Develop an over-arching core set of PROMs for effective capture and standardization of symptoms and toxicity data from treatment through survivor-ship that will allow cross-population comparison studies.
Will ensure all PROMs are routinely implemented and established within the PROMS Cancer Core framework (meaningful, feasible, valid and actionable for evaluation).
- Implementation of PROMs for sexual function after treatment and identification of core sexuality items to be measured.
- Skin toxicities.
- Systemic chemo toxicities.
Develop a core set of outcomes to measure treatment toxicity and symptom assessment.
Identify pharmaco- and radio-genomic markers of interest.
- Pilot studies in thoracic, head and neck, pancreas and prostate sites, linking blood samples for generic and biomarker testing with disease specific PROMs and quality of life assessments linked to other symptom data.
- A biomarker study from DART patients.
- Comparison between self-reported and physician-reported performance status across sites.
- Pilot studies to examine a more comprehensive symptom capture across populations as well as disease specific symptoms and functional performance.
Radiation and Surgical Oncology
Develop a core set of outcomes applicable routinely to compare new radiation and surgical technologies, treatments and therapy impact.
- Pen and paper pilot feasibility study of the Thoracic Symptom Self-Assessment Tool (TSSAT), a PROM based on the Common Toxicity Criteria of Adverse Events (CTCAE).
- Head and Neck Site: Electronic implementation of MDASI-HN and FACT-HN.
- Esophageal Site: Pen and paper implementation of EORTC QLQ OES-18, FACT-E and select MDASI-GI for scale comparison and feasibility testing.
Health Services Research
Develop a core set of instruments that capture individual billing and prescribing data along with patient reported outcomes.
- Linkage between ESAS and cancer registry data for examining symptom severity patterns and predictors across cancer populations.
- Pilot study of a health preference values questionnaire (EQ5D) measuring cost of quality, mortality, morbidity and quality-adjusted life years (QALY), to be standardly collected across disease sites and at every stage of the disease.
Palliative and Supportive Care
Develop a core set of outcomes to approach physical and psycho-social distress.
Enhance the understanding of different factors affecting quality of life.
- Linking existing ESAS and DART studies to other cross-cutting PROM tools.
- Measuring distress in pancreatic patients.