1. Patient Reported Outcomes in Hematopoietic Stem Cell Patients: A Pilot Project.
- Author
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Hayes, Christi Ann, Tosteson, Anna, Meehan, Kenneth, Mckenna, Dorothy, Root, Lynn D., Wilcox, Kate, Holthoff, Megan, Pearson, Loretta, and Brighton, Susan C.
- Subjects
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HEMATOPOIETIC stem cell transplantation , *QUALITY of life , *MEDICAL communication , *MEDICAL care costs , *MENTAL depression - Abstract
Background Patient-reported outcomes (PROs), including symptoms and quality of life (QOL) measures capture the patient-centered experience of hematopoietic stem cell transplantation (HSCT). They enhance patient-provider communication and allow for symptom intervention. PROMIS-29 is one of the NIH developed and validated tools for collecting PROs. It examines 7 domains: physical function, anxiety, depression, fatigue, sleep disturbance, social participation, and pain interference. We have piloted its use in the HSCT patients. Methods Twenty five patients both pre- and post- hematopoietic stem cell transplantation (allogeneic, n = 14; autologous, n = 11) were surveyed using the PROMIS 29 scale. Patients ranged from 4.6 months pre-transplant to 5.8 years post-transplant. The patients completed the PROMIS-29 survey in the waiting room prior to their scheduled appointments. Results The top three reported concerns were decreased physical function (38.5%), fatigue (30.8%) and pain (20%). Fatigue remained a prominent complain with patients commonly reporting moderate to severe fatigue post-transplant. Strikingly, patients reported fatigue commonly whether they were within a year of their transplant or several years out from their transplant. Conclusions PROs, such as PROMIS-29, provide valuable insight into the HSCT patient experience and QOL. Our pilot data, demonstrates that these symptoms can persist long after the patient has been cured of their hematologic malignancy. We are broadening the implementation of this survey to capture all HSCT recipients. We plan to use the results to enhance communication at our outpatient visits. We also plan to use the aggregated data to define areas for future intervention to help our patients cope following transplantation. [ABSTRACT FROM AUTHOR]
- Published
- 2019
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