This application seeks support for research with the aim of investigating how African American, Latino, and non-minority persons who have BMT experience symptoms and quality of life (QOL) at eight times over the first 100 days after their transplantation. Including African American and Latino patients in sufficient number is an important focus for this research because virtually no BMT research has included ethnic minority patients in sufficient numbers to document differences in their symptoms and quality of life. Evidence from other populations indicates that symptoms will differ by ethnic group. The success of this treatment, survival, and the quality of life for patients are related to the BMT symptoms. Patients in several studies have rated their quality of life positively, despite experiencing psychosocial and physical sequelae such as fatigue, anxiety, pain, sexual dysfunction, depression, sleep disturbances, inability to return to work, and fear of relapse or death. It is important to distinguish between symptom prevalence and perceived QOL. QOL continues to have a variety of definitions a variety of definitions and measures. Therefore, this project will use a triangulated design that includes repeated measures of both quantitative and phenomenological data. The project will determine the QOL and prevalence and severity of symptoms and include a systematic thematic analysis of these persons' experiences. The components of these experiences will be compared longitudinally with symptom prevalence and severity and QOL as measured by standard instruments. These data are lacking in the literature and are needed for several reasons. Symptoms are severe, known to vary over time and for different ethnic groups, and patient survival and QOL post-BMT depend on effective symptom management. The meanings patients attribute to their experiences help create the needs they have and how these needs can best be met. These data are crucial to more fully understand the meaning of QOL for these persons, to help explain the puzzling finding that persons who have BMT rate their QOL high despite experiencing many symptoms, and to develop effective and culturally appropriate interventions. Future research will focus on developing and testing appropriate interventions.
| Cohen, Marlene Z; Jenkins, Debra; Holston, Ezra C et al. (2013) Understanding health literacy in patients receiving hematopoietic stem cell transplantation. Oncol Nurs Forum 40:508-15 |
| Cohen, Marlene Z; Rozmus, Cathy L; Mendoza, Tito R et al. (2012) Symptoms and quality of life in diverse patients undergoing hematopoietic stem cell transplantation. J Pain Symptom Manage 44:168-80 |
