Transition of young adults with endocrine and metabolic diseases: the ‘TRANSEND’ cohort

Abstract

Objective. The transition period between paediatric and adult medicine is associated with poor patient outcomes and important numbers of patients lost to follow up. Describe the cohort of patients in adult care who benefit from a new transition program based on case management approach. Design. A longitudinal study was led since September 2016 in a French University Hospital. Methods. Patients with any endocrine or metabolic disease diagnosed during childhood and transferred to adult care were included. The transition program includes 3 steps based on case management: liaising with paediatric services, personalising care pathways, liaising with structures outside hospital (General practitioner, educational and social sector). Results. The cohort included 500 patients with malignant brain tumour (n=56 (11%)), obesity (n=55 (11%)), type 1 diabetes (n=54 (11%)), or other disease (n=335 (67%)). They were aged 19 in median at transfer, sex ratio: 0.5. At 21 months of follow-up in median, 439 (88%) have regular follow-up in or outside the hospital, 47 (9%) have irregular follow-up (absence at the last appointment or no appointment scheduled within the time recommended), 4 stopped care on the doctor's advice, 4 died, 3 moved, 3 refused care. The program involved 9,615 case management acts, 7% of patients required more than 50 acts. Patients who required most of support are usually affected by a neuro-cognitive disorder and have social issues. Conclusions. The case manager addresses the complex needs of patients. With time, the cohort will provide unprecedented long-term results of patients with various conditions who went through transition.

Mapping of the current transition of care practice for patients with pituitary disease at Endo-ERN reference centers

“…23 The success of transition programs and interventions in pituitary disease should be explored further, despite the fact that they are proven valuable in other chronic diseases, based on criteria like loss to followup or adherence. 24,25 Taking hypopituitarism as an example, certain biochemical, auxological, and psychosocial parameters are widely accepted goals of treatment. In view of the transition process, few of the respondents view medical outcomes as markers for its success, demonstrating lack of understanding that the transition process directly affects medical outcomes, and the need for unified criteria for assessment of pituitary transition interventions.…”

“…The success of transition programs and interventions in pituitary disease should be explored further, despite the fact that they are proven valuable in other chronic diseases, based on criteria like loss to follow-up or adherence ( 24 , 25 ). Taking hypopituitarism as an example, certain biochemical, auxological, and psychosocial parameters are widely accepted goals of treatment.…”

Transition of patients with interstitial lung disease from paediatric to adult care

“…This omission that may lead to missing some of the relapsing or slowly progressive cases. Although generic pathways such as “Ready, Steady, Go” [ 8 ] and the use of HEADSS [ 12 , 13 ] to guide consultations are useful in transitioning any young person, there are child-specific issues which are not captured, despite the fact that late sequelae of some chILDs have already been documented [ 3 , 14 , 15 ]. Furthermore, there may be genetic implications if the young person elects to start a family.…”

Facilitating the transition from paediatric to adult care in endocrinology: a focus on growth disorders

“…Joint office visits with the adult and paediatric endocrinologist (either in-person or virtually) as well as transition clinic models that incorporate multidisciplinary teams, including adult and paediatric providers of different specialties, nurse educators, social workers and psychologists, can be effective strategies for transfer of AYAs with complex needs [1,4,25]. Care coordinators are also instrumental during the transfer of care, and implementation of a case manager who facilitates the first adult endocrine consultation, personalizes adult services based on the AYA's needs assessment and coordinates with nonmedical advocates such as teachers and schools has been shown to yield greater transition success and overall engagement rate in adult medical visits for AYAs with endocrine disorders [26].…”