AbbVie surveys emotional impact of chronic leukemia condition, finds 'roller coaster' of emotions
Rare diseases often have more than just physical effects on patients — especially when it comes to chronic conditions. In the case of the rare slow-growing blood cancer chronic lymphocytic leukemia (CLL), AbbVie wanted to try to assess the mental and emotional toll on patients.
So it surveyed more than 300 CLL patients, caregivers and physicians. While each group differed in how they felt — caregivers overwhelmingly (81%) felt positive about their role, for instance — patients described a “roller coaster” of emotions traversing diagnosis to treatment to remission and even relapse for some.
Not surprisingly, newly diagnosed patients felt worried (32%) and uncertain (36%), but a slightly higher percentage also felt optimistic (36%) and hopeful (41%).
CLL patients reported a rising level of emotional support from their doctors across the span of their chronic conditions. At diagnosis, 64% of patients surveyed agreed they were supported, but that rose to 86% during treatment, AbbVie reported.
The physicians surveyed agreed overwhelmingly (90%) about the importance of talking to patients about their emotional well-being, with 71% who said they are likely to discuss it with patients.
AbbVie wanted to get the perspectives of the different groups because they’re all “critical to a patient’s disease and treatment journey,” an AbbVie spokesperson said in an email.
“These results are not surprising based on our years of working with the CLL community; however, they validate the mental and emotional toll patients and caregivers face as they move through all stages of the CLL journey, from diagnosis to treatment and beyond,” the spokesperson said.
AbbVie is now sharing the survey results with patient advocacy groups and plans to engage CLL patients, caregivers and healthcare professionals to enable a “holistic journey” across the condition.
The mental and emotional impact study dovetails with AbbVie’s ongoing awareness and support “Living with CLL” effort that offers advice, resources and disease management education on its website.
While the awareness initiative and survey are unbranded, AbbVie’s portfolio of medicines includes Venclexta, called Venclyxto outside the US, along with partner Roche’s Genentech. The drug is approved to treat people living with CLL and small lymphocytic lymphoma as well as acute myeloid leukemia (AML) combined with certain other medicines for some patients.