The Role of Social Determinants of Health in Epilepsy-Access to Care: Telemedicine, Adherence, and Resources in Rural and Urban Setting

Video Transcription

I'm Chris Ryan from Boston Children's. It's great to be here tonight to talk about the importance of psychosocial screens. So I have no disclosures.  So tonight's learning objectives, it's my hope that you'll be able to recognize how psychosocial screens may complement care and be a complement to any screening tools  you're already using. I hope you'll be able to assess which patient populations should be referred for proactive screening. And then finally, it's my hope  you'll be able to design your own screens to help identify potential barriers and to leverage available supports. So a little background.  You know, there's certainly a large body of literature that I suspect you all are familiar with detailing a number of factors, epilepsy-specific factors,  that could lead to access problems and potential barriers to care that point to the need for comprehensive screenings. And, you know, these include, among many others,  these include the mental health comorbidities, the significant financial burden, and then, you know, the larger structural barriers  related to economic and racial disparities in care. So Lindsay talked about some of the screening instruments that she uses. You know, we screen for quality of life.  We also screen for depression and suicidality. And, you know, these are important aspects of care. However, they only tell part of the story, you know, and I believe they work best  when they're combined with a more broad psychosocial screen. So what information can we find from psychosocial screens? You know, first we want to identify  and understand existing supports that we can leverage. You know, these supports can come in many forms, extended family, faith, and other communities, online supports.  You know, they can be community-based mental health providers. We also want to identify what strengths our patients and their caregivers bring to treatment, right?  And I think it's important to highlight, you know, examples of resiliency, you know, because, you know, I think that this can be really affirming, you know,  and is often missed by caregivers and patients when they're navigating these complex diagnoses. And, of course, we also want to identify stressors  that could be potential barriers to care. So just to sort of illustrate some of these stressors that may represent barriers, this is a review of some unpublished data  that we've collected from a review of our Phase I population. This is a group that we do automatic screening. And I think this illustrates quite nicely  sort of the wide range of stressors that we see from, you know, patient behavioral health to education concerns, lack of available services, language barriers.  You know, and not all of these end up being barriers to care or impact care, but they all have the potential to do that. So it's important to understand what they are.  So when should we be referring for screening? So I want to talk a little bit about the difference between referring for screening when a problem or a barrier has been identified  compared with when we have the opportunity to automatically refer for proactive screening. So certainly when an issue, a barrier, a problem comes up or is brought up by a family,  it's important to refer for additional screening. You know, because, you know, it's quite frequent that these presenting issues are really a symptom of a larger issue, right?  You know, so, for example, concerns about treatment adherence may be more about access, right? It could be transportation. It could be homelessness.  It could be a family's immigration status, health literacy, distrust of the health care system. Okay? And so these screens can really tease out more information  and identify a strategy of support and provide really valuable information to the care team. You know, and so in addition to being able to provide resources  around, like, basic needs, you know, housing, homelessness, food insecurity, there should also be an epilepsy-specific toolkit of resources that we can tap into  and epilepsy-specific advocacy resources.  So now let's talk a little bit about when we can proactively screen. So I think really the benefits of proactive screening first  is that we get the opportunity to get ahead of things, you know, before they impact care, right? But I think more importantly, this proactive work starts to build a dialogue  with our families, right? It reinforces the discussions that we should be having around the broader effects of epilepsy. Right? The behavioral health comorbidities,  the learning issues, the financial impact, and it introduces to families that idea about navigating these supports and resources that they may not be aware of.  So I recognize that we certainly can't screen all of our patients, but I think we can all think about certain groups that would benefit from proactive screening, you know,  whether it's a new diagnosed patient, certain diagnosis with high acuity, patients that are due for major interventions. You know, another benefit of these proactive screens  is that they can be customized to tease out important information that the care team needs. So, for example, we proactively screen all our ketogenic diet patients,  and for that group we have the ability to do additional screening around food choices and eating. So, you know, we want to understand if there's problematic food behaviors,  if there's any food or food access or food insecurity. We also want to understand, like, what are the cultural considerations and family preferences around mealtime and food.  So now I want to show you an example of one of these assessments. So this is for another group that we proactively screen all our patients considering surgery.  So they're screened during their Phase I admission, and these assessments are summarized and included in their epilepsy surgery conference weekly presentation.  This one happens to be of a 12-year-old female who came through last year who had multiple psychosocial stressors, which I'm not going to go into now.  First I want to go through the different domains. You know, so first we want to understand what the family system looks like and any stressors related to that.  Are the caregivers on the same page? Who are the caregivers? Who has custody? Who has the ability to consent? If the patient is an adult, can they consent to their own treatment  or do they have a guardian in place? We want to understand the financial picture of the family and any gaps in insurance. You know, would a long surgical admission  really complicate an already stressed financial situation or do gaps in insurance coverage have the potential to impact the workup? We want to understand the education services  and whether or not any advocacy is needed for additional services related to surgery. And importantly, we want to understand how much the caregivers know about advocating  for school services and if they need support with that. We want to understand coping. You know, certainly we want to understand any mental health or behavioral comorbidities,  but we want to really understand, like, how is this patient and their family coping with the prospect of moving through surgery  and what would they need to help them through that process? So would the family benefit from connecting with another family that has already been through surgery  to discuss that experience? Would they benefit from a referral to a mental health provider? Do they have a mental health provider, but does that person need some context  of what the patient's going to be going through to help them prep? We always give examples of the stressors that are identified by both the patient  and their caregiver because they're often quite different. And then we summarize the assessment for the team, and then we detail any interventions  that are needed for the surgical workup. And then finally, we include the scores from the quality-of-life instrument that we use for our Phase I's.  Now, I've taken the same assessment, and I've highlighted some of the potential barriers and supports that we identified as a result of this screen and then the recommendations  that we made in any interventions. So these were divorced parents who shared legal custody, but the mother reported during the admission  that she was petitioning for custody changes, specifically about medical decision-making. There was significant financial stress and major gaps in insurance coverage  that were going to be a complicator for the workup. This patient had pretty significant impulsivity and low frustration threshold, and she struggled during the Phase I.  These parents had a real long history of conflict and disagreement, including about basic aspects of her medical care. And the maternal grandparents and the child's therapist  were identified as key supports. So the mother identified the parental conflict, the insurance issues, and the patient's behavior as her main stressors,  while the patient identified lifestyle restrictions as her main stressors. So, you know, this is certainly a family with multiple psychosocial stressors,  but some important supports that were already in place. So for recommendations, you know, we want to obviously confirm the custody  and the parental consent prior to surgical scheduling. We made outreach to the patient's therapist to assist with surgical prep, and then to complement that,  we referred to our hospital behavior response team to develop a behavior plan for future admissions. And then we provided benefits education materials to this mom  and then actually referred her to our financial counseling office to explore secondary insurance. So in conclusion, it's my hope the key takeaways for you of this presentation  will be to refer to social work for screening early if you have the opportunity to do so. High acuity and new onset populations benefit from automatic referrals.  And then these psychosocial screens really may complement any existing instruments that you're already using, you know, as they provide context and richer details. Thank you.

Video Summary

Chris Ryan from Boston Children's highlights the significance of psychosocial screenings in patient care. These screenings can enhance existing tools by identifying potential barriers and leveraging support systems. Ryan emphasizes the importance of proactive screening, especially for high-risk groups such as newly diagnosed patients and those needing major interventions, to address issues before they affect care. Screens help recognize support networks, patient strengths, and stressors that could hinder treatment. Ryan illustrates with a case study how screenings inform care teams and provide tailored resources, ultimately recommending early social work referrals for high acuity and new onset populations.

Asset Subtitle

Presenter:

Christopher Ryan, MSW, LICSW, Clinical Social Worker, Division of Epilepsy & Clinical Neurophysiology at Boston Children's Hospital. Chris has been with Boston Children's for over ten years supporting patients, their families and the multidisciplinary team with the psychosocial aspects of care of epilepsy. He has clinical interest in the comorbidities of epilepsy with a focus on mental health and coping interventions, as well as supporting the educational and transition needs of this diverse patient population. He is involved in ongoing research to support new interventions and innovative care. In addition, he's also involved with the larger social work community as an adjunct professor at Boston University Graduate School of Social Work.
LinkedIn: www.linkedin.com/in/chris-ryan-a04b50

Keywords

psychosocial screenings

patient care

high-risk groups

support systems

early social work referrals