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.

Health Outcomes for Definite Concurrent Chemoradiation in Locally Advanced Non-Small Cell Lung Cancer: A Prospective Study

“…Proper assessment of the value-based performance of healthcare institutions does require a more comprehensive measurement of standardized outcomes besides survival alone. Both the disease and treatment itself can lead to symptoms with profound effects on physical, social and emotional functioning [7]. This is especially the case for patients receiving concurrent chemoradiation.…”

“…At the time we designed the study, there was no internationally validated standard set of indicators available, which changed recently by the virtue of the international consortium of health outcome measurement (ICHOM) [7, 9]. Quality of care measurements should cover the whole cycle of care encompassing (1) therapy effectiveness, (2) complications as well as (3) patient-reported outcomes (PROs) over time and (4) quality of death.…”

Patients reported outcomes in thoracic surgery

“…As without a comprehensive outcome measurement, it is hard to know which change can makes the difference, the International Consortium for Health Outcomes Measurement (ICHOM) has identified a core set of outcomes and related case-mix variables that can be collected for lung cancer patients in routine clinical practice internationally (14). These recommendations reflect the opinion of a selected group of experts and patient representatives around the world and will help our speciality in implementing PROMs in clinical practice.…”

Lung Cancer Management: where are we in 2017?

“…3). Each variable was associated to a score and patients were then stratified into three risk groups with a monotonic increase: low (≤ 25 points), intermediate (26)(27)(28)(29) and high (≥ 30) risk groups, with an incidence of 2.0, 8.9 and 19.2%, respectively.…”

“…Through a modified Delphi method, Mak et al 26 defined an international consensus recommendation of the most important outcomes for lung cancer patients, including time from diagnosis to treatment, acute and major complications of treatment, quality of life, survival and cause of death and finally, quality of death (duration of time spent in hospital at end of life, and where patient died). This set of recommendations must now be validated and implemented in a pilot study.…”