Measuring patient outcomes is recognised as an important step in improving healthcare. However, collecting clinically-relevant, longitudinal outcome data from patients present clinical, logistical, IT and financial challenges. One way to systematically collect longitudinal health-related, patient-reported outcome data is to use a clinical quality registry framework (PRO Registry).
This study has two components; 1) develop a PRO Registry framework for collecting data, and 2) pilot test and evaluate the feasibility of collecting of PRO’s with a defined cohort of lung cancer patients at the Peter Mac.
Study participants and data collection
Patients referred to and planned to commence chemo-radiation at the Peter Mac will be eligible to participate in the study. A consecutive sample will be recruited over a 12-month period for the pilot testing. Patients will be invited to complete a suite of validated measures at baseline, 2, 6 and 12 months. Measures include the EORTC-QLQ-C30 and the lung cancer specific module QLQC-LC-13). At baseline, patients will also be invited to complete four social isolation questions drawn from the PROMIS data set. Semi-structured interviews will be undertaken with 10 patients about their views of the questionnaire and data collection processes at four months after recruitment.
Staff involved in the development or pilot testing of the PRO Registry will also be invited to take part in semi-structured interviews to offer their feedback on the feasibility and potential contribution of the PRO data to clinical management.
The PRO Registry framework has been developed and data collection commenced in July 2016.
Protocol Paper - Paper.pdf
Sponsor
Peter MacCallum Cancer Centre
Funding
Tied donation to the Peter MacCallum Foundation
Principal Investigator/s
A/Prof Karla Gough
Contact details
A/Prof Karla Gough
Senior Research Fellow, Cancer Experiences Research
Honorary Principal Fellow, Department of Nursing, University of Melbourne
Email: [email protected]
