A Cancer Survivorship Study of Perceptions Among Leukemia Patients In the Acute, Extended, and Permanent Survival Phases.

There are three phases of cancer survivorship: acute, extended, and permanent survival phases. The acute survival phase (ASP) begins with diagnosis of the disease and is dominated by diagnostic and therapeutic efforts. Extended survival phase (ESP) occurs when a patient goes into remission or has completed treatment. The permanent survival phase (PSP) is equated with cure. While fear and anxiety are known elements of the phases of cancer survivorship, other perceptions of patients during these phases are not well known. While there has been a large focus on survivorship in pediatrics, as well as solid tumor malignancies, this has been an understudied area in adults with leukemia. Previous work by our group had focused on the ASP in solid tumors, as well as perceptions of breast cancer patients in the ESP (Pandya et.al, AACR, 2007; Abstract 3423). This IRB-approved retrospective pilot project examined perceptions and beliefs among patients with leukemia in the ASP, ESP, and PSP.

Fifty-five adult patients from our NCI-designated cancer center were individually interviewed by one interviewer. Questions were taken from the People Living With Cancer website, the National Comprehensive Cancer Network, and the National Research Council. These 57 questions were beta tested in multiple iterations. Subjects were asked about multiple areas of survivorship including their social support system, satisfaction and compliance with treatment, and satisfaction and trust of their primary care physician, nursing staff, and hematologist. Other topics covered included their distress level (0-10), quality of life, and also their perceived efficiency of diagnosis and treatment.

Demographics of the 55 patients are ALL-10, AML-9, CLL-23, and CML-13; females-23 and males-32; Hispanics-55%, Caucasians-36%, and African-Americans-9%; ASP-22, ESP-21, and PSP-12. Overall, 45% of the patients did not feel their life was normal and 51% feared recurrence with 39% reporting anxiety about their leukemia. AML patients experienced the most physical, family, emotional, and spiritual problems (78%, 33%, 56%, and 22%). In addition, 56% of AML patients also reported requesting more assistance with psychological well-being compared to ALL (10%), CLL (17%), and CML (1%) patients, (p-value 0.045). Finally, AML patients had the highest distress level with a mean score of 5.8 (SD 1.7), compared to ALL (1.8), CLL (3.2), and CML (5.1), (p-value < 0.001).

Among all the phases of survivorship, the ASP had the highest distress level (mean-4.8) and the worst quality of life (mean-2.3). The ASP patients had the most treatment for depression (38%). In the PSP, 100% reported satisfaction with their treatment, survivorship care, compliance, being informed, sense of control, high self esteem, relationship with family and friends, sense of gain for surviving, and satisfaction with care for physical, social, and spiritual well-being, (p-value 0.026).

When comparing races, African Americans and Hispanics (40% and 37%) were unable to cope with finances, compared to Caucasians (5%), (p-value 0.016). Fear of recurrence was highest in Hispanics (67%), compared to African Americans (40%) and Caucasians (30%), (p-value 0.031). African Americans reported requiring more assistance with social and spiritual well-being (40% for each). Hispanics (40%) experienced problems with housing, insurance, work, transportation, and child care, as compared to African Americans (20%) and Caucasians (10%), (p-value 0.047).

Overall, leukemia patients had a lower average distress score of 3.8 versus breast cancer and solid tumor patients (4.5 and 5.2). Leukemia patients were satisfied with medical care with regards to their physical (95%), psychological (87%), social (82%), and spiritual (87%) well-being versus solid tumor malignancies (67%, 57%, 43%, and 23%). Treatment for depression was lower for leukemia patients (24%), compared to breast cancer (46%) and solid tumor (27%) patients.

This pilot study addresses the perceptions and beliefs of leukemia survivors. While patients are satisfied in many areas in the PSP, there is still a need to further investigate various aspects of quality of life during the ASP and ESP, particularly in AML and minority patients. Future prospective studies are warranted that identify and overcome barriers to optimal cancer survivorship care.

No relevant conflicts of interest to declare.