2130P - ATTITUDE - ATTrition In longiTUDinal studiEs of cancer survivors (CS): Can we improve the experience of patients (pts)?

Background

Dropout is common in longitudinal studies and generates attrition bias. ATTITUDE uses a mixed, multistep methodology to reduce attrition, building on the CANTO cohort (NCT01993498, collecting clinical and patient-reported outcome measures [PROMs] for 5 years post breast cancer [BC] treatment). In Step 1, we had found that 16.2% of pts who were still on study at year-4 did not attend at all the CANTO visit and 33.1% did not respond to any PROMs. Here we present results of Step 2, gathering key stakeholders’ input about participation to longitudinal studies.

Methods

A multidisciplinary group of oncologists, sociologists, patient engagement experts and advocates co-developed a 28-item survey. The survey addressed CS and citizens within the Seintinelles platform for collaborative cancer research and was open to completion for 4 weeks. Descriptive analyses were performed.

Results

There were 1834 respondents, 733 CS (84.0% of BC) and 1101 citizens without history of cancer: 95.3% were female, 58.2% were 40-65 years old, 87.4% had ≥ high school degree. Among CS, 58.4% had previously participated in a longitudinal study: 85.0% felt to have received adequate information prior to enrollment and 99.5% would participate again in the same or a similar study. Overall, motivation for participation included desire to support the research team (92.8%), to help (other) pts (49.8%), and to improve one’s own cancer management (20.1%). Facilitators to participation included option to use digital platforms (96.1%), home-based data collection (95.0%), flexible study visit schedule (77.5%), obtaining individual explanations regarding study procedures by phone (56.6%), and receiving reminders to complete PROMs (56.9%). Responses were consistent between CS and citizens.

Conclusions

Actionable interventional components to reduce attrition in longitudinal studies that emerged from this survey include implementation of decentralized, digital data collection tools such as e-PROMs, flexible study visit schedule, and study navigators. The present survey, complemented with additional input from ongoing qualitative explorations, will inform the co-design and piloting of tailored interventions to minimize attrition in Step 3 of ATTITUDE.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

The authors.

Funding

Institut National du Cancer (INCa): Projets libres de recherche sur le cancer en Sciences Humaines et Sociales, Epidémiologie et Santé Publique (INCA_15864).

Disclosure

M.A. Franzoi: Other, Research Funding (Institution): Resilience Care. M. Pagliuca: Other, Traver expenses (June 2022): Gilead. I.V. Vaz Luis: Financial Interests, Personal, Other, Honoraria: Sandoz, Amgen, AstraZeneca, Pfizer, Novartis; Financial Interests, Personal and Institutional, Research Funding: Resilience Care. A. Di Meglio: Financial Interests, Personal, Advisory Board: Kephren, Medycis, Techspert. All other authors have declared no conflicts of interest.