First of all, transitioning care is appropriate. The psycho-social aspect of transitioning care reflects the truth that people with CF age and require medical care appropriate for their age. It also sends out the hopeful message that people with CF do age. Keeping adults in a pediatric center sends out the subliminal message that this illness is terminal not chronic and adulthood might not be achieved.
For social workers, it means preparing adolescents for their emerging sexuality. Telling men about options to combat sterility, telling women about pregnancy and CF. It means career counseling and helping with college applications and the achievement of an independent lifestyle. Questions arise about the parental separation/individualization issues when a young adult remained in a pediatric facility. Now there is the opportunity for appropriate individualization of an adolescent and young adult.
Adult facilities have genetic counselors which can focus even more so on reproductive options and the methods available, as well as explain the ofttimes esoteric meaning of CFTR mutations.
For doctors and nurses it means a more comprehensive look at the adult patient. People with CF develop other health-related issues which may be overlooked in a pediatric setting. For some these may be negatives like drug dependency and alcoholism. Some adults with CF have AIDS and cancers. Being able to get all your treatment at one facility greatly enhances well being. Also we are discovering some manifestations of CF that appear more regularly as we age. Diabetes may become a concern and the adult diabetic with CF is different than the child or person without CF in terms of dietary needs. Gastrointestinal cancers may be more prevalent at a certain age in young adults with CF and need to watched for carefully.
Also doctors and nurses may be asked to provide for more home care as opposed to in-hospital “tune-ups” as lifestyles with career and family obligations occur. This requires a solid out patient resource.
Issues such as career discrimination, problems with medical insurance, and other related issues may arise to plague the adult patient. Finally, and not the least, it is good to not have to worry prior to a hospitalization that your room mate may be seven years old and more inclined to watch Barney than World News Tonight.
A first-person account:
“Ummm, a few things that I remember about changing to an adult hospital – At the kids I was a VIP, and got the private rooms sometimes because of being 15. And knew the perks like TV etc. There was even an adolescent activity room.
But going to the adults I lost all that. I hated sharing a room with smelly mumbling old farts who sometimes died or exterminated the toilet (We’ll get the blighted jerry yet, what ho! Bombs away!) There was no special treatment at all, which was a shock for a while. The atmosphere was totally different, very clinical, adult. I must admit the nurses were good once you got to know them, and didn’t treat you like a kid as much. In general I preferred it heaps.
Well, this isn’t much help is it? I was lucky, I got a good ward. The few times I was on other wards sucked. I think I would have to say I prefer being treated like an adult.
I once went back to the kids, for my sister, and couldn’t believe that I’d liked it there.”
Another first-person account:
“I’ve found that pediatric hospitals, nurses and Drs., just by their nature give pediatric doses of meds, which is one reason why I switched to an adult facility. When I do IVs at home, the nursing agency is Children’s though and they go ballistic when they see some of the doses for pain meds etc. This just reassures me that seeing an adult doctor is the right thing for me to do. A while ago a friend of mine was in for a clean-out, and having pain, Childrens’ gave her 10 mgs. of Demoral every 12 hrs.!! I almost laughed. I get 75 every 4 hrs., for P&PD when I go in (I’ve had 3 rib fractures)”