Wednesday, December 12, 2012

Webinar: Providing Best Care for Individuals with Cystic Fibrosis

Today I had the pleasure of "attending" a webinar as part of the American Thoracic Society's Cycstic Fibrosis Week 2012, a joint product of the ATS and the Cystic Fibrosis Foundation. The topic of today's discussion was "Providing Best Care for Individuals with Cystic Fibrosis: A Partnership with Patients and Families." It featured an informative lecture by Dr. Michael Boyle of the CF Center at Johns Hopkins University and a Q&A period featuring some great contributions by CF patients, parents, and care partners. Special kudos for this event go to a woman I am proud to call a friend and fellow CF patient, JD, and Emory grad -- as well a phenomenal patient advocate and manager of the CF Legal Hotline -- Beth Sufian.

I encourage all of you to check out the taped version of the webinar yourself, which I'm told will be available at the ATS cystic fibrosis week website (link provided above). I also encourage you to get involved in CFF-related educational programs and webinars in the future, which are often provided through the CFF and through programs like the CFRI's CF Discovery Series. For now, though, here are some of my main takeaway points from this discussion. I should emphasize from the outset that these are MY observations and have not been discussed with Dr. Boyle, the CFF, or the ATS. Nothing below is meant to serve as anything other than my personal understandings and opinions.

Got it? Awesome. 

Takeaway #1: Yes, Compliance, Care, and Medication DO Matter!

Dr. Boyle spoke about a study on CF homozygous twins (meaning identical twins with the exact same genetic makeup) that showed a strong correlation betweens genetics and lung function in CF patients. But he also spoke about a surprising curve ball with this study, which was that identical twins with CF showed a far more significant disparity in lung function AFTER they separated and moved into separate homes. This indicates that non-genetic factors like compliance, care (wether self-care or care-center driven treatments), environment, and medications DO actually matter in determining outcomes for people with CF. And yeah, I know what you're thinking, which is probably a great big "duh, Piper, my mom told me that when I was, like, 5 years old!" kind of moment, but really: knowing and seeing actual evidence that the choices we make in life and in health make a difference to our overall well being even beyond the genetic card we happen to be dealt is always worth repeating.

Bottom line: when it comes to our bodies we are neither fully in the driver's seat nor fully passive, and the decisions we make are always going to have an impact. Most importantly, we can choose to be honest (yeah, really honest) with ourselves, our care partners, and our healthcare teams in addressing these issues.

Takeaway #2: Good Care Centers Are Active Care Centers

Dr. Boyle spoke about a care-center study that involved observation of CF care centers recognized for having some of the best therapeutic outcomes across the country. The results of this study were too numerous to really discuss each one in full here on the blog, but for me a couple of big findings were that 1) good care centers take time before the patient arrives to discuss each case and come to an agreement on what issues need to be addressed during the relatively short patient visit (optimized patient care) and 2) Dr. Boyle's statement that good care centers are empathetic, compassionate, and caring without necessarily being too nice. What he meant by this, apparently, is that good care centers are compassionate in their care but refuse to be "nice" when it comes to aggressively treating infections or drops in PFTs, nutritional issues, or the need for patients to be proactive about their own healthcare. Wow, what a cool distinction. 

What WE, as patients and families, can do in this issue is be involved (joining or forming a patient/parent advisory board at your clinic, for example, is a great first step), talk to our doctors about these sorts of findings and about ways to improve our personalized care, and basically lead by example. If we want our doctors to maximize the value of our time in the office, for instance, we can have our own "pre-visit meeting" with our families, our partners, or even just ourselves and a journal and consider questions we need answered, prescriptions we need filled, issues we need addressed, and concerns we want acknowledged. This is a great way to ensure we actually get what we pay for in terms of clinic visits, and bonus points if you can really impress your doc and make him/her take notice of your extra effort!

(Dr. Boyle also spoke at length about the fact that good care providers TALK TO PATIENTS. Duh moment number 2, I know. But what I took away from this is that your docs should be discussing your test results, x-rays, cultures, CT scans, etc WITH you, not just making decisions based on undisclosed results. If they don't do this, ASK. It's your body, for goodness sake, and you deserve to know what's inside of it as much as they do!)

Take Away #3: Transition is Tough, but Not Transitioning is Even Tougher

My personal favorite moment of the webinar came when Dr. Boyle showed a joke slide of two parents pushing a full-grown man in a stroller and joked that he thought maybe this family was on their way to CF clinic. Haha, right? But seriously, guys: HALF OF THE CF POPULATION IN 2012 ARE CF ADULTS. You, or your child, are/is going to GROW UP. It's up to families and patients alike to transition this care in a workable and meaningful way, and preferably BEFORE the patient his 18, 19, 20, or whatever and leaves the family compound.

The simple truth is that YES, you/your CFer can typically go to college, and YES, you/your CFer can typically live alone, and YES, you/your CFer had BETTER get used to talking directly to doctors about your/his/her body early, because that stuff matters. Dr. Boyle suggested that the most successful transitions start early (he noted that "transition begins at birth") but obviously parents and patients need to recognize their individuality in crafting specific timelines. Suffice it to say that if -- barring special circumstances, of course -- no 18-year-old CFer should be unable to list his/her medications, speak to a doctor, understand this disease, or prepare his/her own neb treatment. You wouldn't wait until someone was 16, hand her a driver's license, and expect her to be able to navigate a freeway -- and nor would you want her dependent on rides for the rest of her life -- so why would you do any less training with something as important as healthcare??

We're not in Never-Never Land anymore.

Finally, I just have to mention Dr. Boyle's awesome point that the goal is not perfection: the goal is LIFE.  This echoes my personal best practices advice for anyone dealing with this little monster: don't beat yourself up for little mistakes or bumps along the road, and also never, EVER doubt have the power inside of you to make this work. You just do. Sorry, cystic fibrosis -- you'll never be as strong as we are.

So what do you guys think? Because no matter how many webinars or webcasts or whatever we attend (or don't) the real takeaway message here is that we've got to join the conversation. Our bodies, our disease, our little monster. Have at it, guys.

Thanks to Beth, the ATS, Dr. Boyle, the CFF who made this webinar a truly great educational experience.

1 comment:

  1. Piper~ I went to the link but could not find the webinar. Is it up yet? Will you let us know if it is somewhere different?

    I like your use of Never Never Land. Being an Old Fogey cystic at 47 it is difficult for me when I feel like things are dumbed down for CF patients. I see an adult doctor but for years I had a pediatric guy. Nice man but there's something uncomfortable about having nurses wearing teddy bear scrubs. LOL! However I think it might be the medical profession in general. Even at my adult hospital I notice patients are treated like kiddos sometimes. It's not easy being a mature adult when you feel like poo and are wearing a backless hospital gown with no undies! How our docs see us and treat us is important though.

    I have always written down questions for my doc. I keep a notebook in my desk at the office and another one at home. I confess that sometimes I ask too much. My doc hates it when I come in with 2 pages in 6 weeks.Its all about being informed. At least I have no problem talking to doctors1 LOL!

    Keep writing, sister!