Resources Available to Patients With CLL

Depending on where they are receiving treatment, there are several resources potentially available for patients with chronic lymphocytic leukemia, or CLL, as one expert explained to CURE®.

“It all depends on where you're at, what kind of practice you're in. Is your practice part of an academic setup, where you have access to people who focus solely on CLL? Or is it more of a small-ish practice, which may not have those kind of resources?” explained Dr. Farrukh T. Awan, Professor of Internal Medicine and Director of the Lymphoid Malignancies Program at the Harold C. Simmons Comprehensive Cancer Center at the University of Texas Southwestern Medical Center, speaking on behalf of the Leukemia Research Foundation.

Here are some potential resources available to patients, as Awan explained.

Social Workers and Patient Navigators

“[Patients need to know] ‘How do I get FMLA paperwork done? How do I get my disability paperwork done, if that's what I need? How do I get my days off?” Awan said. “So case management, social work, insurance issues, that's the first thing that patients are worried about, will I be able to work? How do I get time off if I need to get treatment? Those are all issues that you need to have a good care management and social work system in place to help patients navigate that process. So I think patient navigators and having access to those resources [is] the first step.”

Psycho-Oncology Services

“Secondly, the biggest challenge that our patients suffer from is usually the psychological trauma of having a diagnosis of CLL,” said Awan. “It's just a big deal. It's a big life event, having a cancer diagnosis. So the next thing we discuss with them is, ‘How do I provide you with the support which can help you deal with the diagnosis?’ And that is done through specific psycho-oncology services. So, we have a cancer psych service, which basically is designed for patients who have those issues and are having a hard time dealing with it.”

Genetic Counseling

“A lot of times patients may have a lot of questions about, ‘Hey, I have family members with multiple cancers, how do I go about exploring that my kids are protected or they know what they're dealing with?’ And it's not needed in all patients, certainly,” Awan said. “But having access to those information and ability to get those consultations is extremely helpful to have as part of that big setup.”

Cardio-Oncology

“Some of the treatments that we use might have cardiac issues, heart issues, high blood pressure issues,” Awan said. “So we have access to specialists who focus only on the care of patients with CLL who are being treated with certain drugs.”

And More

“Nutrition services, then you have rehab services, cancer rehab services,” Awan noted. “Let's say you're getting debilitated after your treatments and you need to get therapy to get back on your feet. That's the kind of resources that you have access to in a larger setup where you have all of these specialists working together to take care of the patients.

“So, these are what we would consider survivorship programs in which patients have access to all sorts of life resources under one roof so they don't have to go to multiple people to get this and you have one quarterback who's dictating your care … and obviously the nursing staff and the pharmacy, and all of those other pieces are already in place.”

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