One of the aims of transition of care is:
"to promote skills in communication, decision-making, assertiveness, selfcare, and self-advocacy" [6
To this end, we assessed the knowledge level of adolescents with juvenile myositis. All children know their doctor's names and most (78%) know where to obtain that doctor's phone number (Table ). Fewer adolescent children (62%) know how to refill medications even though most knew what the names of the medications were (78%). Only 20% made his or her own appointments to see the health care provider.
Some of the key elements for successful transition of care are:
1) Identification of a key person for each individual patient, 2) A transition policy, 3) A flexible policy on timing of events with anticipation of change, 4) A written health care transition plan, 5) The fostering of personal and medical independence and creative problem solving, 6) Liaison personnel in pediatric and adult teams[6
In this regard, we assessed the transition-related knowledge and support experienced by families. Thirty-eight percent of families reported having discussed transitioning to an adult care provider with their pediatric care provider and 69% of older children could identify the name of their health insurance (Table ). However, only 22% of families reported access to a transition healthcare professional, 9% of families were aware of a posted policy for transition in the pediatrician's office, and 7% of families had a written plan for moving to adult healthcare. With regard to self-advocacy skills we found that 47% of parents of older patients have a portable and up to date copy of their child's medical records (Table ); and this was not statistically different when stratified on younger vs. older age (Table ) suggesting that self advocacy does not "mature" with age of the patient. Indeed, it is possible that this finding more likely reflects self-advocacy of the parent rather than the child.
Data collected on 207 patients aged younger than 15.1 years enabled us to augment our understanding of the transition-related knowledge and support as experienced by families in general (Table ). Here we learned that 37% of families have a portable, up to date medical record for their younger child, 6% have been exposed to a pediatric practice with a posted policy concerning transition of care, and only 1.4% actually have a written plan for moving to adult care again suggesting that support for transitioning in general is lacking in pediatric practices.
Finally, with regard to vocational readiness [7
], we found that 56% of adolescents have a paying or volunteer job outside of the home and 82% of adolescents are responsible for household chores on a regular basis (Table ).
The transition from pediatric to adult care is a vulnerable time for patients with chronic disease [8
]. Not only is it a financially insecure time but preliminary data suggests that adherence to prescribed treatment regimens may decrease after this transition [9
]. In this regard, it is important to note that there exists significant variability in transition support afforded to young adults with chronic medical conditions [10
]. For example, only one third of adolescent hemodialysis centers have in place a transition program to aid youth in the acclimation process to adult care [11
]. Similarly, our data demonstrates that low percentages of families of patients with juvenile myositis have had their transition needs proactively addressed. Less than half of our study subjects were in possession of a portable up to date written medical record and few were either aware of a posted policy for transition of care or able to identify a health care worker responsible for aiding in such a transition. In particular, few patients had a written plan for moving to adult care. This is in keeping with the general, but sparse, academic literature in this regard [12
]. For example, in a recent survey, 13% of pediatric practices reported having written policies on the transition and transfer of adolescents to adult care [13
We caution that our data bears the same weaknesses of all anonymous survey research. This includes inability to control for ambiguities inherent in the language used for the survey (such as choosing to use the word 'could' vs. 'should'), as well as deficiencies owing to self-reported data, small sample size, and the inability to verify that the population studied is representative of the greater population of children with myositis. However, in order to validate the self-reported nature of the study subject diagnosis, we concurrently collected data on the clinical manifestations of disease as well as selected aspects of severity of disease. In this way we were able to confirm that the majority of participants had at one point or other manifested generally accepted clinical features of myositis and that some, indeed, represented more severe disease.
Transition readiness may be a source of anxiety for families [14
]. Our data confirms this perspective in a unique manner because we find that based upon cross-sectional data, there may be a shift in parents' attitudes as their children mature. Longitudinal data will be needed to confirm that parents scale back their assessment of their children's maturity to be able to see the physician alone as time passes. In this regard, we note that data from other health care scenarios suggests that in addition to encouraging pediatric health care providers to anticipate such anxiety, many of the functions of a home social worker could alleviate some of these worries [15
]. Viewing transitioning as an achievable competency for youth with chronic disease, (and seeing the pediatrician as instrumental in its attainment), may be a helpful perspective in this regard [16