Rank #1: Pediatric Asthma
Pediatric asthma is a big problem in this country. Did you know that each year, 10 million school days are missed due to asthma? And, over half a million kids visit an emergency department each year due to an asthma-related concern. Asthma is a chronic condition that often times requires medication. It also requires a lot of education for children and their families. The asthma team here at Nationwide Children’s Hospital is taking asthma management even further to offer the best possible care for our children. Our doctors, nurses and respiratory therapists have worked together to develop a home management plan of care, or action plan, that is specific to each child and covers the proper use of prescribed medications, list of triggers, who the child’s primary care provider is and that provider’s contact information. The action plan also includes details on how soon a family needs to follow up with their primary care provider if their child has been admitted and then discharged from the hospital. Listen in as Beth Allen, MD, Stephen Hersey, MD and Gloria Ayres, respiratory care program coordinator, discuss the ways our asthma team here at Nationwide Children’s is ensuring our patients get the best possible care.
Dr. Shahid Sheikh: We did a very nicely written guidelines for asthma management. So it’s kind of similar things which almost every pulmonologist or allergist do. And then the treatment depends on the guidelines.
Dr. Rick McClead: That was Dr. Shahid Sheikh, MD, pulmonologist at Nationwide Children’s Hospital, during the December 2009 Children’s on Quality Podcast on Pediatric Asthma. What about those asthma guidelines? Every pulmonologist and allergist knows about the pediatric asthma guidelines yet how well are they following the guidelines? How well are we doing following the guidelines at Nationwide Children’s Hospital?
Improving the Quality of Care for Pediatric Asthma at Nationwide Children’s Hospital, next on Children’s on Quality.
Dr. Rick McClead: Welcome to Children’s on Quality. This is your host, Dr Rick McClead, Medical Director for quality at Nationwide Children’s Hospital. With me to discuss the quality improvement activities around pediatric asthma care are Dr. Beth Allen, pediatric pulmonologist at Nationwide Children’s Hospital, Dr. Steven Hersey, primary care pediatrician at Nationwide Children’s Hospital and Gloria Ayres, respiratory care program coordinator at Nationwide Children’s Hospital.
Welcome to Children’s on Quality.
Dr. Beth Allen: Nice to be here. Thanks, Rick.
Dr. Steven Hersey: Thank you.
Gloria Ayres: Yes. Thanks for having us.
Dr. Rick McClead: Dr. Allen, before we dive into the quality care issues for pediatric asthma, I would like you to briefly describe for our listeners what pediatric asthma is and why this is such an important problem at Nationwide Children’s Hospital and across the country.
Dr. Beth Allen: Well, Rick, you know that asthma is a huge problem for kids. It’s a very common illness, it’s a chronic illness that does not go away quickly that continues to haunt kids often for years and we’ve learned that it involves many aspects. It’s inflammatory, it involves the bronchospasm of the airways, but you know is under control requires medications both for acute symptoms, but also for many kids chronic control.
It’s a huge problem nationally. Over 10 million school days are missed per year for pediatric asthma and over half a million kids get hospitalized or come to the emergency room across the nation. We see that here at Children’s too. We’ve had on average about 2,500 kids per year come to our emergency room for acute asthma and we admit over 700 kids a year for this problem and a good chunk of those have to go to the intensive care unit because they’re so sick.
Dr. Rick McClead: Well, in our intro, Dr. Sheikh spoke about the pediatric asthma guidelines that all pulmonologist, allergist and pediatrician need to be aware of and utilize. Can you describe what the elements of these pediatric asthma guidelines are?
Dr. Beth Allen: Well you know there are several kinds of guidelines out there. The NHLBI (National Heart, Lung and Blood Institute) has put out over 400-page document that makes suggestions about how to manage asthma and they covered key issues which include identifying the severity of asthma, education for the family, environmental controls and incorrect medications.
What’s been more in the spotlight lately has been some very narrow and specific guidelines for hospitalized children with asthma and those are called the CAC requirements and they focus on whether kids who get admitted are treated with bronchodialators like albuterol, are treated with oral or IV steroids and then also important whether they get a home management plan of care, which we also call our asthma action plan, by the time they leave which should give them instructions on how to keep their asthma in control in the future.
Dr. Rick McClead: Now that CAC stands for Children’s Asthma Care?
Dr. Beth Allen: That’s right.
Dr. Rick McClead: Well, Gloria, nationally, healthcare providers do pretty well with the first two guidelines that being the administration of relievers and corticosteroids in the hospital, In fact, generally, it’s over 100% of the time the doctors and the practitioners provide these medications appropriately. However, the provision of the asthma home management plan of care is only about 75%. First, tell the listeners about what the home management plan of care is and then share your thoughts as to why healthcare providers might not be doing so well with this quality metric.
Gloria Ayres: Well, the home management plan of care is essentially the asthma action plan or an asthma treatment plan and it includes several areas not only the use of relievers and use of corticosteroids as was mentioned previously, but it also lists what the triggers are for that particular patient, who their primary care provider is and the contact number for that PCP, in addition to how soon they need to follow-up after discharge.
And what we’re finding is a lot of those areas are being completed at a 100% but the one area that’s getting missed is the primary care provider and the following-up after discharge. And we are working very diligently with our epic team and our quality improvement folks making sure that all areas of that asthma action plan are completed prior to discharge.
Dr. Rick McClead: Now, the asthma action plan is sort of like a road map of what the family or what the child is to do depending on what their symptoms are so it’s graded in a way different interventions depending on what kind of symptoms and what kind of response the child’s had.
Gloria Ayres: Yes. Correct. I like to refer to it as the traffic signal because there are three zones – there are green, yellow and red zones – where green means go ahead, keep doing what you’re doing, take your preventative medications as prescribed if that is what is prescribed by your physician; when they’ve reached the yellow zone, it’s a caution, they need to take appropriate medications to prevent their asthma symptoms from getting worse; and of course red like a traffic signal means stop, take action, your symptoms could be life threatening, you need to follow-up by calling 911 or go to the nearest emergency room. And always follow what’s written on your asthma action plan as to what medications you need to take during each of those three areas.
Dr. Rick McClead: Well Dr. Hersey, you’re a pediatrician who manages asthma patients when they are not hospitalized. How do you think that the home management or plan of care is being used by your asthma patients?
Dr. Steven Hersey: With regard to the asthma action plan, all of our initiatives to date have, one of the primary goals has been standardization of the asthma action plans so that the plan that is given to the patient upon their discharge from hospital stay is the same plan that we utilize in the primary care network.
Dr. Rick McClead: So, there should be a continuum from the inpatient smoothly to the outpatient and should be all one plan of care.
Dr. Steven Hersey: Exactly. And this provides consistency both for the clinicians, residents and attendants in-house who are managing the child’s asthma that they are familiar with that plan so that when they’re seeing, when a resident is seeing that patient in the outpatient realm as well, it is the same standard. On the patient’s side, it’s the standardization that they see when they’re discharged from a hospital they have the familiarity with it so that when we see them upon follow-up they have that same information and the same setup.
Dr. Rick McClead: Do you review the asthma action plan with the family or each resident?
Dr. Steven Hersey: We do. We attempt to review that asthma action plan with each asthma visit. We have some encouraging data to show that. Over the past year, through our quality improvement initiatives we’re started at about a rate of 40% of our patients receiving the asthma action plan at an asthma visit. Pleased to say that over the past year, we have increased that rate to nearly 80% and have been sustaining that for almost three months now.
Dr. Rick McClead: Good. Well, that’s a nice segue way into talking a little bit about compliance with the various guidelines. Before we can know for sure if these quality metrics are effective at managing pediatric asthma, we need to know for sure that we are following guidelines optimally. With the relievers and corticosteroids they are given to hospitalized patients, everyone seems to do pretty well.
However, compliance with that provision of the home management plan at the time of discharge is not very good at the national level and historically we’ve not done very well, as you pointed out, only 40%. What have been the barriers to the compliance with this measure and what have we been doing to improve our performance?
Dr. Beth Allen: Well, part of the challenge with this measure has really been to get everyone on the same page as far as thinking about the admitted child is not just someone who needs help with their acute asthma, but also as someone who clearly needs help in changing what they’re doing on a chronic basis so they don’t have to come back. And I think one of the first challenges was really for folk’s mindset to be more of in a preventive mode once they kind of gotten the worse of the asthma straightened up.
Aside from that piece, the next piece has have to do really with the mechanics of getting that piece of paper into the family’s hands. So where do you keep it, we made a big intervention when we went to a computerized form which made it a lot easier for practitioners to log on and fill out the form and hopefully get it printed. And then there are, on top of that, there were a number of specifics about what was required beyond the form that we had to be careful that all of our Is were dotted and Ts were crossed with every last little piece of information.
And I think Gloria was alluding to that earlier that sometimes the families get the bulk of the information but that one or two things they didn’t have a phone number for their doc or the small details missing which makes our overall percentage a little lower than we would like but may not impact the quality of the information hugely.
Dr. Rick McClead: What do you say to a family as far as you hand them this document, what do you tell them to do with it?
Dr. Beth Allen: Well, I think that’s an important thing that is difficult to measure with the measurements we’re using now, meaning that the CAC tree basically was setup to tell us whether someone got a complete document. It doesn’t measure how effective the teaching is that goes in to providing that document to the family. Both, in terms of whether a live information was given and also whether the family actually understood the information and can look at the piece of paper and make sense of it and know what to do the next time their child’s sick. And I believe that in the future we’ll be looking at items that tell us more about those factors.
Dr. Rick McClead: Well, Gloria, you’re a key member of the asthma quality improvement team, tell the listeners about your role on the team and the impact that the team has had on the asthma quality measures.
Gloria Ayres: OK. Well, my role is to foster effective communication between all healthcare professionals here at Nationwide Children’s Hospital. RTs, respiratory therapists I should say, nurses, physicians, residents and other staff members making sure we’re all on the right page in regards to what this home management plan of care or asthma action plan is. In addition to involving the nurses and respiratory therapists in education for our asthmatic patients either at the bedside or ensuring that they get to a group asthma class before their discharge, we go above and beyond in making sure all asthma patients receive an education packet and some teaching before they leave this hospital.
Dr. Rick McClead: Well, Dr. Hersey, you’ve had a QI team focused on the management of the asthma patient in the outpatient arena, tell us about your work and your accomplishments today. You mentioned that you’ve improved the compliance with the distribution of the asthma action plan in the outpatient arena, what has been involved in that?
Dr. Steven Hersey: This started back probably a year and a half ago and as we got our asthma core group, which is our hospital group together to work on these measures, it started out with our first goal of 2011 to get an asthma action plan out to the family at every asthma visit for a goal rate of 75% and as I have mentioned we started with the baseline of 40%. Through the year of 2011 we are able to hit that measure of 75% and a I have mentioned gone up to 80% over this first quarter of 2012. That is our first goal for 2012 is to achieve and sustain a rate of at least 80% distribution asthma action plans during an asthma encounter.
Our second goal is to use a standardized note during an asthma encounter for all 70-80 primary care providers during an asthma encounter visit with our asthma patients. This is kind of new for our network and the use of standardized note for a specific disease. We are shooting for a goal rate of 50% by the end of 2012, again with the use of a standardized note. It uses standardized questions base on the EPR 3 National Asthma Guidelines to help determine asthma severity and asthma control.
This is actually an exciting time for us as we’re probably going to be going live with this note this week actually. And we have some hurdles to overcome with regard to education of the providers and staff on use of the note. But when the note is used we will have the ability to select certain measurements from those notes so that we can track compliance from a practitioner’s standpoint with regard to their measurement of level of control and severity and we’ll be able to follow our patients and their care more closely through this note within our medical record.
Dr. Rick McClead: What is the advantage of the standardized note over maybe how we were doing at how you were doing in the past?
Dr. Steven Hersey: That’s a great point, Rick. Prior to this, in general, the practitioners say I treat this disease well, I manage my asthma patients well, but when you actually go back and look at the data, if you go through specific chart reviews, you will find that often times documentation is not up to par and it is this documentation through use of electronic medical record that we’ll be able to track and see how people are doing at that standardization.
Dr. Rick McClead: In some ways, this standardized note is like a checklist. There are listeners maybe aware from national news talking about the world checklist improving the quality of healthcare, but this is really what the standardized note is, is that checklist to remind the doctor of all the elements they need to do correctly if they’re going to optimally manage the asthma for this particular patient.
Dr. Steven Hersey: That’s correct. Just an example, we ask symptomatology regarding daytime symptoms, nighttime symptoms, frequency of rescue inhaler use. Within our impression and plan of the note we hit on specific key targets, one of which is the asthma action plan, was it updated, was it reviewed and provided to the patient and family. The discussion of a flu shot during flu season and even outside of flu season.
It’s critical that the primary care provider remind a patient of the importance of getting an annual flu shot at any time of the year. Review of medication compliance specifically with controllers, therapist and use of spacer with all inhalers as addressed as well on this note. We found, through our history, that that is a critical piece to patient compliance with use of as medications is the use of a spacer.
Dr. Rick McClead: Well, last October Rustin Morse and some of our colleagues published a paper in the Journal of the American Medical Association that reported an evaluation of the impact of the children’s asthma care guidelines on the post-discharge asthma-related emergency department utilization and hospital re-admission rates. These are kind of the key parameters that we’re trying to decrease. When we send them home we don’t want them coming back with symptoms to the emergency room and then have to be re-admitted. Correct?
Dr. Steven Hersey: Correct.
Dr. Beth Allen: Yes.
Gloria Ayres: Right.
Dr. Rick McClead: Well this paper confirms the hike compliance with use of relievers and corticosteroids although nationally the compliance with the home management plan of care was improved, it was up to 75% you’d mentioned, Steve, that we were up to 80% here. But what’s interesting to me about this study is that while the best performing hospitals had compliance with the asthma action plan in the 85% range and the poorest performers were in the 55% range. There was no difference in the two groups with regard to the post-discharge, emergency room use or re-admission rates for the asthma patient. What does it say about this measure?
Dr. Beth Allen: Rick, as I alluded to before, I think one of the challenges with this measure is that it basically measures whether a series of pieces of information all got put on one piece of paper and handed to the patient before they went home. Whether the patient actually got effective teaching about what that piece of paper meant was not really possible to measure and it may well be that even if patient didn’t get the complete paper they got equal amounts of education and teaching at the various institutions or their understanding was similar to various institutions.
So I think that, we like to think that filling out the action plan actually helps drive us and think harder about the patient and make sure that they’re on proper controllers that it does imply a lot of thought and input. And it may be that those things are happening with or without the piece of paper at the various institutions and that we need to figure out a better way to measure when those things are occurring.
Dr. Rick McClead: Gloria, you’re with a family doing education, what’s your intuition tell you about what we need to be doing to improve the subsequent outcomes, the emergency room utilization as well as our re-admission rate for asthma episodes?
Gloria Ayres: Just stressing the importance of this plan and taking the time to go over each and every green, yellow and red zone and treating this as your management plan and also reminding the family members to bring this to their follow-up visits each and every time because it’s going to need to be updated and it will change overtime. And also we remind our families that we want to give you extra copies of this because we know that your child is not only in your home but they’re ay school, there may be the opportunity for them to spend the night at a friend’s house, with grandma and grandpa or mom and dad are separated, so there are different environments that they’re in and we want to make sure that plan goes with them everywhere so everyone is up-to-date on what’s happening.
It also goes beyond the walls of this hospital in educating others – physicians’ offices, schools, school nurses, community organizations that take care of children – to know what this asthma action plan is all about so they’re comfortable with taking care of children with asthma and they know what to do if they’re having symptoms or a flare-up.
Dr. Rick McClead: Steve, you’re in the outpatient, do you have thoughts on what needs to happen that is maybe not happening now that would improve the overall outcomes for kids with asthma?
Dr. Steven Hersey: Repeatedly, I think of a primary issue of concern is medication compliance and a consistency of use of specifically controller medications. In the primary care world we spend a lot of our time reviewing charts, calling pharmacists to see if the patients and parents reported history is up to speed.
The impression is that parents want to give us the idea that their patient is controlled and so often times they give us misinformation or not accurate information, specifically regarding controller therapies and use of those on a regular basis. I’ve foreseen in the near future, I think one of our big efforts will be monitoring patient compliance with regard to those medications.
Dr. Rick McClead: So, what about child personalities and things and allowing the child to get in trouble before anybody even knows what’s going on?
Dr. Beth Allen: That’s one of the challenges of asthma care is that while we kind of teach to a standard scorecard about what symptoms are each individual patient’s symptoms are a little different. And particularly for teenagers who’ve had the asthma most of their lives, they may not sense when they’re feeling short of breath because they’re just kind of use to it and hey, don’t say anything until they’re actually in a fair amount of trouble.
We pick those folks up through doing pulmonary function testing and that’s one of the reasons spirometry is recommended once a year as to sort of hopefully pick out those kids. While most kids will have normal function, there are the occasional kids who don’t. I think this sort of speaks to one of the challenges in how we teach asthma is how well can families embrace what we’re teaching them and also how well do they understand how to actually translate for their own child.
Yar Maguire, who’s run much of our inpatient quality improvement is currently involved in a project that looks at that embracing question. Its surveys aimed at seeing not only do families understand asthma but do they believe it, I mean do they actually believe that they really should take medicine everyday, those sorts of issues.
Dr. Rick McClead: They should take medicine everyday whether they’re having symptoms or not?
Dr. Beth Allen: Exactly. In those kids who have frequent symptoms, it’s a subset and there are some kids with asthma that it’s OK, just wait, in treatment they have symptoms. But if they’re having the illnesses that are quite severe even in frequent basis over the course of the year or if they’re just having low grade symptoms in an out, day to day, even as often as couple of times a week they have some cough or a little bit wheeze that’s enough to say they should be on a daily controller medicine.
And for a lot of folks the idea of giving a medication to their seemingly well child does not mean true. So we have to investigate whether those kinds of concerns might be part of the problem. We’ve also done a study the asthma parent and patient education survey that’s going to be presented at the ATS in May where we look at patients we’ve been consistently giving action plans. We kind of turned the tables and instead asked families to tell us what they would do under certain little and yet circumstances, gave them a little story about a child getting into asthma trouble.
And what we discovered is that often families while they’d being given this information translating it into a real life scenario they weren’t sure and they might rush to call the doctor, go to the emergency room in a situation which they could probably treated home. And sometimes they didn’t recognize when they should go to the emergency room or call a doctor which may have delayed their child getting care so that they finally presented him even sicker. So just because we give out these instructions doesn’t necessarily mean that people know how to apply them and that’s another area that I think we’ll have to investigate further in the future.
Dr. Rick McClead: Well, that is all the time we have for this edition of Children’s on Quality. Children’s on Quality is produced by Kelly Nightingale. Our theme music was composed by Ryan McClead. Next time on Children’s on Quality, we should discuss the March of Dimes prematurity scorecard. Until then, this is your host, Dr. Rick McClead wishing you the best of good health.
Jul 03 2012
Rank #2: Pastoral Care at Nationwide Children’s Hospital
For children and their families, a stay in the hospital can be a very stressful time. Pain, worry and fear of the unknown are often made harder by being away from family and friends. The Pastoral Care Program at Nationwide Children’s Hospital aims to support families and staff going through difficult times and also to rejoice in happy occasions or successes. One unique feature to our program is its multicultural nature. We consider all cultural traditions, personal preferences and values, family situations, social circumstances, lifestyles and religions when advising patients, families and staff and creating services and programs. Our pastoral care staff is trained to address the most sensitive of issues that may take place in a children’s hospital. We recognize the importance of supporting our staff so that we, in turn, can provide the best possible care to our patients and their families. Listen in as the Rev. Susan Kyser, Director of Pastoral Care, joins me in discussing our program.
May 05 2011
This Month in Muscular Dystrophy
PediaCast CME: HCSM Curriculum
Portable Practical Pediatrics
PediaCast CME: Pediatric Podcasts for Providers
PediaCast: Pediatric Podcasts for Parents
Pediatric Research Podcast
Primary Care Perspectives: Podcast for Pediatricians
PHM from Pittsburgh
JAMA Pediatrics Editors' Summary
Pediatric Emergency Playbook
Peds in a Pod: A Pediatric Board Review
PedsCases: Pediatric Education Online
JAMA Editors' Summary
Rank #3: Effects of mother’s addiction on infants: Neonatal Abstinence Syndrome
When a pregnant woman uses addictive drugs (illicit or certain prescription drugs), she puts her baby at risk for a number of problems. Neonatal Abstinence Syndrome (NAS) is a term for a group of problems a baby experiences after birth when withdrawing from exposure to narcotics or other addictive substances such as tobacco. These can be long-term, mental or physical in nature and are always harmful to the development of a child. NAS is on the rise all over the world, including central Ohio. Listen in as we discuss NAS and how Nationwide Children’s Hospital’s neonatal services staff have worked to combat its rise in central Ohio. Joining me are Erin Keels, manager of the neonatal nurse practitioners at Nationwide Children’s Hospital, Jackie Schnieder, a neonatal pharmacist at Nationwide Children’s Hospital and Barry Halpern, MD, a neonatologist and Medical Director for the Nationwide Children’s Hospital Special Care Nursery at Grant Medical Center in Columbus, OH.
Apr 01 2011
Rank #4: Reducing the Frequency of Pediatric Pressure Ulcers
A 2002 article regarding the incidence and prevalence of pressure ulcers in children reported from survey data that the incidence of pressure ulcers in children was less than 0.3 percent. In 2011, we know this not to be the case. In fact, hospital-acquired pressure ulcers are on the rise. Perhaps healthcare providers thought pressure ulcers were infrequent simply because we weren’t looking for them. We have made great strides here at Nationwide Children’s Hospital in reducing the frequency of pediatric pressure ulcers. What’s more, we are continuing our efforts to drive that frequency all the way down to zero. Listen in as Nationwide Children’s Hospital’s staff weighs in on this important issue: Michelle Miller, MD, Chief of the Section of Physical Medicine and Rehabilitation, Michelle McKissick, Vice President of Surgical and Critical Care nursing and Leah Keller, Quality Improvement Coordinator and your host, Rick McClead, MD, Medical Director for Quality Improvement Services.
Mar 01 2011
Most Popular Podcasts
Rank #5: Hospital-Acquired Infections
There used to be a time when a certain amount of hospital-acquired infections were expected and accepted in the healthcare industry. Now, Nationwide Children’s Hospital is taking proactive measures to change that attitude and to prevent and reduce the number of hospital-acquired infections on its campus. And, as these infections decline, Nationwide Children’s is committed to maintaining these improvements through additional initiatives. Dennis Cunningham, MD, Medical Director of Epidemiology and Jodi Vinsel, Program Director of Epidemiology, specifically discuss how Nationwide Children’s Hospital is working to reduce five key infections: catheter-associated blood stream infections, catheter-associated urinary tract infections, ventilator-associated pneumonia, surgical site infections and various respiratory infections.
Feb 03 2011
Rank #6: Electronic Medical Records (EMR) – Part 1
In a time where speed and accessibility are ever-growing priorities for businesses, it’s hard to believe that the healthcare industry has only recently made use of the electronic medical record (EMR). Healthcare has always been about information management, but only recently have hospitals recognized the value of the EMR. Listen in as David Rich, MD, Chief Medical Information Officer at Nationwide Children’s Hospital, Jeff Hoffman, MD and Jim Menke, MD discuss why it’s taken so long for the industry to adopt this new technology and how Nationwide Children’s Hospital is among the top ten percent of hospitals throughout the country leading this transition. Be sure to listen in on part two of this podcast, as we continue our discussion about the advantages and disadvantages of the EMR.
Dec 27 2010
Rank #7: Through S.C.O.P.E. Collaborative, Nationwide Children’s is Reducing Infection Rates and Hospitalization Among Dialysis Patients
Listen in as Dr. Hiren Patel discusses end stage renal disease, more commonly referred to as severe kidney failure. When a person’s kidneys function properly, they remove waste from the body. In kidney failure, the kidneys are unable to remove waste from the body, potentially resulting in many complications such as anemia, bone disease, high blood pressure, electrolyte imbalance, poor growth in child and many others.
In children, kidney failure is generally caused by developmental defects that occurred before birth or other inherited disorders. There are two options for kidney failure: kidney transplant or dialysis. Dialysis significantly impacts a child’s quality of life and also increases his or her risk of infection.
To combat this risk of infection, Nationwide Children’s Hospital is part of a collaborative called S.C.O.P.E. S.C.O.P.E. stands for Standardized Care to improve Outcomes in Pediatric ESRD. Its goal is to reduce infection rates in dialysis patients by preventing them in the first place. The collaborative does this by evaluating and implementing standardized best practices for infection prevention. Since Nationwide Children’s has been involved with this collaborative, we’ve made great strides in preventing infection rates and reducing hospitalizations as a result.
If we can prevent infections and hospitalizations in these patients, we can keep them at home, keep them in school, keep them healthy and maintain their quality of life.
Learn more about our Nephrology services here: http://www.nationwidechildrens.org/nephrology-team
Interested in how your kidneys work? Watch some videos that demonstrate proper kidney function and failing kidney function here: http://www.nationwidechildrens.org/kidney-function-videos
Nov 18 2013
Rank #8: Treat Me With Respect
Our patients have told us that they want three things from us, and in this order: Don’t hurt me, heal me and be nice to me. Every one of these is important, and in this podcast we are discussing the last of these: be nice to me.
Here at Nationwide Children’s, family-centered care is important. Every one of our staff members strives to include our patients and their families in the care plan as much as we can. This directly correlates to that what our patients have told us they want: be nice to me. We took this, made it part of our strategic plan, and now refer to this component as “Treat Me With Respect.”
The ultimate goal for our “Treat Me With Respect” attitude: when parents give us feedback, we listen. Then, we take that feedback, let it guide how we interact with families, and thus empower them. We want our patients and families to leave us with a sense of having been an active participant in their or their child’s care.
Listen in as Linda Stoverock, Chief Nursing Officer, and Kerry Rosen, Director of Outpatient Cardiology Services, talk more about why Treat Me With Respect is so important, and the measures that our entire staff take every day to ensure we are doing just this with all of our patients and families.
Watch this video to learn more about Family-Centered Rounds.
[Respect – Aretha Franklin]
Dr. Rick McLead: Welcome to Children's on Quality. That of course was the Queen of Soul herself, Aretha Franklin from a 1990 recording. R-E-S-P-E-C-T is the topic for this edition of Children's on Quality.
With me to discuss our Treat Me With Respect program are the two leaders of the initiative; Linda Stoverock Stoverock RN, Chief Nursing Officer at Nationwide Children's Hospital and Kerry Rosen MD, Director – Outpatient Cardiology Service.
Welcome to Children's on Quality.
Linda Stoverock: Thank you.
Dr. Rick McLead: Linda Stoverock, let me begin with you. Tell our listeners about the Treat Me With Respect program and what prompted its initiation.
Linda Stoverock: When we started our work with safety, we recognized the important role that the parents have in it too. And we say that there are three things that parents want, it's; to not hurt their child – so we call that Don't Hurt Me, Heal Me – which is to make their child better, and Be Nice To Me – our Treat Me With Respect. And they want them in that order from what the statistics and research out there say; all three are important, but that's the order they want them in.
And so we're really trying to amp up our service now with our Treat Me With Respect.
Dr. Rick McLead: What would you see as the ultimate outcome, the goal for this particular project?
Linda Stoverock: The ultimate goal is that when parents give us feedback or they're talking to other people – they always feel they leave this organization with their being participants in their child's health care.
Dr. Rick McLead: Dr. Kerry Rosen, I thought we are a pediatric institution. A big part of what I understand is Treat Me With Respect is this whole concept of family centered care. What's family centered care all about?
Dr. Kerry Rosen: That's a great question. Family centered care actually has four main principles and include:
Treating patients and families with respect and dignity.
Having the families be active participants in their care.
Seeking out two – way or by directional information sharing – meaning we're not just telling the families what we think, but we need their input to take the best care possible of their children.
And also, collaboration – collaboration at all levels of the patient's care. Where we want to collaborate with the family, not just provide medical care.
Dr. Rick McLead: Well this seems like a big challenge. Linda Stoverock, what do you see as the barriers to creating a family centered care program?
Linda Stoverock: Most of the time it's the rush that people get in to as we are thinking about the next several steps we have to deal in our day's work and we forget to stop and see did the family really understand and did we hear what they were saying as to their perception of the child's problem or the child themselves in case of our adolescents and young adults.
And so, we have to slow ourselves down and really talk to the family and the patient about what their individual goal is or the plan that they want to achieve and then how do we meet that, how do we get transparent and really listen to them.
Dr. Rick McLead: Kerry, what are some of the changes that you planned with the Treat Me With Respect program?
Dr. Kerry Rosen: So, some of these changes are already underway over the last couple of years or even recently. You know one of the big shifts compared to decades ago, when we used to do rounds, we would have the mindset that we would be talking about the family or about the patient and maybe rounding in the hallway or separate from them. We want to shift the mentality to rounding and caring about the patient to actually talking with them. So having the family in the middle of rounds or having the family and patient participate in rounds and not have the medical team talk about the patient but actually talk with the patient. So that's a big picture shift in towards the Treat Me With Respect.
Couple of other things that we're doing to engage the family is actually inviting the families to be in active participant with rounds. We actually have hang tags that we put on the patient's doors that we're trialling and piloting right now. Then actually gives the family the choice – we're going to be rounding, do you want to participate? Do you want us to do this in the hall?
And also just recently, we have a new introductory video that the families will see during their sort of check-in process. So part of their checking-in to their room after they're being admitted is a video that we're using that will actually introduce family centered rounds, so the families know that this is an important part of their care.
Dr. Rick McLead: What's been the initial response to this?
Dr. Kerry Rosen: From…
Dr. Rick McLead: From the parents.
Dr. Kerry Rosen: From the parents? I think across the board the families embrace and really not only like but in some respects expect to be a more active participant.
Dr. Rick McLead: Why haven't you been doing this all along?
Dr. Kerry Rosen: It's a great question you know. We're kind of brought up as medical providers, doctors, and nurses – we learn to do things a certain way and I'll point to you, you said you've been doing this a while and how you were taught to interact with patients and families decades ago is probably different than how our current medical students and student nurses are learning to interact with families.
Dr. Rick McLead: It was routine to go into a conference room. It's sit down for an hour and a half with our attending physician and discuss all the patients and historically we almost never went to the bedside to actually interact with families etcetera. That was sort of what the house is after residency interns would do but, the actual teaching round was done with the attending in the conference room.
So, this is a major change from how it has been done historically. But you know sometimes we need to have conversations about patients that maybe we need to discuss prognosis, we're not quite ready to share that with the family. How would you do that, if there's something of a particular sensitive nature that needs to be discussed as a team and yet not upset the family as you have the conversation about what this diagnosis means etcetera?
Dr. Kerry Rosen: A principal concept when just dealing with family centered care is you understand the degree to which the family wants to participate. So on a sensitive topic like that, I think it's important for the team to understand what degree the family wants to know, how much they want to participate in rounds, how much for example the teenage patient may want to know or not know about the condition. And it's kind of a blanket answer, but I think we really have to be aware and sensitive of how much the patient wants to be engaged.
Now digging in deeper to your question, if somebody has a diagnosis of cancer – who better than the patient or family to know that you have cancer? I mean there's a degree or sort of honesty and transparency that has to be put on the table. I think in some parts we may be doing a disservice that we hold that information from them. It's actually honest, it's transparent, we're involving them in the process and I think that is a better way to go about their care.
Dr. Rick McLead: Linda Stoverock, there are sometimes some cultural issues that could impact how we share with them? Any thoughts about?
Linda Stoverock: There are some cultural issues, but they shouldn't impact the care. It's what we need to understand about the cultural issues and how do we learn and embrace those as part of the care. And one of the things that we really work here with our diversity initiatives and inclusion is providing information to all of our health care providers about what those cultural issues are and so we'd put resources out there, but you can't make a blanket statement that everyone from a certain culture is going to behave or want things a certain way. And so, you really again, have to have a conversation with the patient and family and see what their beliefs are and explore those and then come to agreement on a plan.
Dr. Rick McLead: What about some of the educational needs for the family as we bring them in to this role. What kinds of things do we need to educate them about?
Linda Stoverock: One of things that we're really trying to work on is making sure that when we give education information to patients and families, that we'd stop and ask them to tell us what it meant to them in their words. In other words, teaching it back to us – so that we can identify where there's maybe still a gap and we're on different pages with the language that we're using and that we break it down into components that they can take home then and enact to make sure that their child stays well.
Dr. Rick McLead: It was pretty common for new house officers to engage in conversation in families using clearly medical language and especially abbreviations. So have we done anything specifically with regard to how we educate our trainees into the proper way to communicate with families?
Dr. Kerry Rosen: I think that's a great point and that's a challenge that we as the physician-supervisors need to role model for the students and residents on ways that you can discuss a medical issue but actually discuss it in language that the family will understand. So, I think that's a soft scale, if you want to call it that, that's certainly is a challenge in this whole process.
Dr. Rick McLead: Linda Stoverock?
Linda Stoverock: I just want to add to that, that again it goes back to that listening and asking for clarification because something as simple human language that's used everyday is rounds, yet we had a parent talked to us and tell us that they didn't know what rounds meant. To us it's everyday communication, it's not medical jargon. And so again, it's that point of really stopping and asking for clarification and really what does the family understand that we just said.
Dr. Rick McLead: So when the families send us nice complimentary notes about how well we done, we kind of have a feeling that we're on the right track. But, I'm a QI guy so, I want to know how you going to measure this. So, what are the tools you're going to use to measure your performance with regard to the whole Treat Me With Respect program?
Linda Stoverock: So, there're several measurements, but one of them we really do count are not just the comments but when we send out surveys from our families, we look at that information and we try to improve on our scores that they give us – that's the number one way.
But then when we put in a new program such as rounding – we're out there measuring to see did we do it, what's the bundle of care the things that we change? So we're looking to say, did the team round and invite the family to participate? Was the nurse at the bedside also to help participate in those rounds?
If we put out a new card for the families to tell us, do they want the round in the room or outside the room? We'll be checking to see how often that happen. So, all of those have a metric that we try to look at and make sure we're going the right direction.
Dr. Rick McLead: One of the complaints that I do hear about that we do and always do a good job of communicating what the plan is during a hospitalization, and one of the interventions I'm aware of from the Cardiac Intensive Care Unit is the whole concept of a journal board. Kerry, could you explain that journey board concept?
Dr. Kerry Rosen: Sure, a journey board is a part of a road map for the patient's care from the time they get admitted throughout the hospitalization to discharge. So, it actually literally looks like a road map or even like the Game of Life sort of game board where there are spots along the way that the patient has to sort of journey through to get through their admission. So for example in a patient who's had heart surgery, there're steps through the ICU and transferring to the floor, but families need to do a lot of things to get to the point of being discharged like passing their car seat test and parents learning CPR and learning their medications, learning how to mix up the formula correctly.
So all of those are sort of check boxes on the journey board and by the time a patient is ready to be discharged, the vision is, have all of the boxed checked on your journey board? The families reviewed it and reinforced by the nursing staff, taught and the communication will be much better throughout their hospital journey.
Dr. Rick McLead: What's the plan for spreading that from the ICU to the rest of the hospital?
Dr. Kerry Rosen: So that's already happened. This actually started in the Heart Center and the Cardiac ICU and then on our Cardiology Floor. But now several other floors, if not all of the floors are instituting or using a journey board that's actually specific to their patient population. You know what a heart surgery patient might need is certainly different than what a cancer patient might need. So there are disease-specific and floor-specific journey boards that are being used throughout the hospital.
Dr. Rick McLead: Well, we have nearly 25,000 admissions a year and over a million outpatient visits each year. So our staff are working pretty hard at taking care of all these patients, yet there are some simple things that they can do to be family centered. Linda Stoverock, what are some thoughts about things the staff can do that really don't take any more time?
Linda Stoverock: They are so simple, Rick. And one of the first things is just every time you go into the room to meet a family and stop and introduce them and tell them what role you have, we've got so many people here with different jobs going in and out of rooms, that is hard for a family to keep straight, "Who's the doctor?" "Who's the nurse?" "Who's the housekeeper?" "Who is the medical student?" And, "Who's the nursing student?"
And so each one of us is accountable for letting them know who we are and what we're there to do and what the goal is. And then the second thing is just stop and sit down when you're having that conversation rather than looking like you're leaving out the door with your hand on the doorknob ready to go on to do your next thing. Stop, eye contact, listen, and then before you leave, ask if there are any other concerns that you can address while you're there.
Dr. Rick McLead: Well Kerry, when I joined the staff at Children's Hospital more than 30 years ago, there were maybe 25 full time hospital-based specialist, now we have literally hundreds of medical specialists and more than 11,000 physicians are on our medical staff. We also have new providers like the Advance Practice Nursing staff; communication among all these providers is a bit of a problem. So any thoughts on how we can do a better job as team members to communicate what's going on with patients?
Dr. Kerry Rosen: Actually circling back to a family centered care concept that kind of permeates all the care we provide is part of the answer. Not just family centered care where we have the family involved, but we've also worked towards having the bedside nurse involved with the in-patient rounding procedure. Like Linda Stoverock just described, we're all busy, the nurses can be busy, they can be taking care of two or three patients. So we really make an effort that the family here is the plan on the discussion on rounds, we make an effort to get the bedside nurse freed up from what they're doing at that time, so they're part of the discussion. So that helps with not just one way, but two way, three way communication, so everybody hears the plan at the same time.
That as opposed to people just coming in and out and hearing different stories, it goes a long way. Another quick example is – over the last several years when nurses actually change shift from day shift to night shift, what we are doing now is actually the nurses are doing that at the bedside and with the family participating. So they're sharing their information about what's the plan for the next 12 hours – not in a conference room or the break room, but right there in the patient's room with the patient and the family. So these are all the things that we could do to communicate better, so the family and the team members all know what's going on and everybody's on the same page.
Dr. Rick McLead: Do you think the electronic record has helped communication better or in some ways made it worse?
Dr. Kerry Rosen: I could probably give you an answer in both directions. It probably has helped because it's easier to access information, so it's easy to quickly look up wherever you're at, what's going on. But on the other hand, you may just rely on dropping a quick note and not really talking to the patient and family and talking back to the other team members and really having a dialog and communication. So, I think in some respects it helps and some respects it may create other challenges.
Dr. Rick McLead: Well, that's all the time we have for this edition of Children's on Quality.
Children's on Quality is produced by Kelly Nightingale. Our theme music was composed by Ryan McLead.
Announcer: If there's a quality of care issue that you'd like to hear more about, let us know by contacting us on our podcast website or send us a message on Twitter. Our handle is @nationwidekids.
We also really appreciate your comments in our blog, so please feel free to leave some for us to read.
Dr. Rick McLead: Next time on Children's on Quality, we will be discussing the Nephrology Quality Projects.
Until then, this is your host Dr. Rick McLead McLead wishing you the best of good health.
Jul 16 2013
Rank #9: Inflammatory Bowel Disease Remission Rates Improving through ImproveCareNow Network
More than 1.4 million Americans suffer from irritable bowel disease (IBD). Of these, 25 percent are children. There are two main types of IBD that people typically think about: Crohn's Disease and Ulcerative Colitis.
The difference between the two is dependent upon where in the body the disease occurs. Crohn's Disease can affect essentially anywhere along the digestive tract, whereas Ulcerative Colitis generally affects the lining of the large intestine. Another determining factor is how deep the disease goes into the tissue. With Crohn's Disease , the disease goes all the way through the tissue. Ulcerative Colitis affects just the lining of the large intestine.
Doctors are still learning about what exactly causes and triggers irritable bowel disease, and what populations are more prone to having the condition. Right now, though, there is no known cure. Patients with IBD will likely require a lifetime of medical care.
IBD occurs because a person’s immune system has a consistent over-response to bacteria – good and bad – in the body. In a person without IBD, the immune system reacts to bad bacteria by attacking it. When the bad bacteria has been taken care of, the immune system relaxes. In a person with IBD, however, the immune system doesn’t know when to stop attacking. This leads to flare-ups and complications.
Listen in as Dr. Wallace Crandall, Director of the Center for Pediatric and Adolescent Inflammatory Bowel Disease at Nationwide, talks more about living with irritable bowel disease. Dr. Crandall also leads a team that helped to start the ImproveCareNow Network. ImproveCareNow Network is a collaborative made up of about 30 healthcare sites around the country that collect and share data about IBD trends and treatments. This shared knowledge is then used to provide the best treatment to IBD patients, nation-wide.
Since Nationwide Children’s started participating in the ImproveCareNow Network collaborative about four years ago, remission rates for our patients increased from 50 percent to 80 percent without any new treatments – that’s a statistic to be proud of!
Dr. Wallace Crandall: What's exciting about the work that we're doing is that it's working when we began this collaborative a few years ago. Our remission rate was about 50%. We've increased remission rate from 50% to about 80% just within the last four years without any new treatments being developed during that time, just by being more reliable on the care that we provide.
Dr. Rick McClead: That was Dr. Wallace Crandall Crandall, Pediatric Gastroenterologist at Nationwide Children's Hospital discussing some of the great results he and his colleagues are getting as they help children with IBD or Inflammatory Bowel Disease.
IBD is one of the most prevalent gastrointestinal diseases in the United States. He had estimated that more than 1.4 million Americans suffer from IBD and 25% of these patients are children. IBD is without a medical cure and most likely will require a lifetime of medical care, but we can improve the quality of these children's lives now.
IBD and the ImproveCareNow Collaborative next on Children's on Quality.
Dr. Rick McClead: Welcome to Children's on Quality. This is your host Dr. Rick McClead McClead, Medical Director for Quality Improvement Services at Nationwide Children's Hospital.
With me to discuss Inflammatory Bowel Disease and the ImproveCareNow Collaborative is Dr. Wallace Crandall Crandall, Professor of Clinical Pediatrics in the Division of Pediatric Gastroenterology at Nationwide Children's Hospital and my Associate Medical director for Quality Improvement Services.
Wallace, welcome to Children's on Quality.
Dr. Wallace Crandall: Thanks for having me.
Dr. Rick McClead: Before we get into the details of the exciting work of the ImproveCareNow Network, let's help our listener's with a little background of Inflammatory Bowel Disease. What is IBD?
Dr. Wallace Crandall: So IBD – there's two types that people usually think about. One's called Crohn's Disease, the other's called Ulcerative Colitis. And they really differ by what part of the intestine is involved. So Crohn's Disease can affect really any place from the mouth all the way through the anus. Whereas Ulcerative Colitis is just the large intestine typically. And it also differs by how deep the intestine's involved. So, with Ulcerative Colitis it's just the very inner lining of the intestine whereas with Crohn's Disease, it can sort of go all the way through the intestine.
And these are basically disorders that are caused by the immune system being out of control. As an example if you ate a bad sandwich or a bad lunch and you got food poisoning, you got a bacteria from that – your immunes system would turn itself on, kill off the bacteria and then turn itself it off again. The people with these disorders, their immune system doesn't know when to turn itself off the way that it should. So it kind of stays revved up when it shouldn't be. It thinks that there are some bacteria or something in there that it needs to kill and there really isn't anything.
Dr. Rick McClead: Are they really part of one spectrum of disease from one end to the other or are these two distinct diseases?
Dr. Wallace Crandall: Well, nobody knows for sure. They're probably two distinct diseases, but really there's probably 30 or 40 different diseases. There's probably lots of different causes of Crohn's Disease with therefore probably different treatments and there's probably lots of different types of Ulcerative Colitis as well. So the ones that kind of look the same as an end result – we lumped together as Crohn's and one's that look the same as an end result – we lumped together as Ulcerative Colitis. But there's probably lots of different types.
Dr. Rick McClead: And why does the immune system do this?
Dr. Wallace Crandall: Yeah, so nobody knows exactly. The way that we think about it is that it's an overlap of your genetic predisposition and the environment that you live in and the way that your immune system reacts to those two factors.
We know that there are close to 200 genes now that are associated with Crohn's and Colitis.
A decade ago, 15 years ago we knew about one gene and now we know about close to 200. So there's lots of genes that are involved. We know that there's some environmental factors; infections and antibiotic use may be involved and smoking and things like that. So, those things all go into play. And then some people's immune system based on those factors just get out of control like we were talking about.
Dr. Rick McClead: Are these conditions similar to other autoimmune disease or are they related in some way?
Dr. Wallace Crandall: There probably is some relationship there. For example, rheumatoid arthritis – a lot of what we've learned about treating Crohn's Disease over the years are what they've been doing to treat rheumatoid arthritis for some time. So their use of Methotrexate, their use of Remicade, Humira those kinds of medications has generally been years in advance of what we've been doing but with very similar types of outcomes and mechanisms of that working.
Dr. Rick McClead: Is anybody prone to do this or there are certain populations a patient is more likely to have these Inflammatory Bowel Diseases?
Dr. Wallace Crandall: Yeah. So, Caucasians are more likely to have it than African-Americans and people of Mexican descent. It also varies a little bit by sub type, I mentioned that there's probably lots of different kinds of Crohn's for example. So African-Americans for example may be more predisposed to having certain complications that can be associated with Crohn's Disease.
Having said that though, it may be more important where you live than what your race or ethnicity is. Some of those differences that we see actually all sort of come back together and everybody has a similar kind of risk if they've been raised in a similar type of environment. So being in a more urban setting increases your risk; certain countries – the more industrialized the countries are, the more likely you are to have Crohn's and Colitis. And in fact some places – some of the poorer countries really don't have much in the way of Crohn's and Colitis.
Dr. Rick McClead: Do we see people coming from areas of the world that have a less common incidents of these disorders? If they come to the United States and they live in this sometimes crazy world that we live in – in this part of the world, can they develop these conditions then?
Dr. Wallace Crandall: They can and actually their risk starts looking a lot more like everybody else's risk who lives in that area once they've been there for a while.
Dr. Rick McClead: So there's really this lifestyle that we have in United States that in some way contributing to it?
Dr. Wallace Crandall: Yeah and there's actually a lot of diseases where the immune system's sort of overactive that increase in prevalence when you live in an industrialized society. One of the theories – nobody knows for sure, but one of the theories is this so called "Hygiene Hypothesis." So if you live in an environment that's too clean as you're growing up you don't get exposed to the parasites and the infections and different things when you're younger that your immune system doesn't become tolerant of those things. And so then when you get exposed to them later on in life, your immune system doesn't know that it's OK, don't worry about it and that's the reason that the immune system overreacts.
Dr. Rick McClead: What it's like for a family of a child that has IBD?
Dr. Wallace Crandall: IN the beginning it can be pretty overwhelming for them. It's very scary kind of thing to be told that you have a chronic illness; we don't have a cure for it. They've experienced some of the symptoms that go along with that and the symptoms can be pretty disruptive; abdominal pain, bleeding, impaired growth, poor nutrition – things like that. So it can be a pretty big deal and it can be pretty scary and overwhelming.
Having said that, we're getting pretty good with treatment of Inflammatory Bowel Disease. So if you look at our patients as a whole, over 80% of them are in remission at any given time. So basically not having symptoms, not having side effects, not having complications – they're living a normal life.
Dr. Rick McClead: And that's all because of the ImproveCareNow Network Collaborative?
Dr. Wallace Crandall: Well it's certainly helping. The ImproveCareNow Network – when we first started with ImproveCareNow, the remission rate at Nationwide Children's was about 50% and that was about average for everybody else that was doing this. Our remission rate now ranges between about 80 and 83, 84%, so a very dramatic change. But what're really dramatic about it is we haven't introduced any new therapies during this time. So it's not that we had some new drug, we've just been better about delivering care to people.
Dr. Rick McClead: Doing what you know to do and doing it correctly every time?
Dr. Wallace Crandall: Yup, yup.
Dr. Rick McClead: That sounds like quality improvement.
Dr. Wallace Crandall: That's quality improvement.
Dr. Rick McClead: How do the ImproveCareNow Network Collaborative get started. You were part of that original group, tell us about that.
Dr. Wallace Crandall: Yeah. So there were six or seven groups who got together. Dick Colletti and Peter Margolis were the couple of the people who sort of have this idea and they recruited a small group of centers to start working together in figuring out how we might start improving outcomes for kids. And so we had some principals of quality improvement but we didn't know the specifics exactly of how we were going to approach this.
And it's just been kind of an iterative process over the last few years of defining what our goals should be and what factors are going to most influence those calls and how we can intervene in those factors and just sort of doing that repeatedly. We've changed what our goals are over time, we've changed some of our interventions over time and we've become much more sophisticated about the way that we're doing things. And as we've done that, we can see a pretty steady rise in remission rates over the last four or five years.
Dr. Rick McClead: Well, what does that mean for these families from a quality of life standpoint? As far as you got them in remission, how are their lives better?
Dr: Wallace: It's huge actually. When somebody has active Crohn's or Colitis, their life can revolve around their disease and their symptoms. You can imagine if you had stomach flu kinds of symptoms all of the time, your life would revolve around "Where is the restroom?" "What's going to happen if I get sick?" What's going to happen if I need to run to the restroom?" It interferes with them going to school, it interferes with them doing things with their friends, it interferes with them socializing normally – so, a huge effect on their life.
And when you can control all of those symptoms then they can start having confidence being in school all the time and doing things with their friends and socializing and all of that. So it makes a huge difference for families.
Dr. Rick McClead: They can go on remission but that can go the wrong way at any particular time?
Dr. Wallace Crandall: Yeah, yeah. You can have flare-ups and there's not any way of predicting when those are going to happen.
Dr. Rick McClead: There are particular things that families should be watching for early?
Dr. Wallace Crandall: Yeah. Oftentimes it's the same symptoms that they had when they were first diagnosed, hopefully not of the same severity because now they kind of know what to watch for. So symptoms may differ between kids. Some kids may have a lot of diarrhea, some kids may have very, very little diarrhea depending on what part of their intestine is affected. And so we usually ask them –
A. To watch for the kinds of symptoms that got them diagnosed to begin with and
B. We tell them some specific kinds of alarm things to let us know about.
So if they're having persistent fevers that aren't really explained or if they're having severe abdominal pain that's kind of outside of what they've experienced before, or if they're having vomiting that won't stop, or dizziness or lightheadedness that they've had with bleeding or lots of diarrhea. Those kinds of things we want them to tell us about right away.
Dr. Rick McClead: Well, I got on the ImproveCareNow Network and took a look at the materials that was available on the website, but one of the things that really I guess I wasn't surprised to see it is this handbook that you developed that along with some other investigators that are part of the collaborative. And I went through that handbook and I was just overwhelmed with the quality of the information you're providing the families – it presented in a way that makes it very interactive for them. So tell us how you see this handbook being utilized by the patients and their families.
Dr. Wallace Crandall: There's a concept that I think is really important. We call it "Self Management." So if you really think about how you're taken care of or how you interact with your doctor, you see your doctor for 30 minutes every three months or something. So the time that your doctor is actually managing anything with your care is miniscule compared to all the time that you're doing it. So we think that it's really, really important for the kids and for their parents to understand what's going on and to know what they need to do and why they need to do that.
And then as the kids get older, they assume more and more responsibility for their care because they're going to off to college or whatever the case may be and mom's not there anymore to remind them to take their medicines and do these other things. So we developed a handbook and it's different than most of the resources out there.
The majority of resources out there are primarily educational which is important; I don't mean to minimize that at all. Our handbook has some educational components to it but, it really talks more about expectations and behaviors. So each section starts with a little section called "What We Expect From You" and then a section on "What You Should Expect From Us." So we really kind of lay the framework there for how they should plan on taking care of themselves.
And then there's some informational pieces and a little tiny quiz kind of thing to make sure that they understood it. And probably the most important section is right at the end, it's what we call "Things To Do." And so for each topic that's covered, we ask them to then go and actually do things related to that. So if they're doing a section on Medications, we want them to actually call their pharmacy and do a refill or check on their medications.
We want them to bring their bottles to the clinic and talk to us about what the different pills are and what they're for and that sort of thing. So we actually have them check those things off as they work through this and the idea isn't that this is like some massive homework assignment that you're supposed to do between their first visit and their last visit. It's really something that is designed for them to use over their entire time with us which may be several years. So that they're ready developmentally as they're moving in to adulthood to really assume care for themselves.
Because in general the way that pediatrics approaches medicine I think is a little bit different than the way that adult's approach medicine. And I think there's maybe a little bit more hand holding and stuff that goes on here and we don't know has prepared kids very well to make that transition. So that's a lot of the concept behind it.
So we're a little bit different in our approach to somebody who's newly diagnosed in most places. We actually bring every newly diagnosed patient back to clinic and they spend half a day with us. They meet with our Nurse Educator, they meet with our Dietician, they meet with our doctor, they may or may not meet with a Psychologist or a Surgeon or other team members sort of as needed and we use that handbook as sort of the framework for the teaching that occurs in that initial half day.
So we try from the very beginning to set the expectation that we are here to help you but, you're a key part of this team. It's not, "I'm not going to fix this. I'm going to be a part of the team and you're going to be a very important part of team….
Dr. Rick McClead: As you well know we have lots of chronic diseases that we care for here at Children's Hospital and I think we have a variety of tools and things like that to help our families, but this is I think really unique. And I wonder if there might be an opportunity to use this as a model for some of our other chronic diseases? I don't know that we have anything quite like this other than for the intended population.
Dr. Wallace Crandall: We haven't seen much like this either in IBD, other places, or in other diseases. I do think it's probably a little bit unique. The other thing that we've done with it and this will actually be available in the next couple of weeks here I think, but we've taken the paper self-management handbook and we got a small grant through our professional society to turn that into a web-based handbook. So they will be able to do all of the same content but it will be on the web for them.
Not as good as an app, but they're certainly more interested in electronic media rather than in print.
Dr. Rick McClead: Right. Yeah, yeah.
Dr. Wallace Crandall: But the other nice thing about that is it's going to be on a learning management platform. So we'll be able to track what areas the kids look at – how much time they spend in each section and what kinds of things they ignore. 'Cause what we've done so far is we've taken this handbook to a bunch of parents and kids and said, "Hey tell us what's important, what you like, what you don't like," -& and that's how we developed it.
But there's always a certain amount of them trying to please us, I think. So this learning management system will actually tell us where they do go and where they don't go and then we'll be able to take that information and develop sort of Version 2. And I think the big difference with Version 2 that we're planning is instead of breaking it up by topic, we're going to break it up by developmental stage.
So there will be a component for kids who are at sort of this developmental stage. It may encompass sort of little pieces of all of the different topics. But rather than saying, "Here's what you need to know about surgery…" and then giving them that "Things To Do" list that may not be age appropriate for them, we think we'll probably reorganize it a little bit.
Dr. Rick McClead: You know one of the buzzwords in quality as you well know is "Patient Centeredness." This whole approach is patient-centered.
Dr. Wallace Crandall: Absolutely. Absolutely. And that's true both at a central level and at a network level.
So at a central level, we actually have several parents who are part of our QI team. Our QI team meets once a week and our parents join us as often as they would like but basically once a month. And that meeting is their meeting. So they command, they tell us what they're working on, they tell us what they think we should be working on. And sometimes they tell us just some fascinating things that make us just realize how dumb we can be sometimes when we don't think about it from their perspective.
A very simple example would be, we screen for Vitamin D deficiency in these kids and when we're putting together our protocol we kind of looked at what other people were doing for Vitamin D replacement and we came up with this. And so if they're Vitamin D level is at a certain point then we give them once a week Vitamin D for five weeks. It sounded like a great plan, that's what everybody did.
Our parents came back one day and said, "You know this is fine but our pharmacy will only give us four weeks at a time. So do we really need to do the fifth week? Because we get charged for a whole batch of pills again for the second time." And the five weeks versus four weeks had been fairly arbitrary so we were charging our patients twice as much as they needed to be charged for something we just had reminders on them.
Dr. Rick McClead: Did know, did not know.
Dr. Wallace Crandall: Didn't pay attention. So they've been huge and one of the things when they first joined with us, they had a very clear goal on what they thought the priority should be. And what they wanted to do was develop a mentoring program – a parent to parent mentoring program. They wanted somebody that they could talk to that had a real life view of what living with Crohn's or Colitis was all about.
So our parents came in and developed a peer mentoring program and it was of significant interest not just to us, but also to the hospital. So that program is now been translated to a hospital-wide program it's called Connecting Families. So I think that's been sort of a very positive happening and a very good example of how the parents can really effect change not just within our small group but within an organization.
Dr. Rick McClead: We have this handbook; it's available free on the web?
Dr. Wallace Crandall: It's available free on the web.
Dr. Rick McClead: So I'm going to put a link in our blog to that. So that if listener's are interested in taking a look at this wonderful document, they can do that. I think it was about 140 pages or something.
Dr. Wallace Crandall: I don't remember that it's…
Dr. Rick McClead: OK. All right.
Dr. Wallace Crandall: I should just mention, the parent representatives that I was talking about, one of them has become sort of so engaged and turned influential in the community that she's actually the parent leader for the parent group at a national level.
Dr. Rick McClead: Wow.
Dr. Wallace Crandall: So a lot of the things that we do and develop here, she actually can then take to other centers and say, "Here's something that we're working on, you may want to think about it." And likewise, other ideas that are out there because she has that national connection she could bring it back to us.
Dr. Rick McClead: She'd bring aback. OK. Well that handbook is a lot as you said about kind of making it clear to families what's expected of them, what's expected of the doctors and the staff etcetera. What is involved in monitoring a patient that has IBD? Let's say you get them into remission, what's involved in the keeping on top of things?
Dr. Wallace Crandall: Yeah. So like we alluded to earlier, we really want to know when their symptoms start changing. And we want to know fairly early because it's a lot easier to kind of intervene in the beginning than let somebody get really sick again. So just on a routine basis, we see them back regularly; it depends on what medications they're on. But anywhere from every eight weeks to every six months most people come back about every three months or so.
With those visits there's some blood testing that needs to be done. So they get their blood drawn pretty much every time they come to see us. You know it's not a lot of fun but most of them put up with that pretty well. Occasionally, we also have to do a colonoscopy or something with them again, but that's actually not a terribly frequent thing. So we have to do that if they're having symptoms that we kind of need to sort out. And then the other thing would be, once people have had Crohn's or Colitis for about eight to ten years then we start doing sort of more regular endoscopy and colonoscopy with them just to make sure for cancer surveillance and that kind of thing.
Dr. Rick McClead: One of the interesting things that was in one of the chapters of the handbook was the whole concept of a "Pill Cam." I thought that was interesting. Tell our listeners about that.
Dr. Wallace Crandall: So Pill Cam is some very interesting technology. Your small intestine is about 20 feet long and with the sculpts reach the first couple of inches of the small intestine, the last couple inches of the small intestine – they can't see the rest of it. So we do different kinds of x-ray tests and stuff trying to look at that but sometimes it doesn't give us quite the view that we need. And so the Pill Cam – it looks like a giant vitamin as far as the size and it's got a little camera implanted in the end of it. You swallow it or we can put it down with a scope and then it just sits and flashes every second or so all the way through your small intestine. It what's make the video tape of the inside of your small intestine. And then there are some tools that are sort of built-in to that technology that allow us to sort of review than a little faster than it's going through in real time. It may be in there for six or eight hours but we can over an hour or so kind of review all of those images and look to see whether there's active disease or narrowing or other things that would be of concern and like change the way that we were doing the management.
Dr. Rick McClead: And how's the video sent?
Dr. Wallace Crandall: So there is a recorder. So the sticky things that you put on your chest to get an EKG done – similar kinds of pads, they wore a little harness that has a recorder on it and it's just transmitted out to the recorder. The recorder just download it and the pill just passes through your intestine.
Dr. Rick McClead: So it's like a little radio transmitter?
Dr. Wallace Crandall: A little radio transmitter.
Dr. Rick McClead: Fascinating. Well, what about specific treatments? Let's say we have a flare and somebody's starting to just show early signs of these symptoms again, what had been the treatments I might have used initially? You know maybe the less complicated ones or potentially complicated therapies, but I now need to escalate a little bit. What's the progression of therapy for a patient?
Dr. Wallace Crandall: When we first diagnose somebody with Crohn's or Colitis, we talk to them about sort of our approach to therapy and there's really two parts to it. There's what we call Induction Therapy which is "I'm sick, now make me better." And there's Maintenance Therapy which means "I'm fine now. How do we keep that way?"
So when we're assigning medicines in the beginning and adjusting them as we go along, we're really talking about two groups of therapy. Options in the beginning for, and there's a little bit of difference between Crohn's and Colitis. But in the beginning for Crohn's Disease, it's often steroids as induction medicine, but they have too many long-term side effects. So we don't want to try and use them for maintenance therapy and they don't work very well for maintenance therapy.
So we put them on what are called "Immunomodulators" – medicines that tune down the immune system. And those would be things like 6-Mercaptopurine, or Imuran, or Methotraxate. That's usually the combination of things that would get used.
Now what we're learning about Crohn's Disease, in the past there's been this traditional step-up therapy which is what you alluded to earlier – start with the mild things and work your way up. What we're learning is that at least for some people they're more likely to have kind of a severe course and develop complications and stuff and so for that group of people it may be important to really start with the top of the therapies.
The things that have potentially a little bit more risk but are more effective and then see if we can back off over time. So oftentimes in situations where we have somebody who's at risk for more serious kinds of disease, we'll start with what are called "Biologics," they're drugs that block necrosis factor; Remicade, Humira, Cimzia – those types of medications. And then we may or may not use 6-MP or Imuran or Methotrexate along with those. So really starting with the things that we have that work very, very best and then seeing over time if we can decrease those.
There's another group of medication called "Aminosalicylates" or "5 ASA" drugs and those have been shown to work pretty well for mild to moderate Ulcerative Colitis. So in the beginning we'll often use those medications with the Ulcerative Colitis patients but it's not clear that they work terribly well for Crohn's Disease. So sometimes they get used for Crohn's and sometimes they don't just depending on the situation.
If somebody is on stable therapy and then subsequently get sick, it really depends on the timing. So if they're newly diagnosed, we'd do their induction therapy, we start them on maintenance therapy. And as soon as we start taking away their induction therapy they start getting sick again and we start saying, "Well maybe that maintenance therapy isn't really going to be a good one. So we'll do induction and a different maintenance therapy."
You contrast that to somebody who, let's say they got their induction therapy with steroids, they got started on 6-MP, they don't have a flare-up for 3 1/2 years, and probably those people – we'll just put them on steroids again and just leave then on 6-MP just to get them back in the remission and see if we can get another three or four years before they have any problems.
Dr. Rick McClead: Sometimes when they do develop problems surgery is indicated, what are those criteria?
Dr. Wallace Crandall: Surgery differs a little bit with Crohn's and Colitis and the reason is, back at the beginning I said, for Ulcerative Colitis it only affects the colon, but Crohn's can affect anywhere. So for Ulcerative Colitis, if the medicines aren't working or if the person just decides that they're done taking medicines and they don't want to deal with that anymore, you can take out the colon, you can do a colectomy and "cure the disease." You know there's always problems, but people can do pretty well without their colon, so some people choose to do that especially if the medicines haven't been terribly effective for them.
With Crohn's Disease, it's a little bit different because if you take out a portion of the colon or the small intestine for Crohn's Disease and you saw that back together, the Crohn's Disease is likely going to come back again. Oftentimes right where you sewed it together, so you can't just take something out and think that you're cured with Crohn's. So Crohn's surgery is usually more for complications. Sometimes with Crohn's Diseasem people will develop strictures which is a narrowed area and some scarring. So the surgeons can go in and remove that narrowed area and saw things together again. Sometimes they will develop a fistula or an abscess.
A fistula is a tract connecting things that shouldn't be connected. Or an abscess – a pocket of pus, an infection. And so the surgeons will go in and clean that out and close up the fistula and that sort of thing. Occasionally, even with Crohn's disease the colon will be so severely inflamed and not responding to medicine that taking it out is still the best option but, it's different than with Ulcerative Colitis. We haven't cured anything; we've just taken out the part that was causing them the greatest among of problem.
Dr. Rick McClead: You had mentioned that remission is one of I guess the major outcome metrics for the ImproveCareNow Network. What are some of the other parameters you're looking at as a way to know that you're program is working for the patient population?
Dr. Wallace Crandall: Yeah, right. So we look at a number of process measures and the number of outcome measures.
Process measures – we have a bundle measure where we look to see that everything that we think should be done or to visit was actually done; Was growth measured? Was nutrition evaluated? Did we categorized their disease? Did we assess adherence that we do these kinds of things?
Other process measures; Are they correct dose of medications? Did they get tested for tuberculosis before they got started on certain medications? – So those aren't outcomes, but there're things that we think are important in getting the outcomes that we want.
Outcome measures – the big thing is remission. We also look at steroid use. So generally speaking, we try not to have kids on steroids. So, steroid-free remission and just steroid use in general are a couple of our outcome measures. We look at growth and nutritional status as well and generally we've had sort of subjective measures of growth and nutrition, meaning that the doctor will look at the growth curve and say, "Yeah their rate of growth seems normal."
We're actually with some of a newer technology that we are developing, we'll be able to look at more objective measures; the height velocity. So just to be able to look at the growth points and put out a number that represents their rate of growth for that period of time.
Dr. Rick McClead: What are the families telling you about this change in approach to managing IBD?
Dr. Wallace Crandall: When we first started out and this was the wrong approach but it's the way I was thinking about it at that time. What I wanted to do was build a system that was so seamless that the patients couldn't tell anything was different. That when they came in to a clinic visit everything was still kind of the same but we were just sure that everything was being done correctly and that's how we did it in the beginning.
We're currently in the process of making sure that every single patient in the practice knows exactly what we're doing and how we're doing it and that sort of thing. And the feedback is really been great. People are very happy that we're doing this; they're excited about the results that are being achieved. And they're very supportive, not only that we're doing it, but if they can be directly supportive, probably 99% of the patients that we see sign a consent form saying that it's OK to use their data for research purposes. We've just been using it for quality improvement, generally speaking.
But they're excited about what we're doing and they want us to continue to take those next steps and continue to improve care, not just for their child but for all the kids in the future.
Dr. Rick McClead: That's great. Well that's all the time we have for this edition of Children's On Quality.
Children's on Quality is produced by Kelly Nightingale. Our theme music, Fleeing Moments, was composed by Ryan McClead.
Announcer: If there is a quality of care issue that you would like to hear more about, let us know by contacting us on our podcast website or send us a message through Twitter, our handle is @nationwidekids.
Dr. Rick McClead: Next time on Children's On Quality we will be discussing the Treat Me With Respect Program.
Until then, this is your host Dr. Rick McClead McClead wishing you the best of health.
Jun 24 2013
Rank #10: Explaining the Country’s Infant Mortality Rate – Part 2
Infant mortality rates among the African American population are higher than those of the Caucasian population in this country. Part two of this infant mortality podcast addresses some theories that explain this disparity, including the issues of poverty, education and racism in the African American community. These stressors affect a woman’s overall health and as a result, the health of her baby before, during and after pregnancy. Listen in as Dr. Arthur James delves into these and other environmental factors that all contribute to very specific birth trends among this population. Dr. James also addresses how the genetics of this population are affected by environmental factors, and in turn, influence the infant mortality rate.
Dr. Rick McClead: Welcome to Children’s on Quality. This is your host, Dr. Rick McClead, Medical Director for Quality Improvement Services at Nationwide Children’s Hospital. A few months ago, I had the pleasure of interviewing one of our nation’s leading authorities on the problem of infant mortality in the United States, Dr. Arthur James.
Dr. James is an Associate Professor of Obstetrics and Gynecology at the Ohio State University College of Medicine and at Nationwide Children’s Hospital. He is co-director of both the Ohio Better Birth Outcomes project and the Ohio Department of Health’s Collaborative to Prevent Infant Mortality. He’s also the Director of the new Teen and Pregnant program or TAP at Nationwide Children’s Hospital.
Please join me for part 2 of my interview with Dr. James about the high rate of infant mortality in the United States.
When we speak about, I guess, basically busting certain people’s beliefs about why these disparities exist, specifically issues around socio-economic status, the difference between whites and blacks, genetic issues, education, address that for our audience.
Dr. Arthur James: OK. I don’t know that I really bust anybody’s bubbles, because I think most of those things that there is some contribution. But here is the perspective that I take – first of all, where the genetics issue is concerned, I don’t think that there’s any data, any current data that suggest to us that the belief that the black infant mortality rate is so significantly higher than the white infant mortality rate because blacks are genetically just predispositioned to have poor birth outcomes.
I don’t think that that argument holds any water. I don’t think that for several reasons – first off, if it was the case, just generally looking at the data in the United States, if that was the case, then how do we explain why blacks in Ohio in 2010 had an infant mortality rate of 15.5 while blacks in Northern Manhattan Perinatal project had an infant mortality rate of six; or why blacks in California for 2010 had an infant mortality rate of 8.5.
Are we suggesting that the black folks who live in Ohio are genetically inferior to black people who live in California or who live in New York City? Are we genetically more fragile? I don’t think that’s the case.
If we stay with the genetic issue for a while and look at a study done by Dr. Jim Collins out of Chicago who looked at comparing both birth cohorts over 15-year period of time for the entire State of Illinois, looking at the incidents of low birth weight, births for whites, for blacks who were born and raised here in the United States, as well as for African immigrants, so these would be women who were from Africa living in the State of Illinois and had babies.
During this period of time he looked specifically at low birth rate because we believe low birth weight to be a risk factor for infant mortality. The higher the incidents of being born with a low birth weight the higher the risk of infant mortality.
And what Dr. Collins’ study showed was that the birth weight distribution curves for white and for African women who had babies here in the United States that the birth weight distribution curves are more similar for those to than it was. For African-American women, the birth weight distribution curve was disfavorably shifted to the left, meaning there was a much higher incident of babies being born with low birth weight.
Dr. Rick McClead: So if you’re from Africa but you deliver here, you have an infant mortality rate that’s very similar to the Caucasian…
Dr. Arthur James: That’s absolutely correct.
Dr. Rick McClead: But if you’re African-American and lived here all your life and you give birth you have this two and a half times.
Dr. Arthur James: That’s correct. And Dr. Collins actually from that suggested to us that there was some other contributor that wasn’t genetic for sure and that there was some other contributor to why the disparity ratio was what it was. And he actually went as far as to suggest that one of the significant contributors and to that disparity ratio was actually racism.
Now subsequently, the Center for Disease Control published a study and said in essence, wait a minute, Dr. Collins, if you look at any immigrant group who comes to the United States and have babies, for those immigrants their infant mortality rates are good. We think that they’re good in part because it takes some level of financial independence for them, first of all, to move to the United States that there’s a higher incidence of therefore graduating from high school and going on and having a college degree that they’re a less teen births, so that there are things that we’ve selected out in terms of the immigrant group that comes here and that probably applies to the Africans who come here and have babies and that probably contributes to why for this that first generation why those babies born to Africans who deliver here in the United States have infant mortality rates and birth weight distribution curves more similar to whites.
And so Dr. Collins said, OK, so let’s look at the subsequent generation. Let’s look at the girls that these African women had who stay in the United States and then have a baby, let’s compare those babies to African-Americans and to whites.
Dr. Rick McClead: So this is will be the first generation of those, of the women who came here who delivered their daughters who were raised here in the United States, have a baby, that’s the population we’re talking about.
Dr. Arthur James: That’s right. And so when he looked at that group what he found was that the birth weight distribution curve for the daughters of the African women who had babies here in the United States was unfortunately much more similar to the birth weight distribution curve for African-Americans as it was for whites.
So whatever that protective factor was that initial generations who moved here enjoyed was essentially lost in one generation. Dr. Collins believes and many or the rest of us have jumped on that bandwagon that at least one of the significant contributors for that loss of protection was because of the experience of racism in this country.
But I want to go back to some of the other things that you mentioned because you talked about poverty, you mentioned socio-economic status, you talked about smoking.
Dr. Rick McClead: Education level.
Dr. Arthur James: Yeah. Education level. There are a lot of other things that contribute to the disparity, but they don’t contribute so much that they totally explain the disparity that exists. So the point that I’m trying to make here is that I think those other things also need to be addressed, that we need to be vigilant about trying to improve those circumstances.
But if we really want to eliminate the disparity in terms of black-white infant mortality then we have to address those things; we have to address what goes on clinically; we have to incorporate a social determinant of health perspective because if just try to improve infant mortality by only addressing, for example, poverty, which I think is a significant contributor, there are many of us who believe that poverty and racism are intricately intertwined with each making the other worse.
And in my opinion, racism is the venom in the bite of poverty. So that for groups who experience that in addition to being poor their outcomes are going to be much worse than we believe generally acceptable in this country.
Dr. Rick McClead: One of the things that you mentioned in your presentation at the Infant Mortality Awareness Conference that I thought was fascinating was this issue over the education that a graduate level educated black woman has an infant mortality rate that is higher than a white woman who didn’t graduate from high school.
Dr. Arthur James: That’s correct. That’s correct. And that’s been confirmed by a number of studies. It takes to a whole another level, much of which is more theoretical at this point, but it is believed and we take this from models that looked at the effect of stress on us physiologically, the effect of stress on us biologically and we believe that chronic ongoing stress has a detrimental effect overall on our health.
How does that occur? Dr. Michael Lewis is pretty infamous in his talk of asking us to imagine ourselves in a room where suddenly there’s a saber tooth tiger that jumps in and comes into the room. And for most of us our bodies automatically go into that fighter fight kind of response where our heart rates would significantly increase or depth of breathing and the rate at which we breathe would go up. Where we would look to flee we ran out of that room as quickly as we could.
But that kind of stuff happens automatically when we’re faced with significant stress, but then when we get to a place that we consider a safe haven without consciously asking our bodies to do it, our heart rate slows down, we begin to perspire less, our breathing rate slows down, our body goes into a recovery phase, if you will. We refer to these processes as allostasis.
Well the belief is that when we are chronically, day in, day out for all of our lives, challenged by stress that autoregulatory function and allostasis mechanism that I just described is altered, so that our body even in a “safe haven” doesn’t rev down, doesn’t slow down, doesn’t relax to the same extent that people who, for example, don’t experience chronic stress and don’t experience racism go-through.
And we think that the regulation of those cells that results in behaving as if we are in a chronic stress kind of environment is explained by this field that’s burgeoning right now that’s referred to as epigenetics that talks about the programming of our cells.
In that epigenetic sense, for those of us who are in situations where we experience racism everyday throughout our lives and the stress associated with that, that there’s a difference in the way our genes are programmed so that they’re revved up. Think about like the engine of a car that in a safe haven would be in a nice, slow, idle, not stressed at all versus in your garage a car where there’s somebody who has their foot all the way down on the gas pedal and so that engine is just accelerated at much higher speed than it ought to be for a car that’s parked in a garage.
Which of those engines is going to last longer? Which of those engines is going to have problems occur sooner? It’s going to be the engine that we’re gassing all the time, that we’re revving the engine at real high levels all the time. And there are many of us who believe that that’s the effect that racism has on us.
And the scary part about it is that while the Dr. Collins’ studies suggest to us that it only takes about one generation for us to lose that protective effect for our genes to be reprogrammed for us to begin physiologically and biologically experience some of the consequences of racism, what we don’t know yet is for those of us who had been in this country approaching 400 years we don’t know if we could flip a switch today and eliminate all racism that occurred in the United States.
We don’t know how long it would take for those of us who had been adversely affected by racism to physiologically recover so that whatever those effects are of racism that have a detrimental effect on our health it would totally be reversed.
There’s also one other piece that I’d like to address here because I heard this at the Neonatology Conference and I’ve also heard this at other times when I’ve given this talk that there are a lot of people who feel like despite any and everything that I’ve said, despite what much of the evidence suggest to us, that in fact the reason for the disparity in infant mortality has entirely to do with people’s behaviors.
It’s not the fault of racism, for example, that people don’t graduate from high school and go on to college and graduate from college. I think there’s some debate there about what influence racism has on those things. But where the behavior piece is concerned, Sir Michael Marmot out of England, who’s probably the godfather of this whole social determinants of health approach to improving our general health situation, but many, many, many, many others have also suggested to us that the behaviors that we may want to modify that contribute to poor health outcomes are in fact shaped and influenced by our environment.
And so African that takes a social determinants of health perspective looks to alter the environment away than more favorably influences our choices. So that if you live in an under-resourced community where for example there is a much, much, much higher density, for example, liquor stores, stores that sell cigarettes than there are in communities that are significantly better resourced.
And those under-resourced communities have much higher incidents of crime. There’s a much higher incidents as we said earlier of unemployment, school failure, etc., that if we change the milieu, if we change the circumstances in those communities, we believe that we would also change many other behaviors that we think are more detrimental to our health and that those things would contribute significantly toward improving the infant mortality.
Well, Dr. James, is there any evidence of that? I would then go back to the Northern Manhattan Perinatal project, where in fact that project remembers sits in in this part of the Harlem’s children’s zone, where in the Harlem children zone there was this general effort to improve the quality of life for a certain geographic area within Harlem.
And within that geographic area of the Harlem children zone there was even a smaller area carved out where coupled with the efforts that were taking place in the Harlem children zone there’s been this concerted effort to try to improve birth outcomes. And it’s there that we’ve enjoyed this 85% improvement in the cohort that’s 85% African-American.
And that project has been so impressive that nationally there is an effort going on now that’s called “Better Baby Zones”. It is in essence, attempting to emulate that effort.
Dr. Rick McClead: To duplicate that project.
Dr. Arthur James: Right. Right.
Dr. Rick McClead: What it’s going to take to set up these baby zones all over the country so that we can, I mean probably we need to focus on major urban areas around that country, but what has to happen to make something like that come about?
Dr. Arthur James: Well personally, I think that the biggest obstacle right now is creating the will to do it. The will within communities to accept and understand that this is something that we can do, that it’s achievable, that we need to get away from being stuck in this mode where these disparities are concerned that they’re just fixed, that they’re just the way things are and that there’s nothing that we can do to improve them.
Once we create the community will then I think all the rest follows in terms of the amount of funds that it’s going to take, the commitment of different groups and organizations. The other piece that I think is going to require a substantial paradigm shift for us is to really begin to accept that there are the significant, non-clinical, non-medical things like employment, like the quality of our lives and the communities that we live in, that have huge, huge impact on our health.
And as long as we take the approach that for those of us who practice medicine have just stayed with in terms of the medical model, we won’t get to those other things. One of the tough parts for those of us who practice clinical medicine to appreciate and understand about this is that we can’t do it by ourselves.
We have to go out and engage the rest of the community in this process. So we need to get politicians, the business community, the public school system, private school system, parks and recreation, police and law enforcement. There is no segment of our community that doesn’t have a role to play in terms of improving the social determinants of health.
And the wisdom in that approach is that while my interest for right now is improving infant mortality and trying to actually eliminate the racial disparity that occurs in infant mortality. The wisdom in the social determinants of health approach is that I believe that approach is not only going to help to accomplish the improvements that I’d like to see in terms of infant mortality, but it also will help in terms of decreasing the poverty rate, improving school performance, decreasing the dropout rate, improving college attendance rates, improving the quality of life in general for people in this country so that a lot of the other things that we also have concerns about will also be substantially improved.
And by the way, we improve the quality of life, the longevity of life, we decrease the disparity and heart attack rates and strokes and hypertension, diabetes and a of other things that we also are plagued by in this country.
Dr. Rick McClead: Well that’s all the time we have for this edition of Children’s on Quality. Children’s on Quality is produced by Kelly Nightingale. Our theme music, Fleeing Moments, was composed and performed by Ryan McClead. Next time on Children’s on Quality, we will be discussing the problem of what to do with those unused prescription drugs.
Until then, this is your host, Dr. Rick McClead wishing you the very best of good health.
Mar 05 2013