A theory of cancer survivorship based on the needs of a population diagnosed with chronic lymphocytic leukemia

Abstract

Currently, there are an estimated 13 million Americans alive today with a history of cancer (American Cancer Society, 2013). By the year 2020, this number is expected to reach 20 million (Erikson, Salsberg, Forte, Bruinooge, & Goldstein, 2007). As new treatments are developed and survivors live longer, a new category of survivors living with chronic yet incurable cancers has emerged. There are an estimated 15,680 new cases of chronic lymphocytic leukemia diagnosed in 2013 (ACS, 2013). New technologies, along with advances in disease management has lead to an overall increase in 5 and 10 year survival rates in CLL with the average median survival rate of 10 years (Brenner, Gondos, & Pulte, 2008; Cortes, et al., 2010). The purpose of this study was to formulate a theory that captured survivorship based on the needs of the population diagnosed with the most common form of leukemia, chronic lymphocytic leukemia. There were a total of 12 participants in this study. Utilizing a qualitative grounded theory methodology, the study consisted of semi-structured interviews to explore their concept of survivorship and the effect on their lives as a result of living with their disease. Data results were grouped into six main themes (There's a Cloud There, In the Beginning, Certainty of Illness, Lens of Life, Human Advocacy, and Cures for the Incurable). This study increases understanding and provides insight into what it is like to live with CLL. The study also assists in guiding healthcare professionals to develop appropriate strategies and to better educate and manage the multiple dimensions of these unique survivors.