2022 年 39 巻 2 号 p. 84-88
Due to advances in medical care, in recent years, about 90% of patients with childhood–onset diseases have reached adulthood. As the patients get older, they developed the risk of atherosclerosis and malignancy, and need to support for the autonomy and social participation. Therefore, transitional care is needed.
Although our facility is a regional core hospital with hyperacute beds, our neurology clinic accepted many cases of transition mainly due to the relocation of a nearby pediatric medical center. Most patients had epilepsy, and 40% are SMID (severe motor and intellectual disabilities), such as cerebral palsy and metabolic disease. Epilepsy patients often had mental retardation, and SMID patients often required medical treatment such as airway management and tube feeding.
In epilepsy patients, there were cases of frequent seizures due to neglect of medication, and there was a problem with patient autonomy. Patients with SMID were often hospitalized due to respiratory tract infections, and often required complicated measures in terms of environmental improvement and cooperation with community medicine.
The questionnaire survey conducted at our department revealed 70% of the cases transferred to our facility had a certificate of intellectual disability and were considered to have difficulty in autonomy, and more than 60% were worried about changing doctors.
Our experience and survey showed that patients with child–onset neurological diseases have difficulties in reconstruction of medical treatment environment and autonomy during transitional care. It seems realistic to set up a set up a preparation period for transition and have a good multidisciplinary collaboration between neurology and neuropediatrics.