Defining a standard set of patient-centred outcomes for lung cancer

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. #ICHOM Lung Cancer Standard Set of patient-centred outcomes: aligning global efforts to improve lung cancer care http://ow.ly/bFDR300EhY7

[1]  C. Chouaid,et al.  Delays for diagnosis and treatment of lung cancers: a systematic review , 2016, The clinical respiratory journal.

[2]  P. Hammerman,et al.  Non-small-cell lung cancers: a heterogeneous set of diseases , 2015, Nature Reviews Cancer.

[3]  David Cella,et al.  The Role of Technical Advances in the Adoption and Integration of Patient-reported Outcomes in Clinical Care , 2015, Medical care.

[4]  T. Pawlik,et al.  What are patients' expectations about the effects of chemotherapy for advanced cancer? , 2014, Journal of the American College of Surgeons.

[5]  Sendurai A Mani,et al.  Tumor Cell Heterogeneity in Small Cell Lung Cancer (SCLC): Phenotypical and Functional Differences Associated with Epithelial-Mesenchymal Transition (EMT) and DNA Methylation Changes , 2014, PloS one.

[6]  M. Taphoorn,et al.  Does change in health-related quality of life score predict survival? Analysis of EORTC 08975 lung cancer trial , 2014, British Journal of Cancer.

[7]  R. Doebele,et al.  Targeted therapies in non-small cell lung cancer: emerging oncogene targets following the success of epidermal growth factor receptor. , 2014, Seminars in oncology.

[8]  R. Berenson,et al.  Grading a physician's value--the misapplication of performance measurement. , 2013, The New England journal of medicine.

[9]  David Forman,et al.  Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System , 2013, Journal of medical Internet research.

[10]  M. van der Woude,et al.  Perception by family members and ICU staff of the quality of dying and death in the ICU: a prospective multicenter study in The Netherlands. , 2013, Chest.

[11]  Martin White,et al.  Socioeconomic Inequalities in Lung Cancer Treatment: Systematic Review and Meta-Analysis , 2013, PLoS medicine.

[12]  M. Holmes-Rovner,et al.  Do self-report and medical record comorbidity data predict longitudinal functional capacity and quality of life health outcomes similarly? , 2012, BMC Health Services Research.

[13]  M. Clark,et al.  Relationship between deficits in overall quality of life and non-small-cell lung cancer survival. , 2012, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[14]  D. Osoba,et al.  Minimal important differences for interpreting health-related quality of life scores from the EORTC QLQ-C30 in lung cancer patients participating in randomized controlled trials , 2011, Supportive Care in Cancer.

[15]  M. Schneider-Kolsky,et al.  High rates of tumor growth and disease progression detected on serial pretreatment fluorodeoxyglucose‐positron emission tomography/computed tomography scans in radical radiotherapy candidates with nonsmall cell lung cancer , 2010, Cancer.

[16]  Alona Muzikansky,et al.  Early palliative care for patients with metastatic non-small-cell lung cancer. , 2010, The New England journal of medicine.

[17]  Bernhard Holzner,et al.  Development of computerised adaptive testing (CAT) for the EORTC QLQ-C30 dimensions - general approach and initial results for physical functioning. , 2010, European journal of cancer.

[18]  Boris Freidlin,et al.  Proposal for the use of progression-free survival in unblinded randomized trials. , 2007, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[19]  M. Metzler,et al.  Socioeconomic status in health research: one size does not fit all. , 2005, JAMA.

[20]  Roger L. Brown,et al.  Patient preferences in choosing chemotherapy regimens for advanced non-small cell lung cancer. , 2005, The journal of supportive oncology.

[21]  N. Demartines,et al.  Classification of Surgical Complications: A New Proposal With Evaluation in a Cohort of 6336 Patients and Results of a Survey , 2004, Annals of Surgery.

[22]  C. Earle,et al.  Trends in the aggressiveness of cancer care near the end of life. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[23]  M. Liang,et al.  The Self-Administered Comorbidity Questionnaire: a new method to assess comorbidity for clinical and health services research. , 2003, Arthritis and rheumatism.

[24]  H. Welch,et al.  Preferences for chemotherapy in patients with advanced non-small cell lung cancer: descriptive study based on scripted interviews , 1998, BMJ.

[25]  D. Osoba,et al.  The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. , 1993, Journal of the National Cancer Institute.

[26]  K E Stanley,et al.  Prognostic factors for survival in patients with inoperable lung cancer. , 1980, Journal of the National Cancer Institute.

[27]  Liquid Biopsies Non-small-cell lung cancer , 2015, Nature Reviews Disease Primers.

[28]  M. Coleman,et al.  Cancer survival in Europe 1999-2007 by country and age: results of EUROCARE--5-a population-based study. , 2014, The Lancet. Oncology.

[29]  J. Bjorner,et al.  Standardization of depression measurement: a common metric was developed for 11 self-report depression measures. , 2014, Journal of clinical epidemiology.

[30]  A. Jemal,et al.  Cancer statistics, 2014 , 2014, CA: a cancer journal for clinicians.

[31]  Jacques Ferlay,et al.  GLOBOCAN 2012: Estimated cancer incidence, mortality and prevalence worldwide in 2012 , 2013 .

[32]  A. Persson,et al.  Applying Motivation Theory to Achieve Increased Response Rates , Respondent Satisfaction and Data Quality , 2011 .

[33]  Marika Wenemark,et al.  Applying Motivation Theory to Achieve Increased Respondent Satisfaction, Response Rate and Data Quality in a Self-administered Survey , 2011 .

[34]  P. Fayers,et al.  The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. , 2006, European journal of cancer.

[35]  Scientific International Standard Classification of Education, ISCED 1997 , 2003 .

[36]  C. Gridelli,et al.  Quality of life in lung cancer patients. , 2001, Annals of oncology : official journal of the European Society for Medical Oncology.

[37]  S. Kaasa,et al.  The EORTC QLQ-LC13: a modular supplement to the EORTC Core Quality of Life Questionnaire (QLQ-C30) for use in lung cancer clinical trials. EORTC Study Group on Quality of Life. , 1994, European journal of cancer.

[38]  N. Dubrawsky Cancer statistics , 1989, CA: a cancer journal for clinicians.