Oh NO! I'm A Statistic!!!
I postulate several reasons as to why many do not successfully transfer to adult rheumatologist from expereince and observation. Of course, the research would have to be done to confirm.
1- Loss of insurance that covered the child now that s/he is an adult and can't get it due to preexisting conditions, costs, etc.
2- Dealing with the grief of realizing that you have to deal with JRA/JA for an undeterminate amount of time when for years your health care team told you that you would outgrow it
3- The lack of competent Adult Rheumatologist that understand pediatric rheumatic diseases as they are DIFFERENT.. just because you're an adult, doesn't mean the disease has suddenly become the adult form. Yes, I've heard many young adults with JA say they now have adult form arthritis according to their adult rheumatologist because they aren't a child anylonger!!! That's SOO untrue! Speaking of lack of competent Rheumatologist.... there is a severe shortage of Rheumatologist period so add that to the competence factor and we're really in trouble...
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Title:High Rates of Unsuccessful Transfer To Adult Care Among Young Adults
With Juvenile Idiopathic Arthritis
Category:11. Pediatric rheumatology clinical and therapeutic disease
Author(s):Elizabeth M. Hazel, Xun Zhang, Ciaran M. Duffy, Sarah Campillo.
McGill University, Montreal, QC, Canada
Purpose: The objectives of this study were to describe the proportion of
patients with juvenile idiopathic arthritis (JIA) who had experienced an
unsuccessful transfer from a pediatric rheumatology team to an adult
rheumatologist and to compare the characteristics of those who achieved
successful transfer to those who failed to continue appropriate follow-up
for their JIA.
Methods: We conducted a systematic chart review of all patients with JIA who
attended their final Montreal Children's Hospital JIA clinic appointment
between 1992 and 2005. We then tracked the follow-up which these patients
received in the adult milieu for the two years after transfer. Any patient
who failed to make initial contact with the adult rheumatologist identified
in the pediatric chart transfer plan, or was lost to follow-up (no
rheumatologist contact for greater than one year) was deemed an unsuccessful
transfer.
Patients who were discharged from the pediatric service or lost to follow-up
before the age of 18 and those in whom follow-up care was not deemed
necessary were excluded from the analysis.
In order to explore factors that may be associated with unsuccessful
transfer, we then conducted a case-control study comparing patients with
successful and unsuccessful transfers of care.
We examined variables pertaining to disease characteristics (sex, JIA type,
age at onset), disease severity (use of DMARDs, joint count at last visit)
and psychosocial factors (educational attainment) which were documented in
the pediatric charts. We then performed univariate analyses to determine if
any single factor was associated with the outcome of unsuccessful transfer
of care.
Results: Of the 100 adult charts reviewed, 52 patients fit our criteria for
unsuccessful transfer (17 made no initial contact with the appointed adult
rheumatologist and 35 were lost to follow-up at two years after transfer).
None of the variables tested were predictive of unsuccessful transfer.
However, boys trended toward higher risk for unsuccessful transfer.
Conclusions: JIA was once thought of as a disease of childhood that "burnt
out" by adulthood. Numerous studies have now confirmed that the majority of
young people diagnosed with JIA will continue to have active disease into
adulthood.
The high rate of unsuccessful transfer reported by this study is
disheartening. We were not able to pinpoint any variable that would help
identify the greater than 50% of pediatric patients at risk of becoming lost
to follow up after transfer. In order to ensure a smooth transition from the
pediatric to adult health care teams there may need to be a more
co-ordinated and longer term effort by both health care teams.
Disclosures: E.M. Hazel, None; X. Zhang, None; C.M. Duffy, None; S.
Campillo, None.