Patient ambassador support in newly diagnosed patients with acute leukemia during treatment: a feasibility study
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ORIGINAL ARTICLE
Patient ambassador support in newly diagnosed patients with acute leukemia during treatment: a feasibility study Kristina Holmegaard Nørskov 1 & Dorthe Overgaard 2 & Jannie Boesen 3 & Anne Struer 4 & Sarah Elke Weber Due El-Azem 4 & Anders Tolver 5 & Kirsten Lomborg 6,7 & Lars Kjeldsen 1 & Mary Jarden 1,8 Received: 30 May 2020 / Accepted: 7 October 2020 # The Author(s) 2020
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 6h 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 * Kristina Holmegaard Nørskov [email protected]
1
Department of Hematology, Rigshspitalet, Blegdamsvej 9, 2100 Copenhagen Ø, Denmark
2
University College Copenhagen, Tagensvej 18, 2200 Copenhagen N, Denmark
3
Department of Hematology, Herlev Hospital, Borgmester Ib Juuls Vej 1, 2730 Herlev, Denmark
Anne Struer [email protected]
4
Department of Hematology, Zealand University Hospital, Roskilde, Sygehusvej 10, 4000 Roskilde, Denmark
Sarah Elke Weber Due El-Azem [email protected]
5
Anders Tolver [email protected]
Data Science Laboratory, Department of Mathematical Sciences, University of Copenhagen, Universitetsparken 5, 2200 Copenhagen N, Denmark
6
Kirsten Lomborg [email protected]
Department of Clinical Medicine, Aarhus University, Paalle Juul-Jensens Boulevard 82, 8200 Aarhus N, Denmark
7
Department of Clinical
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