Abstract
Patients with chronic lymphocytic leukemia (CLL) are part of a new category of survivors emerging in the population of Americans who are living with cancer. These survivors who have received treatment are living with an incurable cancer characterized by periods of exacerbations and remissions, yet little is known about this population’s needs from oncology providers. The purpose of this study was to identify the needs of the CLL survivor who has undergone at least one treatment for CLL. The results of this study led to the development of a clinical plan for these patients based on these needs. Grounded theory methodology was used to guide the study, which used semi-structured interviews to explore these patients’ unique needs. Twelve participants were recruited and asked to describe living their lives with CLL. The substantive theory from this study was the overarching category of “Living Under a Cloud of Illness.” Additional primary categories included “In the Beginning,” “Lens of Life,” “Preparing for Illness,” and “Advocating for Us.” The results of this study can guide the advanced practitioner into patient-centered care based on the needs of the patient with CLL.
