Abstract
PurposeThis study investigated the feasibility of patient ambassador support in newly diagnosed patients with acute leukemia during treatment.MethodsA 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.ResultsPatient 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.ConclusionThe 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 registrationNCT03493906
Highlights
Acute leukemia (AL) is a malignant hematological disease with a rapid onset which, in curative treatment regimens, is followed by intensive high-dose chemotherapy, risk of lifethreatening complications, and a significant symptom burden [1,2,3,4,5]
A little less than half (44%) of the patient ambassador (PA) were more than 4 years from their AL diagnosis, and 68% had undergone allogeneic hematopoietic stem cell transplantation
Our results showed that patients improved over time in most psychosocial outcomes, which is consistent with other longitudinal studies examining quality of life (QOL) and psychological health in patients with AL throughout the treatment trajectory [40,41,42]
Summary
Acute leukemia (AL) is a malignant hematological disease with a rapid onset which, in curative treatment regimens, is followed by intensive high-dose chemotherapy, risk of lifethreatening complications, and a significant symptom burden [1,2,3,4,5]. Curative regimens for AL have only improved to a limited extent [1], while supportive care has improved significantly [6,7,8,9]. In Northern Europe and the USA, an increasing number of patients are receiving the majority of their treatment in the outpatient setting [6,7,8,9]. These improvements are crucial but can result in the patients having less contact with health professionals and other patients with AL during treatment
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