C3N for CF

Posted on 14 February 2013 by ImproveCareNow

[Editor's Note: Erin Moore is "Doin' it for Drew"! Drew has Cystic Fibrosis (CF). CF is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). It is a chronic illness - meaning until a cure is found, CF is forever. Erin is collaborating with the C3N Project; exploring the creation of a Collaborative Chronic Care Network for CF. This post was originally featured on Erin's blog - 66 roses.]

I arrive for our clinic appointment around 7:45am. The last time we were here was 3 months ago. Usually, we are ushered back to a room within 15 minutes of arrival. A nurse greets us shortly thereafter to review our medicine list and address any issues that we’ve been having. Just the other day he was coughing up a storm but seems to have gotten over it. Should I talk to the dietician about his diet again? His weight is up and his stools seem “normal” but I’m always anxious about his lack of interest in food. I wonder if an RT is available to talk a little bit about his airway clearance. I don’t want to be a bother but I sure do think the airway clearance he had in the hospital this summer was more effective. I wish I knew what they were doing differently!

Next up is the doctor. She asks how things have been going. Today? Great! Last week? I was a little worried, but the cough he had seemed to go away. There was that one day that his stool was a little weird but that got better too, not sure what caused it. And frankly I can’t remember back farther than that. She checks him out and wants to review his labs since we are at his anniversary visit. His vitamin D is low, his breathing still sounds a little noisy, and a note that she has from his ENT seems to indicate that he may need another sinus surgery. She feels out whether I’d be open to a bronchoscopy at the same time. Maybe another CT is a better option. When I talked to the ENT last month it sounded like things were going well? I guess I don’t mind if they do a bronchoscopy while he’s under for something else, but I remember huge discussion with other CF parents on Facebook about CT scans and all the negative effects of radiation and I don’t know that I want to do that? I wish I could find that conversation! I ask questions about a game plan for if he needs IV antibiotics if we grow pseudomonas again, having read online about all different methods used for eradication but not knowing which is best and why. It’s hypothetical at the moment because they haven’t even swabbed him yet. I just have sort of a busy life and sometimes having a plan provides a sense of comfort for me. She suggests an action plan and I am mostly on board, except for the azithromycin because I saw a presentation somewhere that seemed to show compelling evidence against its use. I wish I could find that presentation to show her! I trust his doctor and want to follow her recommendations, but I have some reservations. I don’t think either of us has time to get into this as I’ve already taken up more than my fair share of appointment time. We agree to wait for the results of the culture to decide a course of action.

Next up is the dietician. Lucky for me, he has a “weird poop” while we are there so she can look at it and provide her thoughts. This isn’t what all of his stool looks like. I don’t really know how often his stool looks like this – sometimes once a day, sometimes 4 times a day, sometimes once a week. We talk for a bit about enzyme dosing and the calories he’s taking in, her offering suggestions for beefing up his intake and me adding them to the “notes” section in my iPhone, hoping I can get them down elsewhere before one of my kids deletes them by accident.

The social worker pops in to address some questions about starting preschool that I had mentioned to the nurse 2 hours ago. I had met with the Psychologist about a year ago to talk about his lack of interest in food, but never followed up, mostly because of both time constraints and cost. If only she could pop in and give me a couple of quick suggestions. But I have to go, we’ve already been here for almost 4 hours. While waiting for my discharge paperwork, a research assistant shows up to see if I’d be interested in participating in a study about I’m not sure what because my 3yr old is clambering to get out of that office. I agree anyway, get my discharge paperwork and fly out the door.

This summer, we were visiting family in Philadelphia and my son got sick. He was admitted to Children’s Hospital of Philadelphia for a pulmonary exacerbation. Not a single morsel of information about him and his history with Cystic Fibrosis was available to the doctors at CHOP. Many phone calls were made between fellows from my personal cell phone to understand his medical history and doctors asked me the same questions day after day before we trusted and understood each other and hashed out what was going on in the days leading to our admission. I know that it was in Drew’s best interest that we discuss everything about him ad nauseum, but it blew my mind that in this age of technology, there was no electronic medical health record that the doctors in Philadelphia could access to understand Drew to provide the best care for him quickly.

When Drew was a baby, we kept a diary of his formula intake and the corresponding output. We set up a nice little Excel chart and shared that with our dietician on a very regular basis. I credit that chart for his gained weight and reaching the 50th percentile by the time he was 6 months old and he has been able to maintain that to today when he is almost 3. I know that all patients aren’t equal, but wouldn’t it be great if that data, if our “patient reported outcomes” were cataloged somewhere so that we could share what we did and how it worked for us? Sure, I could take to the CF Mom’s Facebook page and ask about what high calorie snacks work for their 3 year olds and hope that some of those moms are online and eager to provide some feedback. But once that question is asked and answered, it just simply vanishes into cyberspace. I cannot tell you how many times I’ve said, “I know I’ve seen that somewhere”. Image the power of cataloging that data, those conversations, those findings. It can be used by patients, by doctors, by researchers and teachers. Just thinking about the power of that is what is driving me to stay involved and insist on nothing less.

I think you’re seeing my point, a point that was brought out in almost every session I sat through at the NACFC this year. The information that we currently have on patients in between visits is limited. Filling those gaps would give us a more complete picture of health. It would help doctors to intervene at appropriate times, times when patients might not call because in their mind “its just not that bad yet”, but doctors are able to identify a problem or a pattern that lets them know the direction something that’s “not that bad” is headed. They would be able to more easily determine if certain therapies were actually making a difference through the combine use of passive behavioral and active patient reported data, looking at a real-time view of what is going on with a patient, not what they remember to tell you when they are in clinic. The registry could be enhanced by identifying day to day trends and commonalities in patients sharing mutations. And all of this data can be used by researchers and scientists to figure out every last detail this disease and find therapies that work for every one of us. From a parent’s perspective, the C3N is what we need to make life easier and improve outcomes while we wait for our cure.

To Nudge or to Push

Posted on 23 January 2013 by noel jacobs

Mother to teenage son: “Hey, have you taken your medicine yet?”

Son (playing video games): “I will in a minute!”

Mom (wondering whether it’s worth the fight): “You know, you’re gonna move out in a few years and you’re going to have be able to do this without me telling you. And you know you don’t want flare-ups if you can help it!”

Son: “Nope, you’ll have an alarm on your phone and you’ll just call me and keep nagging until I take it. Can’t wait for that!” [insert sarcasm]

And, end scene. Mom walks offstage slowly, imagining how many more times she’ll ask before he takes it, if he’ll ever fully be in charge of his body, maybe whether he’ll be living on her couch at 40….

Is this exaggerated? Maybe. But I know many families in this boat. They don’t have emergencies, and they get a clean “Good job, no problems this quarter!” during the GI checkup. The child has a good quality of life when it comes to school and sports and social time and… it’s because mom stays in charge. She’s in charge of the medicine, the questions for the doctor, all the IBD knowledge necessary to lead a good life. She’s running this show!

How much should we push our teens to start taking charge and showing responsibility? It’s difficult. If we push too little, they don’t grow up. If we push too hard, they retreat and we keep doing everything anyway “because someone has to.” And by the way, ‘Why wasn’t that last relapse and hospitalization enough to make him wake up and start doing something about it?’

Deciding when responsibilities and consequences belong squarely on the shoulders of a teenager is difficult. So I believe in not placing it squarely on their shoulders. Too many experiences in your child’s life will happen too fast for them. Generations ago children were shown early the value of very hard work and developed the ability to value important things in life. In the culture of today these milestones are sometimes delayed too long and kids end up not being ready for adulthood’s responsibilities. George Bernard Shaw is credited with writing: “Youth is wasted on the young.” We look back on our own youth longingly, and wish our children could appreciate what they have while they are in their best form with the fewest problems and fewest responsibilities. But then we’re frustrated when they’re not ready for adulthood.

What I recommend to my parents, and work with them on during transition consultations, is a very intentional, dedicated and patient shift from parent-only to parent-child partnership through contract. Remember, childhood and adolescence are not just about fun, freedom, and all the time in the world. In all times and across all cultures youth is a time of great education and preparation. But we sometimes lose our perspectives as adults and forget that we are supposed to be their most important teachers. So here’s how we can teach them to prepare for adulthood. We show them, we do things together, we set expectations, and then we structure their lives so they’re rewarded for moving forward, for accepting apprenticeship. And while they’re learning, while they’re taking a little more on for themselves, we encourage and reward them for trying and for succeeding (and we stand by them when they do not succeed). After all, mistakes are proof that you’re trying, right?

Mother to son: “Okay, honey. I am going to tell you something important. Right now, I’m your mom, and I’m used to being in charge of your health. I use my insurance, I make your appointments, I take you to the doctor, I ask the questions, I go to the pharmacy, I pick up your medications, I put them in the day minder boxes, and I nag you until you take them. You’re going to take all of this over one day, because I love you and you have to live your life; I can’t live it for you. It’s not going to be today, or tomorrow; it’s going to take a while. But we’re going to do it a little bit each day, together, until you feel good about it, until you know how to solve the problems that come up, and until you are absolutely on top of everything you need to do to live well on your own.”

This principle applies, of course, to laundry, to keeping a room clean, to fixing food in the kitchen, to homework, even to friendship and romantic behavior. It is apprenticeship. The training starts early, it starts deliberately, and is more difficult for the parent than for the child. Again, this is the way it’s supposed to be. You cannot point, demand, and then leave responsibility for medical adherence in the hands of a child. But you can hold the hand of the child, guide them through the experience, and slowly transfer, through gradual steps and support, all the responsibility they’re ready to accept. And they’ll be ready. Ask a psychologist, like me, who has seen parents and children do this well.

Start today. Age 8? Great. Age 12? Go, go, go! Age 18: It’s time to sit down and have a conversation. And roll your sleeves up.

Mother to son: “Honey, you did a great job this week getting your pills organized into the day minders while I watched, and taking all but two of your evening pills just based on your phone alarm. I’m proud of the progress you’re making, and I want you to know I know you’re going to be ready for what life throws at you! I’m behind you all the way.”

Son: “Mom, it’s not like I’m leaving tomorrow! Don’t get all gushy. And don’t EVER do that in public.”

Emma: Your Waiting Room Ally

Posted on 3 December 2012 by samisophia

Today is the second day of Crohn’s and Colitis Awareness Week. Throughout the week, Jill, Jennie, and I will be taking turns profiling some ImproveCareNow innovations we are incredibly excited to share with the community. I have the honor of introducing Emma, a promising initiative out of Oklahoma University (OU) Children’s Hospital to bridge the gap between tech-savvy adolescent patients and their gastroenterologists.

Who is Emma? Emma is the main character in a captivating iPad game of the same name, developed by OU students in collaboration with Dr. John Grunow. The Emma iPad app is designed to engage young patients in the waiting room, educate them on how to better manage their IBD, and give clinicians a preview into their patients’ health and needs. Each session is customizable to a young patient’s diagnosis and history.

Put an iPad with the Emma app in the hands of a young patient; she’s a little bit anxious about her upcoming clinic visit, but is tech-savvy and somewhat disengaged in the waiting room. Emma transports her into a colorful, interactive four-realm world. It reads like a storybook at first, but soon launches into a variant on Angry Birds. The adventure begins in Port Vanguard, the portal to all four worlds. Soon, our patient is swiping her fingers across the touch screen, navigating Emma’s rocket ship through hazardous terrain and “boosting” it when it starts to fall. It’s familiar, it’s engaging, it’s competitive….and it’s educational!

Emma App Screen Shot Welcome to Port Vanguard

Screenshots from Emma app courtesy of Robert Free (co-developer)

As our patient plays, Emma slips in multiple choice questions that test her comprehension on topics like nutrition and self-management, questions customized to her diagnosis. Emma also asks the patient to rank her quality of life and emotional health. Emma sends our patient’s responses and a summary of specific target areas of patient education which need work to her gastroenterologist. Her GI can then tailor her subsequent visit to address gaps in her understanding of her diagnosis and specific areas of concern. Emma is all about streamlining the clinic visit to make effective use of everyone’s time. The app is currently being beta tested at OU Children’s Hospital, where a select group of patients are helping Emma reach her full potential before hitting ImproveCareNow centers nationwide.

Why do I think Emma is so brilliant? Emma is an effective and clever use of technology, which has been designed especially for a tech-savvy generation. Emma engages patients in the waiting room while giving physicians a quick pre-visit snapshot of their condition. She turns waiting room downtime into a productive use of patient energy (and maybe even jitters!) to better the patient-physician dynamic. I met Emma this past summer during a Patient Advisory Council beta test opportunity and was immediately impressed. As I transition into adult care, it’s exciting to watch technology improve the pediatric clinic environment I lovingly leave behind. Emma is innovating the clinical experience, starting right in the waiting room. That’s a real game-changer.

ImproveCareNow to Publish CIRCLE on IBD Transition

Aside

The December issue of CIRCLE will be published on Tuesday November 27th. The eNewsletter, which is published by ImproveCareNow for patients & families living with Crohn’s disease and ulcerative colitis, will feature parents talking about transition points, supporting each other and the importance of caring for their kids now. We’ll include some tools and resources on transitions too. And as always, you’ll find links to trending IBD topics from the past month, up-to-date ImproveCareNow remission rates and more. Don’t miss it. Sign up to have CIRCLE delivered to your inbox today.

What We Wish Our Parents Knew

Posted on 2 November 2012 by samisophia

At ImproveCareNow’s Fall Learning Session, the Patient Scholars and parents had a special breakout session together. At the parents’ request, Jennie and I have co-authored a list of What We Wish Our Parents Knew navigating IBD through our teenage years:

1) Take a deep breath: Living with IBD as a teenager isn’t easy, but it doesn’t need to be figured out all in one day. There are going to be days that go according to plan, and those that really don’t – sometimes just getting through the day is the goal.

2) I’m moody; get used to it: Regardless of my IBD, I’m still a teenager, and I’m going to be moody sometimes (or okay, a lot of the time). It doesn’t mean I don’t love you, it doesn’t mean I don’t need you; it just means I’m growing up.

3) Let me cool off: Between the stresses of growing up and dealing with my disease, there will be times I just want to be by myself. Let me take some time to calm myself down. I will come to you when I want to talk.

4) I’ll know when I’m ready: The second best decision I made after my diagnosis was to join a teenage support community. The first best decision was to wait until I was ready to make the most of it.

5) Forgetting is not failing: If I forget my pills a few times or make some choices I’ll regret on the toilet tomorrow, don’t assume you need to charge in and take control. I know it’s hard for you to watch, but you’ll make more of a difference if you ask me how you can help me do better instead.

6) One of these kids is not like the others: Especially when I’m sick, try to go easy on and make time for my brothers and sisters, even if it means taking time away from me. Remember that we all don’t know how it feels to be each other.

7) Caring isn’t always sharing: I know you don’t like when I don’t tell you about the blood or mucus or pain until it’s been happening for a few days – but until there’s something we can do about it, I’ve always felt it’s better for just one of us to be scared. Trust me to know when I need to come to you and when I don’t.

8) It’s my body, and I’ll decide if I want to: I am going to be moving to adult care soon, and it’s important that I’m prepared to be my own medical advocate. Help involve me in my care, encourage me to call my nurse and refill prescriptions, listen carefully to my concerns and ideas, and help me make decisions with you and my medical team.

9) There’s nothing like a good IBDer: My IBD friends will just ‘get’ it, and it’s really important to have that social support – it helps me feel normal and social.

10) Hello, my name is IBD: If I ask you not to mention my disease in a public situation, it doesn’t mean I’m embarrassed. It may just mean I’d like to introduce myself before I introduce my disease.

11) At least it’s not ….. : Some of my friends with IBD or other chronic illnesses will be healthier or sicker than myself, but please don’t make comparisons. I know my worst may be someone else’s best, but that does not mean I don’t have a right to mourn my losses.

12) What hurts the most: When you say you’d take my colon from me and give me your healthy one if you could, I know it’s because you love me and hurt seeing me in pain, but I could never dump this on you. Some days, I wish you could see my perspective, but the thought of you feeling my pain makes me hurt more than anything.

13) Home is where your guts are: I don’t want to be defined by my disease, and part of that is going to school/work where I want. It’s possible to leave home and travel for school. With the right accommodations, I can do anything. I know my body and myself, and I can decide what I can handle.

14) Forever isn’t tomorrow: Sometimes, it’s okay to live in the moment, and make decisions for the next week or next month or next semester, without worrying about where we’ll end up. This is a forever disease, but we don’t have to make decisions for forever today.

15) A bumpier ride makes for a better story: Life is not going to be easy as pie living with IBD. Every year will be something different, but if we hold on and stick together, we’ll emerge one way or another.