Psychosocial Outcomes: New Horizons in Medical and Surgical Fontan Management...

Right. We're gonna shift gears completely. And, uh, I, uh, would like to introduce Stacey Morrison, who's our, uh, clinical psychologist working in adult congenital heart disease and who works in our Fontaine Clinic as well. And, uh, Stacey has been a tremendous asset. And Stacey is going to talk about the psychosocial considerations for our Fontaine patients, and there's been a lot in the literature of late, especially pertaining to neurodevelopmental interaction with the psychosocial outcomes. So Stacey, we look forward to hearing what you've got to say. I do not have any disclosures, but I do have an admission that when I first came on board, I had a pretty strong British accent, um, but some of the feedback I was getting that it was a little pretentious, so I've been working on my accent to be a little more relatable. So I just wanted to let you know there's no such thing as a British accent. Every other accent is an accent. That's right. That's right. That's right. It. So I want to talk about pretentious. It was not, it was directly for Krisha Knight. He's from South Africa. We don't, we don't own him anymore. Oh. There will be edits, yes. So I'm asked to talk about psychosocial functioning and as Doctor Veltman mentioned, there's also a strong component of the uh neurocognitive and neurodevelopmental, um, which, which is a a very large broad area of discussion as well. So we're gonna try to cram all of that in. Um, and I've selected a case presentation that hopefully will highlight some of those different areas, but in general, the psychosocial functioning is really the interplay between psychological factors which include, um, the internal processes of, um, the neurocognitive functioning, which is the, um, the cognitive and intellectual functioning as well as executive functioning. Uh, mood, anxiety, temperament, um, and also personality factors. So in the social factors, and these are just a few listed, um, include levels of social support, and that can include family supports, um, school supports for children, um, employment, um, social interactions with peers, community involvement, and, and areas where they may feel productive as, as far as their social roles. So some of the Considerations and and we're looking across really a timeline too and again I'm condensing this, but we know that the presence of a congenital heart defect and especially when you have a a fontan often results in enormous emotional and financial strain on families and this, this is a continual effect um ongoing medical care routine disruptions and for families, a lot of the unknowns, what's going to happen next, um. Can have profound impact on their early life experiences. I say that because it starts from a very early age and it affects everyone in the family, and these experiences and the impact of them resonate across a lifetime. So we also do know that children with complex CHD are at risk of neurological and cognitive impairment. Um, and Fontan patients may be especially vulnerable. I work in the, uh, we have a clinic, a multidisciplinary clinic here at Children's, um, that includes psychology, uh, developmental pediatricians, cardiologists, social work and education consultant, um, OT, nutrition, speech and language professionals, and, and we really look at children who are, um, especially vulnerable and we follow them into adulthood. And, and part of that is evaluation, consultation, and coordination of care, um, both interdisciplinary here and, and sometimes it's with other hospitals. Um, as adults, as they age, Fontan patients remain at risk for a lot of other effects, and we talked about some of the sequela earlier today, and they face significant and very unique life stressors, uh, that place them at increased risk for ongoing, uh, distress. These are some of the typical uh neurodevelopmental issues that we would see coming in clinic, and there's a wide range of course, um, and there are a, a range of risk factors as well, but in general we do see a lower IQ, uh, we see difficulty with math and, and language-based academic achievement. Um, impairments in language skills and that can be expressive and receptive language skills as far as well as written expression skills and some of that also can be the organization and planning of expression. Um, and under the umbrella of executive functioning, not only the behavioral components of that, but the metacognitive deficits. So, uh, and just to give an example of a few, the flexible attention shifting, so distractibility, as well as some of the hyperfocus and difficulty kind of shifting attention. Poor planning, organization problems, and difficulty with time management. We see this early on and as you imagine that can um play a significant role in ongoing development and um and progress in school and actually in transition uh in work life situations. We also see diminished fine and gross motor skills and this is really anecdotal, but we see a very high number of left handed individuals not sure what that's about, but we just see that, um, and working memory issues slowed processing speed we also see quite a bit of that. Diagnostically, we know that approximately 1 in 3, and this is within North America, uh, adults with CHD experience difficulty with depression and or anxiety. Um, adolescents in particular with single ventricle congenital heart disease, have a 5-fold increase in rates of anxiety disorders, as well as ADHD. Compared with their healthy control uh peers. Adults with CHD may have significantly higher risk of PTSD than in the general population, and if you think about this now and some, some of the changes that we've seen in the most recent, um, psychological DSM looking at that chronic impact over time of disruption, um. Contributes to that, and, and I will say too, just uh there was a great example in clinic yesterday, uh, it's really important to look at the impact on the family because we're seeing some parents early on that also show signs of PTSD. So some of the mitigating psychosocial factors for adults, uh, we see differences in based on each individual's body image or their own perceptions of scarring, perceived health status, or the severity of their disease, um, contributing factors of the poor social support or social anxiety. We do see a high number of individuals who have a lot of performance anxiety. Um, tend to compare themselves and feel different than others, and so they have a lot of difficulties in social situations. Communication skill deficits that again we see that early on and that just extends into adulthood and most individuals um lack awareness of how this may impact um their own self adjustment and their ability to interact with others and their coping skills. A perceived or real lack of independence, impulsivity, or poor problem solving. Ongoing difficulty maintaining employment and that can be for for physical or psychological reasons. And a contributing financial strain. And like I said, these are just a few. So I'm gonna go over a, a, a case, and this is actually a case that I share with um Doctor Veltman. So you can chime in, and this is a snapshot. So knowing that um there are a lot of different um areas of, of progression and change, and it can change very quickly. I spoke with him this morning and, and I think there are some changes currently. Uh, but at this time, this was an individual who's 15. Uh, she has a complex medical history. Uh, that resulting in a fontan. She also had other um complications as, as a young child, and many of the, the patients that we see do have feeding difficulties early on, and she did require a G tube in early childhood. Sometimes the extra medical requirements do also contribute to changes in the parent-child interactions and family dynamics as well, um. For her, she, she definitely has an extensive medication regimen, uh, and at, at the time, um, she could verbalize in her medication list, uh, was very aware of all of her medications and was reported to take it consistently and in fact, um, adaptively on the adaptive scales, uh, self-care and health management was really high. A lot of the kids that we see, um, and young adults. Who tend to be a little anxious, um, healthcare regimen, they do a really nice job of taking care of that. That's one area that they are, are very hypervigilant about. So just to give a little more background again, this is just um some selected. Uh, contributing factors. She does live in a, a rural area. She moved, um, with her mother and her 16-year-old brother. Parents are divorced and it was pretty contentious early on. Um, she does not have, uh, consistent contact with her father. She had friends in school and at this point she had recently, they'd moved, so she had lost, uh, some friends that were established and, and her closest friend had actually moved away. And so they didn't have contact either, um, but the family as a whole, they're pretty isolated, um, mom's under quite a bit of stress and, and this young lady and her mother are really pretty close, um, so she had just transitioned into a high school, um, a lot of academic concerns, a lot of them surrounding reading comprehension, math reasoning, and retention of complex academic information. A lot of them were abstract. Um, reasoning and then applied skills, written expression were difficult for her. Another really big issue is that um she missed quite a bit of school for medical reasons. Now, and I, I will say, and Doctor Veltman will probably agree that some of these were, were really. Medically based reasons and appointments, um, and then over time there was, were also. Um, increased days that she stayed home because she just didn't feel good. So, probably could have gone to school at least part of the day, but I think that kind of played back into the anxiety and, and the comfort of just being home. Uh, but because of such loss of days, she's losing instruction time and then had a lot of assignments that were piled up, um, and then missing that social interaction and, and the positive social experiences that contribute to a sense of satisfaction and a sense of competency as well. So when she came in at that at that point, um, it was for medical reasons. So she was complaining of fluttering heart, a lot of somatic body pain. She denied anxiety when, when asked in a very kind of straightforward way, um, but her mother reported that she reported feeling panicky and that she was panting, so some significant signs of anxiety. She's described in general as very um she's very meek, very self-conscious, and often very keyed up or on edge. At school she would not ask for help. They really wanted to be under the radar, if at all possible. Um, she definitely worried about missing assignments, and I think that could lead to a lot more procrastination and avoidance of school. She really did not view herself as being as capable of peers, and any talk about differences, she, she just reported feeling, uh, stupid or, or not smart. So, she underwent an evaluation with myself and with um Speech and language and also with an education uh consultant so behaviorally extremely polite, um, did arrive a bit late, um, but she presents as very cooperative, uh, very soft spoken it's very difficult to get her to, uh, to engage she doesn't really initiate. Um, and on any of the verbal components there's a lot of, um, query and exploring to try to get a little more information from her. Definitely if she was not very sure of the answer, she was hesitant to take a guess, um, and then any of the nonverbal, her approach was a little disorganized, um, she definitely seemed anxious and anytime things became more challenging, she tended to shut down, become tearful. Um, and appeared embarrassed, and this was across, um, behavioral observations very consistent across testing situations. And I think there's a polling question related to this case, so you can go ahead and put that out. So evaluation results, this is fairly common with what we see, um. With the WISC 5, which is a standardized cognitive measure, her full scale IQ is 82, which falls in the low average range when compared to other children her age. So in within that we look at um different indexes and how she may perform um in different areas. So her, her verbal was in the average range, nonverbal in the low average range. Her weakest areas of performance were working memory and processing speed again, which is pretty consistent with what we see. Um, academically. Her stronger areas in basic phonetic decoding, reading accuracy, sentence completion, spelling, numerical sequencing, so, so basic rote skills. However, with the higher level, um, reading comprehension, reading fluency, she still reads slow, has to reread things for accuracy as far as her understanding, um, difficulty with math calculation, reasoning, and definitely with listening recall, so the. In effect, this is someone who, when she's in the classroom, um, she often feels overwhelmed, very anxious, um. And feels like she's really behind the eight ball pretty much at all times. She has a difficult time processing what's being instructed, feels like it's going too fast for her, but doesn't ask questions, often does not bring home materials that she needs or even um the, the actual assignment requirements because she has a hard time, um, copying things from the board and keeping up with things in her planner. So all of these things contribute again it's these are low level issues, but contributes to um further withdrawal and feeling of inadequacy. She, she also reports a high level of test anxiety, so her mind goes blank. She has difficulty recalling any information. Oh Sorry, I'm going the wrong way. Here we go. So the other diagnostic rating scales that we used, and these were uh distributed to school personnel, her mother, and, and she did some as well, uh, significant executive dysfunction, and we use, um, a brief rating scale is actually that's the acronym, so, um, to look at different areas of executive function, pragmatically, functionally how they would represent across settings. So she had significant difficulties in some of the areas of organization planning, initiating, um, task uh persistence and attention dysregulation. So she definitely met criteria of ADHD, predominantly inattentive presentation, not the hyperactive or impulsive components of that. Um, Additional ratings indicated significant levels of anxiety and somatic or health related complaints, uh, which is very understandable, and again it comes up quite often with the kiddos that we see. Um, a lot of dysphoria as well, uh, sense of inadequacy. Um, and all of this in, in combined, uh, was best represented with a diagnosis of a generalized anxiety disorder. So as far as the um the care plan, initial care plan, so we bring the, the um family back and go over the results and then talk about that. Um, An extent we encourage them to pursue ongoing counseling and that could be with myself, which may be a little unrealistic given the distance that they drive, um, so there are also options that were given close to home. This was a very closed in family, so other than medically presenting. They weren't really likely to come in even though a lot of encouragement and, and they did voice that they were interested, but they did not come back in for uh for psychotherapy. Yes, to wrap it up sort of soon so we can get some time for questions and I think this space will generate a lot of time. Yes, I will say that the, the most effective thing that the, the school was willing to do, which is phenomenal, they were willing to really work with the family on a um. Accommodating the school plan, so she had a shortened school week hoping that it would allow time for medical planning and appointments, but also condense the time of actual instruction so. The days that she that she was there 3 days a week, partial days, and so really highlight the level of core instruction at that time and then also relating that um she had assistance in those areas of cops instruction so she could demonstrate mastery without excessive assignments compiling. So we can stop there and get questions. Do you wanna, uh, show the poll questions, Todd, at this stage? So, uh, 40%, uh, based on your case presentation, 40% said, um, that the, the psychosocial factor that may impact patient outcome is limited social support. 40% said low self-confidence and performance anxiety, and 20% said other. They're all correct. Because the way that it was set up was really to highlight that all of those are contributing factors. So all of the components that are listed are actually contributing factors. Um, now, which, which plays more of a role, um. Really would be dependent on where the family's at. I think that I do think the isolation is a significant part because it also plays into again that low sense of competency and further social withdrawal, um, and not integrating them back into the community, um, so absolutely that's a huge factor, but all of those points listed do contribute. As we, as we, um, learn Nicole and, uh, Anisa's talk, uh, uh, uh, Stacey, can I ask you, you know, uh, I am often shocked by the information that you provide on my patients, and it feels like I don't know them at all. And, uh, uh, um. Is there any advice you have for us as, uh, cardiologists, as practitioners, when someone walks into the room, you've got them for 1520 minutes, half an hour. There's a lot of medical stuff to get through. How do we begin to have just an approach to dealing with this, um, and not missing clearly the importance of this as in, in, in our, in our mutual patient? I think the key factors is assume that they're going to have adjustment issues. Assume that, right, because one, assuming that it normalizes it. Right, so it, it really gives credence to what challenges they, they do have, and it starts that conversation very early of, so you're not, you are not isolated and selected for emotional or mental support because you're, you're not doing well in these areas. It's equal opportunity. This is actually a, a basic part of our care plan is emotional and mental support. Is that something that you would be interested in? And you make that assumption very early, but having those conversations very early because there's still a lot of um misconception about what that represents. It is very important and that's why we start having those conversations very early on with parents as well to normalize that even from their perspective. You are juggling a lot. This disrupts work. It disrupts the entire family. How are you doing? So asking them what is it, what works for you, I think is another solution focused approach is what is working because when we tap into that, we're tapping into their strengths. No, I can't emphasize that enough. Thanks, Stacey. I think it's really important. We'll move, if that's OK, Todd, to the next bit, and we can hopefully accommodate some of the questions as we go along. Yeah, and if we can't get to all the questions, there were some for Dr. Twaddle, then we can ask him, uh, and he can answer these through the text chat at the end. So.