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.

I have read the journal's policy and the authors of this manuscript have the following competing interests: HL is chair of the board of trustees for CLL Support. DY is a trustee with CLL Support. LD is an associate with CLL Support. None receive any remuneration for their involvement.

Yes

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Not Applicable

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

UK HRA reports confirming the survey did not meet criteria for research ethics committee review have been uploaded for the relevant four countries

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

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I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

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The data are largely contained within the manuscript. As a small volunteer led charity we do not have resources to make the full data set available. If the paper is accepted, we would be happy to consider further how to make the data more avaiable