New Survey Offers Perspective on Mental and Emotional Journey for Patients Diagnosed with Slow-Growing Blood Cancer

On June 24, 2022 AbbVie reported findings from the newly launched Emotional Impact Report, a survey of more than 300 chronic lymphocytic leukemia (CLL) patients, caregivers and healthcare providers (HCPs), which uncovered insights about the emotional journey associated with a CLL diagnosis (Press release, AbbVie, JUN 24, 2022, View Source [SID1234616232]).

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CLL is a slow-growing form of blood cancer in which the bone marrow makes too many lymphocytes, a type of white blood cell.1 CLL progresses much slower than other forms of leukemia and many do not experience symptoms for several years. This leads to disease management with an approach called "watch and wait" in which the disease progression is monitored until treatment is deemed necessary.2

A CLL diagnosis can take a mental and emotional toll on patients, caregivers and HCPs and the Emotional Impact Report seeks to better understand that impact, raise awareness of the need for additional support and the importance of considering overall Quality of Life when making treatment decisions.3

Among a sample of 111 CLL patients, emotions ranged from angry and bitter to optimistic and grateful. For those CLL patients who were newly diagnosed and/or told by their HCP to watch and wait, many may feel hopeful (41%) and optimistic (36%), expressing they are looking forward to the future success of their treatment and their long-term prognosis. And once patients first receive treatment, many (42%) feel positive, including mentions of feeling confident, satisfied, or relieved as they see the medication working. Others mention feeling anxious, never knowing when they will need treatment again and not knowing what is next, further reinforcing the variation and complexity of emotions experienced by CLL patients.

"These findings highlight the ups and downs CLL patients can go through from potentially waiting to start treatment to the prospect of being on continuous therapy," said Ahmed Kotb, vice president, US medical affairs, oncology, AbbVie. "But patients don’t have to navigate a disease like CLL on their own. Based on insights from the Emotional Impact Report, there is an opportunity for increased dialogue between patients and their physicians to set treatment goals and understand available treatment options."

Furthermore, HCPs understand the importance of talking to their patients about the emotional impact of CLL. In fact, 71% said they are likely to discuss the emotional impact of CLL with their patients. Specifically, 90% recognize that a patient’s emotional well-being has an impact on their treatment plan. Physicians cited specific impacts, including adherence to treatment, ability to cope with treatment and how they respond to treatment. HCPs recognize that treating a CLL patient differs from treating other cancer patients, in that CLL is treated similarly to the way a chronic disease is treated, which increases the need to consider Quality of Life when making treatment decisions.

Among a sample of 100 caregivers, most (81%) feel positively about caring for someone with CLL and feel it is their duty to help their loved one. Yet, nearly three in four state that being a caregiver is more difficult than expected. As one caregiver noted, the biggest reason why they are nervous in their role is because they don’t know what’s going to happen from one minute to the next.

This U.S.-based survey was conducted between March 11 – April 7, 2022, and responses were obtained from 313 participants, which included 111 CLL patients, 100 caregivers and 102 HCPs. The online survey was sponsored by AbbVie and developed in consultation with C Space.

To learn more about CLL, navigating a diagnosis and understanding treatment goals, visit

About Chronic Lymphocytic Leukemia
CLL is one of the two most common forms of leukemia in adults and is a type of cancer that can develop from cells in the bone marrow that later mature into certain white blood cells (called lymphocytes).1 While these cancer cells start in the bone marrow, they later spread into the blood. In 2019, there were approximately 200,766 people with CLL living in the United States with more than 20,000 new cases expected in 2022.4 CLL is predominately a disease of the elderly, with a median age at diagnosis of 65 to 70 years and is more common among men than women.5

About the Survey
Participants in the 31-35-question self-administered online survey included three groups, each with its own set and number of survey questions: patients, caregivers, and physicians who specialize in treating cancer. The patient group (n = 111) and the caregiver group (n = 100) included adults ages 18 and older from the U.S., and the physician group (n = 102) included board-certified hematologic oncologists, hematologists or medical oncologists who had treated at least five patients with CLL in the previous 12 months in the U.S. All surveys were completed between March 11, 2022, and April 7, 2022. Using the field services of C Space, the surveys asked both qualitative and quantitative questions. This online survey is not based on a probability sample and therefore no estimate of theoretical sampling error can be calculated.

About C Space
C Space is a global customer agency, that builds customers into the ways companies work.

Working with some of the world’s best-known brands – including Walmart, McDonald’s, IKEA and more – C Space builds the world’s most relevant brands by unlocking the power of human relationships. By building ongoing relationships with customers, brands can stay relevant, deliver superior experiences, and build loyalty. C Space’s customized customer programs are tailored based on specific business needs and include private online communities, in-person live events, visual storytelling, co-creation workshops, and business consulting.

Headquartered in Boston, C Space also has offices in London, New York, Tokyo, San Francisco, and Mexico City. C Space is a part of the Interbrand Group.