Stacy Suskauer, M.D., discusses research presented at the AAPM&R 2022 Annual Assembly in Baltimore, Maryland titled “Service Utilization and Unmet Needs of Children and Young Adults with a History of Disorder of Consciousness After Brain Injury ”. Dr. Suskauer is the Director of the Division of Pediatric Rehabilitation in the Department of Physical Medicine and Rehabilitation at Johns Hopkins Medicine.
I'm going to talk today about work that we've done, looking at longer term health care needs in Children who were admitted to inpatient rehabilitation in a disorder of consciousness after an acquired brain injury. So this is a very specialized group of Children who encountered an acquired brain injury. It could have been traumatic in nature or due to a stroke due to not getting enough oxygen for a period of time. And we see these Children in our inpatient rehab. And of course our goal is for them to then return back home. Um And many times we follow these Children longer term, but sometimes we don't. And so what we did in this study was pilot, a telephone battery for learning more about how these Children and their family were doing longer term. Um And as part of that, we wanted to know what kind of ongoing health care these Children were receiving and whether their caregivers identified any health care needs that hadn't been met. And so for this project, we called back families who agreed to be contacted, who had been in one of two inpatient rehab units, um about five years prior, on average. Um And we had a questionnaire that we developed that went through asking what type of health care providers they had, the child had seen in the past year, um what kind of equipment the child was using and whether their caregiver identified any needs that hadn't been met and if so, what the reasons were why that need hadn't been met. Um And what we found is that overall, um most of these patients were remaining in contact with healthcare providers, Almost everybody had seen both a primary care physician and a fizzy, a trist or rehabilitation physician in the past year, a number of these Children continue to have ongoing equipment needs. Almost all of the Children were using wheelchairs years post injury, and some also had tracheostomy and other respiratory needs. And what we found is the most common uh commonly reported unmet need was therapy. Um and more than 50% of caregivers reported that their child had some sort of unmet need and it may have been that they felt that their child didn't receive enough ongoing therapy or they weren't receiving any at at all. And this was divided across physical therapy, speech therapy, occupational therapy, um both outpatient and school based therapy needs. We also had some family specifically mentioned uh UNmet needs for vision therapy and when talking to the families, we found that the most common reason was either that the therapy wasn't recommended or that there was an insurance coverage for this and this is something that we'd like to explore more in the future because it's unclear whether um what the real reasoning was behind that and how it was communicated to the families. So for example, some of these Children are not expected to make big functional changes with about of therapy. Um for example, that somebody recovering from a broken leg may and so it's not clear if um in fact insurance refused the therapy or if parents were told that they weren't being referred or scheduled for therapy because um it was felt that insurance wouldn't cover. Um But overall the take home message is that even though these families are well hooked in with medical care, um they continue to identify a number of unmet needs. Um And our future look, we'd like to take a closer look at this and understand um how we might be able to address these unmet needs, um And more about what some of the background is leading to them.
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