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Clinical trial drop out and non adherence to standard of care regimens are persistent concerns for clinical teams. Informal caregiver support for patients is a critical but often exhausting and under appreciated role. Informal caregivers often don't know what symptoms to monitor and the stress of their situation can result in patient drop out in clinical trials or poor adherence to standard of care regimens. TOGETHERCare provides caregivers with critical symptoms to monitor leading many to report reduction of stress and feeling better informed on what symptoms matter with a clear role to enhance clinical care and communicate more rapidly with clinical teams. TOGETHERCare is a novel tool to help fill the clinical trial and non adherence care gap.
Caregivers are often forgotten teammates in clinical trials and during standard care. Even when they are included, directions and expectations can be unclear or misaligned. TOGETHERCare is unique it that it provides specific directions and expectations along with key resources, maintains function no matter the location of the patient and caregiver, and can be rapidly tailored to any condition. It operates using a smartphone (Android or iOS) which are rapidly becoming ubiquitous around the globe. It is an inexpensive scalable solution to improve adherence, reduce stress and ultimately result in better patient outcomes.
We developed TOGETHERCare, in part, with SBIR NCI funding through HHS. We worked with Stanford and Duke oncology based clinical teams to collect stakeholder (patient, caregiver, clinician) needs before and during testing and iterative versions. We then tested a refined product in an IRB approved (KPNC) study with 50 dyads - caregiver and patient at Kaiser Permanente Northern California. Caregivers used TOGETHERCare for 28 days and reported specific eObsROs during that time period. The data was analyzed and reported in an abstract at ASCO in June of 2022. Neeman E, Yunis R, Kubo A, Aghaee S, Shieh J, Veuthey TL, Fonda SJ, Liu R, Oakley-Girvan I. Patients with cancer symptom and physical function reporting by caregivers as predictors of adverse clinical outcomes. J of Clin Oncol. DOI:10.1200/JCO.2022.40.16_suppl.12026 June 2, 2022