The Impact of Mental Health Challenges Among CLL Patients in Watch-and-Wait and for Minority Groups

This article shares insights from two studies. The first shows how emotional and cognitive health can be affected in people living with chronic lymphocytic leukemia (CLL), especially during the watch-and-wait period. The second highlights survey findings that point to areas where emotional support can be improved for minority individuals with CLL. 

Real-world mental health challenges of CLL patients

Mental health needs can begin during watch-and-wait, not just after treatment starts

The first study found that people living with CLL often experienced mental health concerns, such as anxiety or depression, soon after their diagnosis, especially if they were not yet receiving therapy. This early phase, often called active surveillance or watch-and-wait, is when doctors monitor CLL without starting treatment right away. 

As well, out of 7,734 people with CLL, those in the watch-and-wait group had higher average mental health-related healthcare visits per month than those who started their first or second CLL treatment.  

This is important to understand because it alerts patients to look for mental health symptoms that may need professional support, even during the watch-and-wait period. Recognizing these signs early can help you get the care you need to protect your overall well-being. 

Cognitive concerns were also part of the picture

The researchers also looked at cognitive impairment, such as dementia or Alzheimer’s. They found that people in the watch-and-wait group had more cognitive-related healthcare visits than those who were receiving treatment for CLL, showing a similar pattern to the group of patients who attended mental healthcare visits.

If you experience cognitive issues, speak with your doctor about supportive measures to help you.

Mental health findings of underrepresented CLL patients 

Highlighting an increased need for culturally sensitive care

The second survey explored how mental health experiences may differ or overlap among minority groups living with CLL. This research is important because it sheds light on disparities, indicating where more support is needed. 

Among 232 CLL patients, 45% of Asian, 38% of Hispanic, and 24% of Black patients expressed a strong need for emotional and educational support tailored to their cultural values, compared to only 2% of Caucasian patients. 

These results show the need for offering more culturally sensitive support for underrepresented groups living with CLL.  

Processing the CLL diagnosis

When asked about their emotional responses at diagnosis, many Hispanic, Black, and Asian individuals reported high levels of fear (67%) and surprise (56%). Among Caucasian participants, fear was even more common (90%), along with surprise (71%).

72% of Hispanic participants also reported more difficulty knowing what steps to take next and feeling heard by their providers. Additionally, across all groups, fewer than half of the patients felt emotionally supported by their doctors. 

While CLL specialists are focused on helping you manage the cancer effectively, they may not be trained in mental health care. If you’re experiencing ongoing feelings of depression or anxiety, it’s important to seek support from a licensed mental health professional who can help you manage the emotional impact of a CLL diagnosis, whether during watch-and-wait or CLL treatment.  

Summary

Based on real-world findings, people with CLL were more likely to experience and seek support for mental health concerns or other cognitive impairments during watch-and-wait than during CLL treatment. This is important to know because emotional and cognitive challenges may arise even when no active treatment is being given, and recognizing them early can help individuals get the support they need sooner. 

An additional study found that Hispanic, Black, and Asian patients with CLL were more likely than Caucasian patients to want emotional support that reflected their cultural values. This highlights how important it is for healthcare teams to provide inclusive, culturally sensitive support, which can help build trust and improve emotional well-being for minority groups.

If you're struggling emotionally, consider speaking with a licensed mental health professional. They can help you manage the difficult emotions that may come with a CLL diagnosis.

Additional resources are available here: Improving Mental Health Among Blood Cancer Patients. 

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Sources: 

• Real-World Mental Health Burden in Patients With Chronic Lymphocytic Leukemia
• AbbVie Announces Emotional Impact Report on Mental Health of Underrepresented CLL Cancer Patients