transitioning of care

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enlightme

New member
Hi. I am wondering what peoples biggest issue is with transitioning of care from a pediatric setting to an adult setting?
This could also involve just transitioning of care to a different provider also. Adult to adult?
How do you think things could be improved?
If someone does answer this, could you tell me how long you have been living with CF?

The reason I am asking these questions is because I am in a nursing class and am writing a paper on CF. We have to discuss a pertinent issue of CF and I picked transitioning of care.

Thanks you!
 
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Aboveallislove

Super Moderator
While anecodotal evidence is interesting, I'd suggest you find and rely on actual research studies of the issue. If you go to pubmed.com and search for cystic fibrosis transition adult you'll find 100 plus articles including some exactly on your topic. You can ask you college Liberian to help you access the full articles on line, in periodicals, or inter library loan. FYI I'm a college professor and mom of Cfer.
 
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BikerEd

Guest
I’m 42 DX at 7 weeks. When I transitioned I was I was 28 myinitial apprehension was changing from a Doctor that had cared for me since Iwas 10. However she was retiring and the “new” Doc was an Asshole that feltthat my emotional attachment to a clinic and hospital was unnecessary (BasicallyI told to leave and not come back). Being a Military Brat I had the opportunityto see what hospitals were like in other areas, most at the time new littleabout CF so my family made Boston our “Home Base” hospital. When I did transitionI not only transitioned to an Adult clinic but also to another state. Over allthe process was pretty easy. The hard part was me getting to know them, andthey I. There was a period of about 18 months where my Doc and I did not seeeye to eye on much, over a period of time gaining each other perspective andrespect and getting past the “you don’t know me” He got to know me and myQuirks. He also began to realize (or at least it seemed that way to me) thatyou can’t put each CF kid in a square peg. Prime example I work in theconstruction industry his first advice to me was to find a new career. I toldhim no (perhaps in not such kind words). After about a year he finally said tome that he thought that what I do was actually helping my CF. He got to understandthat my career was as much a part of me as my CF, and possibly more. There wasa period where my health took a nose dive and the possibility of me having tomedically retire was becoming a reality. I was devastated, my wife told melater that was the first time she had ever seen fear in my face. He came upwith a game plan because “not working would be mentally more devastating to myillness, than that actual work that I do”. With some hard work and perfect timingof Kayldeco I was back to work 65 days later.
Why did I tell this boring story, because for me thathardest part of the transition was the getting to know each other. It’s notlike when a “normal person” (for lack of a better term) that see their doctortwice a year. The Medical staff is essentially an extension of your family.They have a vested interest in your well being. So, when you go from one familyto Bang, here’s your new family that you don’t know and they don’t know you isdifficult. But as in any new relationship in life you take time to get to knoweach other.

Best of Luck with School

Ed
 
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Liza

New member
I'm sorry, but this just makes me angry. I have no problem with you asking questions, doing a paper etc. But honestly, a little bit of research before asking for help. What has got my panties in a wad?

This, "If someone does answer this, could you tell me how long you have been living with CF?"

I'll give you the benefit that perhaps it was improper wording on your part, proofread before posting, if that's the case but really? How long have you been living with CF? Ummmm, all their lives, a person is born with CF. Wondering their age, ask the age or when were they diagnosed. There are so many people that ask for help on writing a paper but sometimes it seems like no one wants to do their own research to get the facts first.

That being said, Ed has it down pat. Getting to know a new team and leaving the comfort of a team that KNOWS you. In all aspects, personal as well as medical. That is important too, a connection beyond the "normal" doctor patient relationship.

I believe transitioning needs to be a slow, years long process, perhaps starting about age 16. If appointments involve both the peds doc and the adult doc, then they get a chance to know each other. Same goes for the respiratory techs. So by the time the patient is 18 and having to switch, it will be easier. Now, the next issue would be hospitalizations. Switching from a peds floor where all the nurses know how to take care of CF patients and getting stuck on an adult floor where many nurses just don't know the ins and outs of taking care of a CF patient. That gets extremely frustrating. They need to know how to access a port, that the CF patient doesn't just get enzymes at breakfast, lunch and dinner and how to advocate for their CF patient when dealing with adult resident who can be a royal pain in the arse!

 
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juliefaler

New member
Probably the biggest issue when transitioning for my daughter is the history and trust that develops with your medical team. They become family. They know you, they know what you will do and what you will not do. The medical professionals had known my daughter since she was a baby and saw her grow up. When she turned 18 they were just starting to transit the peds to the adult settings. (Before that adults were seen by the peds drs) When she went off to college and later moved away, a new CF team had to be found and history and trust had to be built again. When the team has that history and trust there is a lot that can be done on the phone/email instead of having to come in for every little thing. A CF patient's history is very complex and it is frustrating to start over and build the history and trust again with the medical team.

You are born with CF. That being said, doesn't mean that one is diagnosis at birth. As more genetic mutations are being discovered more people are being diagnosis with CF at a later age. They don't begin their life with the heavy burdens of daily treatments as the ones who are diagnosis at birth or at early age do.

Thanks for doing your paper on CF.
 
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David001

New member
I agree with Aboveallislove that the first place to start is with a solid pubmed search. I also agree with Liza that transition needs to be a long process. It should begin in childhood, with children increasingly assuming more responsibility for managing their meds and treatments as developmentally appropriate, gradually and increasingly talking to doctors etc independently, and finally transitioning to adult care. I agree with juliefaler that giving up the trust and relationship you have had with one set of doctors (and often one hospital) and developing familiarity and trust with another set of doctors and perhaps a new hospital can be really difficult. For my daughter, it actually meant finding a new hospital and providers for when she was away in college (and again in grad school) while also transitioning from peds to adult care at her "home" center. Coordination of care between centers was difficult at times, especially because different docs and different centers have different treatment philosophies and protocols.
 
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BikerEd

Guest
At pubmed.com of the 113 studies that included the words "cystic fibrosis adult transition" zero had any scientific information on transitioning from a Peds clinic to an adult clinic. On google I found several guides but zero scientific information.

That being said I guess leaves to OP with no choice but gather information from the personal experiences of the patients that went through it.
 
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BikerEd

Guest
Aboveall, as I typically enjoy what you post, perhaps your not getting my point. Page 62 of the 2010 report revised 2013 of the collection of "surveys" 92 surveys from CHOP if I recall.

Although some research has been conducted with respect to the perceptions of patients, families, and providers, little is known about the best method for transitioning CF patients
 
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Aboveallislove

Super Moderator
Hey Ed sorry If I missed the point. I haven't looked at all 100 plus abstracts but the first page has helpful info. Even if there is no best practice the perceptions are based on studies which for a paper would be much more informative than anecdotal evidence...in other words professionals have already asked many more specific questions and results are avsilable on that...sounds like we aren't disagreeing just saying different things,
 
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BikerEd

Guest
No sweat Allabove. The problem with written words is they read as a person reads them, not the intent or inflection a person thinks them. The little info I know about the OP she's a BSN and may have to conduct her own research on on the subject for further education, or perhaps a nurse in an adult clinic. I responded with "my" personal experience in the situation. Which I thought she was looking for.

Best

Ed
 
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Aboveallislove

Super Moderator
Hey Ed, absolutely. That was what she was looking for and very kind of you and others to help. I was just adding my unsolicited advise because I couldn't help with her specific question (since DS is 4), but from experience knew that many students do not understand the importance of researching the scientific/social science literature and including that in papers.
 
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windex125

Guest
Liza hi have a question I just had a 10 day hospital stay for Accute Pancreatitis I was so extremely upset I've been PS all my life and at 59 I did not want to deal with yet another issue but you mentioned creon is not only for before meals well that is how I was instructed to use it can you give some info on why it wld be used more often?
 
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