Optimizing patient engagement in reporting outcomes among women with metastatic breast cancer

Goal: A patient-centered approach to metastatic breast cancer (MBC) requires treatment that is supported by medical evidence, and tailored to patients’ needs. Unfortunately, patient reported outcomes (PROs), which facilitate decision making and treatment evaluation, are usually absent from medical records. Although PROs are sometimes captured in research settings, their collection in routine clinical care is suboptimal. Thus, providers cannot optimally manage MBC without access to quality of life and PROs for patients undergoing treatment. To address this critical gap, we propose to develop a new approach to integrating the collection of PROs into clinical care, and creating a new tool for improving patient engagement, called “My PROfile”.

Target population: Patients with MBC receiving treatment at Smilow Cancer Hospital.

Methods: We propose a mixed methods research study that employs both qualitative and quantitative approaches. In Phase I, we will conduct focus groups and interviews to collect and analyze qualitative data on optimal PRO collection and sharing formats. Phase II will focus on the development of a patient “My PROfile” tool based on results from Phase I, and then piloting this tool using a sample of women with MBC.

Assessment: In Phase I we will analyze qualitative data from patients to select appropriate PRO instruments and construct My PROfile. We will also elicit feedback from medical oncologists to finalize the platform. In Phase II, we will assess the feasibility of incorporating My PROfile into clinical practice, measure questionnaire completion, patient satisfaction, and conducting a medical record review to assess documentation of PROs.