Next year he’ll get his L-plates. The year after he’ll sit his VCEs. The following year will be transition time. Can I get that with a script for valium, please?
As my eldest son careens toward the supposed age of reason and legality—and his transition to adult CF care—the stories surrounding that mythical world swamp me. These may be just urban myth, but they pass quickly through the worried chatter of about-to-lose-control parents.
‘I wasn’t allowed into the appointment with my son!’
‘They said I couldn’t get copies of her lab results—even with her permission.’
And, spoken by an experienced clinician, ‘Adult care is totally different from paediatric.’
True or false, these statements highlight the anxiety about the transition from paediatric to adult care in CF. For the first fifty years cystic fibrosis was almost exclusively a paediatric specialty as so few patients survived to adulthood. Thankfully, the new reality means that the majority of patients should spend more years in adult care than they did in paediatric. But as life expectancy increases, so will the number of ‘adult health issues’, including fertility, bone health and age-related non-CF problems. Adult centres are trained in and prepared to deal with these and other adult issues.
So, if specialised centres are the best place for adults with CF, why are we all still so anxious about leaving paediatric care?
According to one study looking at transition, the two single biggest areas of concern for the teen patients were exposure to new bugs and the difficulty of leaving their previous caregivers. Not too surprising was the finding that families (read: mums) were instead most concerned about their child’s ability to care for their health independently; a worry apparently NOT shared by their child. Researchers found that allowing the patient and family to meet the adult CF team prior to transfer of care was enormously helpful for relieving stress and worries. The presence of a transition protocol and education program, addressing issues from cross-infection to care plans, relieved the fear of patients and families alike.
So, what do the experts say that we can do to make transition easier?
- Start talking about—and preparing for—transition early. One way is to allow your child to meet alone with their doctor once they hit adolescence. For a few years I tried to just sit in the corner of the room with my mouth taped shut, but inevitably my son would turn to me and say ‘What medicines am I taking, Mum?’ When I’m not in the room he has to learn the names himself.
- Ask your CF team to develop a specific transition program, if one doesn’t already exist. Don’t feel bad asking because what’s good for your teen will be good for others.
- Organise for both you and your son or daughter to meet the adult team well before it’s time to transfer care.
- Remember that ultimately the decision about adult care rests with your teen and you. If you’re not comfortable about the decisions process, talk with your CF team.