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Feasibility of an Online Patient Community to Support Older Women With Newly Diagnosed Breast Cancer

      Abstract

      Background

      We conducted a feasibility study of integrating a free, online patient health community, PatientsLikeMe (PLM), into the neo/adjuvant care of older patients recently diagnosed with breast cancer. We assessed whether PLM was an appealing social forum to improve women's treatment experience during this stressful and often isolating time.

      Patients and Methods

      We enrolled women ages 60 years with recently diagnosed nonmetastatic invasive breast cancer at a single center. Our primary endpoint was feasibility of patient engagement with PLM, with successful engagement defined as using PLM for 50% of the total weeks of one's chemotherapy course or 4 months (if receiving hormonal and/or radiation therapy). Participants were surveyed about their health, social support, and experiences.

      Results

      During February 8, 2016 to June 25, 2018, 47 women enrolled; 14.9% were ages 71 to 75 years and 8.5% were ages 76 years; 63.8% received chemotherapy. Two women withdrew after consent; 45 were included in analyses. Overall, 1 (2.2%) patient met the feasibility endpoint, although 8 (17.8%) met engagement criteria for ≥25% of weeks on study. Over time, women submitted a total of >1200 posts to the “InstantMe” feature (rates how they feel) and >130 “MyFeed” stories. Evaluation of satisfaction with PLM was limited by the small number of end-of-study surveys.

      Conclusion

      Although our online social support intervention did not meet the prespecified criteria for feasibility (required sustained PLM utilization), many engaged with PLM. Future interventions should explore ways we can optimally support older patients, who have an increasing access to technology while facing threats of social isolation.

      Keywords

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