But I want to thank you all for coming to the Dr. Molnar presentations for 2022. It's nice to be back in person. I think the last two years we were on the computer, so it's always nice to get back in person. So, thank you very much. Before we start, I want to remind everybody about the American Board of PM&R, our Pediatric Rehabilitation Medicine Survey. It's been about six to nine months at the minimum of work just to try to get that survey pushed out. It takes about 30 minutes to complete. I appreciate your time on that. It's very important because if we're going to get rid of the 10-year exam, which everybody wants to get rid of the 10-year exam, we need to come up with a new content outline for a new exam. And this survey is what we're going to make the new exam from. So, we all want to get rid of the 10-year exam and go to LAPs by 2024, if at all possible. Maybe sooner, but the more people that do that survey and answer those questions, we'll get it done. So, if you didn't get a survey, please let me know right away. A number of people haven't, but it's one of those kind of one-in-a-lifetime things to get done to define our field and write the new examination. So, I appreciate your 30 minutes of doing that. All right, now we'll get right into it here, please, again, and thank you. We'll have Dr. Azizi come up here and introduce our first speaker. Thank you. Hello, everyone, and welcome. My name is Hanna Azizi. I'm a pediatric physiatrist at Columbia University. It is my great pleasure today to introduce Dr. Ed Hurwitz. Dr. Hurwitz is Professor of Rehab Medicine and Department Chair of Physical Medicine and Rehab at the University of Michigan Medical School. His clinical and academic focus has been on individuals with CP and other brain-related syndromes that start in the childhood years, including adolescents and adults. His current work focuses on body composition and fitness in children and adults with cerebral palsy, as well as overall health and function in adults with CP. In 2013, the American Academy of Cerebral Palsy and Developmental Medicine recognized his work with the Chamber's Lifespan Award. Dr. Hurwitz co-founded and co-directed the CP Research Consortium of Michigan and the International Cerebral Palsy Health Promotion Group. He has been funded for research as a PI or co-PI from many places, including NIH. He is on the Executive Committee of the CP Research Network, a national effort to establish a registry of individuals with CP. He is the winner of the Molnar Award in 2020 for his work on feasibility of adding grip strength measures to body composition assessments in individuals with CP. And he will be speaking about his research on this topic over the past two years today. Please welcome Dr. Hurwitz. Thank you, Hannah, for that very generous introduction. So I'm pleased to be able to speak to you today about the work that we've done with the Molnar grant, for which we're very appreciative. So we're going to be talking about feasibility of adding grip strength measures to body composition assessments in individuals with cerebral palsy, mostly adolescents and adults. And I really want to thank all of my co-investigators in this, particularly Dr. Tomoko Sugiyama-Baba, who is sitting here. Dr. Baba, wave your hand. Um, there she is and she's visiting from Japan and she's been instrumental in this research. Uh... Okay. So I gratefully acknowledge the funding for this project from the Foundation for PM&R, the Gabriella E. Molnar-Swafford Pediatric Research Grant. And there's no conflict of interest. Alright. So the first thing I want to say is that aging with cerebral palsy brings significant challenges. Now I also want to say that in 2016 the Cerebral Palsy Research Network joined with CP Now to get a PCORI grant to look at priorities in research in cerebral palsy. Joining with community members, people with lived experience, as well as clinicians and researchers. And some of the top priorities that came up was looking at health outcomes in adults and trying to solve the problems that face people with cerebral palsy as they grow up. So this research does grow out of a participatory action form of research where we had a lot of input from community members. So as people age with cerebral palsy, they note progressive motor impairment related to their aging, increased secondary behavior, inadequate muscle and bone development, impaired glucose tolerance, increased visceral and musculoskeletal adiposity, and a result in increased age-related... increased risk of age-related secondary chronic conditions. The graph that you see there is from a paper that was published in JAMA led by Dr. Mark Peterson. I'm also one of the authors. Our group put this paper out. The bars in blue are the people with cerebral palsy. The bars in yellow are the people that are typically developing without cerebral palsy. And there's a list of conditions there and you see that the people with cerebral palsy had higher prevalence of all of those conditions. Not just musculoskeletal, not just cardiac, but even things like asthma, emphysema, which we assume is somewhat related to inflammatory mechanisms, which come from obesity, sedentary behavior, and this kind of thing. But it certainly is something that's challenging for adults with cerebral palsy. The other problem is that the standard screening for risk of chronic disease is hampered by the complexities of the anatomy and physiology of adults with cerebral palsy. Here's some examples. Looking at BMI, it's not accurate because of the low muscle and bone mass. So somebody could have 95 percentile body fat and have a normal BMI and have had high cardiac risk. Kidney function is hard to measure. The EGFR is a poor measure in adults with cerebral palsy because of their low muscle mass leading to low creatinines, giving people with kidney failure relatively normal GFRs. You have someone come in with a creatinine of very low, 0.2. A year later they're at 0.9. They're in kidney failure, but their EGFR is nice and normal. So that's another example of a screening mechanism that is problematic. Bone mineral density is a poor predictor of fractures due to differences in bone structure that come right from the pediatric population. And there are many other examples. So looking for risk of chronic disease, measuring risk of chronic disease is a challenge in adults with cerebral palsy. So we wanted to explore grip strength as an option. Why grip strength? Grip strength is an established biomarker of health in the general population. Weak grip is associated with an increased risk of functional disability, fracture, cardiometabolic disease, musculoskeletal morbidity, and early mortality. Grip strength is highly correlated with other measures of strength and with body composition in the general population, but we don't know much about grip strength in people with cerebral palsy. Would it be a good measure? Is it something you can do easily in clinic? Is it something that people with cerebral palsy can do? So the primary objective of the study was to determine the feasibility and reliability of grip strength in the clinical setting among adolescents and adults with cerebral palsy. The secondary objective was to examine the associations between grip strength with demographic variables, anthropomorphic measures, and chronic disease prevalence. The long-term goal would be to have a set of measures that can assert... that can assess risk and the effects of intervention on risk of disease. The participants were individuals who were greater than or equal to 16 years of age with cerebral palsy that attended our clinic. All functional levels of the GMFCS and the MACS and the CFCS were considered. We measured... We excluded people with significant cognitive impairment, receptive communication impairment, severe behavioral disorders that interfere with participation in tasks with verbal instructions, and people with orthopedic or other types of hand conditions that prohibited hand grip strength testing. So we measured grip strength using the Jamar hydraulic hand dynamometer, which I had a picture of in just a couple slides ago. We did a maximum grip strength of three trials per hand. The one... Both hands and the one that was strongest was used for analysis. We looked at lean body mass using the tricep skin fold for thickness using this device and we looked at the association between grip strength and age, sex, the gross motor functional classification system, the manual abilities classification system. We threw in the communication function classification system. We looked at lean body mass as mentioned. We looked at the waist-hip ratios and self- or proxy-reported disease outcomes. So here's our results. We approached 114 subjects and 112 subjects agreed to participate. So that gave us some information about how feasible this was. This was something that people were willing to try. Of the 112, we looked at five were excluded, because they were unable to complete the task or we had incomplete data. So we have a group of 107 individuals ages 16 and up. Fifty-three point two percent were female. The mean age was 35.5 years and the age range was 16 up to 70 years. So we looked at reliability. We looked at the inter-class correlation coefficient with the 95% confidence intervals there. It was 0.95, which is very high in the dominant hand, 0.97 in the non-dominant hand. We stratified by GMFCS and max and all the ICC points. Estimated... The estimate ranged from 0.5 to 0.98. Again, with good to excellent test-retest reliability across the various functional classifications. We correlated demographics. Not surprisingly, the grip strength of men was stronger than that of women. There were differences between individuals that were in the more functional GMFCS max and CFCS levels, 1 through 3, than the lower functioning groups, 4 and 5. So we stratified by smaller groups. We looked at... In the GMFCS we looked at 1 and 2 ambulatory without assistive devices versus 3. We didn't find any significant difference when we looked at GMFCS. However, when we looked at max and we divided by 1 and 2 versus 3, we did find a significant difference. So max levels seemed to tell us about differences in grip strength. We also found CFCS, which I throw when I present some of the authors in the study say we should drop that, because what the heck does they have to do with the hand grip? And we wondered is it a proxy for something else or is it perhaps they didn't understand the instructions as well, if their communication skills weren't as good. I don't know, but it was an interesting finding. So that's why I presented it to you. We correlated to anthropomorphic measures. There was a strong positive correlation between the grip strength and the lean body mass as measured by the tricep skinfold. We did not find that with BMI, which we weren't surprised, and we also didn't find it with waist-hip ratio, which we thought would actually be a better measure, but we didn't find it. We found a lean body mass using the tricep skinfold. We looked at the high functioning max group, 1 and 2. The mean score of grip strength was about 30. And so what we did with that just to kind of explore is we looked at cutoff points. If we chose a certain grip strength of 20 or 30, would people, you know, would there be difference in lean body mass based on that cutoff? Could we say, oh, if someone's at this level, they're going to have a higher lean body mass, and if someone's below that level, they're going to have a lower lean body mass. And we found that for both the 30 kilograms and the 20 kilograms. And that was kind of an exploratory thing to see if there were, you know, cutoff points we could do to tell us something about lean body mass. Because lean body mass has a lot to do with chronic disease risk, and so maybe that's starting to tell us about what grip strength can tell us about chronic disease risk. When we actually looked at that point to look at chronic disease risk, we had some kind of interesting findings. Grip strength was lower in a group with epilepsy, seizures, than in a group without. Grip strength in the group of asthma and bone fracture was higher. What does that mean? I don't know. I could make up stories for you. I could guess. But the truth is is that we had a small population, really 107, to really start doing this kind of work. And we were just kind of playing around to see what we could find. And it's interesting to see about the epilepsy. The other one I don't know. And we really need a larger group to really tell us things. There was no significant association with all the other diagnoses that you see there at the bottom. So grip strength, in summary, grip strength was accepted as a simple measure in the regular clinic visits through a palsy patient with a very high rate of participation. It was simple to perform. It had excellent test-retest reliability. The max level appears to be more meaningful in understanding grip strength for differential functional levels of cerebral palsy than GMFCS. Why is that important? Well, you know, we tend to think about, well, we're going to make grip strength curves using thousands and thousands of patients. And we're going to look at GMFCS1 versus 2 versus 3. And maybe not. Maybe we'll be looking at max instead and ignoring the GMFCS to some degree. I think many of us can think about that patient who's GMFCS4, but is a weightlifter and our top grip strength, by the way, was a GMFCS4 patient. So that really made us think about that. Grip strength was associated with lean body mass, which may suggest there are cut-offs available to look at disease risk in the future. And the findings relating to disease risk were unclear. Larger populations will be needed for understanding these relationships. So future directions. Ongoing work to develop guidelines for care for adults with cerebral palsy is going on right now. Michigan is working on this with the Cerebral Palsy Foundation. Dr. Mark Peterson is leading a large international group looking at care guidelines. And so what we'd love to do is think about disseminating grip strength to many centers and I'm working with the Cerebral Palsy Research Network on this idea for further evaluation of utility and best methods for its evaluation. We want to prove the evaluation, grip strength with other data points for evaluation of risk and look at correlations with pain, functional loss, falls, risk of chronic disease, all the things that are important to adults with cerebral palsy as they told us in that prioritization session. And we want to do multi-site evaluations and think about its role in protocols for intervention. So thank you for your attention. This is the Japanese word, arigato, for thank you. And I thank everybody and, Kevin, if you have a few more minutes if you want to ask questions. Well, thank you, Ed. We'll have Dr. Michael Green here come up to the mic and lead the Q&A for us. Is that... Anybody have questions, just go ahead. If not, I've got a couple for Ed. Maybe we'll start off, Ed. I'm wondering why you think the MAX was a better predictor than GMFCS. Do you have any thoughts on that? Yeah, you know, I mean, MAX does tell us about hand function, so it's really not that surprising. and then again there's that idea that GMFCS, you know, your ability to walk may not just be totally uncorrelated... not correlated with your ability to use your hands. I mean we know it often is, but there can be... that we just found so much variation in that. You know studies that... I did a study once about looking at GMFCS max and CFCS and groupings and things like that and they really do group well together, but sometimes they surprise us and you know, that can hurt your specificity and sensitivity once you're trying to turn this into a real test looking for risk. Yeah, I know we spoke a bit before. You had mentioned that the type of CP or the type of tone, athetosis versus spasticity or dystonia, didn't seem to play... or you didn't quite look at all of that yet, but... We didn't have enough patients with hyperkinetic seropalsy, athetosis, dystonia to really... I mean there's a lot of dystonia in a lot of patients with seropalsy, but we didn't really have enough to really look at all of that and you asked me, Kevin, by email about did I look at hemiplegia, diplegia, and quadriplegia and the answer I gave Kevin was that I don't believe in hemiplegia, quadriplegia, diplegia. I wrote a letter to the editor for DMCN. You can look it up where I said we should get rid of those terms because our kinesiological studies tell us that every single patient with seropalsy has quadriplegia. It's just a matter of how much in which limb and so I think it's a great communication tool for us to say that this patient's like this and this patient's like that. I think, don't drop it out of your clinical notes, but for research I don't think it means all that much. There must be a few other questions for Dr. Hurwitz here. I'm thinking. If you could come up to the microphone that would be great. And tell us your name. My name is Amit from Pittsburgh. Can everyone hear me? With or without the mic? Alright. So I think it's a great tool that I think to look from a population standpoint, population health, but I know in the adult population there's some... or especially in the geriatric literature there's some evidence that as a grip strength changes for the patient over time. It's a great predictive model of falls and other comorbidities. Do you anticipate using that information on a patient level or do you see more from a population standpoint? Well, you have to do the population work first, but then no. I'd like to do it on the patient level. I'd like to be able to look at someone's grip strength and a few other things we're considering. We're actually... You know I mentioned about the creatinine because I'm giving a little foreshadowing of some other work you may be hearing from me in the future. Our group is looking at creatinine and what it may mean. And so looking at the combination of those things, we're wondering if that can tell us on a patient level what some of the patient's risks are. And then of course there's the question of what do we do about it. You know, that's another great question and hopefully we'll be getting to that. Well, mostly from a research standpoint, but since we've been doing the research, we've been doing it on everybody. Okay. Uh, so, and we don't quite know what it means yet, but you know, we're doing it and it's very interesting. Perfect. Thank you. Sure. Uh, my question kind of backed on the end of his. I'm Jensen A. Clark from the University of Cincinnati. Hi, Dr. Hurwitz. Hi. I was just asking about the feasibility if you were doing it in all of your, um, patient visits with the grip strand along with your other anthropomorphic measures and you answered that question. That was my question. Yeah. Yeah. Well, you know, it's, it's, it's a quick test. Took a few minutes to do to, you know, in all honesty, uh, Dr. Bob helped me out a lot and did the grip strength where I wandered around, uh, doing other things. But, uh, it would have taken me an extra two or three minutes to do the grip strength. And, um, you know, it's, it depends how important it is. Right? I mean, we, we do range of motion, uh, that certain parts of the exam we skip. If, if we can show that it's important, then, then we'll do it. It's not a, you know, something's only added if it's not important. Right. Okay. Very good. And thank you very much. Wonderful. Thank you. Well, thank you, everybody. We've had a few more people come in the room since I was up here before. I appreciate you coming to the Dr. Molnar presentations. I just want to comment again, there's a pediatric rehabilitation medicine survey out there that's very important. You should all have it in your emails. Next I have the great pleasure of introducing Dr. Kayla Williams here and I think we're all familiar with the Journal for Pediatric Rehabilitation Medicine and that was founded by Dr. Jacob A. Neufeld. appreciate all he's given us and try to keep his legacy alive. And so this will be the inaugural event for the Best Paper. And Dr. Williams is a huge part of that. She's the first Journal of Pediatric Rehabilitation Medicine lead fellow associate that we're very proud of. She'll be presenting this inaugural Jacob A. Neufeld Best Paper Award beginning in 2022, the first day of this. We're very, very pleased with that. Dr. Williams has shown exemplary service in her role here, currently completing her final year of a Pediatric Rehabilitation Medicine Fellowship at the University of Texas Southwest in Dallas. She's had her medical degree from Howard University College of Medicine, and then her residency at the University of Texas Southwest Medical Center. She's been a key part, to say the least, of the Journal of Pediatric Rehabilitation Medicine mentorship and publishing training program through her leadership. She's involved in ongoing peer review training, mentoring, and assisting in the expansion of opportunities for trainees within the Journal of Pediatric Rehabilitation Medicine. Dr. Williams is also involved in research, mentoring, and education, and plans to pursue an academic career in Pediatric Rehabilitation Medicine. We certainly appreciate academic physicians, to say the least. We need so many of them. And thank you, Dr. Williams, for coming up and helping us all today with a nice presentation. Thank you so much for that introduction. I'm honored to present the first ever JPRM Best Paper Award today, but before I do, I want to share a few words about the journal that we're all familiar with. The journal was first published in 2008 by founding editor-in-chief, Dr. Jacob A. Neufeld, and designed to parallel the multidisciplinary teams involved in the rehab care of children, adolescents, and adults with childhood onset physical disability and complex care needs worldwide. It continues to be published quarterly with two annual themed issues on cerebral palsy and spina bifida. And in 2021, the journal published 85 articles comprising over 700 pages of content. Currently, it's distributed over 2,000 libraries, hospitals, and scientific institutions with accessibility in every country worldwide. And I'm excited to share that as of next year, 2023, it will be open access becoming even more widely available. Content is accepted from authors all over the world with the majority of authors from North America, but increasing contributions from authors of Europe, Asia, and Africa. The journal is growing in its readership, citations, and attention with a cite score consistently around the 50th percentile and papers without metric scores as high as the 95th percentile. The journal has seen substantial increase in viewership So, the next few slides just bring attention to some of the most viewed articles of the year in this slide, as well as the last five years on the next slide, and since its beginning in the slide after that. It includes research articles, different protocols, different guideline statements, consent. Topics span a range from original research of common diagnoses such as cerebral palsy, spina bifida, or SCI, to protocols and statements on topics such as the impact of COVID-19. Insight into how to better care for children with physical disability and complex care needs is better because of your contributions to the journal, through your submissions, through volunteering, and through your financial support. Now, for the moment we've been waiting for, we're very grateful for support from the Foundation of PM&R, and I'm happy to announce that the JPRM Best Paper Award will in perpetuity be named the Jacob A. Neufeld Best Paper Award in honor of our founding editor-in-chief, who worked tirelessly to begin and maintain the journal until his untimely death in 2017. The award is given to an original research manuscript published in JPRM and chosen not solely based on readership, but off of an independent evaluation of its importance of contribution to the field, relevance in clinical practice, and overall quality and methodology, interpretation, and writing. This year's winning paper was an open-label phase three trial of a long-term safety and efficacy of a medication nearly all of us have used in our children and adolescents with cerebral palsy. Its impact is huge, as it demonstrates safety, efficacy, and tolerability across multiple endpoints of a quite heterogeneous group of tone patterns in children with CP who comprised a wide range of functional abilities. And through their study, they also did not find any new or unexpected safety concerns over multiple repeated treatments over many years. This year's award goes to Dr. Peter Konofsky and others for their work entitled Safety and Efficacy of Repeat Long-Term Oncobotulinum Toxin A Treatment for Lower Limb or Combined Upper Lower Limb Spasticity in Children with Cerebral Palsy. So, I'm not sure if anyone who also contributed to this paper is here, but we're very happy to award this year's award, and that is what I have. For more information about the journal, to get a free three-month subscription to the journal, you can scan this QR code or email Dr. Elaine Pico or our managing editor, Sarah Tinsley, here at these email addresses listed. I tend to save it a little bit more for growth spurts and try to maybe not more than one or twice a year rather than every three, four months. I'm just wondering if others have thoughts on that because there are some concerning tissue changes over time with Botox as we study the adults a bit more. I think it's cost-benefit. You know, you have to think about, all right, if I look at this adult who comes to my clinic and is benefiting from botulinum toxin injections every three to six months, and I say, you know, I'm really concerned, your muscles, well, doc, what are you going to do for me? Oral medications are not great choices in adults. Baclofen, I have patients I've taken off baclofen because they were not able to drive, not able to do their work. trade-off in these kind of things, like it is with a lot of invasive medical treatments. Yeah, absolutely, I agree. There certainly is, as long as there's a serious target and functional goal, and it's, at least in my practice, it's not just an automatic every three months, they show up and push the button again for Botox. And sometimes you can see that happening, people almost get addicted to Botox and they have this feeling that they need it every three months, no matter what, for eternity almost. And so I think we have to be careful with their, there's also reimbursement kind of incentives for repetitive procedures in Botox and people that just want to get their shots every three months. I'm just saying that there appears to be some red flags that we might want to look at carefully when we're doing Botox, make sure we've got a clear functional target and goal, and if we can do it more through natural stretching and splitting, that always seems to be a better way if it can be done in a more natural way, too. But any other comments? Maurice? My comment isn't about the article, more about the process. As a fellow that's coming in, stepping into a role, helping coordinate really the education and the future of our academic endeavors, what advice would you give to other fellows or other more junior faculty members about how to get involved and how to sort of do something, even though you feel like maybe you don't personally have the weight or the number of publications that sort of feel like you can sit at the table? Could you speak to that, Doctor? Sure. So I think the thing that has helped me the most is really connecting with people who are ahead of me, because you don't know what you don't know, so you don't know what opportunities are out there, you don't know how you can be involved. And so working with the journal has been a great way for me to do that because I've been able to meet a lot of people who are opening up opportunities such as today to be a part of the programming of the conference, and not just an attendee, but also actively involved. And then from there, as I'm getting into, soon to be stepping into attendinghood, also showing me how their leadership and their mentorship with me, how I can also emulate that to help others as well in the future. So I would encourage you to just, you know, talk to other people, your peers, but also people who are two steps ahead of you, ten steps ahead of you, whatever the case may be, because you really don't know what you don't know, and you just have to be humble enough to know that without the help of others, you're going to be very limited. Yes. So Kayla, can you tell us the best experience you've had as you're in your fellowship so far? Ooh, that's a... That is a tough question, I know. Yes, to pick just one. I can't tell you the questions ahead of time, so. For me, I think it's stepping into the role of being more involved with some of the learners, some of the residents who I already knew before I stayed at the same institution, but also some of the other trainees who have come through, and really stepping into those roles and being more active in overseeing people and really helping them to understand the concepts and make those connections so that they can also kind of get to that point in their careers. And telling them about these opportunities, I'm always pushing and saying, you know, get involved with this, come to the conference, you know, let these people know what your interests are so they can help you. That's been really rewarding for me personally, and that's something that I really want to continue to do as I move forward. It's been nice, it's been good. Well, thank you very much, Kayla. Nice job. I really appreciate it. Thank you. Thank you. Well, thank you everybody, and now our keynote address here, and the colleague and super professional that needs no introduction, Maurice. Thank you very much. Happy to be here. Happy to be a part of something that's important to me, give people flowers while they can receive them, rather than laying them down after they've gone to bed. This is a process of us giving people flowers that should receive them. Dr. Kroc attained her MD degree from Hahnemann Medical College, now Drexel University College of Medicine in Philadelphia, and completed her residency in physical medicine rehabilitation at the University of Minnesota. She's board certified in both pediatric and adult rehabilitation medicine, and was the first pediatric rehab physician on the medical staff at Gillette. Think about that. One of our signature institutions, she was the first that was there, trailblazer. She was on staff there for 40 years, and now she's an adjunct professor in the Department of Rehab Medicine at the University of Minnesota. She's the author of 58 peer-reviewed articles and more than 20 invited publications, including book chapters, and she's a member of the University of Minnesota Center for Orphan Drug Research. She has so many honors. Her honors include receiving the President's Citation for Outstanding Paper at the 62nd AAPMNR meeting. She was a Sydney Lit Lecturer at the University of Minnesota in 2004, and received the American Congress of Rehabilitation Medicine Annual Meeting Best Paper Award in 2005, a signature year for me and Katrina. She was named a Bush Medical Fellow in May of 2006, and received the AAPMNR Outstanding Counsel Service Award for Pediatric Rehabilitation and Developmental Disabilities in 2010. She got the Distinguished Clinician Award in 2012, and she received this Gabriella Milner Lifetime Achievement Award, and stands before you today. She is active in numerous organizations. She's with Goodwill Easter Seals, Gillette Children's Foundation, the Easter Seals Board of Directors, the Kenny Rehabilitation Institute Foundation Board of Directors, on and on and on. She exemplifies what it means to walk the walk, not just talk the talk, and she shows she supports things by giving her time, her intellect, and her resources. Through her career, she's been active in clinical care, teaching, research, and administration, and I want to add something else. She was active in opening doors for people that desperately needed to walk through them. Please join me in welcoming our colleague for our Lifetime Achievement Award for Reflections on How Caring for Adult Patients Informs Pediatric Rehabilitation Medicine, my friend and mentor, Dr. Linda Kropp. Thank you. Thank you. It is truly an honor to do this. Nanette Aldehondo, who some of you know from Gillette, she and some of the other Gillette people nominated me, and they were the ones who told me I won, and they can tell you I was speechless, so it is really quite an honor. I am lucky. I have been on staff at Gillette for more than 40 years. I stayed on staff for a period of time so I could keep doing research when I left and dabbled in other things. I was at the University of Minnesota and program director there for five years, and then I joined corporate medicine in the Twin Cities and worked for a large health system and found that after six years I needed a better work-life balance. And I went back to Gillette and they said, sure, come back, but we don't need you in peds rehab because we have nine other people doing peds rehab now. So we need you to do adult rehab with patients who have congenital and childhood onset disabilities. And I just leapt at the chance and it really has helped me learn more about things I probably should have been doing throughout my career in peds rehab. So objectives for this are to consider how early intervention can decrease acquired comorbidities in adulthood, and Ed and I didn't coordinate things, but we easily could have because we have similar practices, I think, and see similar things. Identify conditions in adults with congenital and childhood acquired disabilities that require evaluation and intervention. And one that I've really been thinking about a lot more lately is consider how learned helplessness, learned dependence, and or learned disuse influence adult functioning. I see a lot of young adults who come to clinic and all their lives people have taken care of them and they expect that's going to continue to happen. And I think we have failed those families and those patients if we haven't helped them with making the transition to self-management and self-advocacy. So that's something I have been thinking a lot more of lately. I have no financial disclosures, but I have a couple of others. One is that this is largely opinion and observation, so it's my reflections. If you had been at the session at 8 o'clock this morning on aging with a disability you will have heard some of this and they actually included the references. So if you want references for some of the factual stuff contact them or contact me or listen to them if you hadn't been there this morning. And as they noted there are now more adults with CP and more children with CP and we're finding that's the case not only population wide, but at Gillette we actually see more adults with spina bifida than kids with spina bifida. They are aging and they are surviving. My first day in the adult clinic I saw a patient with spina bifida who was older than me. So that kind of blew me away since I hadn't seen anybody that age in a long time. So really remember that our population is surviving and aging. And there was an allusion earlier in the 8 o'clock meeting about longevity and certainly people who are tube fed, people who are dependent on others for their mobility, can't even roll, people who don't have language, they are at risk for a shortened life expectancy. However, with great care they continue to survive well into adulthood. This was already mentioned a couple of times. We see metabolic syndrome in these patients and hopefully if we can intervene with lifestyle changes earlier in their lives we can help prevent this. Increase in weight is so common and I have seen 16 and 17 year olds. Our adult clinic will start seeing people at age 16. So since I'm the PEDS rehab person in the adult clinic I see most of those. But I see 16 and 17 year olds with hypertension. Hypertension to the point that they need to have intervention to be treating their hypertension. And this has brought up one of the discussions. General PEDS, you always check blood pressure. PEDS rehab, how often are you checking blood pressures as part of your vital signs? And I think it's something we need to be doing more and we've been talking about really instituting that at Gillette. Diabetes. We see type 2 diabetes. I actually have some adults who now are on insulin for their diabetes that I'm following. It just compounds the issues with wounds and wound healing. So it can be a very significant problem. And the changes in body habitus that occur with the visceral adiposity that develops and especially with the spina bifida population that challenges with executive functioning. How do we help people protect themselves and not develop wound issues from pressure? All of us age. I can tell you I've had two total knees. I'm glad I didn't have to come up the stairs necessarily today. But we all lose muscles. We develop sarcopenia over time. Some of us exercise and try to maintain that as much as we can, but how much do we talk about that eventuality with the patients we're serving and really make sure that they maintain optimal strength to try to help maintain optimal functionality as long as possible. As Ed mentioned, there's a decrease in lean body mass, loss of bone density, pain. And the pain was brought up... Depending on the study you read in adults with CP, pain is reported to be up to 70% or 80% of individuals who are adults with CP experience chronic pain issues. And some of that is probably due to overuse syndromes. Is it due to degenerative arthritis sometimes? Have you ever tried to convince an orthopedic surgeon to do a total hip arthroplasty on somebody with spastic hip adductors? It's challenging, but it's something that can be very helpful in reducing their pain. Also with some of these, there's probably a central pain component, especially spina bifida, but perhaps in CP as well. So we need to really think about those things. And all of these I'll talk about a little bit more later. The weight changes again, the comorbidities that occur, and the change in the weight distribution. And there is the association of different neurologic conditions with CP so that one needs to look for other issues as well as people develop different symptoms. Sarcopenia, again, it's typical in aging. And we do what we can to try to decrease the effect. Disuse deconditioning occurs too. How many in the audience saw their patient population get weaker over the pandemic? Yeah. I mean, so many people just had so much less activity that they got weaker. And even now, for the adults, trying to regain some of those skills can be really challenging. Talking with my patients who have less endurance and less reserve than they had because they really were isolating to protect themselves. So that meant they weren't going to work or weren't going to their day programs, weren't going out of the house basically. So they were just really isolated. And obviously the decrease in function and endurance. Osteopenia can start at a young age and a higher fracture risk, but we don't have good recommendations for if and when we intervene. And minor trauma can cause a fracture, but we need to get more information about how long to continue medications and when to start medications. So pain is often poorly understood and undertreated. We need to use joint protection strategies and I brought up the potential for joint replacements, but it can be really challenging in my experience to get somebody to do a joint arthroplasty in somebody with CP. I want to bring up one of the patients I saw recently. Actually, I'm going to bring up a couple. One is a patient who had polio. She's now 55. So if you think back, you think, how did she have polio? She was adopted from India when she was quite young. So she had polio in India before she came to the U.S. She now does have post-polio syndrome. So she's got weakness in her right leg. In the past, she had weakness that was maybe hip flexors of grade 4. Hip flexors are barely antigravity now and nothing else is antigravity in her right leg. She continues to insist that she walk everywhere. So she has a carbon fiber KAFO and we're trying to get her a C-brace to try to help with the knee control, but that's going to be an issue, I think, with her third-party payer. But like I said, she insists she has to walk. With that much weakness, she is putting all of her weight on her arms. She's walking with crutches. She has shoulder pain. If for some reason her brace breaks, she can't walk. So another thing I think we need to do is to also de-emphasize walking. I think we need to acknowledge that it's really important for people to use whatever means mobility lets them have the best joint protection they can have and the best function they can have. So she and I have been talking about either a manual wheelchair, a scooter, a power chair, whatever she wants to do. I told her if she wants a manual chair, it better be with power assist with her shoulders. But she just isn't emotionally at the point where she can deal with that kind of a change in her life right now. She's excited about the idea of a C-brace because I think she thinks it's going to take away the need for her upper extremity support, but it won't. Another patient with pain and overuse. This was a... He is now 65. I saw him two weeks ago. He had a spinal cord injury at age 12. He has been very, very active throughout his life. He is like the ideal patient as far as he always casts. He does his bowel program. He's never had a sore in all those years of having insensate skin. He's a para with complete injury. And he's been independent. And the last time he came to clinic, he brought his mother with him. So this 65-year-old came to clinic to have his mother help him transfer. So the 91-year-old mother was in clinic to help him transfer. And that's because, again, his shoulders are causing him so much pain. So again, I mean, this isn't the first time we've talked about a power wheelchair. But again, it just... I think we really need to introduce the idea and the importance of using whatever means helps you maintain your health as best you can. Like I said, new neurologic conditions can occur in individuals with CP especially. There's a higher risk of stroke in CP. And maybe it relates to some of those metabolic syndrome sorts of things and the hypertension that we can see. Higher risk of dementia. And a higher risk of stenosis, both lumbar and cervical stenosis with potential of myelopathy or with nerve root compression. Classically like... Classically. When I was a resident, we were told that that myelopathy and the cervical stenosis only happened with dyskinetic CP. That's not true. My other anecdote to tell you is about a 55-year-old who came to my clinic carrying a diagnosis of hemiplegic CP. Sorry. That's how he came, Ed. But when he came to clinic, he was seated in a power wheelchair and with a caregiver from his group home. And luckily I had the luxury of a lot of time to talk to him that day and like I said, I saw him at age 55. Age 39 he was ambulatory with an AFO. He developed spasticity, started to develop weakness in his non-involved side and everybody told him his CP was progressing. CP is not a progressive disorder. CP is a static encephalopathy. He... My visit with him was the first physician he ever saw at Gillette. So age 39 that. Age 42 he got a suprapubic catheter for urinary incontinence. I cried after that clinic visit. And I might cry now. I get so angry. Anyway, he came to clinic, wonderful man. He came to clinic in his power chair because he was losing the ability to control the joystick with his right hand and he wanted to know what other adaptations were available since his CP was progressing. Well from the response of all of you, you know that his CP wasn't progressing. I got an MRI and he had cervical cord compression. It was decompressed. This of course all was happening during COVID, so the surgery got delayed because it was elective. And he regained the ability to use his joystick, but he hasn't regained anything else because it had gone on too long. Just to tell you that don't rest on your laurels when you think everything is going well, he came back to clinic with new hand weakness and he developed carpal tunnel. So keep in mind those other things that can occur too. Just because you have CP, you can have other things with patients with CP who have rheumatoid arthritis. So don't, I'm preaching to the choir, but don't attribute everything to CP. You need to keep in mind when there are functional changes. When I see a patient in clinic, I really do, as they talked about this morning, I focus on a functional evaluation. I find out what they're doing. My documentation includes not only their GMFCS and their MACS and their CFCS, but I try to find out how much assistance they're needing for various activities. So again, that was one of the horrible issues I saw related to not getting to knowledgeable providers who could help somebody prevent significant problems. Pulmonary issues, as again was noted, there's a higher incidence of asthma. There's a higher incidence of emphysema. Also, people with CP often can develop swallowing disorders beginning at age 30 in some cases. And keeping that in mind, sometimes I even ask people if there's been a change in how long it takes them to eat a meal and the last time I asked somebody that, well, yeah, it used to take me 45 minutes and now it takes me an hour and a half. So he got a speech referral and we can see aspiration without coughing. So keep those kinds of things in mind as well. Chronic fatigue and sleep disorders associated with depression and anxiety, associated with a higher BMI, which we know isn't an ideal measure, and also with a higher waist circumference. Just think about the energy cost of the activities and the reduced strength and sleep disturbances and chronic pain. Sexual health. We need to educate all of our patients about sexuality and sexual function. There was a recent article about the prevalence of HPV vaccination in individuals with CP and it's much lower than the general population. So we're putting people at risk for having later cancers as a result of not getting the vaccinations they need because of the assumption that these are not sexually active individuals, but they do have sexual activity and they need to have the protection of everyone else is offered as well. And folate supplementation for women with spina bifida in case they do pursue pregnancy so that we can reduce incidence of spina bifida again. Bowel and bladder function. You know I said, CP is non-progressive. But it sure seems like some of the bowel and bladder issues we see are more severe over time as people age. And I think most of us clinically don't know much about what's really going on with bladder function in our patients with CP unless we've done neurodynamic studies and we don't... I think most people don't tend to do those. We've been doing them more pre-rhizotomy so that we can really understand things. But there is... It's not uncommon to have bladder sphincter dyssynergia or other issues with CP and certainly there are issues with spina bifida as far as bladder. Chronic constipation can become a huge problem over time and you're getting more anecdotes, but I have a couple of patients who work and use powered mobility and don't have care assistants with them during their work day and they've decided to selectively dehydrate so that they don't have to pee during the day because they don't have anybody to transfer them to the toilet. And no matter how much you talk to them about can we problem solve this, that's been their solution. And I've had both of them need to be hospitalized to be cleaned out because of their severe obstipation. It was probably related to years of overextension of their bowel and not having sufficient fluid intake. And another thing to consider is some of these patients have urgency and with urgency, if your mobility changes you're more likely to become incontinent. So problem solving from that point of view as well if there are mobility changes. Mental health. It's a huge issue for our patient population. Certainly it's a huge issue for physicians as well and other healthcare providers and we all need to take care of each other. There's a high incidence in CP and spina bifida of depression, anxiety, and schizophrenia actually. And again, in talking with some of these patients and in talking with my three other adult PM&R colleagues at Gillette, we have patients who really describe PTSD-like symptoms related to their medical intervention as a child. And it's great that we do as much as we can to help function, but we also need to make sure we're really supporting them emotionally through that process. Some speculation that I have at this point in time is that potentially some of the drop-off we see in people making it to clinic in their 20s and 30s relates to this PTSD-like syndrome. They don't want to be seen in a medical facility anymore. I used to tease Mark Gormley and say that his patients had a conditioned response to him coming in the room that they would start crying because they thought he was going to give them an injection. Well, I don't tease him anymore, because I think it's real. I think that we really do have patients developing conditioned responses to the interventions. So how do we try to mitigate some of these things? And it does all start with what we're doing as pediatric rehab physicians. What we're doing early, what we're doing to support the patient, and to support the patient in the transition to being able to be a self-advocate, manage things for themselves, and be knowledgeable about what their future is likely to bring so that they can make the best informed decisions they can. So of course, routine exercise to help decrease pain, fatigue, contractures, osteopenia. My... Back to my patient with post-polio syndrome. She's actually finding success with using FES to augment her muscle contraction to help reduce her contractures. She's getting much improved range of motion and we're actually using some of the... She had some effusions too from some of the chronic issues. We're using game ready wraps to try to help decrease her swelling and she's getting better range of motion. So thinking outside the box sometimes too. Monitor for changes in tone and investigate potential causes. I mean that one patient who was a GMSCX 2 and became a 4 before I saw him, that should never have happened. People should have recognized that far sooner. Monitor blood pressure and typical serum panels and hopefully Gillette and Michigan can maybe work together on some of those how we monitor and take care of people who are adults with disabilities to work with their primary care providers as well to help them understand what risks the patients have. Ask about sleep. Monitor GI and GU symptoms and mental health monitoring. And really for the young children, for the families, support the children and families facing medical and surgical intervention. I know we do it, but somehow we need to figure out a better way to do what we're doing so we are giving people better support and they're less likely to have such significant issues later. And this one, transition from family-centered care to child-centered care. And I know this isn't typically what people would think, but sometimes we need to push the families to let the children experience the things they need to experience. So again, really affirming that the child is at the center of everything we do so that we can help them participate in goal setting to... You know, obviously we talk to the kids first. That's who we talk to, but we need to make sure they're involved in goal setting as they're able to be, that we help them learn to advocate for themselves, that we help them learn what it takes to be an adult in the medical care system, that how you do your prescriptions and how you make an appointment and all those kinds of things, and that we also provide them with information about comorbidities and try to decrease them. And one of the most challenging things is finding the adult providers, primary care providers, to partner with. I don't know how many of you work with adult patients, but many adult physicians don't want to see people with disabilities. And I think part of that is we physicians don't like doing things we don't know much about. So those people need our support to help them learn about the conditions we treat and to help them know that we will treat those issues and we'll partner with them, but we'd rather have them treating the hypertension and all those kinds of things. And so always encourage healthy lifestyles. Address not only the physical health, but the mental health as well, and don't attribute everything to the disability, that other things happen. So we also want children to make choices, to set goals, to be involved in planning, to learn self-management and self-advocacy, and help families figure out how to do that so that children don't spend too much time being dependent on others and learn the joys of being independent as much as they can. And that is my very opinion filled presentation for today. So... So anybody want to take on opinions? Thank you, and I'm sure we'll have a lot of good questions, one off the block. Can you give us any advice on how we can influence medical schools, the ACGME, others, to get more curriculum time when it comes to aging with disabilities? It's hard to even get a lecture on cerebral palsy in some of the medical schools now and we have more adults than kids with some of these conditions and it's getting to that point where we just got to get in there and get on the curriculum somehow. Yeah, one of the things I have wondered about, but haven't done yet, is to reach out to some of our gerontology colleagues and see if that would be an entree into being able to do more. That, I mean, we're dealing with similar kinds of things so maybe the gerontologists would be willing to partner with us, but like I said, I just thought of that on the way here and didn't... I haven't as yet followed up, but I will plan to do that with the University of Minnesota because they have a significant program on aging. Linda, I just want to say that Mark Pearson is speaking at the gerontologist site in America coming up in a few months and he was told it was the first time they'd ever heard the word cerebral palsy there. And like I said, gee, you know, I could see a gerontologist. I'm old enough, but my first patient in clinic when I came back to Gillette was older than me. So there, yeah. Okay. Thank you for that Dr. Kroc and thank you for being such a fantastic mentor and teacher for me. Jolene Brandenburg, Mayo Clinic. I spend a lot of my clinic talking about my daughter and I have the lived experience of being a parent with a kid with CP and I find it incredibly valuable to be able to give parents permission to let their children fail. I think we spend so much time trying to support them and they worry that they're going to fall. They're worried that they're going to get hurt. They're worried that they're not going to do as well as their peers if they try something different. And so I spend a lot of time talking about ways that I've been a terrible parent and have let my child fall off her horse or fail at a cheerleading practice or have trouble with something. And the fact that there's growth in that like every other child experiences. I think there's also value in talking about other things outside of clinic. How are they doing with activities with friends? Do they have friends? Do they get along with friends? Are they helping in the decision making? So making sure in clinic that I'm addressing the child regardless of the age of the child. I had a conversation about access to medical records. Now at the age of 13 our parents lose access to our children's medical records and I don't have access to my child's medical records because she's better at scheduling her doctor's appointments than I am, but most of my patients in clinic are not. And so when I have... When the child turns 13 and the parent says, I can't see their medical records anymore, I talk to the child and say, is it okay for your parents to have access to your medical records? And if they agree there's something I sign off on so that they can and I say, we're going to limit the time on this too so that we have this conversation every year to ensure that you're participating in this and know this is important. That's a Minnesota state law. I don't know if it's the same in other states. It's really sucky, but it does give us the chance to have that sort of conversation and say, how much does your child participate in this coming to the doctor? My daughter, after her third femoral derotation osteotomy said, mom, I'm done. And I said, okay, we don't need to do this anymore and when the orthopedic surgeon offered her a tibial derotation osteotomy she asked, will this make it so I don't need to use my walker? And he said, no, and she said, I don't want it. And so having the ability for the child to be able to make some of those reasonable decisions and participate is really important from the get-go and giving parents that permission to let their child speak their opinion is important too. And it's kind of forgotten sometimes, I think, especially in the surgery world and so we need to counteract that a little bit with what we do in our rehab clinic. And thank you for bringing up falls. I was going to plug also on the... I just posted today or last night, I can't remember which, on the Pediatric Rehabilitation Medicine Facebook page. We are at Gillette doing a survey of individuals with CP about falls and how they feel about falls and if it interferes with their participation and things. So please get printed out, use that QR code, use the website, whatever. Get your patients to fill out the surveys about falls. Hello. As a pediatric physiatrist for 21 years who's now in the role of a CMO of a largely adult physiatry system, what are your suggestions as children age out? You know, I think the children's hospitals are doing a great job of managing the older child with CP, etc. But if they're getting their health care in the adult world, you know, what is the long-term, right? What is the 10 years from now? I think it's a hard pitch to someone in my position, the CMO of an adult health system, because it's a tough act to follow. You know, the time we spend in PEDS with patients is not necessarily the time we spend in adults. I think a patient's satisfaction is a lot, but I do think on the care coordination side there's something to be said, but I just wonder... We partner beautifully with the children's folks. Uh, that are nearby us in D.C. But how would you suggest sort of phase 2.0 goes for adults transitioning out? Well, I think part of it is how the PEDS physiatrists set it up, saying, PEDS systems are different than adult systems. You need to be more proactive. You need to take more on yourself. You need to do more of your own coordination. So I think some of the education relates to setting up the expectations for what happens in the world. I would also advocate that every PM&R residency program should have residents rotate to a facility that works with adults with congenital and childhood onset disabilities. The PM&R... General PM&R physicians need to know the kinds of things that were brought up earlier today by Ed, by me, we need to have that at least general knowledge within our general specialty. Thanks. I just got that last point about the... about what we do with the system. So, you know, people say to me, oh I love your work on transition. I don't really do a lot of work with transition. I do in clinic, but I don't publish on transition. I publish on adults. There's a big difference. There's kids, there's transition, and there's adults. When you're 45 years old, you're not in transition clinic anymore. So adults don't have time to come to some three-hour appointment with 14 specialists. It's just not the same thing as it is with the kids. So what we've been trying to do is identify specialists in the various specialties and get them interested in this area, you know, especially in the academic center. We try to get them interested academically. Would you like to publish with us? Would you like to be part of our team and publish with us? There's a lot of people out there that are desperate for looking for ways to get promoted. So that helps academically. I don't know what to tell you about non-academic centers, but that's what we've done. And you know, Lynn, I just wanted to make the point about the surgeons. So I feel for the surgeons because, you know, they cut people open and chop on things, and if they don't know what's going to happen after they do their surgery, they're very gun-shy to do the surgery, and I think that's very appropriate. I'm glad that when I've had surgery, my surgeon wasn't just saying, well I hope this works. So I understand why they're gun-shy, but boy, I've had that experience of sending someone with obvious stenosis to a neurosurgeon and just saying, well, you know, she's crippled anyway. You know, what difference does it make, right? So it's very difficult. So we're trying to work with orthopedics and neurosurgery to identify people to be interested to work with us and be more interested in doing it. Well, we can talk about the after spinal cord injury, MS, stroke, da, da, da, da, da, da, da, da, da, da, da, da. So, you know, I'm just trying to work you into the world if it's possible. Well, one of the things that has been helpful with regard to primary care is finding out who are the med-peds providers who do primary care in your area and trying to work with them because they tend to have a greater understanding of some of the congenital and childhood onset disabilities. So, really trying to find those med-peds people for primary care. Yeah, I think those are great points and I've been in the field a long time with the adults too and I really think the answer is just down the hallway. I mean, we've got our adult physiatrists that know very little about this and they're the ones that take care of adults with disability of all types and there's so much commonality between the functional needs of adult with MS and after having a stroke or spinal cord injury and the children. There's differences but there's a lot of commonality and I found it hard within the academy to try to move in this direction. Although, there's been some nice changes in the past decade, but I think a big part of the solution is going after our adult physiatric peers and getting them involved in this process and number two, talking to the health systems. It takes more than 15 minutes to talk to a 65 year old with post-polio syndrome. One question in the back there, please. I saw a hand. All right, everybody. Thank you very much. We're at 3.18 p.m. I'm a little military type, so we're about three minutes over here.

Dr. Kay Toomey

pediatric rehabilitation

early intervention

collaboration

evidence-based practice

Dr. Linda Kropp

adult patients

disabilities

self-management

chronic pain

gerontology colleagues