Chronic Fatigue, Palliative Care, ADHD & Tics – PediaCast 339
- Join Dr Mike for another edition of PediaCast! This week we cover chronic fatigue syndrome, tackle parental debt, and explore the benefits of water coolers in the school cafeteria. Dr Lisa Humphrey and Laura Rozcicha stop by the studio to talk about pediatric palliative care. And then—in our Research Round-Up segment—we consider ADHD medication & motor tics. Be sure to tune in!
- Chronic Fatigue Syndrome
- Myalgic Encephalomyelitis
- Parental Debt
- Water Jets & Obesity
- Palliative Care
- Pediatric Hospice
- ADHD Meds & Tics
- Dr Lisa Humphrey
Medical Director, Palliative Care
Nationwide Children’s Hospital
- Laura Rozcicha, MSW, LISW-S
Manager, Palliative Care
Nationwide Children’s Hospital
- Dr Mike on Digital Dads (podcast)
- Chronic Fatigue Syndrome – Information and Help
- Palliative Care at Nationwide Children’s Hospital
- Palliative Care When There Is No Cure (700 Children’s Blog)
- Home-Based Palliative Care (Nationwide Children’s)
- Inpatient Palliative Care (Advanced Illness Management)
- Hospice Care at Nationwide Children’s Hospital
- Child Life Specialists – PediaCast 290
- Music Therapists – PediaCast 310
- Pediatric Home Care Conference (April 7, 2016)
- Meta-Analysis: Risk of Tics Associated with Psychostimulant Use
Announcer 1: This is PediaCast.
Announcer 2: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children’s, here is your host, Dr. Mike.
Dr. Mike Patrick: Hello everyone, and welcome once again to PediaCast. It’s a pediatric podcast for moms and dads. This is Dr. Mike, coming to you from the campus of Nationwide Children’s Hospital. We’re on Columbus, Ohio.
It is Episode 339 for February 10th, 2016. We’re calling this one “Chronic Fatigue, Palliative Care, ADHD and Tics”. I want to welcome everyone to the program.
So, as you know, we’re a podcast. Podcasts got started back around 2005, 2006. We’ve been around since 2006. We were kind of born at the very beginning of the podcast era and had been bringing parents news they can use and interviewing pediatric experts, answering listener questions really since 2006. So going on ten years, I think our ten-year anniversary will end up being in July of this year. We’re at Episode 339.
But I think podcasts, just my observation was that, they were kind of big there in 2006 to 2008. And then, other forms of social media kind of eclipsed podcasting a little bit including the blog and Facebook, Twitter and such. Although they started around 2006 as well. But, podcasting, I think, is kind of coming back into its own a little bit. We’ve seen some very popular podcast out there like Serial from NPR — you may have listened to that one — and there are lots more out there as well. In fact, it seems like we’re adding to the podcast family on a fairly regular basis.
I listen to podcasts. One of my favorite podcasts that I like to listen to in the parenting realm, other than PediaCast of course — not that I really listen to this show, since I listen to it as it’s coming out of my mouth — one of my favorite though for parents is one called Digital Dads with Brent Basham and Andrew Currie.
They were nice enough to invite me on to their show a couple of weeks ago. Again, Digital Dads. You can find that, just Google Digital Dads. It’s also in iTunes, of course.
And so, I had an unscripted appearance on their program. I have to tell you, there is a lot of scriptwriting that goes along with this particular podcast, because I want to keep it evidence-based. I want to answer your questions in a responsible way, and sometimes that takes looking things up and making sure, hey, yeah, that’s still what we think and the right thing and want to get you the latest and best and most trustworthy information. And so, there’s a lot of writing that down.
Well, this was definitely an unscripted 60- to 90-minute appearance on Digital Dads. So, you may want to check that out. We talked about everything from constipation to ear infections to babies sleeping through the night, toddlers getting up in the evening when you’re trying to enjoy yourself at home and it’s time for the toddlers to go to bed, but they don’t want to go to bed. They keep coming down the stairs, and they want you to come up, bring them one more glass of water. So we talked about kind of behavioral plan for keeping your toddler at their bedroom at night.
So be sure to check that out, Digital Dads. I’ll put a link to it. I think it was Episode 54. I’ll put a link to it in the Show Notes for this episode, 339, over at PediaCast.org, so you can find it pretty easily. But I do highly recommend Digital Dads with Brent Basham and Andrew Currie.
So what do I have for you this week on PediaCast? Well, first off, news parents can use, we’re going to talk about chronic fatigue syndrome a little bit. It’s fairly common in teenagers. So we’ll talk it through. It’s one of those things that’s a little bit nebulous because it can be confused with depression and with other medical conditions that can cause fatigue. So it’s kind of a diagnosis of exclusion, there’s not really like a test that you can do for chronic fatigue syndrome. So we’ll talk about that a little bit.
We’re also going to cover parental debt and the social and emotional well-being of our kids in response to debt. It turns out some types of debt are actually good for our kids and family, as we think about mental health, while other types of debt aren’t so good. So we’ll take a look at which ones are which and what you can and should do about it.
Then, we’ll take a look at free water dispensers in public schools. Now, I’m not talking about drinking fountains but actually water machines to fill up cups and bottles with the cold H2O. Could simple water machines have an effect on the weight of our kids? Might this be another way to combat childhood obesity? Then, you can do some homework on that. Does your school have water dispensers and if so, do your children use them?
Important considerations, as we not only think about the health and well-being of our kids and childhood obesity and health of our communities but also our role as an advocate for our kids as it relates to the school district. So, if your school doesn’t have water dispensers, this may be something that you would be able to advocate for and maybe get that on board at the school.
After that, we’re going to slide in to our interview segment this week. What exactly is pediatric palliative care? It’s different than hospice and might just be the very thing that your family needs especially if you have a child with a chronic or a life-limiting illness. Or, you find yourself at frequent doctor appointments or frequently in the hospital with your child due to a complex medical condition.
So, we’ll explore the nuts and bolts of palliative care with the team from Nationwide Children’s. That’s coming up after our new segment. Even if your family doesn’t have a need for palliative care yourself, I’ll bet you know a family who does and wouldn’t it be great if they heard about this resource from you? It’s something that will definitely help their family and improve the quality of life for their medically complex child and their entire family. So more on that coming your way.
And then, finally, we’re going to add to our research roundup this week. Does your child have ADHD and do they have motor tics? If so, could their psychostimulant stimulation… So we’re talking about things like methylphenidate (Ritalin, Metadate, Concerta are the brand names for the methylphenidates). There’s also the amphetamine-based ADHD drugs like Adderall, Vyvanse. You know the ones I’m talking about if your child has ADHD. Could these medications be the cause of motor tics? And, if your child doesn’t have a tic and they’re on these kind of medications, could ADHD stimulants cause motor tics? Or, could they make an existing motor tic worst?
So we’ll consider these questions as we uncover another type of research study. This type called the meta-analysis. So we’ll also explain exactly what that means, what is a meta-analysis? Just so you understand the research process a little bit, we’ll put it in terms parents can understand and not go too deep into the statistical part of it.
So that’s going to be in this week’s research roundup. Don’t forget, we also answer listener questions from time to time on this program. And I’m in need of some new ones. No question is silly or dumb or stupid, ask away — seriously. Anything that’s on your mind, I’d love to hear from you. It’s easy to get in touch. Just head over to PediaCast.org and click on the Contact link.
Also, I want to remind you, the information presented in our program is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals. So, if you have a concern about your child’s health, be sure to call your doctor and arrange a face-to-face interview and hands-on physical examination.
Let’s take a quick break and I will be back with news parents can use right after this.
Dr. Mike Patrick: In what is believed to be the biggest study of chronic fatigue syndrome in children, researchers at the University of Bristol in the United Kingdom reported at the Journal of Pediatrics that about 2% of all 16-year-olds suffer from chronic fatigue lasting more than six months and nearly 3% suffer from fatigue symptoms lasting more than three months. And, those who were affected, on average, missed more than half a day of school every single week.
Researchers looked at chronic fatigue syndrome, which is also known as Myalgic Encephalomyelitis, in 5,756 participants in the Children of the 90s study and found that girls were almost twice as likely as boys to have the condition. They discovered that chronic fatigue becomes more common in girls between 13 and 16 years of age but did not find a similar pattern for boys.
Children from families experiencing greater adversity were more likely to have the condition, dispelling the commonly held view that chronic fatigue is a middle-class illness or as the investigators put it, ‘yuppie-flu’. The definition of adversity includes poor housing, financial difficulties and a lack of practical and/or emotional support for the mother.
Researchers point out that the diagnosis of chronic fatigue syndrome in the study was not made by a doctor but instead based on responses to questionnaires sent to both the teenagers and their parents.
Dr. Esther Crawley, a pediatrician who specializes in the treatment of chronic fatigue syndrome and senior author of the report, says, “This is an important study because it shows that chronic fatigue is much more common in teenagers than previously recognized. Treatment at this age is effective for most children but few have access to treatment in the United Kingdom.”
She goes in to say, “Children seen in my specialty clinic at the Royal United Hospital in Bath only attend school two days each week on average. This means only the most severe cases are getting help. As pediatricians, we need to get better at identifying chronic fatigue syndrome, particularly in those children from disadvantaged backgrounds who may be less able to access specialty care.”
Dr. Simon Collin, the report’s lead author, adds, “Chronic fatigue is a debilitating illness which has a huge impact on the lives of children and their families, and the results of our study underscore the need for further research into the cause and improved treatment of the condition in children and teenagers.”
Mary-Jane Willows, chief executive of the Association of Young People with Chronic Fatigue, says, “We’re encouraged by the results of the study because at last, our children, their families and those fighting for a diagnosis have the evidence they need. Evidence confirming the condition as not only being common but, more significantly, evidence reflecting the high level of suffering with which they are forced to live.”
She adds, “Our own research in 2015 revealed that 94% of children with chronic fatigue syndrome report being disbelieved and, combined with the results of this study, we hope this unequivocal need for a far better level of understanding from health and education professionals will signal the beginning of a shift in access to treatment. Currently, only 10% of those suffering with chronic fatigue syndrome in the United Kingdom have access to a specialist. We hope this research leads to a reduction in the high number of unjustified allegations made against parents.”
Sonya Chowdhury, chief executive of Action for Chronic Fatigue, says, “This important study, analyzing data from parent- and child-completed questionnaires, highlights the increased prevalence of chronic fatigue syndrome among 16-year olds, pointing with even greater urgency to the need for effective treatments. We know from contact with the parents of children with chronic fatigue syndrome that this disabling condition impacts on every area of family life. The reality is that many young people miss considerably more than half a day of school each week, while for the most severely affected, their disabling symptoms are compounded by the isolation and loss that comes with being house- and/or bed-bound.”
So chronic fatigue syndrome, also known as Myalgic Encephalomyelitis, got to love that, it’s more common than previously thought. Now, you may be wondering, this is a podcast that’s based in the United States, why are we covering research from the United Kingdom? Well, first, we care about the people in United Kingdom and we do have listeners there as well.
But also, there’s just not a lot of research on chronic fatigue that’s happening in the United States. So kind of United Kingdom’s on the forefront of this. And, it is true that even me as a pediatrician, I don’t really feel like I have a strong understanding of chronic fatigue and it will be easy to say, Well, this must be depression because it would seem that the symptoms can kind of be similar for both of those things. So I think is definitely something that we need more awareness on, more research on. So interesting stuff.
What exactly is chronic fatigue syndrome? What symptoms are we talking about? How debilitating do they need to be for it to count as a diagnosis? What causes it? How does one seek help from it? All great questions and we don’t really have a ton of great answers at this point other than to outline, “Well, this is what it looks like. Being tired all the time.” Sore throat, actually, is a frequent thing that you see with chronic fatigue syndrome.
So if you want to know more about it, I do have a good resource for you. That just gives you some more information about chronic fatigue if you think that you’re suffering from it or your kids are or someone that you know. I’ll put a link to that resource in the Show Notes for Episode 339 over at PediaCast.org for those who would like to learn more.
Certain types of debt that parents take on may have adverse effects on children’s emotional well-being. This, according to a new study by researchers at the University of Wisconsin at Madison and Dartmouth as published by the journal Pediatrics.
The study sheds new light on the link between debt and family well-being. Previous research on debt has typically focused on how it affects the mental health and well-being of adults and has yet to explore how parents’ debt may impact a child’s well-being.
According to investigators, children who had parents with higher levels of home mortgage and student debt had a greater social and emotional well-being with fewer behavioral problems than children whose parents have less mortgage and student loan debt. The results indicate that children may benefit from an environment in which their parents own a home and/or have higher levels of education. Yet, children with parents that had either higher levels of or increases in unsecured debt like credit cards, medical debts, payday loans and other types of debt that is not tied to an asset, these children were likely to experience poorer social and emotional well-being.
High levels of unsecured debt may create stress or anxiety for parents, which may hinder their ability to exhibit good parenting behaviors, and subsequently affect the well-being of their children.
This study was led by Dr. Lawrence Berger, director of the Institute for Research on Poverty and professor and doctoral program chair in the School of Social Work at the University of Wisconsin-Madison, and by Dr. Jason Houle, assistant professor of sociology at Dartmouth.
Dr. Houle says, “‘It makes intuitive sense that debt that can help you improve your social status in life and making investments, such as taking on student loans to go to college or taking on a mortgage to buy a home, might lead to better outcomes, while taking on debt that is not tied to these investments (such as credit card debt), may be more harmful. That is indeed what we find.
“Overall, our findings support the narrative that debt is a “double-edged sword,” as my colleague at Ohio State University, Dr. Rachel Dwyer, puts it. Debt can bridge the gap between a family’s immediate economic resources and the costs of goods and therefore can be a valuable resource. But, at the end of the day, it has to be repaid with interest and sometimes with a great deal of interest when it comes to unsecured debt.”
Researchers used population-based data from the National Longitudinal Study of Youth 1979 and Children of the NLSY-79. They studied over 9,000 children (ages 5 to 14) and their mothers annually or biennially from 1986 to 2008 through over 29,000 children-year observations.
To measure the social and emotional well-being of children, the study looked at a child’s total score on the Behavioral Problems Index (BPI), a set of 28 questions to mothers that looks at the frequency and severity of child behavior for children ages four and older.
The study measures the total personal debt that a parent may have which did not include debt from having a business. These personal debt included home debt from mortgage or home equity loans, education debt from student loans, automobile debt, and unsecured debt, such as credit cards, medical payments, payday loans and other types of debt not tied to an asset.
An important strength of the study is that it compared the same families over time and examined how children’s behavioral problems change as their parents plunge into and out of debt over the course of their childhood, rather than comparing different families that have varying levels of debt at a single point in time.
Dr. Houle notes, “Most of the time in the social sciences, for a question like this, we’ll use survey data and statistical analyses to make comparisons. If we’re interested in how debt is linked to child well-being, we’ll compare children in families that have lots of debt, to families that have less debt. If children in those families that have lots of debt are doing worse than the kids in the families with less debt, we might say that debt could be an explanation why. A problem with this traditional analysis is that we’re comparing different families. That’s what we call a “between-family” comparison. And, families are different for lots of reasons — correlation is not causation, as they say.
“What we do in this study is a bit different. That is, we follow the same families over time and essentially asked what happens to children in families as their parents take on or discharge debt over time. Thus, we’re fundamentally making a within-family comparison. Instead of comparing different families to one another, we’re comparing families to themselves over time.
“This is by no means a perfect solution to the correlation-is-not-causation problem but it can make for a more compelling case and suggests that if a family takes on a great deal of unsecured debt, their children may feel the consequences of that debt.”
According to the Federal Reserve Bank of New York’s Household Debt and Credit Report, as of third quarter 2015, total household debt was $12 trillion. Researchers point out, with the cost of living today combined with the deregulation of financial policies that may have perpetuated the rise in debt, some families are taking on high levels of unsecured debt to help make ends meet without realizing the impact that this may have on their child’s well-being. The findings present an opportunity to educate families about the risks that may be associated with taking on high levels of unsecured debt.
Dr. Houle says, “I think it is common to assume that those who are struggling with debt are those who have made poor financial decisions or are irresponsible but the research shows that the reality is quite different. For those who are taking on a lot of credit card debt, or are buried in medical debt, or have payday loans — for many, it’s the only choice they have.
“In an era where wages have stagnated and costs have risen but credit has become more readily available (due in large part to financial deregulatory policies at the state and federal level over the past three decades), families are going into debt to help make ends meet and keep their head above water. “Fundamentally, if we’re worried about the positives and negatives of debt, we should ask one, how all of this credit became available in the first place; and two, why families are borrowing.
However, at a more immediate level,” he says, ” if some forms debt are stressful for families and their children, we might ask how we can alleviate some of that stress. While it is beyond the scope of this study, others have pointed towards financial counseling or financial education as potential short-term solution. In the confines of a pediatrician’s office, a referral to one of these resources may help in the short-term, but it doesn’t solve the larger, structural issues.”
So there you have it, some kind of debts are correlated with good mental health outcomes such as home mortgage and educational loan. I knew that makes sense. That makes sense on the surface. If you have a family, they own their own, they’re living in the home, parents have a college education, you could expect there to be more stability, higher socioeconomic status. And so, emotional and mental well-being, you can see, may benefit from that.
On the other hand, if you have unsecured debt, such as lot of credit card debt, that also is tied into social and emotional well-being for children but in a negative way.
So that means, if you find yourself with lots of unsecured debt, it is important to get help. For the pediatric providers out there, this is important to us, because we are in the business of taking care of kids and families, including their social and emotional wellbeing. So maybe we should start to ask about debt in the exam room, not in a judgmental way that’s meant to point parents toward financial counseling resources when they need it, when they find themselves in the need of the help. So definitely something to think about.
Kids appear to choose good old H2O when given the option. This, according to NYU researchers who found that making water available in New York City public schools through self-service water dispensers in cafeterias resulted in small but statistically significant decline in student weight.
The study was recently published in online issue of JAMA Pediatrics. The research team reports on analysis of more than one million students in 1,227 elementary and middle schools across New York City and compares students and schools with and without the water dispensers which are called “water jets.” It’s the first study to establish a link between the water dispenser program and weight loss.
Dr. Brian Elbel, senior investigator of the study and an associate professor in the Department of Population Health at NYU, says, “This study demonstrates that doing something as simple as providing free and readily available water to students may have positive impacts on their overall health, particularly weight management. Our findings suggest that this relatively low-cost intervention is, in fact, working.”
In 2009, New York City’s Department of Health and Mental Hygiene and Department of Education began introducing water jets — large, clear electronically powered jugs with a push lever for dispensing water — into area schools. Each water jet costs about $1,000. About 40% of schools received a water jet over the course of the study period which included the academic school years 2008-2009 through 2012-2013.
Using height and weight data collected annually by schools to assess the fitness level of students, the investigators compared BMI and overweight status for all students before and after the introduction of the water jets. The results showed positive change. Students at schools that had water jets for at least three months saw a reduction in standardized body mass index of .025 for boys and .022 for girls, compared to students at schools without the water jets. Adoption of water jets was also associated with a 0.9 % point reduction in the likelihood of being overweight for boys and a 0.6% point reduction for girls.
The authors conclude that easy access to water during lunch may lead kids to substitute it for caloric beverages like chocolate milk, juice and soda. The authors note that New York City public schools stopped allowing the sale of sugar-sweetened beverages before the study period, but students can still bring them from home.
A 2015 study published in the American Journal of Public Health by Dr. Elbel and other colleagues found that water consumption increased three-fold just three months after schools introduced water jets. In addition, between the 2008 and 2013 academic years, milk purchases dropped at water jet schools by about 12 half-pint cartons per student per year.
Dr. Amy Ellen Schwartz, Director of the NYU Institute for Education and Social Policy, says, “Decreasing the amount of caloric beverages consumed and simultaneously increasing water consumption is important to promote children’s health and decrease the prevalence of childhood obesity.”
Daniel Patrick Moynihan, Chair in Public Affairs at Syracuse University’s Maxwell School of Citizenship and Public Affairs adds, “Schools are a natural step for such interventions.” He says, “Just under 40% of children are overweight or obese in New York City. In addition to installing water jets in schools, the city has enacted policies to combat obesity and support child health including improving nutrition standards, expanding fruit and vegetable offerings, removing soda from vending machines and replacing whole milk with low-fat milk.”
So, again, my question for parents out there — do your children have free access to water during lunch and at other times throughout the day? Not just drinking fountains but actually to be able to fill up the bottle and have water for their beverage that’s free and easy to access, not you have to buy it in a bottle. Do they have access to that? If not, they should and if not, why not? Maybe the school needs you as a parent advocate to take up the matter and help make a change.
Dr. Mike Patrick: Dr. Lisa Humphrey is Medical Director of the Pediatric Palliative Care Program at Nationwide Children’s Hospital and an assistant professor of Pediatrics at the Ohio State University College of Medicine. Dr. Humphrey received her bachelor’s degree from Columbia University in New York, her medical degree from Caste Western Reserve University in Cleveland and completed a pediatric residency and fellowship in Pediatric Hospice and Palliative Care at the Children’s Hospital of Philadelphia.
Before joining Nationwide Children’s in 2013, Dr. Humphrey serves as medical director of Palliative Care at Rainbow Babies and Children’s Hospital in Cleveland. That’s what she’s here to talk about today, palliative care. So let’s give a warm PediaCast welcome to Dr. Lisa Humphrey.
Thanks for joining us today.
Dr. Lisa Humphrey: Thanks so much for having me.
Dr. Mike Patrick: We also have Laura Rozcicha in the studio today. Laura is a social worker with Nationwide Children’s and serves as Manager of our Hospice and Palliative Care Programs. So a warm welcome to you as well. Thanks for stopping by.
Laura Rozcicha: Thank you so much.
Dr. Mike Patrick: Really appreciate both of you taking time out of your day to talk to us and educate us about palliative care.
Dr. Humphrey, let’s start with you. If you could just define for us, what exactly is meant by the term palliative care?
Dr. Lisa Humphrey: Absolutely. It is both a medical subspecialty as well as a philosophy of care. And so, when we talk about doing palliative care, we’re focusing on a certain population — children, young adults, adults who are faced with a life-threatening, life-limiting conditions, who may or may not be pursuing curative or life-prolonging therapies. But the journey is difficult. The therapies are difficult. The emotions are difficult, and therefore, we as profession of medicine have determined that to provide best care, we need to have a full complement that cares for the total person. And that theory has evolved. So has palliative care.
And so, our emphasis is on mitigating or minimizing the suffering that can occur from the illness or the therapies required to try and care for the disease process. So we focus on pain. We focus on the emotions, the spirituality and the social impact of having diseases.
Dr. Mike Patrick: And not just in terms of the child but really, the whole family as well.
Dr. Lisa Humphrey: Absolutely. Absolutely. To do good pediatrics is always family-centered care, and nothing could be more applicable than a child who’s facing a very serious condition and so, a lot of our emphasis is on the full family .
Dr. Mike Patrick: How is that different from hospice then?
Dr. Lisa Humphrey: Say, 15, 20 years ago. the terms would have been synonymous. Today, however, we’re answering the request of families that many of the services provided by hospice care should be available to children, patients, families who are pursuing care for life-prolonging therapies. So, now, we say that hospice happens to be one type of palliative care designated for end of life care, but palliative care should happen many, many, months, years before hospice care.
Dr. Mike Patrick: So, hospice really really is a form of palliative care, kind of more at the end of life. But really folks who have any sort of life-limiting condition complex care, chronic illnesses where they’re in and out of the hospital really would benefit from the palliative care program.
Dr. Lisa Humphrey: Perfectly stated.
Dr. Mike Patrick: Who makes up the team? So I imagine that this is a team effort in terms of supporting patients and families with these complex issues. What sort of folks make up the palliative care team? Laura?
Laura Rozcicha: We have two branches. We have inpatient team which has physicians, nurse practitioners, chaplain and a social worker. And on the home-based side, we have physicians who for us bridge both inpatient and the home-based world. In the home-based side, we have nurses, chaplains, social workers, volunteers, music, massage, child life and therapeutic rec therapist. So we a lot ancillary support for these patients and families.
Dr. Mike Patrick: Yeah, a lot of folks come in and go but parents really need this sort of support, and there may be services there that on their own, they wouldn’t think about that they need. And maybe, their primary care doctor wouldn’t think about that they need that particular service. But by getting in touch with you, you have the whole team to be offered to the families.
Laura Rozcicha: Yeah, we do.
Dr. Mike Patrick: What sort of services then does this team provide? Dr. Humphrey?
Dr. Lisa Humphrey: So, as you’ve heard, we have many, many interventions through different specialties that can be offered. The real goal of palliative care is to start the conversation with the family or the patient and say, “What’s important to you?” And then, to quantify that as either rules by which we’re going make decisions or “Here’s how we want to optimize my day.”
And then, we, as a healthcare team, the palliative care team, need to craft the care plan very specific to those goals of care, go back to the primary teams and say, “Here’s what’s important to the family. They’re a very spiritual family. Let’s make sure that their personal pastor or our chaplains are there when difficult decisions need to be made.” “This child would like to go back to school. We need a pain regimen that’s going to allow the child to go back to school and enjoy himself or herself.”
Dr. Mike Patrick: So really, each child and each family is going to be very unique in terms of what services they’re going to need and they have to tailor what you’re doing to each specific situation.
Dr. Lisa Humphrey: Absolutely.
Dr. Mike Patrick: And it seems that there’s also a lot of communication that is just a part of this, especially when you get a complex child, who they have this specialist and that specialist. And sometimes, especially in a busy hospital, it’s difficult for everybody to get in one room and talk together. So, palliative care would also help facilitate communication between different aspects of the child’s team.
Dr. Lisa Humphrey: I think both with care coordination. It’s very complicated to have a complex child and often many specialties, so trying to help communication. But also, a really good way of describing palliative care is the primary doctor (who’s so very important to that patient) and the parents of the patient (who’s so very important to that relationship between the doctor and patient) sometimes need a third party to just listen to them talking to each other and say, “You know what I actually hear as a theme emerging?” And sometimes, there’s that awareness that we can bring and help flourish the conversation on.
Dr. Mike Patrick: Yeah, absolutely. And this then really speaks toward quality of life, not only for the patients themselves but for the whole family. And then, for the providers too in terms of the quality healthcare that they’re able to provide by having someone who’s kind of looking at the overreaching picture, would you say?
Dr. Lisa Humphrey: Absolutely. And I think one of the things we’re really hearing, and learning and honoring for the families is when you heard of one definition of quality of life, you’ve heard exactly one definition of quality of life. That is really important that we not, as a healthcare team, say “We know what the quality of life is for your child,” but rather, “Please teach us what’s important.”
Dr. Mike Patrick: Yeah, absolutely. Let’s talk a little bit about the specific types, just some examples of patients that would qualify for palliative care services.
Dr. Lisa Humphrey: So, we do a wide array of patients. We will take care of children who have cancer and are receiving therapies. We try to support and help them along the way. We have children who have very serious seizure disorders, very difficult to control that’s impacting their quality of life. We try to help them out. We have children who have multiple complex health care issues that unfortunately science and medicine can’t fix. And so, we work with them closely over their journey as well.
Dr. Mike Patrick: Yeah, so really anybody with burdensome symptoms and treatments, and this is really having an impact on their day to day life would really qualify for palliative care services. Especially if it’s complex, they have a medical team that involves lots of different specialists in and out of the hospital. And there’s probably a lot of parents out there who are thinking, “I’m in that situation but I’ve never been connected with palliative care.” Or maybe, “In whatever city that I’m in, I’m not sure if palliative care is even available.” How and when — let’s start with when — when should someone get connected with a palliative care team?
Dr. Lisa Humphrey: We’re really pushing for at the time of diagnosis and when the family is comfortable meeting us. So, often for a cancer diagnosis, sometimes after hearing about that and hearing what the care plan is going to us, you may meet us. It may be when you feel that you’re struggling with trying to define your child’s quality of life and you seek input.
Here at Nationwide Children’s, we’re pretty ask for us. You can really ask for us and most of the healthcare team will know how to access either the home program or the inpatient side. If you’re outside of Columbus and at another city, I would encourage you to first ask your healthcare provider if those services exist. I wish I could say every community, every hospital has it, but it is a newer field that we’re still trying to populate.
If you need more resources now, you can usually Google palliative care and several resources will emerge. The National Health Palliative Care Organization, NHPCO.org, can help you with that. Also, I believe it’s called the Palliative Care Network, can help you find resources in your community.
Dr. Mike Patrick: Absolutely. And for the primary care providers who are listening to this, it’d probably be good idea just kind of researching in your area what’s available. So that when families ask you, you know where you’re going to refer them how to get a hold of a palliative care team.
Pediatric-specific, for the most part?
Dr. Lisa Humphrey: I think that would be a great place to start. However , our adult colleagues recognize that many communities may not have pediatric palliative care and they’re really doing a wonderful job of saying How can I help?
Dr. Mike Patrick: Laura, what kind of services are offered in the home for folks who are with a palliative care team?
Laura Rozcicha: In the home, we provide, based on assessment, whatever the family feels like they need, whether it’s spiritually, whether we have a child with irritability. We’re looking at holistic interventions as well.
We have a little one who is just sort of chronically irritable because of their underlying diagnosis. We might talk about massage therapy for that patient. What can we do besides the medication which our physicians and the primary physicians are wonderful at providing for our patients? What else can we do?
We have a music therapist who’s wonderful. We have a lot of non-verbal patients. We have some deaf-blind patients. So we’re assessing that whole child and saying, “Is music therapy something that could be helpful?” and we’ve had some beautiful outcomes with that where moms and dads are able to experience their child responding to that type of intervention at the comfort of their home because someone on my team has said, “Hey, I wonder if that kid would benefit from music therapy.”
We also offer child life. Our child life therapist is terrific at assessing the siblings. They’re often a victim of their sibling’s diagnosis and what attention goes to that child. So she works with them on what this means and why is happening but also spends some quality time with the siblings so that they know that they’re not forgotten, give them space to be able to express themselves as well.
Dr. Mike Patrick: And these services are all provided in the patient’s home. They don’t have to go to a clinic to meet with the music therapist, is that correct?
Laura Rozcicha: That’s correct. That’s the beauty of what we do. We have nurses on call 24/7 for about 55 patients who are in the home currently. The nurses are on call 24/7. We’re assessing what the family needs and it changes a lot of these children with life-threatening conditions. Some of those kids are pretty stable where they’re at and some kids decline over time.
So, the beauty of what we do is we develop a relationship with that family in their home. They know us. They’re comfortable with us. It allows for those challenging conversations — surgery, no surgery, quality versus quantity. Those are conversations that we’re comfortable having and then it gives the family a safe space to have those conversation. Then, we put in interventions in place based on our assessment.
Dr. Mike Patrick: I like what you said a few moments ago that it’s not really your job to take over the medications for the family, that they’re primary provider is still going to be managing that. So, when a palliative team gets involved in a child’s care, they’re not coming in and taking over, right?
Dr. Lisa Humphrey: Absolutely not. The first thing we say to families is we replace nobody. We are the backup choir to their primary doctors and a layer of support for the families and patients.
Dr. Mike Patrick: In terms of specific benefits, I think on the surface of it, I can see what added benefits and what services are available, but how does that really then translate into improved quality of life for patients?
Dr. Lisa Humphrey: I think the data will speak, too. If you have a palliative care team involved, you actually have lower anxiety score, lower depression scores. Actually, several seminal papers now show, that if palliative care’s involved, you actually live longer. So, from those sort of data points, I think it brings benefit.
The data points that are hard to capture in research because they’re so individualized to the person, comes down to stories. So, it’s the patient who is able to find his voice at 21, tells his mom he loves him and that it’s time to go home because here is his goals. And, it’s the 16-year-old I had who when she realized what her reality was and she was going to take ownership of it, she kindly said to me, she’s like “I’m going to go act like a rock star now,” and had three months of being at home acting like a rock star.
Dr. Mike Patrick: Absolutely. And so, in medicine, often we think about evidence-based but those anecdotal stories where someone’s life you make a difference it’s changed, that really speaks toward the value of what you folks do.
Then, I would suspect that really also has benefit for the family then as well, to see their child coping and comfortable. It takes some of the stress and burden off of them as well.
Laura Rozcicha: Many of our families, their goal has shifted to minimize hospitalizations. When one of our complex kiddos hits the emergency room, it can be really chaotic and stressful. Some families and have just decided that they would really prefer to see what we can triage at home and take care of and keep them at home. So one of our main goals as a team is to try to keep patients out of the hospital.
So whether that’s the 24/7 on-call nurse going out to the home, calling the primary physician and saying, “This is what I’m seeing. This is what I recommend,” and then avoiding that trip to the emergency room, that’s a huge stress relief for a family to be able to keep them out. So I think that’s one of the main benefits that we have.
Also, we haven’t talked much about just the anticipatory grief. So, we have many patients that are on service on home for years. We have some that are weeks and months. But there is a grief component always when you have a child with life-limiting condition or a terminal condition.
So our chaplain and our social worker do a beautiful job of talking about what does that look like? What are you afraid of? What can we put in place to help you feel good as the journey continues? And that means different things for every family, and we really tailor our intervention and support based on what it look like for that family.
Dr. Mike Patrick: I would imagine that the primary care providers or other providers in the medical team also benefit just from knowing that their family is being served well, that the quality of their life and mental health issues are all being addressed. It sort to take some of the pressure off so that they can really focus in on the medical condition.
Dr. Lisa Humphrey: That is our biggest hope, is that primary care physician can continue to do that part that is so integral to being a primary care physician — which is to guide, lead support and be central to that family. So we hope that we’re able to provide that.
Dr. Mike Patrick: Let’s say that I’m a primary care provider in a small town and I have a patient that I think would benefit from some of these kind of services. Do you travel very far?
Laura Rozcicha: Our home-based team travels in about an hour circumference around downtown Columbus. So we are in the contiguous counties around Franklin and we’re also in Morrow. So, Central Ohio, we serve fairly well and the inpatient team does a really nice job, if our patient is outside of our service area on the home-based side, of trying to coordinate with different palliative care or hospice programs as appropriate, to try to connect them with services.
We’re also very willing to support those teams. We get calls sometimes from hospice or a palliative care program that serves adults beautifully, but they’re getting a 13-year-old with cancer and they have some questions about that. Our team physicians and support staff are all happy to provide some guidance and support to them just with a little bit of a pediatric component.
Dr. Mike Patrick: So, anyone really can get in touch with you folks and consult and say, “Hey, what services should I be thinking about? What kind of things would benefit a family that’s dealing with this particular situation?” That’s great.
Dr. Lisa Humphrey: Absolutely.
Dr. Mike Patrick: So then, how is the best way for folks, I guess parents, providers, families, what’s the best way for them to get in touch?
Laura Rozcicha: I think the easiest way is on our webpage. It’s www.nationwideschildren.org/palliative-care. You can look on the right side column there and find the contact phone numbers for the inpatient team or the home-based team.
Dr. Mike Patrick: Great. And I’ll put links to those programs to those programs in the Show Notes for this episode, 339, over at PediaCast.org so that folks can find the information easily.
And those websites have lots of great information about what services that you provide a little bit more about the team and the different folks who make up the team. There’s brochures, frequently asked questions, really just lots of great information there.
And then, I understand that you’re having a Pediatric Homecare Conference coming up in April. Tell us a little bit about that.
Dr. Lisa Humphrey: Yes, it’s on April 7th and it’s entitled the Pediatric Homecare Conference. It will take place at 1105 Schrock Road in Columbus, Ohio at the Ohio Council for Homecare and Hospice Center for Excellence. And there will be several speakers speaking to both homecare and home-based palliative care and hospice issues.
They’ve given me the opportunity to speak and my colleague, Dr. Garey Noritz is actually the keynote speaker who’s a complex healthcare physician but also a palliative care physician, so there will be a very nice emphasis on that. And the intended audience will be for nurses, APNs, LPNs, homecare, palliative care, and hospice professionals.
Dr. Mike Patrick: Great. So great resource for anyone. And this is for healthcare providers but also families and parents could come to this conference?
Dr. Lisa Humphrey: Parents are always welcome at the conferences that we provide. We try to educate providers to help the families but we are always happy to have families there. I believe this conference has a parent panel which I think really speaks to the parent audience. But they’re also going to be expressing what life is like as a parent to the professionals who come in. I think that’s a perspective that needs to be heard.
Dr. Mike Patrick: So the target audience is healthcare providers who are involved in palliative care whether that’s nurses, nurse practitioners, physicians, social workers, anyone, but parents would be welcome if they had a particular interest. Is that right?
Dr. Lisa Humphrey: Yeah. yeah.
Dr. Mike Patrick: And I’ll put a link again for more information on how to register for that conference in the Show Notes at PediaCast.org, Episode 339.
All right, well, I want to thank both of you for stopping by. Dr. Lisa Humphrey, medical director of Palliative Care at Nationwide Children’s and Laura Rozcicha, manager of Palliative Care. Thanks both of you for stopping by and talking to us.
Dr. Lisa Humphrey: Thank so much for the opportunity.
Laura Rozcicha: Thanks.
Dr. Mike Patrick: We’re going to add to our research roundup today and talk a little bit about ADHD and motor tics. The title of the article that we’re going to be discussing is “Meta-Analysis: Risk of Tics Associated with Psychostimulant Use In Randomized Placebo-Controlled Trials.” This is a research study that came out of Yale and was published in the Journal of the American Academy of Child and Adolescent Psychiatry in September 2015.
I’m going to put a link in the Show Notes for this episode,339, over at PediaCast.org. We’ll put a link to the abstract, to the study from PubMed for those of you who are interested in seeing it for yourselves. And then, from there, there are options, if you want to see the entire article. Usually, that cause a little bit of money to be able to see the whole thing because we’re dealing with the publisher, with the Journal of the American Academy of Child and Adolescent Psychiatry. But it does give you the opportunity where you can see the entire article, and if you have access to health library, probably they subscribe to that journal and you’d be able to see it there, but at least we’ll give you a link to the abstract.
So again, the title is Meta-Analysis: Risk of Tics Associated with Psychostimulant Use In Randomized Placebo-Controlled Trials. We’re going to break down exactly what all that means. So the question before the researchers, might as well start with that, what is it that they’re asking? What are they trying to solve with their study? And so, the question before them is, considering children with ADHD, is psychostimulant use — so medicines like methylphenidate, Ritalin, Concerta, Metadate. Those are some of the brand names of methylphenidate type medications. And then, we’re also going to look at the amphetamine-based medications, things like Adderall, Vyvanse. So these are all psychostimulant medication used to treat ADHD.
So, considering kids with ADHD who are taking those types of medications, is psychostimulant use associated with an increased risk of new onset motor tics or worsening of existing tics compared with placebo?
The type of study that’s being done is a meta-analysis. So what is a meta-analysis? Well, it’s a statistical technique for combining the findings of smaller individual studies into one large data set. And the advantage of this is that you have a larger sample size, so you have stronger statistical power.
Now, a disadvantage is that the original studies often had a different purposes and weaknesses of the individual, original studies when you combine them together may be amplified. This creates an opportunity for agenda-driven bias because investigators, there’s the opportunity — and I’m not saying that they did that in this particular study, but just in a meta-analysis in general — investigators can kind of pick and choose which studies to include. So, you do have to be careful that you don’t have an agenda or you don’t have presuppositions of what the answer to your question is going to be, and you pick which studies are going to be involved in your meta-analysis based on your agenda.
So this is quite a bit different from the study in our last research roundup where we look at fussy babies and infant formula. That one was a randomized controlled double-blinded prospective study where we randomize participants into two study groups. Yeah, there were two study groups in that particular one but there could be one study group or multiple groups where you’re going to change some variable or your randomize them to a control group. Meaning, we just pick them at random which they were going to be, either in one of the study groups or in the control group.
The control group, you don’t change anything. Study groups, you change one variable and then you follow the groups forward and look for changes. And as long as that one variable was the only thing that you changed, then you can make the assumption that variable has something to do with the change that you saw in the entire group. So you’re going forward prospectively.
And, it was double-blinded because the participants did not know which group they were in, the control group or the study group. Also, the researchers who are collecting the data didn’t know which group a particular person was in. So that was a randomized controlled double-blinded prospective study.
In a meta -analysis, we take studies that have already been done and we combine the data and look for associations. As we pointed out, there are advantages and disadvantages of doing this.
OK, so what sort of studies did the investigators include in this particular meta-analysis. Well, they had some inclusion criteria for these studies that they were going to include. So, first, they had to be studies published in English. They had to have been published in a peer review journal. They had to be randomized prospective studies, like the fussy baby formula one that we talked about a few weeks back. So that’s nice. So they were well-designed studies and they also had to be double-blinded placebo controlled studies that directly compared psychostimulants and placebo and in which tics were documented in some way.
So, this is actually a pretty well-designed meta-analysis. The individual studies that we’re looking at were very closely related to what we’re looking for in this bigger study where we’re going to include all of these smaller ones. Plus, we have some criteria in place to ensure that these are well-designed studies.
Now, the tics that were documented, the motor tics, those didn’t have to be the main focus of the study. The main focus may have been how well a particular ADHD medicine-controlled symptoms compared to placebo but tics were documented for the study groups and for the control group.
So we really, we’re looking at pretty good studies here altogether. Studies where we randomized children to a study group and included a control group in there. Families and data collectors, again, they’re all double-blinded, so families and data collectors don’t know which group a particular child is in and we follow them forward prospectively. So, as we compare with a prospective study with a meta-analysis, this particular meta-analysis only included prospective studies so that does help increase the statistical strength of the study.
Furthermore, to make their data even stronger in answering their question, they only included studies that involved participants who are less than 18 years of age with ADHD or with a previously diagnosed tic disorder and they eliminated studies that included participants who had any sort of co-morbid psychiatric illness. So this had to be kids, less than 18 who only had ADHD and no other mental illnesses at all.
Investigators did a literature search for all the pediatric studies that involved psychostimulant drugs and they found 815 of them, but only 92 met their inclusion criteria. Of these 92, only 22 contained data on tics as side effects of psychostimulant medication.
So they ended up with 815 possible studies, but because of their inclusion criteria of which study they can include in their meta-analysis, they ended up with just 22 studies.
So they were looking for the proportion of children reporting tics as side effects of medication or worsening, if they already have them, in these 22 studies. And they were looking at these relationship for those receiving stimulants versus those receiving placebo. And they would do subgroup analysis in addition to see if there were differences in tic prevalence for specific types of psychostimulants. So in other words, they’re not only going to look at yes or no on tics on whether they develop or whether they worsen, but then they would also look at the different classes of psychostimulants — so methylphenidate or Ritalin-type group and the amphetamine-based group and see if that made a difference with regard to tics.
OK, so what did they find? Well, once they had combined all of these studies together, there were a total of 2,385 participants in these 22 studies. And, as it turns out, no significant increase was found in the development of new tics or the worsening of existing tics for those receiving psychostimulant medication when compared to those taking placebo. 5.7% of those in the psychostimulant group had new onset of tics during the course of one of the studies or worsening of the tics, 5.7%. But compare that with 6.5% in the placebo group. So actually more in the placebo group developed tics than in the stimulant use group.
However, that difference 5.7% versus 6.5% was not statistically significant. So there was no statistically significant difference when you look at the placebo group versus the stimulant group with regard to motor tics. Also, there was no significant difference when different types of psychostimulants were compared with one another. So the methylphenidate groups versus amphetamine derivatives, there was no difference in the onset of new tics or worsening of existing tics.
And, if we also look at immediate versus extended release of these medications, or if we look of the age of the participant or the dosing amounts, or the frequency of dosing, or the duration of therapy, none of these variables affected the outcome.
So the authors conclude that they were unable to find evidence of an association between psychostimulant use and the new onset of motor tics or the worsening of existing motor tics among children with ADHD. And the type of psychostimulant, the dose, the duration of treatment, the age of the child, none of these things had an effect on the outcome. In other words, none of these things mattered. There was still no association identified.
So there you have it. At least, according to this pretty strong and well designed meta-analysis of existing studies, psychostimulant medications are not responsible for the development of motor tics or the worsening of existing motor tics in kids with ADHD.
So as a parent, that makes me feel better. If I have a child with ADHD whose symptoms are well controlled on psychostimulants but who are exhibiting motor tics, I’ll mostly likely fine sticking with the type and dose of psychostimulant that is working and taking a different approach at managing the motor tics, which is often to ignore them as long as they are not significantly interfering with my child’s daily quality of life. Not my quality of life as the parent because I really want to see them gone and these tics are causing anxiety in me, but what is my child’s quality of life like in the face of these tics.
And of course, all of these should be decision that you, your child and your child’s healthcare provider with input from the educational system. We all put our heads together and come up with the answer that’s right for your particular child’s particular unique situation. But I do think this study add some great information as your child’s team comes up with the answer.
If you like to read more on this study again, I’ll include the PubMed link which will take you to the abstract and provide you with some options if you want to see the entire article there at PubMed. And I’ll include that link in the Show Notes for this episode, 339, over at PediaCast.org.
Dr. Mike Patrick: All right, we are back with just enough time to thank all of you for taking time out of your day and making PediaCast a part of it. Really do appreciate that.
Also, thanks to the folks from the Palliative Care Program here at Nationwide Children’s Hospital for educating us on what they do.
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