CN23 - Understand the patients’ perspectives based on their profile to improve health-related quality of life assessment in breast cancer

Background

Patient-Reported-Outcomes (PRO) are widely used to measure patients’ perspectives and support health product development, and their selection is a critical step of this process. As breast cancer (BC) profile and other medical or socio-demographic factors can influence patients’ treatment choice, quality-of-life (QoL) and global patient journey, they could also impact patients’ expectations. PROs selection should thus be personalized and based on the targeted population. This research aims to provide recommendations to better adapt the PROs selection and development to the medical product or service.

Methods

A 4-step method was used, starting by a state-of-the-art to identify the PROs most frequently used to assess BC patients’ QoL and unmet needs, and list the covered outcomes. Then, organization guidelines and experts’ recommendations were reviewed to complete the initial outcomes list. The next step was to conduct a direct-to-patient survey to generate new data on the most important outcomes for BC patients.

Results

The literature review showed that some outcomes are well covered by existing PROs: QoL, survival vs QoL considerations and healthcare pathway satisfaction. On the other hand, some outcomes are partially covered (copying strategies), and others are not covered (unmet needs, burden of disease). Moreover, experts’ groups recommended to consider several profile attributes QoL in BC context (cancer stage, treatment strategy, complementary care, etc.¹). Then, a direct-to-patient online survey was launched in several countries among the BC Carenity patient communities (objective: 300 respondents, results available in Sept 2023 ). It contains socio-demographic and medical questions, and questions aiming at ranking the previous outcomes and identifying other non-covered outcomes. Needs and expectations will be analyzed according to BC patients’ profile.

Conclusions

The survey will provide a list of the most important outcomes for BC patients based on their profile. Then, a gap analysis will compare these results to experts’ recommendations and PROs commonly used. These results could be used to improve PRO selection and orientate future investigations on BC patients’ QoL assessments.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

Carenity, Else Care.

Funding

Has not received any funding.

Disclosure

All authors have declared no conflicts of interest.