Kristina Holmegaard Nørskov1, Dorthe Overgaard2, Jannie Boesen3, Anne Struer4, Sarah Elke Weber Due El-Azem4, Anders Tolver5, Kirsten Lomborg6,7, Lars Kjeldsen8, Mary Jarden8,9. 1. Department of Hematology, Rigshspitalet, Blegdamsvej 9, 2100, Copenhagen Ø, Denmark. Kristina.holmegaard.noerskov@regionh.dk. 2. University College Copenhagen, Tagensvej 18, 2200, Copenhagen N, Denmark. 3. Department of Hematology, Herlev Hospital, Borgmester Ib Juuls Vej 1, 2730, Herlev, Denmark. 4. Department of Hematology, Zealand University Hospital, Roskilde, Sygehusvej 10, 4000, Roskilde, Denmark. 5. Data Science Laboratory, Department of Mathematical Sciences, University of Copenhagen, Universitetsparken 5, 2200, Copenhagen N, Denmark. 6. Department of Clinical Medicine, Aarhus University, Paalle Juul-Jensens Boulevard 82, 8200, Aarhus N, Denmark. 7. Department of Clinical Research, Steno Diabetes Center Copenhagen (SDCC), Niels Steensens Vej 2, 2820, Gentofte, Denmark. 8. Department of Hematology, Rigshspitalet, Blegdamsvej 9, 2100, Copenhagen Ø, Denmark. 9. Department of Clinical Medicine, University of Copenhagen, Blegdamsvej 3B, 2200 Copenhagen N, Copenhagen, Denmark.
Abstract
PURPOSE: This study investigated the feasibility of patient ambassador support in newly diagnosed patients with acute leukemia during treatment. METHODS: A multicenter single-arm feasibility study that included patients newly diagnosed with acute leukemia (n = 36) and patient ambassadors previously treated for acute leukemia (n = 25). Prior to the intervention, all patient ambassadors attended a 6-h group training program. In the intervention, patient ambassadors provided 12 weeks of support for patients within 2 weeks of being diagnosed. Outcome measures included feasibility (primary outcome), safety, anxiety, and depression measured by the Hospital Anxiety and Depression Scale, quality of life by the Functional Assessment of Cancer Therapy-Leukemia and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and symptom burden by MD Anderson Symptom Inventory, the Patient Activation Measure, and the General Self-Efficacy Scale. RESULTS: Patient ambassador support was feasible and safe in this population. Patients and patient ambassadors reported high satisfaction with the individually adjusted support, and patients improved in psychosocial outcomes over time. Patient ambassadors maintained their psychosocial baseline level, with no adverse events, and used the available support to exchange experiences with other patient ambassadors and to manage challenges. CONCLUSION: The patient ambassador support program is feasible and has the potential to be a new model of care incorporated in the hematology clinical care setting, creating an active partnership between patients and former patients. This may strengthen the existing supportive care services for patients with acute leukemia. TRIAL REGISTRATION: NCT03493906.
PURPOSE: This study investigated the feasibility of patient ambassador support in newly diagnosed patients with acute leukemia during treatment. METHODS: A multicenter single-arm feasibility study that included patients newly diagnosed with acute leukemia (n = 36) and patient ambassadors previously treated for acute leukemia (n = 25). Prior to the intervention, all patient ambassadors attended a 6-h group training program. In the intervention, patient ambassadors provided 12 weeks of support for patients within 2 weeks of being diagnosed. Outcome measures included feasibility (primary outcome), safety, anxiety, and depression measured by the Hospital Anxiety and Depression Scale, quality of life by the Functional Assessment of Cancer Therapy-Leukemia and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and symptom burden by MD Anderson Symptom Inventory, the Patient Activation Measure, and the General Self-Efficacy Scale. RESULTS:Patient ambassador support was feasible and safe in this population. Patients and patient ambassadors reported high satisfaction with the individually adjusted support, and patients improved in psychosocial outcomes over time. Patient ambassadors maintained their psychosocial baseline level, with no adverse events, and used the available support to exchange experiences with other patient ambassadors and to manage challenges. CONCLUSION: The patient ambassador support program is feasible and has the potential to be a new model of care incorporated in the hematology clinical care setting, creating an active partnership between patients and former patients. This may strengthen the existing supportive care services for patients with acute leukemia. TRIAL REGISTRATION: NCT03493906.
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