Your Survey Results Are In! What Matters Most to People with CLL when Choosing Treatment

A new survey found that many people with chronic lymphocytic leukemia (CLL) prefer time-limited treatment instead of ongoing therapy. The results also showed that patients want more discussion with their doctors about treatment length and quality of life. 

Many people with CLL preferred time-limited treatment

HealthTree worked with CLL specialist Dr. Deborah Stephens to survey 43 people living with CLL or small lymphocytic lymphoma (SLL). Most participants were receiving treatment during the survey. Patients were asked whether they preferred:

• Continuous treatment taken long-term
• Time-limited treatment taken for about 1 to 2 years

CLL treatment has changed significantly in recent years. Many people now receive targeted therapies instead of previously used chemotherapy. The survey included patients treated mostly with targeted therapies such as venetoclax (Venclexta, AbbVie) and BTK inhibitors. 

Researchers found that 74.4% of patients preferred time-limited treatment. Only 25.6% preferred continuous therapy.

The most common choice was combination pills for 1 to 2 years. After treatment, patients would stop therapy and enter a monitoring period. Some patients also preferred a fixed period of pills plus antibody infusions. 

This finding matters because CLL treatment often involves trade-offs. Some people may prefer treatment-free time and fewer long-term side effects.

Keeping CLL controlled remained the top goal

Even with a strong interest in time-limited treatment, CLL control remained the top priority. Patients said the most important treatment factors were: 

• Keeping CLL controlled over time: 41.9%
• Reducing side effects: 25.6%
• Taking a break after treatment: 14%
• Limiting disruption to daily life: 14% 

Many patients also said their quality of life strongly affected future treatment choices. This shows that people with CLL value both treatment effectiveness and daily well-being. 

Many patients wanted more treatment discussions

The survey also found a gap in shared decision-making. Only about half of the respondents said their doctor discussed both continuous and time-limited treatment options before treatment started.

This may affect how prepared patients feel when choosing therapy. Some people may not know that several treatment approaches are available for CLL.

These discussions should become a routine part of CLL care. Clear conversations may help patients better understand the benefits and risks of each option.

Fear of relapse remained a major concern

Many patients who preferred time-limited treatment also worried about relapse. The most common concerns included:

• Not knowing how long remission may last
• Fear that the CLL could return

Researchers said these concerns may cause stress for some people stopping therapy. Patients may feel more comfortable with clear follow-up plans and regular monitoring after treatment ends. 

This finding shows that emotional concerns also affect treatment decisions. Some people may feel uncertain during treatment-free periods, even when treatment works well.

Key takeaways

The survey found that many people with CLL prefer time-limited treatment options. Patients also said that quality of life and cancer control both matter when choosing therapy. The results highlight the need for more discussions between patients and healthcare teams about treatment duration and personal preferences. Patient preferences may continue changing as new treatment combinations become available.