About transitions
What is transitional medicine?
With advances in medical care and the spread of care, many children with chronic symptoms, including congenital and childhood-onset illnesses, are entering adolescence and adulthood. Currently, the number of registered patients in the Pediatric Chronic Specific Disease Treatment Research Project exceeds 100,000 (Kato, 2008; Pediatric Chronic Specific Disease Information Center, 2015), of which at least 1000 patients turn 20 years old each year (Kato, 2008;Takei, Shiramizu, Sato, Kato, 2007). Along with this, the importance of transitional medical care, which is shifting from medical care for childhood to medical care for adults, is increasing.
In 1993, the American Adolescent Medicine Society published recommendations for transitional medicine. The transition is defined as “a deliberate and deliberate move by adolescents and young adults with chronic health to move from child-oriented to adult-oriented healthcare systems.”(Blum et al., 1993). In Japan, the Japanese Society of Pediatrics published “Recommendations for Transitional Medicine for Patients with Childhood Onset Diseases” in 2014. Transitional care is defined as “the transition from childhood care to adult care suitable for individual patients” (Yokotani et al., 2014).
The transfer from pediatrics to adult clinical departments is just one element or event that constitutes the transition, and the transfer is not necessarily a prerequisite for the transition (Kato, 2017; Schmidt, Thyen, Herrmann-Garitz, Bomba, & Muehlan, 2016). It is necessary to have a transitional medical system that can seamlessly provide the best care for patients and their families by assuming patterns according to the individuality of patients and families, such as cases of receiving care in pediatrics or adulthood and cases of receiving care in both pediatrics and adulthood. (Reiss, 2012; Yokotani et al., 2014).
As can be seen from the existence of previous research, it is very important to support the independence of patients in transitional medicine. In previous research,the transition is “to shift the subject of health care from parents / medical staff to the patients themselves so that they can receive appropriate medical care in line with age changes in pathological conditions / complications and physical / personal maturity” (Eguchi et al., 2018), “Toward independence / autonomy so that patients can participate in society according to their physical and intellectual abilities” (Tasaki et al., 2015). Independence in transitional medical care means that patients have the ability to “understand their own diseases and symptoms,” “voluntary oral administration, self-management of diet and exercise,” and “communicative competence to consult and explain to medical staff”. The most difficult but important point is to “shift the decision-making body from parents / medical staff to the patient himself / herself “.
The goal of transitional medical care is to support these independence and foster the ability of patients to live in good health while having illness. In some cases, the patient’s condition may worsen due to non-compliance or lack of knowledge as a result of proceeding with the transition with insufficient understanding of the patient’s disease and independent medical treatment behavior and shifting the responsibility for self-care to the patient himself / herself. (Betz, 2010; Bloom, Kuhlthau, Van Cleave, Knapp, Newacheck, & Perrin, 2012；Matsumura, Takada, Ichihara, 2008; Ogura, Kogo, Okawa, 2013). In anticipation of the patient becoming an adult, preparations should be made by providing independence support during the transition period from early teens (Kubota, 2015; Sakurai, 2016), and this preparation process is also part of the transition process (Maru, 2012). Therefore, transitional medical care is a multifaceted and long-term system that includes not only the establishment of a care system on the side of providing medical care, but also the establishment of a system on the side of receiving care such as education and coordination for patients and parents.
Current status of transitional medical care
In Japan, it has been reported that about half of adolescent and adult patients / guardians with chronic illnesses that develop in childhood continue to see pediatrics and do not wish to change departments. (Domae et al., 2014; Matsumori et al., 2003; Umeda et al., 2013)(Matsumori et al., 2003; Bloom et al., 2012). As patients grow up, they become aware of their differences and gaps from healthy people, and seek someone who understands them and a place where they can feel at ease. It has also been reported that they will continue to see pediatrics because they are familiar and willing to accept themselves with the disease and want to be treated by a trusted healthcare professional. (Matsumori et al., 2003; Matsuo et al., 2004; Maruta, Nomaguchi, Kusaba, 2014).
The problems that patients who have reached adulthood continue to see pediatrics are delays in their independence, difficulty in dealing with physical and mental health problems that occur during adulthood and pregnancy, and the limit of the number of pediatric patients that can be accepted. It has also been reported that more than 80% of doctors and nurses feel the need to change departments for adult patients who continue to see pediatrics. (Ishizaki et al., 2012; Maruta et al., 2014; Mitsuya, Takemori, 2014), (Mori et al., 2013; Umeda et al., 2013).
Academic societies such as the American Academy of Pediatrics and the National Institute for Health and Care Technology recommend early puberty as the time to begin the transition (McManus & White, 2017). It has been shown that older female patients are more prepared for the transition.(Ferris et al., 2015;Javalkar et al.,2016;Nazareth et al.,2018;Sawicki,Kelemen,&Wwitzman,2014;Stewart et al.,2017)(Javalkar K et al.,2016; Sawicki et al.,2014; Stewart et al.,2017). However, there are reports that gender differences disappear as the age increases from early to late puberty. It is also believed that developmental maturity influences the preparation for transition, and that in adolescence, women generally mature faster than men, resulting in better transition preparation for women (Stewart et al., 2017). Therefore, it is important to consider not only the patient’s age but also psychological developmental status and social factors, and proceed with the transition according to each individual case. (Ishizaki et al., 2012; Levine & Levine, 2010; Mori et al., 2013; Umeda et al., 2013).
Transitional medical challenges
There are various obstacles to the smooth transition, and they are roughly classified into three types: “systematic factors”, “factors on the medical staff side”, and “factors on the patient / guardian side”. (Dellon et al.,2013).
The first “systematic factor” is institutional and insurance issues such as transitional medical care not being recognized as medical fees, and the shortage of medical staff involved in transitional medical care. (Dellon et al., 2013; Tasaki et al., 2015).
The second “factor on the part of healthcare professionals” is the lack of a collaborative network between pediatric and adult healthcare providers, the lack of adult healthcare providers to accept after a transfer, and the feelings of pediatric health care providers that they want to continue and that only they can be examined can be mentioned. (Betz, 2010; Dellon et al., 2013; Ishizaki et al., 2012; L. Levine, & M. Levine, 2010; Mitsuya, Takemori, 2014; Umeda et al., 2013) (Betz, 2010; Dellon et al. , 2013; Kato, 2017; L. Levine, & M. Levine, 2010; Umeda et al., 2013) (Kato, 2017; Umeda et al., 2013).
Finally, as the third “factor on the patient / parents side”, there are those that affect the transfer of departments and those that affect the independence of patients and the acquisition of self-care ability. Factors that hinder the transfer of departments include dependence of patients and parents on pediatrics, and diseases of patients with rapid progression and unstable medical conditions. (Kato, 2017; Umeda et al., 2013) (Kato, 2017; Mitsuya, Takemori, 2014; Tasaki et al., 2015). Factors that hinder the patient’s independence and acquisition of self-care ability include the negative perception of the patient with the disease, but the most important factor is the patient’s passive self-care behavior due to dependence on parents. (Ogura et al., 2013) (Dellon et al., 2013; Ogura et al., 2013; Umeda et al., 2013).
The influence of the parents in the transition
In previous studies, parents felt the need for transition more than patients, but there were reports that parents perceived patients’ disease management and self-care abilities worse than patients’ self-assessment. There may be a discrepancy between the transition preparation status recognized by the patient and the transition preparation status of the patient recognized by the guardian. (Sakurai, 2016; Sawicki et al., 2014) (Fukagawa, 2006; Nazareth et al., 2018). Parents tend to underestimate a patient’s disease management and self-care abilities. It has been pointed out that this acts as a background for patients’ dependence on their parents, and it is possible that this is one of the obstacles to the transition. (Mitsuya, Takemori, 2014). The parents is one of the parties who hands over the subject and responsibility of self-care to the patient together with the medical staff, and if the policies of both the handing side and the receiving side do not match, the handing over will not be established. Therefore, it is necessary to pay attention to parents as well as the patients themselves, and to promote the transition of patients while giving guidance to parents to support appropriate independence support for patients (Kato, 2017).