Abstract P6-12-09: My PROfile: A web-based tool to assess patient reported outcomes (PROs) in women with metastatic breast cancer (MBC): Preliminary results
Authors: Mougalian Sarah , Canavan Maureen , Capasso Renee , Aminawung Jenerius , Presley Carolyn J. , Gross Cary P 
Published: March 2020

Abstract
Introduction: An emphasis on patient-centered care has led to a growing interest in collecting PROs in cancer care. Our prior work has demonstrated substantial variation in what types of PROs patients deem most important; although physical symptoms are common, a substantial minority of patients report concerns in non-physical symptom (non-PSx) domains, such as emotional or social health, practical or financial problems, and daily functional activity. Here we report initial findings from a pilot study of a secure web-based tool, called My PROfile, which addresses not only individual symptoms but also non-PSx domains.
Methods: We enrolled women who had started a treatment regimen for MBC within the past 6 weeks at Smilow Cancer Hospital of Yale New Haven Hospital or an affiliated care center. Using My PROfile, participants responded to validated surveys and provided PROs addressing physical symptoms as well as non-PSx domains including practical problems, social well-being, emotional well-being, spiritual or religious concerns, alcohol and drug use, daily activities and any other areas of difficulties experienced within the past week. Patients also ranked their top 3 concerns at the time of My PROfile completion. Patients were followed prospectively for 6 months and asked to complete My PROfile as often as desired during that time frame, but at least once prior to each visit with their provider. This information was compiled into a report that was shared with their medical oncology provider prior to the clinic visit. For this analysis, we analyzed the frequency of reporting individual symptoms and domains by patient.
Results: A total of 28 patients consented to participate. At the time of data analysis, 9 patients had completed all six months of the pilot. Across the different PRO domains, the majority of patients reported difficulties with physical symptoms (68%) or emotional well-being (50%). Overall, 21% of patients reported physical symptoms only, and 46% of patients reported difficulties with both physical symptoms and non-PSx domains; however, 32% of patients reported difficulties from non-PSx domains only. Approximately 29% of patients reported practical problems (including 21% who noted the impact of treatment on diet/activity and 14% who had concerns about monitoring diet and activity in general). Difficulties with daily activities were reported in 29% of patients (with 18% reporting housework and walking specifically). Difficulties in social well-being were reported by 18% of patients, including 11% who specifically reported concerns with family health. The PRO domain reported by the fewest number of patients (n=1) was alcohol and drug use. The three most common individual symptoms reported were fatigue (57% of patients), pain (54% of patients), and worry (36% of patients).
Nearly half (47%) of our respondents (13 out of 28) used My PROfile at least 3 times during follow-up. Among these patients, all but 1 patient reported difficulties with physical symptoms at least twice. Additionally, 23% of these patients reported the non-PSx domains of practical concerns and daily activity concerns more than once during the follow-up period.
Conclusion: Although physical and mental health symptoms are commonly reported among patients undergoing systemic treatment for metastatic breast cancer, a substantial minority of patients report non-physical symptom concerns including practical and daily activity-based challenges. Because the specific concerns of interest vary substantially across patients, tools to collect PROs should include additional domains that can significantly affect quality of life in women with MBC.
Citation Format: Sarah Mougalian, Maureen Canavan, Renee Capasso, Jenerius Aminawung, Carolyn J. Presley, Cary P Gross. My PROfile: A web-based tool to assess patient reported outcomes (PROs) in women with metastatic breast cancer (MBC): Preliminary results [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P6-12-09.