While patients with chronic lymphocytic leukemia (CLL) tend to have long life expectancies, with many prescribed to a “watch-and-wait” approach, a recent study by the Cancer Support Community (CSC) found that more than half of patients living with the disease reported that having CLL affects their viewpoints regarding their life expectancy.

“This study is an important first step into understanding the challenges and concerns specific to CLL patients and the psychosocial consequences of being diagnosed with CLL,” said Linda House, CSC president, in a release.

The CSC is the world’s largest professionally led network of cancer supports, and presented their findings at the 2017 American Society of Hematology (ASH) Annual Meeting and Exposition.

The study involved 134 people with CLL who were enrolled in the CSC’s online Cancer Experience Registry. Participants completed surveys that examined both health-related quality of life and financial issues.

In the group, 49 patients (37 percent) were undergoing a watch-and-wait approach; eight patients (6 percent) were undergoing their first line of treatment; 16 (12 percent) their active second or subsequent treatment; and 52 (39 percent) were in remission.

Despite the fact that only five patients (4 percent) were reported to be in poor health (the others being excellent, very good, good and fair), 62 percent said that CLL “somewhat to very much” affected their views on life expectancy.

Forty-one percent reported concerns about their quality of life, 40 percent were worried about finances and 34 percent had concerns regarding their ability to work. About a quarter of patients (26 percent) also worried about relationships with their family and friends.

Overall, patients involved in the study reported a substantially worse quality of life — especially when it came to anxiety and fatigue – compared to the general population in the United States, however, it is unclear how disease advancement and treatment contribute to poor quality of life.

“These findings highlight the importance of examining changes in quality of life and distress throughout the cancer experience and that psychosocial services, like those offered through CSC, play a vital role in supporting patients and survivors who have these symptoms and concerns,” said Alexandra Zaleta, Ph.D., CSC Senior Director of Research.

Looking forward, the researchers outlined that further research is needed regarding the factors that put patients with CLL at greater risk for poor outcomes, as well as the interventions currently in place to address emotional distress and quality of life, particularly with those who are progressing on the disease.