Patient Reported Review of Symptoms in Survivorship Clinic

Allogeneic hematopoietic cell transplant (HCT) is a potentially curative treatment for many hematologic malignancies. Survivors of HCT have a variety of side effects from chemotherapy, graft-versus-host disease, as well as late effects including cardiovascular disease, diabetes and osteoporosis. Patient report of symptoms has been demonstrated to be a more accurate measure of health status, and can enhance patient-physician communication. Within our survivorship program, we collect a comprehensive assessment of core symptoms at day 100 and 1 year. These patient reported symptoms presents an opportunity to screen and detect potential complications early. All allogeneic HCT recipients are seen within our survivorship program and asked to complete a systematic and comprehensive screening questionnaire to evaluate a variety of symptoms related to skin, eyes, mouth, gastrointestinal tract, cardio/pulmonary, musculoskeletal, sexual functioning, work, substance use, exercise, cognition and performance status at day 100 and 1-year post HCT. From 2016-2018 161 patients had an allogeneic HCT and 42 patients completed survivorship appointments at day 100 and 1-year.We performed a review of patient assessments of their symptoms. Patients reported more symptoms at 1 year compared to day 100 (Figure).  The most common symptoms reported were involving the musculoskeletal system (N=35 at both day 100 and 1-year) and cognitive functioning (N= 29 at day 100 and N=24 at 1 year). Musculoskeletal complaints included tremors and leg weakness, more common at day 100; and numbness, joint stiffness, decreased range of motion and joint pain more commonly at 1-year. Difficulties with memory and having to cut back on activities due to fatigue were prevalent day 100 and 1-year after HCT. Many symptoms reported were related to acute and chronic GVHD (17 developed acute GvHD by day 100 and 21 had chronic GVHD at 1 –year). In summary, this review demonstrates a continued high burden of symptoms in transplant survivors even at 1 year—with persistent or even new symptoms occurring. This emphasizes the need for continued follow up of late-effects and importance of patient self-report. Through our survivorship program, we hope to continue to capture patient-reported outcomes to better measure health status and late effects.