Selected Podcast
Pediatric Quality of Life
Dr. Kathy Zebracki explains QOL and HRQOL specifically in pediatrics, why it's important to measure both, how they are both measured, and how this information is helpful to patients and families.
Featuring:
Kathy Zebracki, PhD
Learn more about Kathy Zebracki, PhD Transcription:
Melanie Cole, MS (Host): Valid and reliable measures are so important in the evaluation of clinical functioning and management and research interventions for children with spinal cord injuries. Here to tell us about that today and quality of life is my guest Dr. Kathy Zebracki. She’s the chief of psychology at Shriner’s Hospitals for Children in Chicago. Dr. Zebracki, such a pleasure to have you on. Tell us about what I said in my intro. What is quality of life and health related quality of life? Why is that important?
Kathy Zebracki PhD (Guest): Quality of life—according to the World Health Organization—is really defined as the individual’s perception of their life. It could be in reference to their culture, their value systems in which they live, their relationship with their personal goals. Health related quality of life is specific to their perceived physical health, their mental health, their social health and social functioning, and their emotional functioning over time. Health related quality of life is particularly important in children with any sort of chronic condition or physical disability.
Host: So while it’s not always feasible or fair to compare the health related quality of life for children and adolescents with mobility impairments—spinal cord injury and the like—with children that don’t have those things. What are the main things that you’re looking for when you study quality of life and how do you compare and contrast those two things?
Dr. Zebracki: You're right. You can't compare on a measure of health related quality of life with a child without a chronic condition or physical disability with someone who does. The reason for that is because their daily is different. For example, a child with a spinal cord injury might have some difficulties with activities of daily living. They might need more help going to the bathroom. They might need help getting dressed whereas a child without that mobility issue will not. So it’s not as important to the child without a disability as it is to a child with the disability. So it’s really important when looking at health related quality of life to understand the specific condition or disease and the different domains it impacts on that child’s day to day life.
Host: So when you're studying pediatric quality of life, tell us about what you are looking for and how this is studied. Just tell us how this all works.
Dr. Zebracki: So with pediatrics it’s particularly challenging because, in general, children with or without ta chronic condition is changing. A child at age of two is very much different than a child at the age of 12 and 15. So we have to adjust for those developmental stages, those meaningful aspects of their life. Such as friendships will become stronger as they're older than when they're younger. So we have to take that into consideration, but then we also have to take into consideration the child’s physical condition. So a spinal cord injury will also change over time. There’s certain aspects that might be more relevant at younger ages than at older ages. When you're looking at health related quality of life, you're really looking at everything that a typical developing child experiences, but also everything in that context with living with a spinal cord injury.
Host: So until recently there were very few measures appropriate for measuring outcomes in youth and emerging adults with spinal cord injury. Tell us a little bit about the aim of your studies to develop and validate these kinds of specific pediatric protocols. Speak about some of the psychosocial aspects of what you're seeing.
Dr. Zebracki: So there is a pediatric quality of life measure. It’s been validated in children in the general population and then there’s other versions that have been validated with children with other chronic illnesses and diseases, but not with spinal cord injury. One of the main concerns that we had, and the reason we started this study, is the general quality of life measure, the first few questions asks how hard is it for you to walk around the block? Or how hard is it for you to keep up with your friends? Right away children with a spinal cord injury, they're not exactly sure how to respond. Are they responding—One, they can't walk. So the answer is either very hard. Or are they responding, “Well, I can keep up with them, but it’s in my wheelchair.” So it’s very confusing and it’s not really a good assessment of what is going on with these children.
So the purpose of this study is to develop a quality of life measure that is specific to children and young adults with spinal cord injury. Our range goes from age two up to age 25. Again, because there’s such variation and developmental needs and areas of functioning and domains that are so important. We’re looking at a self-report measure. So ages 5 through 25 will be able to complete the measure on their own. There's a parent measure for those age groups, and then there’s also going to be a parent measure alone for ages two through four just because children at those ages will have more trouble reading or aren’t reading at that level yet.
Host: Tell us a little bit about psychosocial. I mean, you're a psychologist. How do you measure or evaluate quality of life and health related quality of life when it comes to mental health of children with mobility impairment?
Dr. Zebracki: So excellent question. So we ask questions in general about do these areas bother you? If so, at what level do they bother you? One example that’s relevant to psychosocial health would be pain. People with spinal cord injury can experience pain. Some may be able to tolerate pain and move on and continue participating whereas others aren’t able to. They're not able to do things that they should be doing. The job of a child is to participate in school, to participate in social activities to gain skills that are eventually going to help them have a successful career in the future, live independently, and so forth. So we’re really looking at participation. We’re looking at how children are able to be in the community, and then how that impacts their mental health. So if they want to participate in a sport, they should be able to. That develops extra skills. Maybe they're not a sports person and they want to do art. If their spinal cord injury or environmental factors aren’t enabling them to do that, well then that will increase anxiety, that will increase feelings of sadness, can increase depressive mood disorders, and so forth.
Host: How is this information and your studies helpful to patients and their families? What would you like for them to take away from the importance? Because as a parent, we all want our children to have a good quality of life and a good health quality of life. So what would you like them to take away from this study about how important it is that these things are able to be evaluated and measured.
Dr. Zebracki: I think two things would be—The take home measures would be one is that parents and children are going to have different opinions about what is most important for their child or for themselves. We have sections about worrying. A child may be worrying about things that a parent may not be worrying and vice versa. I think that needs to be brought out into the conversation and discussion with your medical provider.
There’s also the importance that yes, we are worried about mental health. We are worried about increase in depression and anxiety, but we also need to be mindful of how strong and how resilient our children and families are. To see how we can even strengthen and push of children who might be struggling into becoming more resilient and strong, even though they're facing all these obstacles. Our kids are doing wonderfully well. It’s important to also monitor that change over time because there’s going to be periods of time where things are going to be a little bit harder. For example, during adolescence we see an increase in anxiety and depression, but then that resolves. So I think we just need to be mindful of developmental timeframes. We need to be mindful of the difference in parent’s expectations and children’s expectations, and we need to just have an open conversation with medical providers to make sure that we’re all moving in the right direction, and that’s to improve the child’s quality of life and overall wellbeing.
Host: So important. Really so important the work that you're doing. Thank you so much Dr. Zebracki. That wraps up another episode of Pediatric Specialty Care Spotlight with Shriner’s Hospitals for Children in Chicago. Head on over to our website at shrinerschicago.org for more information and to get connected with one of our providers. If you found this podcast as interesting as I did, please share on your social media. Share with friends and family. Because that’s how we all learn from the experts at Shriner’s Hospital for Children in Chicago together. Done miss all the other interesting podcasts in our library. Until next time, I'm Melanie Cole.
Melanie Cole, MS (Host): Valid and reliable measures are so important in the evaluation of clinical functioning and management and research interventions for children with spinal cord injuries. Here to tell us about that today and quality of life is my guest Dr. Kathy Zebracki. She’s the chief of psychology at Shriner’s Hospitals for Children in Chicago. Dr. Zebracki, such a pleasure to have you on. Tell us about what I said in my intro. What is quality of life and health related quality of life? Why is that important?
Kathy Zebracki PhD (Guest): Quality of life—according to the World Health Organization—is really defined as the individual’s perception of their life. It could be in reference to their culture, their value systems in which they live, their relationship with their personal goals. Health related quality of life is specific to their perceived physical health, their mental health, their social health and social functioning, and their emotional functioning over time. Health related quality of life is particularly important in children with any sort of chronic condition or physical disability.
Host: So while it’s not always feasible or fair to compare the health related quality of life for children and adolescents with mobility impairments—spinal cord injury and the like—with children that don’t have those things. What are the main things that you’re looking for when you study quality of life and how do you compare and contrast those two things?
Dr. Zebracki: You're right. You can't compare on a measure of health related quality of life with a child without a chronic condition or physical disability with someone who does. The reason for that is because their daily is different. For example, a child with a spinal cord injury might have some difficulties with activities of daily living. They might need more help going to the bathroom. They might need help getting dressed whereas a child without that mobility issue will not. So it’s not as important to the child without a disability as it is to a child with the disability. So it’s really important when looking at health related quality of life to understand the specific condition or disease and the different domains it impacts on that child’s day to day life.
Host: So when you're studying pediatric quality of life, tell us about what you are looking for and how this is studied. Just tell us how this all works.
Dr. Zebracki: So with pediatrics it’s particularly challenging because, in general, children with or without ta chronic condition is changing. A child at age of two is very much different than a child at the age of 12 and 15. So we have to adjust for those developmental stages, those meaningful aspects of their life. Such as friendships will become stronger as they're older than when they're younger. So we have to take that into consideration, but then we also have to take into consideration the child’s physical condition. So a spinal cord injury will also change over time. There’s certain aspects that might be more relevant at younger ages than at older ages. When you're looking at health related quality of life, you're really looking at everything that a typical developing child experiences, but also everything in that context with living with a spinal cord injury.
Host: So until recently there were very few measures appropriate for measuring outcomes in youth and emerging adults with spinal cord injury. Tell us a little bit about the aim of your studies to develop and validate these kinds of specific pediatric protocols. Speak about some of the psychosocial aspects of what you're seeing.
Dr. Zebracki: So there is a pediatric quality of life measure. It’s been validated in children in the general population and then there’s other versions that have been validated with children with other chronic illnesses and diseases, but not with spinal cord injury. One of the main concerns that we had, and the reason we started this study, is the general quality of life measure, the first few questions asks how hard is it for you to walk around the block? Or how hard is it for you to keep up with your friends? Right away children with a spinal cord injury, they're not exactly sure how to respond. Are they responding—One, they can't walk. So the answer is either very hard. Or are they responding, “Well, I can keep up with them, but it’s in my wheelchair.” So it’s very confusing and it’s not really a good assessment of what is going on with these children.
So the purpose of this study is to develop a quality of life measure that is specific to children and young adults with spinal cord injury. Our range goes from age two up to age 25. Again, because there’s such variation and developmental needs and areas of functioning and domains that are so important. We’re looking at a self-report measure. So ages 5 through 25 will be able to complete the measure on their own. There's a parent measure for those age groups, and then there’s also going to be a parent measure alone for ages two through four just because children at those ages will have more trouble reading or aren’t reading at that level yet.
Host: Tell us a little bit about psychosocial. I mean, you're a psychologist. How do you measure or evaluate quality of life and health related quality of life when it comes to mental health of children with mobility impairment?
Dr. Zebracki: So excellent question. So we ask questions in general about do these areas bother you? If so, at what level do they bother you? One example that’s relevant to psychosocial health would be pain. People with spinal cord injury can experience pain. Some may be able to tolerate pain and move on and continue participating whereas others aren’t able to. They're not able to do things that they should be doing. The job of a child is to participate in school, to participate in social activities to gain skills that are eventually going to help them have a successful career in the future, live independently, and so forth. So we’re really looking at participation. We’re looking at how children are able to be in the community, and then how that impacts their mental health. So if they want to participate in a sport, they should be able to. That develops extra skills. Maybe they're not a sports person and they want to do art. If their spinal cord injury or environmental factors aren’t enabling them to do that, well then that will increase anxiety, that will increase feelings of sadness, can increase depressive mood disorders, and so forth.
Host: How is this information and your studies helpful to patients and their families? What would you like for them to take away from the importance? Because as a parent, we all want our children to have a good quality of life and a good health quality of life. So what would you like them to take away from this study about how important it is that these things are able to be evaluated and measured.
Dr. Zebracki: I think two things would be—The take home measures would be one is that parents and children are going to have different opinions about what is most important for their child or for themselves. We have sections about worrying. A child may be worrying about things that a parent may not be worrying and vice versa. I think that needs to be brought out into the conversation and discussion with your medical provider.
There’s also the importance that yes, we are worried about mental health. We are worried about increase in depression and anxiety, but we also need to be mindful of how strong and how resilient our children and families are. To see how we can even strengthen and push of children who might be struggling into becoming more resilient and strong, even though they're facing all these obstacles. Our kids are doing wonderfully well. It’s important to also monitor that change over time because there’s going to be periods of time where things are going to be a little bit harder. For example, during adolescence we see an increase in anxiety and depression, but then that resolves. So I think we just need to be mindful of developmental timeframes. We need to be mindful of the difference in parent’s expectations and children’s expectations, and we need to just have an open conversation with medical providers to make sure that we’re all moving in the right direction, and that’s to improve the child’s quality of life and overall wellbeing.
Host: So important. Really so important the work that you're doing. Thank you so much Dr. Zebracki. That wraps up another episode of Pediatric Specialty Care Spotlight with Shriner’s Hospitals for Children in Chicago. Head on over to our website at shrinerschicago.org for more information and to get connected with one of our providers. If you found this podcast as interesting as I did, please share on your social media. Share with friends and family. Because that’s how we all learn from the experts at Shriner’s Hospital for Children in Chicago together. Done miss all the other interesting podcasts in our library. Until next time, I'm Melanie Cole.