A number of studies have described various transition processes and explored the transition needs of adolescents with a chronic illness and their families. Most descriptions are confined to specific health conditions within a subspeciality clinic such as our own . There are a number of position statements and guidelines to aid health care providers in delivering the best care to this patient population [6, 8]. We drew upon these resources as well as information obtained from our previous work when we developed our transition clinic . There has been much less research evaluating transition clinics, making the current study an important contribution to the literature.
The majority of respondents in our study were Caucasian females with JIA, which is consistent with the makeup of the clinic population. Of the 90 % responding to questions about education, all had completed high school and 65 % were enrolled in or had completed post-secondary education. Canadian census data from 2006 indicate that 79.5 % of males and 83 % of females in Nova Scotia attain at least a high-school education . Considering the age range of our subjects, our findings are consistent with previous studies suggesting that young adults with JIA fare at least as well as the general population in terms of educational outcomes . A number of subjects demonstrated poorer health-related quality of life when compared with population norms, and half had some degree of disability as demonstrated by the HAQ. The functional outcome of our patient population is comparable with findings reported in a recent review of adult outcomes of patients with JIA, where approximately 40 % of young adults are somewhat limited in their functional capacity and 10 % are in need of assistance to manage daily routines .
Most respondents in our study reported overall satisfaction with the transition clinic, with a mean of 7.3 on the VAS. It appears, however, that some individual items are better addressed than others, and in general there is room for improvement, as all items received a proportion of poor ratings (<5 on the VAS). Items related directly to their disease, such as learning about side effects of medications and confidence in disease management, were reported to have been more completely addressed. There are a number of potential reasons for higher satisfaction in these domains. Many patients were diagnosed as young children and would have had many years to become familiar with their disease and treatments prior to the transition period. Secondly, our previous research indicated that one of the most important factors for adolescents in determining readiness for transfer was confidence in managing their disease. This would therefore likely have been a major focus of the health care providers in the clinic. Our findings are similar to those of McDonagh et al. in which adolescents and young adults felt that assuming primary responsibility in managing their health-care was an essential part of transition . In addition, it is likely that our practice of seeing patients independently of their parents contributed positively to overall confidence in self-management. The highest scoring item was satisfaction with disease-control at transfer, suggesting that our practice of delaying transfer of patients if there is evidence of uncontrolled disease should be continued whenever possible.
Items in which a third of respondents provided a poor rating of the item being adequately addressed (<5 on the VAS) included disease non-specific items: addressing smoking, alcohol, drugs and sexual health. These poorer scores may be due to lack of discussion around these topics or that these items were addressed in a manner that was not optimal for the patient, or a combination of both. It is important to note that many respondents also rated the same items in the higher range (>7 on the VAS). There are different views regarding the perceived importance and desire to discuss items such as these depending on who is asked. In our previous survey of patients of a similar age, we found that only a third felt that it was important to discuss these issues; similar findings were reported in a study of adolescents with cystic fibrosis [14, 23] Perhaps not surprisingly, however, most parents surveyed in our previous study felt there was a need for education around these topics. The Society for Adolescent Medicine’s position paper on transition states the importance of addressing topics such as sexuality and substance use in transitional health programs . Similarly, as health care providers, we feel that discussion around these issues is critical given the potential toxicities of medications in youth who have a high likelihood of using alcohol and are likely to be sexually active. Developing methods that will effectively address these issues during the transition process is an important area and deserves further appraisal and study.
Another poorly rated item was learning about new developments in their condition, with a mean score of 4.9/10. Our previous work demonstrated this to be the highest perceived educational need of adolescents, highlighting a deficit in our care and the importance of improved knowledge translation initiatives. This need and how best to address it deserves further exploration.
In our clinic, 88 % percent of patients were transferred between 17 and 20 years of age, and most felt this was appropriate. A small number of individuals, all 17–20 years of age, felt they were either too young or too old at transfer. Our approach, which allows individualizing the time of transfer, appears satisfactory to most patients. From a health systems point of view this is noteworthy as it relies on an institution’s policy to allow patients to be followed beyond age 16 if they have a chronic illness. Most respondents felt that they had attended the appropriate number of clinics; in most cases this was between two to four. Our present model is constrained by the number of times the adult rheumatologist is able to attend a combined clinic at the pediatric hospital. Seven of the 9 respondents who reported attending too few transition clinics had attended only one. There may be a role for involving patients in the decision-making process regarding the number of transition clinics to be attended prior to transfer in the future.
An alternative model of transition is to have a young adult clinic that is a stepping-stone between pediatric and adult care. A number of centres in Canada have developed clinics for Young Adults with Rheumatic Diseases (YARD clinics) in which young adults are seen in a clinic specifically for youth aged 18 to 25 . Further work to evaluate the effectiveness of different models of transition-related care will be important in order to inform clinicians and administrators regarding the best and most cost-efficient care-model for this population.
Approximately 25 % of respondents in our study reported no regular follow-up by an adult rheumatologist, comparable to the study by Hersh et al. in which 30 % of subjects missed their first scheduled adult rheumatology appointment and the rate of missed appointments in the post-transfer period was 21 % . It is important to note that all of the respondents reporting no follow-up in our study were those transferred to other rheumatologists (i.e. not the adult rheumatologist involved in the transition clinic), whereas almost all patients followed up by the adult rheumatologist in the transition clinic attended all or most of their appointments, as confirmed by chart audit. This suggests that continuity of care may be an important factor in achieving improved adherence to follow-up after transfer.
This study has a number of limitations. The response rate from our study was only 34 %, leading to limited statistical power and potentially leading to selection bias. Secondly, our primary outcomes were satisfaction and rating of the completeness of care. Satisfaction and completeness of care are complex constructs; we were not aware of a validated measure of satisfaction that would apply to our study population, therefore we chose to use a 10 cm VAS to measure these outcomes. While this provides us with useful information regarding perceived gaps in care, there are likely limitations to this method of measurement and importantly our study does not address whether these outcomes correlate with other outcomes such as knowledge acquisition, self-management behaviours or disease outcomes. It also does not provide information regarding how items could be better addressed. Finally, our questionnaire did not address perceptions regarding completeness of addressing psychosocial and mental health concerns in the transition clinic, an area which we feel needs future study.