Study Spotlight: Patient Activation and the Psychosocial Impact of Multiple Sclerosis

The role of the neurologist in the care of patients with multiple sclerosis (MS) often necessarily extends beyond diagnosis and therapeutic selection. A strong relationship with patients not only increases their understanding of the disease but also offers insight into the extent to which their lives are affected by it. A recent study examined the psychological impact of MS on patients through the prism of patient activation. Ahead, study co-author Marie-Christine Goodworth, PhD, Assistant Professor of Psychology at George Fox University in Newberg, OR, reflects on the importance of identifying the needs of patients and their families while offering strategies for increasing patient activation.

How important is it for neurologists to engage MS patients with regards to how the disease impacts them psychologically?

“It is well documented that MS is associated with physical symptoms, but also with psychiatric symptoms, especially depression,” explains Dr. Goodworth. Moreover, prevalence rates can be as much as 50 percent higher than patients with other neurological disorders, according to Dr. Goodworth. Additionally, increased physical severity, perceived cognitive dysfunction, and illness intrusiveness are associated with higher depression and anxiety, she notes. “We also know that higher levels of anxiety and depression prevent people from managing their illness. So it is very important that neurologists engage at both the physical level and psychological level in treating MS.”

What are some of the psychological comorbidities of MS and how much should clinicians weigh these factors when it comes to treatment?

MS has been associated with depression and anxiety, but Dr. Goodworth points out that it is also associated with psychosis and mania. “When it comes to treatment, it would be important to routinely assess for psychological comorbidities so that they can be treated alongside the physical symptoms of MS,” she says. This is especially important because psychological comorbidities can seriously affect a persons’ ability to adhere to treatment, Dr. Goodworth points out.

The recent study you co-authored centers on the notion of “patient activation.” Can you describe patient activation and its importance within the scope of MS?

“Patient Activation describes how much patients believe they play a role in managing their care and collaborating with providers, how much they know how to manage their illness, and how much they have the skills to do so,” says Dr. Goodworth. “Since MS is a chronic illness with very involved treatment regimens, knowing how ‘activated’ a patient is in his or her health care is of central importance. The more activated a patient is, the better he or she will manage MS and the better medical outcomes will be.”

Your findings indicated that Quality of Life (QOL) was not related to patient activation. What does this teach physicians about nuances of the relationship between patient and disease?

“The findings of our study suggested that QOL was not related to patient activation over and above depression and other variables,” she explains. “This does not necessarily mean that QOL is not related to patient activation overall, but that other things, such as depression, are more salient when it comes to patient activation and are therefore either greater barriers to (i.e., having depression) or positive factors in (i.e., not having depression) patient activation,” Dr. Goodworth imparts.

Should neurologists be prepared to interface with psychologists and/or psychiatrists when it comes to managing depression in patients with MS?

“Absolutely,” Dr. Goodworth suggests. “I worked in the MS clinic as a post-doctoral fellow with MS researcher Dr. Lara Stepleman, Director of MS Psychological Services at the Augusta MS Center. We were an integral part of the treatment team and were available for consultation, risk assessment, and treatment of depression right there in the clinic. Having multiple disciplines addressing the needs of MS patients is vital for patient well-being.”

Can you discuss how increased healthy literacy could have a positive impact on a patient’s willingness to seek and adhere to treatment?

Health literacy is an important aspect of treatment because, Dr. Goodworth suggests, it can help patients with the knowledge they need to be activated in their care. “In our study, we found a strong association between education and patient activation, so ensuring patients of all education levels are understanding the complexity of MS and their treatment can likely make a difference in adherence.”

What tips would you offer to physicians on increasing patient awareness of MS and the importance of seeking treatment?

“We all use different coping mechanisms when faced with difficulty and sometimes we use avoidance (part of depression and anxiety) rather than problem solving and engaging in our health,” Dr. Goodworth says. One way of engaging patients in the clinic is to allow them and their families to be exposed to MS and its treatment in a non-threatening way. For instance, she notes, “the Augusta MS center had an MS day for patients and family members to better understand the illness.”

Can you suggest any strategies for physicians when it comes to communicating with patients with MS to ensure a strong doctor-patient relationship and optimal outcomes?

A collaborative approach in which patients are partners in care can be empowering for them to assert a role in the treatment planning, according to Dr. Goodworth. Helping them gain the skills and confidence they need to follow-through, through patient education sessions, support groups, etc., is also helpful, she suggests. “Patients who are more engaged in their care may sometimes take more time at their appointment and ask more questions, but ultimately they will have better health outcomes.”

When it comes to facilitating a better connecting with patients and understanding their quality of life, routine assessment of activation using the Patient Activation Measure is key, says Dr. Goodworth. “Patients with lower levels of activation would benefit from more focused health education, communication, and skill building. Second, it is important that patient psychosocial needs are addressed and supported. Finally, patients further benefit when physicians pay attention to the needs of family members and caregivers who play a key role in helping patients manage MS.” n