title: Defining a standard set of patient-centred outcomes for lung cancer.
abstract: In lung cancer, outcome measurement has been mostly limited to survival. Proper assessment of the value of lung cancer treatments, and the performance of institutions delivering care, requires more comprehensive measurement of standardised outcomes.The International Consortium for Health Outcomes Measurement convened an international, multidisciplinary working group of patient representatives, medical oncologists, surgeons, radiation oncologists, pulmonologists, palliative care specialists, registry experts and specialist nurses to review existing data and practices. Using a modified Delphi method, the group developed a consensus recommendation ("the set") on the outcomes most essential to track for patients with lung cancer, along with baseline demographic, clinical and tumour characteristics (case-mix variables) for risk adjustment.The set applies to patients diagnosed with nonsmall cell lung cancer and small cell lung cancer. Our working group recommends the collection of the following outcomes: survival, complications during or within 6 months of treatment and patient-reported domains of health-related quality of life including pain, fatigue, cough and dyspnoea. Case-mix variables were defined to improve interpretation of comparisons.We defined an international consensus recommendation of the most important outcomes for lung cancer patients, along with relevant case-mix variables, and are working to support adoption and reporting of these measures globally.
authors.affiliation: International Consortium for Health Outcomes Measurement, Cambridge, MA, USA Harvard Radiation Oncology Program, Boston, MA, USA Boston Medical Center, Dept of Radiation Oncology, Boston, MA, USA Both authors contributed equally.
authors.forename: Kimberley S
authors.identifier: 0000-0002-7388-5124
authors.initials: KS
authors.lastname: Mak
authors.affiliation: International Consortium for Health Outcomes Measurement, Cambridge, MA, USA Dutch Institute for Clinical Auditing, Leiden, The Netherlands Both authors contributed equally.
authors.forename: Annelotte C M
authors.initials: AC
authors.lastname: van Bommel
authors.affiliation: International Consortium for Health Outcomes Measurement, Cambridge, MA, USA.
authors.forename: Caleb
authors.initials: C
authors.lastname: Stowell
authors.affiliation: Dept of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA.
authors.forename: Janet L
authors.initials: JL
authors.lastname: Abrahm
authors.affiliation: Patient representative, Manchester, UK.
authors.forename: Matthew
authors.initials: M
authors.lastname: Baker
authors.affiliation: Dept of Medical Oncology, Clínicas Oncológicas Integradas, Rio de Janeiro, Brazil.
authors.forename: Clarissa S
authors.initials: CS
authors.lastname: Baldotto
authors.affiliation: Dept of Respiratory Medicine, Nottingham University Hospitals, Nottingham, UK.
authors.forename: David R
authors.initials: DR
authors.lastname: Baldwin
authors.affiliation: Dept of Thoracic Oncology, Edinburgh Cancer Research Centre, Edinburgh, UK.
authors.forename: Diana
authors.initials: D
authors.lastname: Borthwick
authors.affiliation: Dept of Medical Oncology, Ohio State University Comprehensive Cancer Center, Columbus, OH, USA.
authors.forename: David P
authors.initials: DP
authors.lastname: Carbone
authors.affiliation: Dept of Radiation Oncology, Dana-Farber/Brigham and Women's Cancer Center, Boston, MA, USA.
authors.forename: Aileen B
authors.initials: AB
authors.lastname: Chen
authors.affiliation: Roy Castle Lung Cancer Foundation, Liverpool, UK.
authors.forename: Jesme
authors.initials: J
authors.lastname: Fox
authors.affiliation: Patient representative, Glasgow, UK.
authors.forename: Tom
authors.initials: T
authors.lastname: Haswell
authors.affiliation: Dept of Medical Oncology and Therapeutics Research, City of Hope National Medical Center, Duarte, CA, USA.
authors.forename: Marianna
authors.initials: M
authors.lastname: Koczywas
authors.affiliation: Dept of Thoracic Surgery, University of Virginia Health System, Charlottesville, VA, USA.
authors.forename: Benjamin D
authors.initials: BD
authors.lastname: Kozower
authors.affiliation: Dept of Thoracic and Cardiovascular Surgery, MD Anderson Cancer Center, Houston, TX, USA.
authors.forename: Reza J
authors.initials: RJ
authors.lastname: Mehran
authors.affiliation: Dept of Pulmonology, St Antonius Hospital, Nieuwegein, The Netherlands.
authors.forename: Franz M
authors.initials: FM
authors.lastname: Schramel
authors.affiliation: Dept of Radiation Oncology, VU University Medical Centre, Amsterdam, The Netherlands.
authors.forename: Suresh
authors.initials: S
authors.lastname: Senan
authors.affiliation: Dept of Allergy Immunology and Respiratory Medicine, Alfred Hospital, Monash University, Melbourne, Australia.
authors.forename: Robert G
authors.initials: RG
authors.lastname: Stirling
authors.affiliation: Dept of Thoracic Oncology, Antwerp University Hospital, Edegem, Belgium.
authors.forename: Jan P
authors.initials: JP
authors.lastname: van Meerbeeck
authors.affiliation: Dept of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands Scientific Bureau, Dutch Institute for Clinical Auditing, Leiden, The Netherlands.
authors.forename: Michel W J M
authors.initials: MW
authors.lastname: Wouters
authors.affiliation: Dept of Respiratory Medicine, University Hospitals of Leicester, Leicester, UK National Cancer Registration and Analysis Service (NCRAS), Public Health England, London, UK mick.peake@uhl-tr.nhs.uk.
authors.forename: Michael D
authors.initials: MD
authors.lastname: Peake
mesh_terms: D002289:Carcinoma, Non-Small-Cell Lung / Q000523:psychology / Q000628:therapy*; D032921:Consensus; D003371:Cough / Q000175:diagnosis; D004417:Dyspnea / Q000175:diagnosis; D005221:Fatigue / Q000175:diagnosis; D006801:Humans; D033183:Interdisciplinary Communication; D007391:International Cooperation; D008175:Lung Neoplasms / Q000523:psychology / Q000628:therapy*; D008495:Medical Oncology / Q000458:organization & administration / Q000592:standards*; D017063:Outcome Assessment, Health Care; D010147:Pain Measurement; D018802:Patient-Centered Care; D015272:Pulmonary Medicine / Q000458:organization & administration / Q000592:standards*; D011788:Quality of Life; D012042:Registries; D016896:Treatment Outcome