ESPE Abstracts

Healthcare transition (HCT) from paediatric to adult care is essential for many chronic illnesses and aims to improve patient outcomes, quality of life, treatment adherence and to encourage disease self-management. The adolescent health care clinic (AHCC) at King Abdulaziz Medical City (KAMC) in Jeddah, Saudi Arabia, was established in March 2018. Adolescents aged 14 to 18 years with a variety of endocrine disorders, such as adrenal disorders, puberty-related issues, bone diseases, including X-linked hypophosphatemia (XLH), thyroid disorders, growth hormone deficiency, and cranial diabetes insipidus, are invited to attend the clinic. HCT at the AHCC involves 3 stages: pre-transfer, the transition period and transfer to adult care. Pre-transfer involves discussions between the paediatric endocrine team and the patients, parents, or caregivers. A summary letter containing patient’s medical history and needs is generated, and the first AHCC appointment is scheduled within 3-4 months. Transfer to the AHCC begins at 14 years of age. During the transition period, an individually tailored care plan is prepared by the multidisciplinary team at the AHCC for each patient and ongoing medical care is coupled with educational sessions to inform and educate patients about their illness, available treatments, the importance of treatment adherence and lifestyle modification and to encourage self-management. Face-to-face meetings and visuals are used to facilitate patient education. Regular feedback is provided to patients, parents or caregivers throughout the transition period and discussions about transfer to adult care begin from 17 years of age. Transfer to adult care is undertaken at 18 years of age. The AHCC at KAMC follows up 6-8 cases and has 3-5 new referral cases every month. Regular meetings are held between team members at the AHCC to track clinic progress and quality of service. The clinic optimises the medical care of patients with life-long chronic disease, such as XLH, by delivering on-going medical care in a supportive environment and providing physiological, psychological, and social support throughout the transition to adult care. HCT for XLH patients is important to help manage the change from paediatric care, which focuses on early treatment and growth monitoring, to multifaceted adult care, involving the management of complications, quality of life, pain, and physical function. This clinic is one of only a few adolescent clinics in Saudi Arabia and therefore can act as a model for further adolescent clinics across the country and improve the lives of individuals living with chronic disease.