Adolescents make up more than 25% of the population of Gulf Cooperation Council (GCC) countries, a percentage that is far higher than that in other high-income countries, yet their health status and health care needs are not given proportional attention in the region (26). While there is progress in the health systems in GCC, a gap exists between the training, knowledge and skill-set of existing health-care providers and the needs of the adolescents for whom they provide care (27). Many health care providers in the region have limited or no training in adolescent health care. Therefore, adolescents tend to be “transferred” rather than “transitioned” to the adult care system at a very young age without the necessary health care transition process. This poses a challenge on the outcome of adolescents with chronic disease.
There are major differences in the pediatric and adult health care models that need to be understood to manage the expectations of both patients and healthcare providers for the transitional process to be successful. Pediatric care tends to be a family-centered approach, whereas adult care tends to be patient centered. Similarly, pediatric care is developmentally focused and adapts to the growing needs of children and adolescents, whereas adult care tends to be more disease focused. Moreover, pediatric team approach tends to be multidisciplinary, whereas adult care is reliant on referrals to other services. In addition, the clinical settings are perceived as nurturing, and they focus on psychosocial support for adolescents and their families, whereas adult services offer a more cognitive and information-based approach to care (28–29). These differences in approaches to care require adjustment and skills in self-care and advocacy that adolescents must develop to transition successfully from the pediatric health care system to the adult health care system. However, since the “transfer of care” in Oman, like many other GCC countries, occurs at an early age, this adjustment process does not develop for both AYA as well as healthcare providers.
The American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians (ACP), developed transitional care policy/guidelines which describe 6 core elements of transition process and suggested an age range for each of those 6 elements to occur (30). It consists of the following steps 1) discussing the transition guidelines (12-14 years), 2) transition tracking and monitoring (14-18 years), 3) transition readiness assessment with validated tools (14-18 years), 4) transition planning (14-18 years), 5) transfer of care (18-21 years), and finally tracking 6) transfer completion (18-23 years). In our cohort AYA patients, who are followed at the two main pediatric and adult rheumatology centers in Oman, who have had no formal transitional services, the transfer event occurs at the age of 13 years, which is the suggested age to begin the discussion of transitional policy and process in most western countries rather than the actual transfer that occurs in this region of the world.
The overall mean transitional score for our cohort was 5.22 (SD 1.68) which is overall lower than other studies using UNC TRxANSITION Scale transitional tool assessment (22–25). In our cohort, the mean transitional score at the current ‘transfer’ age is 4.07 (± 1.27) which is considered to be a low score, only one of the patients in this age group had a high transitional score. This patient had a disease onset at 3 years with disease duration over 10 years at the time of transfer, in addition to both parents having a high educational level, which might have contributed to the favorable results. However, there is a gradual trend in increase in the mean transitional score to 6.12 (± 1.81) in the older age group. Despite the increasing trend of transitional scores, only 30.8% of patients in the older group were considered to have a high transitional score. Of the 10 subdomains in UNC TRxANSITION scale with lowest score included the domains of Insurance and Issue of Reproduction. Given that healthcare service is free to all Oman citizens within government institutions, the relevance of insurance is applicable to Omani citizens seeking services in private hospitals. Some companies offer insurance to employees while others extend the insurance to cover family members. This might have caused confusion in the insurance domain as AYA were not aware of this issue. With regards to the Issues of Reproduction, this was only addressed to females over 19 year of age and were culturally adapted.
Overall, our results reflect that our AYA patients with chronic rheumatic diseases are not adequately prepared for the ‘transfer’ to adult care at the current cut-off age of 13 years. It emphasizes the need to initiate transitional services within the country, which should commence by increasing the transfer age to 18-21 years as evidenced by the results of our study and keeping in par with international recommendations (30, 31). Similarly, the relatively lower percentage of patients in the older group with a high transitional score, suggest that further educational measures at an earlier age are needed to improve the transitional process. Greater emphasis in education should be in domains with the lowest mean transitional scores. The implementation of transitional care into practice in Oman needs to be evidence based and identifies effective measures of transitional care and quality indicators to measure success.
The lack of transition care services is a global challenge and not limited to this region of the world. In a recent survey that focuses on current practices in transitional care among 115 pediatric rheumatology centers in 22 European Union countries, 23% responded that their centers did not offer transition services, however, the majority agreed that a formal process in transitioning patients to adult care is necessary (32). Similarly, a recent survey in North America among pediatric and adult rheumatologists was conducted among Childhood Arthritis and Rheumatology Research Alliance (CARRA) members. Of the 217/398 members responded, 63% did not consistently address healthcare transition with patients, only 17% had a transition policy and only 31% used a transitional tool, while a dedicated transition clinic was available in 23% of centers. In contrast to our study, the most common age to begin transition planning was 15-17 (49%), and most providers transferred patients at age 21 or older (75%) (33).
This study is not without any limitations. The cross-sectional design provides a one-time assessment. Similarly, we conducted the study on an exclusive sample of patients diagnosed with chronic rheumatological conditions. Ideally, a longitudinal study on a wide spectrum of patients would have been more appropriate. Additionally, we were not able to analyze demographic factors such as gender differences, household income or literacy level in transitional readiness accurately due to limited sample size. Previous studies have demonstrated that females tend to demonstrate higher transition readiness as they tend to mature earlier (21). Other studies demonstrated positive associations for transition readiness in higher median household income (25), while parent education and household size has not shown to have significant association with transition readiness (24). Similarly, On the other hand, some of the advantages of this study is the use of a provider administered questionnaire, as opposed to a self-administered questionnaire. Hence, it does not solely rely on patient self-report, instead the validity of the patient’s responses can be assessed by the health provider either during the interview and/or by examining specific information contained in a patient’s medical chart. Also, the assessment tool uses a feedback approach to help guide health-care providers to praise the adolescent on knowledge/skills they have already mastered, help them improve on tasks they perform adequately, and help them focus on the areas where they have the lowest competencies (16).