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Research sheds light on emotional changes in MS - Interview with clinical psychologist/researcher Dr. David Rintell

May 24, 2013

In proclaiming May as National Mental Health Awareness Month, President Barack Obama sought to “shine a light” on the mental health problems experienced by tens of millions of Americans. Emotional changes may be a major concern for people with MS. Clinical psychologist David Rintell, EdD (Brigham & Women’s Hospital, Boston) addresses these issues with people with MS in his practice, and has been funded by the National MS Society’s Health Care Delivery and Policy Research (HCDPR)program to study ways to help enhance mental health to people with MS.

Do we know enough about emotional changes that can impact people with MS?
Dr. Rintell:
No, and it’s surprising, considering how prevalent depression and other mental health problems are in people with MS. Very little has been published about what people with MS are looking for in terms of mental health care, and how they feel about the care that they are getting. These types of health policy studies are crucial if we want to improve that care.

What kind of research funding does the Society provide to address these issues?Research - Restore button
Dr. Rintell:
That’s precisely what the HCDPR Program does – it addresses the mental health challenges that MS presents by providing funding to investigators to study that care. The findings of studies like ours are used to provide information to people with MS, caregivers, lawmakers, insurance providers –everyone involved in the process of providing and managing MS care.

What did your project involve?
Dr. Rintell:
We were funded by the Society’s HCDPR program to identify what people with MS would consider high quality mental health care, and what obstacles may keep people from getting it. Using questionnaires and focus groups, we surveyed the mental health care experiences of thousands of people with MS.  We narrowed these down to determine who had received mental health care in the previous two years, and of those, recruited about 50 people to explore their experiences in focus groups.

So, what is important to people with MS when it comes to mental health care?
Dr. Rintell:
People with MS wanted mental health care to be addressed immediately at diagnosis – this is very important for clinicians to understand. The diagnosis itself can be so overwhelming – one participant said it felt like “my whole world came crashing down.” People wanted to work with someone who was familiar with MS. They were frustrated if they had to educate the mental health care providers about the disease. Participants also noted that it was helpful to include family members in mental health treatment.

How are these results being used to enhance mental health in people with MS?
Dr. Rintell:
The Society has moved in a direction that is fully aligned with the findings of our study – providing support early on to individuals diagnosed with MS and their families. They have developed a training program that targets both mental health and non-mental health clinicians; I have conducted the training program with over 100 mental health providers in New England.  I’ve also developed and tested an intervention for newly diagnosed patients and their families, which we are getting ready to disseminate.

Read more about how research funded by the Society’s HCDPR program helps restore function to people with MS.

Read more about emotional changes that people with MS may experience, and resources provided by the National MS Society, including the MS Navigator program.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.


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