AbbVie blood cancer survey reveals emotional roller coaster hitting patients

Patients and caregivers undergo a unique emotional journey during the phases of chronic lymphocytic leukemia (CLL), but there is a major gap in support.

That’s the finding of a new AbbVie survey, dubbed the Emotional Impact Report, which wants to help plug this gap and help those newly diagnosed get the support they need.

All cancer patients face the daunting challenge of dealing with their diagnosis, but CLL patients have extra burdens: This disease is a slow-growing form of blood cancer, and, due to its complexities, patients and healthcare providers responding to the survey indicated a need for greater support at the time of diagnosis.

While the emotional impact of a cancer diagnosis is always difficult, a CLL diagnosis is unique in that there is often a long wait period before treatment even begins. It’s a lot of watching and waiting. Therefore, people with CLL go through a roller coaster of emotions as they deal with their diagnosis for many years.

“We recognize a diagnosis of cancer may have a great emotional impact on everyone involved, especially patients,” an AbbVie spokesperson said in an interview.

“Our Emotional Impact Report survey was developed with a focus on CLL because we feel there is significant opportunity to improve the quality of conversations around the emotional and mental health aspects of a CLL diagnosis among patients, caregivers, and HCPs.”

AbbVie markets two top-selling drugs targeting CLL. The first product, Venclexta, is a BCL-2 inhibitor that made its debut in 2016 for the treatment of patients with relapsed CLL caused by a particular genetic mutation.

The second product, Imbruvica, is a BTK inhibitor launched in 2013 and the current leader in the second-line CLL market.

The Emotional Impact Report findings showed a majority (70%) of HCPs feel treating CLL patients differs from treating other cancer patients.

As one patient shared, “the hardest part with living with CLL is that I know that I have cancer, but it is not being treated. In my case, watch and wait is the best place to be but it can be hard at times.”

According to the survey, some of the emotions following an initial CLL diagnosis include worried (32%), uncertain (36%), tired (36%), optimistic (36%) and hopeful (41%). While what the average patient goes through will fluctuate, only 64% reported feeling supported by their doctor when initially diagnosed.

“Our aim with releasing the survey findings is to spark important discussions on emotional well-being among HCPs, patients, and caregivers as they move through all stages of their CLL journey,” said the AbbVie spokesperson. While 71% of HCPs said they are likely to discuss the emotional impact of CLL with their patients, “we know there are always additional opportunities to better support patients and caregivers,” the spokesperson added.

For caregivers interviewed in the survey, 81% feel positive about caring for someone with CLL, yet nearly 3 in 4 state that being a caregiver is more difficult than expected.

AbbVie currently offers support to patients and caregivers via its LivingwithCLL.com website, which offers information about CLL and helps individuals better understand treatment options such as fixed-duration therapy. The website also provides tips for patient or caregiver discussions with their physicians.

The pharma also partners with patient advocacy groups to help support their patient education initiatives and is in discussions with several of these organizations about the findings of the Emotional Impact Report to identify new educational tools to support CLL patients’ and caregivers’ emotional well-being and mental health.