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Tools to Alleviate Isolation, Life Disruption From COVID-19 in Patients With BD-I
In Part 1 of this video, Vice President of Advocacy for the Depression and Bipolar Support Alliance (DBSA), Phyllis Foxworth, discusses the recent Harris Poll survey conducted on behalf of Alkermes and the Depression and Bipolar Support Alliance (DBSA), which examined the burden on people living with bipolar I disorder. Foxworth addresses how the COVID-19 pandemic has exacerbated feelings of isolation in patients with bipolar 1 disorder (BD-I) and tools for clinicians who are treating these patients.
Read the Transcript:
Phyillis Foxworth: Hello. My name is Phyllis Foxworth. I serve as the vice president of advocacy for the Depression and Bipolar Support Alliance, often and commonly referred to as DBSA. DBSA is a peer to peer led organization for individuals living with mood disorders, being bipolar disorder and depression. We are focused on providing resources to improve the wellness of people living with these disorders.
We believe that mood disorders are highly treatable, and that people can and do live quality lives. So I hope that the information I can share about some of our resources today will be helpful.
Question: COVID-19 has made many folks feel isolated. The study found that “Approximately 4 out of 5 respondents (81%) agreed that they felt like no one understands what they are going through living with BD-I.” And “More than three-quarters of respondents (77%) agreed that living with BD-I makes them feel isolated and alone.” How has COVID-19 exacerbated these issues?
Foxworth: In a recent Harris poll in partnership with DBSA and Alkermes it was revealed that COVID 19 has made many folks feel isolated. The study revealed that approximately 4 out of 5 respondents, 81% agreed that they felt like no one understands what they're going through living with bipolar one.
More than three quarters of the respondents, 75% agreed that living with bipolar one makes them feel isolated and alone. So isolation is definitely taking a toll on people living with mood disorders, depression, or bipolar disorder in our community. I'd like to point out that the study also revealed that respondents living with bipolar one who had been employed or in school, 51% of those said they were less productive at work or school. So, this doesn't surprise me at all.
During a 3-year period DBSA conducted studies into the peer community to understand the impact of living with COVID. Again, start over again, sorry. During a three year period, DBSA conducted a study to understand the impact of living with mood disorders. This was before COVID and what that survey revealed and the work that we had done with a patient focused drug development meeting and focus groups, was it revealed that the impact of living with a mood disorder affects the natural progressions of life events.
People said that their academic pursuits were delayed or never completed, and they also said that they failed to live up their full potential professionally. So, it's not surprising that 51% of them said they are less productive and that this is having an impact on them.
Q: What areas of patients’ lives are being most disrupted and what tools could help alleviate some of those shifts that they're feeling?
Foxworth: So as the study pointed out, isolation is a major challenge facing people living with a mood disorder. Even before COVID that same body of work that I shared that DBSA had previously conducted, we learned that the major impact of living with a mood disorder is that relationships are destroyed. So living with COVID has the potential to exasperate this challenge. We have an over reliance on virtual communication, such as text messages, email, and social media. And these really aren't good substitutes for in-person communication. Often this type of communication doesn't provide the social cues and feedback that the face-to-face communication can have.
And so written text messages are often misinterpreted, emails are often misinterpreted for tone. In addition, this over reliance on social media is displayed images in videos that really exasperate the FOMO phenomenon, the fear of missing out. So, people who are living in isolation because of COVID and because of their mood disorder have the potential of seeing other people getting on with their lives.
And this continues to foster that feeling of isolation among themselves. So one of the things that people can start doing is picking up the phone. Phone calls are extremely important. I myself have noticed that I am talking to friends on the phone much more often than I had in the past. I never used the phone as that reliance. It's kind of an old fashioned technology, but in this case, it really is a revolutionary technology. Having that 2 on 2 communication, instead of one-way communication can really alter your sense of isolation and loneliness.
Another significant area of disruption is how people receive clinical care, before COVID people receiving clinical care in person. So fortunately our government acted very quickly in the spring and summer of 2020. And they allowed for billing of mental health services at the same rate and fees that the people were receiving in-person services. This allowed people to continue to see their healthcare professionals or mental healthcare professional while they were at home. It also revolutionized the way that we are receiving mental healthcare.
So many people are now getting their mental healthcare virtually with their clinicians. There are obviously some benefits of that, but there are also some downsides of that. One major benefit is that anecdotally many clinicians have told me that their no shows, their no-show appointments have dropped significantly since they've been giving virtual appointments.
DBSA back in the summer of 2020 did our own survey, very small survey of our community and asked them how they were transitioning to virtual. And most of them had never had virtual appointments, but it showed that they were embracing it and that they were open and willing to take on this new technology. But I will say that there are some downsides, for example, so many of the partial hospitalization programs and the intensive outpatient programs are now virtual.
And as we know, those programs are intended for people who are in severe crisis and need a higher level of treatment. And virtual may not always be the best for them as opposed to in person. So it's really important that we have a balance.
It's important that we meet people where they're at that if they find that having a virtual appointment with their clinician works well for them, it enables them to keep the appointment that they otherwise might not have kept because of the concerns about being around others during COVID and traveling during COVID, those are great, but we also have to keep in mind that as a healthcare community, we have a responsibility to meet people where they're at.
If a patient does better and is asking for in-person face-to-face communication, those services need to be provided to them equally.
Another area of impact is understanding the need for self-care. This means developing your own wellness toolkit that fits your particular needs. There are many wellness tracker apps that are available. These are online. They enable a person to track their overall health, including their mood disorder symptoms and physical health and incorporating all of this into their entire lifestyle. DBSA has a wellness resource called the Wellness Tracker. And it enables a person to evaluate their strengths and areas for growth along factors such as physical, financial, social, and spiritual wellness.
So again, when you are in an area of isolation, it can be the silver lining. It can be an opportunity for personal growth for an individual. They can take this time to look at some of the wellness resources from DBSA such as the Wellness Wheel, wellness tracker apps that are available, to help them develop their own wellness toolkit.
These resources also help the clinicians have more productive appointments.
When individuals are using wellness tools, they can share their progress with their clinicians and talk about areas that are their strengths, areas where they want to improve. Another very important tool is support groups. DBSA is one of our cornerstones of our organizations is our network of chapters who provide support groups around the country.
Back in March of 2020, most of those chapters very quickly pivoted to online support groups, making this invaluable resource extremely available to everybody, regardless of what the circumstances were in their own community.
So, in addition, nationally, DBSA provides support groups at the national organization around the countries. So outside of the chapter organization, people can attend a DBSA support group. Before COVID, we had six national online support groups. Since then, today we have 45 online support groups and our waiting list for those support groups is around 78 people per support group. So, you can see the need for more online support groups in the era of COVID is extremely important.
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