. Requests and inquiries concerning reproduction and rights should be addressed to the Commonwealth Copyright Administration, Attorney-General’s Department, Robert Garran Offices, National Circuit, Barton ACT 2600 or posted at http://www.ag.gov.au/cca Internet sites © Commonwealth of Australia 2011 This work is copyright. You may download, display, print and reproduce this material in unaltered form only (retaining this notice) for your personal, non-commercial use or use within your organisation. Apart from any use as permitted under the Copyright Act 1968, all other rights are reserved. Requests and inquiries concerning reproduction and rights should be addressed to Commonwealth Copyright Administration, Attorney-General’s Department, Robert Garran Offices, National Circuit, Barton ACT 2600 or posted at http://www.ag.gov.au/cca PROJECT TEAM Curtin University Project Team Professor Moyez Jiwa Professor Patricia Davidson Ms Sarah McGrath Dr Phillip Newton Dr Michelle DiGiacomo Dr Wendy Chan She Ping Delfos Ms Louise Hadfield Professor Alexandra McManus Professor Sandra Thompson Collaborators Professor Michael Dooley Dr Georgia Halkett Professor Ian Hammond Professor Mark Harris Dr Shane Pascoe Dr Martin Phillips Mr John Stubbs Professor Robin Watts Literature review and national consultation on factors impacting on lung cancer outcomes | i TABLE OF CONTENTS Project team i List of Tables v List of Figures v Appendices v Abbreviations vi Glossary vii Executive Summary x Patient factors x Provider factors xi System factors xi 1. Context 1 2. Objectives 2 3. Implications 3 3.1 Patient 3 3.2 Provider 4 3.3 Systems issues 4 3.4 Priority areas to decrease variations in lung cancer management in Australia 5 3.5 Initiatives in the short, medium and longer term 6 4. Approach 7 4.1 Literature review 7 4.2 Consultation phase 7 4.2.1 Expert Consultations 8 4.2.2 Consultation Round 1 8 4.2.3 Consultation Round 2 8 5. Results 9 5.1 Burden of disease 9 5.2 Guidelines 10 5.3 Practice 10 5.4 Research 11 5.5 Findings of Consultation Round 1 and Consultation Round 2 12 Literature review and national consultation on factors impacting on lung cancer outcomes | iii 5.5.1 Waiting times and access to treatments 12 5.5.2 Access to care 13 5.6 Priority areas for Guidance Material 17 5.6.1 Clinical guidance material 17 5.7 National studies 17 5.7.1 Patient factors 17 5.7.2 Provider factors 17 5.7.3 Systems issues 17 5.8 International studies 18 5.8.1 Patient factors 18 5.8.2 Provider factors 18 5.8.3 System issues 18 5.9 Data quality 18 5.10 Diagnostic and treatment data 19 5.11 Aboriginal Australians/other Australians and urban/rural comparisons 19 5.11.1 Priority areas for guidance material 21 5.11.2 Patient, provider and systems issues 21 5.12 Summary of review of evidence and consultation methods 21 5.13 Recommendations for guidance material and further research 21 5.13.1 Clinical guidance material 22 5.13.2 Research 22 5.14 Conclusions 22 References 23 iv | Report on lung cancer in Australia List of Tables Table 1: Strategies to decrease variation in lung cancer outcomes 5 Table 2: Views on referral for investigation, diagnosis and management of lung cancer 13 Table 3: Participants’ views on clinical environment 14 Table 4: Relative survival by region, lung cancer diagnoses in 1997–2004 21 List of Figures Figure 1: Factors impacting on diagnosis 15 Figure 2: Participants that should be included in the multidisciplinary team 16 Figure 3: Information to be included in guidance material 16 Appendices Appendix 1: Literature Review Search Strategies 29 Appendix 2: Existing clinical guidelines 30 Appendix 3: Australian Data 34 Appendix 4: Survey 1 and Survey 2 38 Appendix 5: Consultation Round 1 Results 62 Appendix 6: Consultation Round 2 Results 81 Appendix 7: Thematic Analysis from Expert Participants 109 Appendix 8: References 111 Literature review and national consultation on factors impacting on lung cancer outcomes | v Abbreviations ABS Australian Bureau of Statistics ACT Australian Capital Territory AIHW Australian Institute of Health and Welfare CHD Coronary heart disease CHF Chronic heart failure COPD Chronic obstructive pulmonary disease EBUS Endobronchial ultrasound EPs Expert participants GP General Practitioner MDT Multidisciplinary Team NHMRC National Health and Medical Research Council NSW New South Wales NT Northern Territory Qld Queensland SES Socioeconomic status SA South Australia SPs Survey Participants Tas Tasmania UK United Kingdom USA United States of America Vic Victoria WA Western Australia vi | Report on lung cancer in Australia GLOSSARY Advanced lung cancer Cancer that has metastasised or is unlikely to be curable Biopsy A procedure to remove cells or tissues from the body for testing and examination under a microscope Bronchoscopy An examination of the inside of the windpipe, the bronchi, and/or the lungs using a lighted tube. The tube is inserted through the patient’s nose or mouth. Bronchoscopy may be used to find cancer or as part of some treatments to deliver therapeutic agents Chronic obstructive pulmonary disease A lung disease characterised by chronic obstruction of lung airflow (COPD) that interferes with normal breathing and is not fully reversible Clinical trial A research study in which patients volunteer to test new ways of screening, preventing, diagnosing, or treating a disease Clinical network Process for planning, coordination, delivery and evaluation of care in a defined clinical setting or geographical location Co-morbidity Two or more health problems at the same time Consultations Round 1 The first survey distributed via a secure online platform to identify experts’ opinions on the causes of variations in lung cancer care in Australia. Consultation Round 2 The second survey distributed via a secure online platform to identify guideline content and strategies to decrease variations in lung cancer care Computerised tomography (CT) scan A technique for constructing pictures from cross-sections of the body, by x-raying the body from many different angles Cultural competency Cultural competence in health care describes the ability of systems to provide care to patients with diverse values, beliefs and behaviours, including tailoring delivery to meet patients’ social, cultural, and linguistic needs Disability-adjusted life years (DALY) A measure used in burden of disease and injury estimates, which combines the years of life lost due to premature death (YLL) and the equivalent ‘healthy’ years of life lost due to disability or illness (YLD). One DALY represents one lost year of ‘healthy’ life. Endobronchial ultrasound (EBUS) An invasive procedure in which physicians use ultrasound devices inside the airways and the lung for exploration of the structures of airway walls, the surrounding mediastinum, and the lungs Expert Consultations Interviews that were conducted with experts in cancer care and consumers Expert Participants (EPs) Those that participated in the Expert Consultations Literature review and national consultation on factors impacting on lung cancer outcomes | vii Gender Refers to the socially constructed roles, behaviour, activities and attributes that a particular society considers appropriate for men and women. The distinct roles and behaviour may give rise to gender inequalities Health Literacy The knowledge and skills required to understand and use information relating to health issues. Local Government Area A term used in Australia (particularly by the Australian Bureau of Statistics) to refer to areas controlled by each individual Local Government Mesothelioma Pleural mesothelioma is a cancer of the membranes of the lung. The commonest cause of mesothelioma is exposure to asbestos. This project does not cover mesothelioma Magnetic Resonance Imaging (MRI) A type of body scan that uses a magnet linked to a computer to make detailed pictures of areas inside the body. An MRI can be used to find cancer Non-small cell lung cancer One of the two main groups of lung cancers. This group includes squamous cell carcinoma, adenocarcinoma, large cell carcinoma and bronchiolo-alveolar cell carcinoma Oncologist A doctor who specialises in studying and treating cancer Positron Emission Tomography (PET) In a PET scan, the patient is given radioactive glucose (sugar) scan through a vein. A scanner then tracks the glucose in the body. The scanner’s pictures can be used to find cancer, since cancer cells tend to use more sugar than other cells Primary cancer The first or original cancer Prognosis The expected course of a disease and the chances of recovery Qualitative Thematic Analysis Thematic analysis is a method for identifying, analysing and reporting patterns within qualitative material. This process allows clear identification of prominent themes, and provides an organised and structured way of dealing with the narrative data. Radiation The emission of energy in waves or particles. Often used to treat cancer cells Radiation oncologist A doctor with specialist training in treating cancer patients using radiation Risk Assessment Determination of quantitative or qualitative risk related to a situation or a recognised threat Screening Checking for disease or precursors of a disease when there are no symptoms. Since screening may find diseases at an early stage, there may be a better chance of curing the disease viii | Report on lung cancer in Australia Small cell lung cancer A type of lung cancer made up of small, round cells.