Patient organization versus hospital-based recruitment strategies for EORTC QLG studies.

This research project aims to assess the validity of hospital and patient organisation (PO) recruitment strategies by comparing their representativeness as well as accuracy of clinical data – specifically within the context of EORTC Quality of Life Group (QLG) studies (phases 1 to 4)

More specifically, this study will for the first time evaluate, in the context of the different phases of an EORTC QoL Module development, how recruitment through POs (as compared to hospital recruitment) affects:

1. Representativeness of the patient population:

a. Patient demographics and characteristics (including health literacy)

b. Patient-reported outcomes (through EORTC QLQ-C30)

c. Prioritisation of quality of life (QoL) issues from the original EORTC QLQ-C30 issue list (through qualitative interviews)

2. Recruitment metrics (e.g., response rate, time to enrolment, staff required, use of social media)

3. Accuracy of clinical data: collected from health records versus patient-reported.

The ultimate aim of this project is to guide future research and guideline development as to improve the quality and efficiency of recruitment strategies.

• Scoping review protocol complete 

• Development and dissemination of surveys to POs and QLG members  

• Scoping review complete 

• Presented at the poster session of the Health Equity in Clinical Trials Congress in Atlanta in May 2024. 

• Updating the study protocol for the cross-sectional study for submission by 30th November. 

• Getting ethical approval in place within the next few months. 

This is the first study co-designed with POs to identify how a partnership can be used to recruit patients into EORTC QLG studies. This study will for the first time evaluate the effects of different recruitment strategies (i.e. collaboration with PO versus recruitment through the hospital) on representativeness of patients (i.e. are there differences in patient demographics or outcomes?) as well as accuracy of clinical data (i.e. does the clinical data reported by the patient match the data collected from the health records?) in the context of EORTC QLG Module development studies. Findings will help us formulate guidelines on (or future research into) how to partner with POs for recruitment of patients for EORTC QLG studies.