Quality of Life Survey

Sure, so the quality of life survey is an annual survey that we're doing, so we're only doing it once a year or when there is a, um. Big life change. So maybe catheterization isn't something your child's doing, but then because of concentrating defect or different reasons, they need to start catheterization or maybe they catheterize, but later on down the line, their, um, renal, their CKD has gotten worse. So now they're looking at possibly, um. Dialysis. So those are the those are instances that we would do the survey more frequently and it's just to see um the relationships of the family siblings it could be um concerns at school, um our families having different needs that we can provide the support with so one of the things we are doing is we're looking at the where the family lives and we're providing um. Resources that we already have available to us, it could be, um, through the state that you live in the county that you live in. So then after the survey is given, we're still giving these even if there isn't a need that is, um, being detected. That so that you have those resources handy so if things would change maybe two months down the line somebody maybe um loses, doesn't have employment anymore or um transportation becomes becomes an issue or maybe you have um. Um, a food need things like that could be something that then we've already given you some resources that you have in hand. So even if you don't have the need then hopefully we're helping support you if something would change in your family or life situation at that time. Um, also other things could be that, um. There's things that when you're in an appointment, they're very busy. There's lots of things you're thinking of. And so maybe a question didn't come up, um, when you were at an appointment, but then later you thought about it when you're taking the survey and it makes you think about maybe. The fact that like Doctor Reddy had said, the concern of you are spending a lot of extra time with um hospital visits, maybe physician visits, therapy visits, it could be a lot of different things and when you have multiple children, you know that is impactful on them as well. It could be a concern that they've seen. Their sibling, their brother very sick and they're concerned about that. So helping you find through, um, having our social worker also being very engaged. Myra Overton happens to be our social worker and she will come, um, a lot of times if needed and speak with the family, um. She can help with finding out if there are local um resources because we do have a lot of families that come from very far away and we understand that the burden of care coming here to see us, which we try very hard to make our appointments as close together as possible, um, to make those trips minimal, but that having as much care. You can at home for maybe therapists to work with the schools with supports things like that that those are very important so by providing this quality of life survey we're not only being able to give you resources but we're giving you that stuff right there at the uh visit because we all have taken surveys that you answer a lot of questions and you don't necessarily feel like you've gotten the um. Result from taking that that time so by doing this we're able to give you that time and um we've actually had some really positive feedback I think from the families that um. They, I, I think knowing that we're looking at everything and not just concerned about why you're here to see us that day, um, having a child with a chronic illness can be very trying on everyone in so many different aspects of your life that to know that you have someone hopefully in. Like in our case myself or our complex nurses, um, our social worker that you can call if something else comes up, a new concern that maybe wasn't, didn't happen 4 months ago when you were here, but you have our cards, you have our contact information, and then we can help engage those needs at that time.