NeuroVoices: Anne Kever, PhD, on MS Diagnosis Disclosure, Concealment Behaviors

Anne Kever, PhD

Anne Kever, PhD, recently presented an abstract at the ACTRIMS Forum 2021, February 25–27, which concluded that disclosure and concealment attitudes are related to increased anxiety and depression in patients with multiple sclerosis (MS). Kever, a postdoctoral researcher at Columbia University, used a newly developed questionnaire dubbed DISCO-MS, which measured frequency of concealment behaviors and expected consequences of diagnosis disclosure.

The data showed that greater perceived emotional burden was associated with worse depression (r = .236; P <.05) and higher anxiety (r = 518; P <.001), while greater perceived negative consequences of disclosure were linked to worse depression (r = .433; P <.001) and higher anxiety (r = .518; P <.001) as well. To date, there has been minimal literature on the effects of diagnosis disclosure on patients with MS.

As part of our NeuroVoices series, Kever sat down to discuss her study in detail, including the motivation behind it, whether psychological care should be crossed with MS care, and steps needed to take to lower the number of patients who conceal their diagnosis. She also weighed in on whether anxiety and depression receive fair clinical attention, as well as how her research may springboard other future efforts.

NeurologyLive: can you first talk about the motivation for this type of study how it came together and why you decided to conduct it?

Anne Kever, PhD: The motivation for the study actually comes from our clinical practice. Apart from our research work, my advisor, Victoria Leavitt, PhD, and I, also see patients in clinical practice. That’s where we noticed that the issue of diagnosis disclosure and concealment was a recurring topic of discussion that was brought up by many patients and very regularly. As you can probably imagine, suffering from a chronic disease is extremely stressful.

Patients have to deal with a variety of symptoms, which impact their relationships, quality of life, and personal life. Additionally, the majority of the patients we’re working with suffer from relapsing-remitting MS, where they experience sudden flare ups that are then followed by periods of partial or complete recovery. This gives patients the possibility to conceal their diagnosis during these periods of stability, as well as make their condition extremely unpredictable. They never know when to expect the next flare up.

We have been wondering if on top of all the known disease-related stressors that patients with MS deal with, if the issue of diagnosis disclosure and concealment is not an additional stressor which has been overlooked until now. When we reviewed the literature, we indeed noticed that there were only very few studies that had investigated the question, which meant further research was necessary. We also noticed that at this point, no validated scale to measure what leads patients to hide their diagnosis or the reasons to make this choice. Also, what are the expected consequences from their side? Overall, the idea for the study really comes from listening to the patients themselves and their concerns.

What steps can we take to lower the number of patients with MS who are afraid to disclose their diagnosis?

What we focus is how the patients feel themselves about their illness. We want to know what motivates them to hide their diagnosis and what are the possible physical and psychological consequences of concealing such an important part of your identity? Patients often report that hiding their diagnosis leaves them feeling lonely, desperate, and anxious sometimes. But they also feared the negative consequences of disclosing.

These concerns are legitimate though, because disclosing your diagnosis can, for example, have negative consequences in your professional environment. That is the sad truth. Not acknowledging this is unfortunately not unrealistic. What we want is to get clinicians to be better prepared to help patients figure out whether sharing or concealing their diagnosis is the way to go, and how to best deal with the consequences of each of these choices.

Should more psychological care be crossed over with MS care?

My answer here is very clear, absolutely, 100%. It’s so important to not treat mental health and physical health as 2 separate entities. We know for many years now that those 2 types of health are not mutually exclusive. They influence each other. We know that the body and the mind interact. It’s very important for patients who were diagnosed with a neurological disease that they still get help in handling the mental aspects of just suffering from a chronic illness.

In a disease area that is dominated by disease-modifying therapies, do you feel as though quality of life issues such as anxiety and depression don’t garner the attention they should?

That’s the impression we oftentimes have. Anxiety and depression are more than quality of life issues. They are psychological and physiological states that are comorbid conditions of multiple sclerosis that need to be addressed, particularly since they’re not only experienced by a few patients, but by the vast majority. They often lead to those vicious circles where patients experience negative effect, which makes them withdraw from their social circles, and then they become lonelier and more isolated. That in turn, increases their level of anxiety and depression. So yes, I totally think those 2 need more attention or at least the attention they deserve.

How might your research springboard other types of research? Is there anything from your results that you felt needed further investigating?

We hope that our DISCO-MS study is just the beginning of a longer line of research that we are planning to conduct at our lab. There are still many questions that need to be answered. The next step will be to examine the impact that diagnosis disclosure or concealment might have directly on health behaviors in patients with MS. Do patients have a tendency to show greater treatment adherence? Do they make healthier lifestyle choices? Do they delay doctors’ visits? More or less, depending on whether they shared a diagnosis with others.

We’re particularly interested in cognitive impairment in patients with MS. There’s a fairly large percentage of patients with MS that experience cognitive impairment at a level of memory, attention, language, etc. We were wondering if active concealment might not further contribute to cognitive dysfunctions. These are patients who use concealment as such an important part of their identity, sometimes for very long periods of time. This would be 1 of the greater questions we’d like to answer in the future.

The last big question goes back to the fact that we’re clinicians also. In our lab, we have firsthand experience on how incredibly helpful support groups can be for patients, where they can exchange with peers in a nonjudgmental environment led by a trained psychologist. My advisor, Dr. Leavitt, has even found this aspect so important that she created a whole company around this.

Can you detail the DISCO-MS survey? Would you make any changes to it in future studies?

The process to create this study has been long and creating the research questionnaire was not easy. We’ve run several focus groups to get the idea that the patients have about their reasons to disclose or conceal their diagnosis. We’ve created a survey with 35 questions that has 2 parts. The first part was looking more into the regularity of concealment and disclosure just to get an idea of the prevalence of people sharing or hiding and with whom. The second part, maybe more interestingly, is to see why patients conceal and what are their actual expected consequences. Is it more at a relationship level? A professional level? Maybe there are people who don’t conceal because they see the advantage in sharing their diagnosis. That’s what we wanted to see with this survey. It’s a first step, and the aim was quantifying all the ideas we had. We got over 200 patients to complete the survey and we’re writing out the paper right now to get the study validated, as well as have a questionnaire to use in follow-up studies.

Transcript edited for clarity. For more coverage of ACTRIMS 2021, click here.

REFERENCE

Kever A, Leavitt VM. DISCO-MS survey of disclosure and concealment in MS: associations with anxiety and depression. Presented at ACTRIMS Forum 2021; February 25–27, 2021. Abstract P031.