Closing the Patient-Clinician Gap When Defining Progress and Outcomes in Mood Disorders
In Part 2 of this video, Vice President of Advocacy for the Depression and Bipolar Support Alliance (DBSA), Phyllis Foxworth, discusses how clinicians and patients can work together to more closely align their goals and outcomes when treating mood disorders, and explores realistic expectations for treatment and tips for family and friends of patients with BD-I during the ongoing pandemic.
Read the Transcript:
Question: You talked about clinicians and with telehealth and things like that, but is there anything else that you'd like to share for clinicians treating these patients?
Phyllis Foxworth: I think it's important for clinicians to recognize that there's a potential gap between how peers define progress and how the mental health care team defines progress. DBSA (the Depression and Bipolar Support Alliance) recently published a paper on the work that we have done to understand how peers define wellness and the impact of the condition on living. That's been published in the Journal for Affective Disorders.
As background for that paper and as background for leading up to why that work was done, we did our own systematic literature review. And what we discovered was, for example, one peer reviewed paper said that patients reported more mood, physical, and cognitive symptoms, and a higher impact on psychosocial functioning in the post-acute and remission phases than their clinicians did.
They also reported worse quality of life and greater levels of functional impairment than their clinicians did. So there's this gap between how a patient defines their progress and how a clinician is defining their progress. With regards to treatment goals, the same paper identified that healthcare providers ranked relapse detection and reduction in suicidality as the primary goals for psycho-education. Patients on the other hand, desired support with stress management and improved quality of life.
So, you can see that even what they're seeking around treatment, there can be this potential gap. And with the same paper, what I will share is most concerning is that almost half of the sample of the patients meeting criteria for symptomatic remission did not consider themselves to be in remission. So I think it's really important, especially in times of COVID, that the clinical community understand that there is this potential gap between the perception of their patient feeling that they're getting better and their observation of their patient getting better.
One reason for that might be is that in our own surveys, DBSA found that while 87% of the patients said that improved functioning was their desired outcome from treatment at the same time, 60% of them said that their physicians and their clinicians were focused on symptom reduction.
So I challenge the clinical community to get to know your patients. Ask them what treatment outcomes they are seeking and understand that it may not necessarily be the reduction of symptoms, that reductions of the symptoms is important, but reduction of symptoms could lead to a better outcome for your patients. But their ultimate outcomes goes back to what we talked about earlier in the impact: improved performance and reaching your full potential professionally, reaching your academic aspirations, and improved and maintaining quality relationships.
Question: What tips do you have for family and friends of patients who have bipolar disorder during the ongoing COVID 19 pandemic?
Phyllis Foxworth: In addition, families of people living with mood disorders during COVID are facing their own challenges. I will go back to the survey that DBSA conducted several years ago. What we learned was that of the people that responded to the survey, in addition to identifying that they've lived with depression or bipolar disorder, they also overwhelmingly identified themselves as a caregiver.
You can imagine the stress and trauma that can be going on inside of a lockdown household when they have 2 individuals that are both living with mood disorders, one that is a caregiver that has their mood disorder manageable and another who may not.
So it's really important that we understand what the individual with the more active symptoms is going through and learn how to be supportive for them. DBSA has many resources to help individuals, to help family members. We have family and friends support group meetings. We have several that are offered to our online national organization, and we also have several offered to our chapters. I, for one participate and facilitate a DBSA family and friends support group. And we have people from all over the country who attend that support group. So one of the biggest tips that I have for people who are family and friends of people living with mood disorders and how to best support them is to take care of yourself first.
It's really important that you maintain your own mental health during this crisis of COVID pandemic. It's through taking care of yourself that you are in a better position to help and support that loved one. And remember the difference between support and doing, support means not doing for individuals or telling individuals what they should do, but asking them how you can help them and be willing to provide the help that they're asking for.
