Weill Cornell Lymphoma and PTSD Study

By Regina Jacob, MD

Update: this study is closed to enrollment. 

Coping with Lymphoma to Enhance Adjustment and Reduce Stress in Survivors (CLEAR Stress) is a study being done here at the Weill Cornell Lymphoma Program that is looking at Post-traumatic Stress Disorder (PTSD) and Post-traumatic Growth in patients diagnosed with Lymphoma (Non-Hodgkin’s, Hodgkin’s, or Waldenstrom’s Macroglobulinemia). We are looking to see if we can find which patients are more likely to develop PTSD, which patients are more likely to develop Post-traumatic Growth, and we are also looking to see if there is a correlation between the two.

Participation consists of a one-time interview, which will be approximately 60-90 minutes and is given in survey form. This can be completed in-person, over the phone, via mail, or via internet-based surveys.

Click here for more details about the CLEAR Stress study.

Study Background

What do we know about Post-Traumatic Stress Disorder (PTSD) in Cancer?

In a survey study done at Weill Cornell Medical College in 2008, it was found that up to 30% of all Lymphoma Survivors suffered from at least moderate symptoms of PTSD. This is important because PTSD can influence a survivor’s overall quality of life—contributing to both anxiety and depression that last long term. PTSD in the cancer population is not the same as the PTSD seen in war veterans—the stress is not discrete and there are more choices given to the cancer patient with regards to treatment options. Therefore, the treatments that have successfully enabled war veterans diagnosed with PTSD to rejoin society, do not work as effectively in cancer patients. As a result, physicians, nurses, social workers, and families try to prevent a cancer patient from developing PTSD.

What is Post-traumatic Growth?

Some people like to think of it as the opposite of PTSD, but it is a little more than that:  it usually involves all the positive changes a person goes through after a stressful encounter. Among cancer survivors, up to 90% of all cancer survivors report some degree of post-traumatic growth. The most common being: stronger relationships with friends/family, a newfound appreciation for life, a stronger sense of self, and a stronger sense of spirituality.

What is the relationship between PTSD and Post-traumatic Growth?

Thus far, there is a very little data about the correlation between Post-traumatic Growth and PTSD. Most physicians and psychologists believe that patients who demonstrate more Post-traumatic growth will also demonstrate less PTSD (which is very desirable since the treatments available for PTSD are not as effective in cancer patients). Ideally, if health care professionals can understand which patients are at a higher risk for developing PTSD, then we might be able to prevent PTSD in the first place.

For more information about the CLEAR Stress study or if you are interested in participating, call Dr. Jacob at (646) 962-5027 or e-mail Dr. Jacob at rej2008@med.cornell.edu

Lymphoma in the News: Post-Traumatic Stress Symptoms are Common in Survivors of Non-Hodgkin Lymphoma

By Peter Martin, MD

Post-traumatic stress disorder (PTSD) is a chronic condition characterized by anxiety and re-experiencing of a particularly stressful psychological trauma. Typically, we associate PTSD with events like wars or serious accidents. There is increasing data, however, that survivors of serious medical illness can also be affected by symptoms of PTSD. Long-term results of a study designed to evaluate PTSD in survivors of non-Hodgkin lymphoma (NHL) were recently reported in the Journal of Clinical Oncology.

The investigators administered surveys to 886 individuals with a history of NHL. They found that 39% of patients experienced PTSD symptoms with 8% meeting diagnostic criteria for PTSD. In a follow up study performed five years later, 566 of the original group of patients responded to a second survey. The investigators found that roughly one-third of patients experienced persisting or worsening PTSD symptoms. Only 12% of patients had symptoms that resolved over the course of the study. People most likely to experience persistent or worsening symptoms of PTSD were those with a lower annual income and those that reported a negative impact from the cancer (e.g., appearance concerns, body changes, life interferences, worry).

These results are particularly concerning for two reasons. First, the assumption that cancer-related anxiety will improve over time appears to be flawed. Second, as the population of patients with cancer ages, and as cancer care becomes more expensive, we are likely to see an increase in persistent PTSD symptoms. Clearly, we need to find ways to improve the initial cancer experience and to intervene earlier in patients at risk of persistent PTSD symptoms. The statement “survivorship begins at diagnosis” appears to be truer than ever.

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