An internet-based survey of people with chronic lymphocytic leukemia in the UK

Background Chronic lymphocytic leukemia (CLL) is a common adult blood cancer. There is no cure, but a third of people never require treatment and new targeted drugs have improved outcome. Understanding the experience of living with CLL is important for clinicians, health care providers and researchers.. Methods This was an open internet-based survey of people with CLL, conducted by people with CLL. It was advertised via email and social media. Findings 1,009 people completed the survey. Respondents were more likely to be women (526, 52% female; 482, 48% male) and were younger at diagnosis (574, 57% <71 years) than the general CLL population. For one third of respondents diagnosis was in the last five years. For 617 (61%) diagnosis was at a GP visit for another heath condition. 40% (406) reported no other health conditions. 558 (55%) respondents were currently on active monitoring, 261 (26%) were receiving treatment, and 190 (19%) in remission. Satisfaction with the speed of diagnosis, explanation of their CLL diagnosis and of the next steps in treatment was high. A quarter of respondents reported no current signs and symptoms of CLL, or side effects of treatment. Fatigue was reported by 578 (57%), three quarters of whom experienced this daily. Fatigue was reported to have a high impact on day-to-day life. Other common problems were bleeding and bruising more than normal (263, 26%) and getting infections often (228, 23%). From an emotional and a physical perspective, respondents reported their CLL had a higher impact on quality of life now than before the COVID-19 pandemic. Most respondents (829, 82%) received their treatment or monitoring at a hospital, for 253 (31%) contact was ‘mostly/all remote’. Conclusions Fatigue is a key problem for people with CLL. CLL impacts on the physical and emotional aspects of quality of life.