Background/Aim: Transition from pediatric to adult care is a challenging turning point. The aim was to evaluate the transition process and needs expressed by patients with chronic endocrine conditions at transition in order to ensure program optimization. Methods: Prospective assessment of the transition period was conducted through completion of standardized questionnaires given to targeted patients. Two types were created: (1) a general questionnaire (GQ) addressing universal aspects of transition, and (2) a specific questionnaire (SQ) exploring concerns related to each endocrine condition. Three endocrinopathies (congenital adrenal hyperplasia, hypogonadotropic hypogonadism and growth hormone deficiency) were selected for assessment since they present specific challenges requiring characterization. Results: Over the last decade, 244 patients in transition were registered in our department and 153 were included since they presented one of the endocrinopathies selected. A total of 73 subjects completed both the GQ and the SQ. Over 80% of the patients were satisfied with the transition process in terms of organization, accessibility and medical care. The actual age of transition corresponded for most to the age considered by patients as ideal for transition. SQs identified psychosexual issues that must be addressed more systematically. Conclusion: This study identified key elements allowing the creation of an improved transition program tailored for our center and for each endocrine condition studied.
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.
Objective. To evaluate the effect of a new care organisation on multiple outcomes of transition success and its cost-effectiveness in patients with any endocrine or metabolic disease diagnosed during childhood and transferred to adult care.
Design. Non-randomized controlled trial in a French University Hospital.
Methods. Patients transferred to adult care during the control period (04/2014-08/2016) and the intervention period (09/2016-06/2018) were included. The intervention is based on case management involving liaising with paediatric services, personalising care pathways, and liaising with structures outside hospital (general practitioner, educational and social sector). The primary endpoint was the percentage of patients lost to follow-up at 24 months post transfer. Other outcomes were collected from medical files, consultation software, and questionnaires. A cost analysis was performed.
Results. 202 patients were included (101 per period) , the most represented pathologies were congenital and non-congenital hypopituitarism (respectively n=34 (17%) and n=45 (22%)) and thyroid diseases (n=21, 10%). Patients were aged 22.5 in median at 24 months post transfer where 12 were lost to follow up in the control group versus 9 with the intervention (p=0.49). The percentage of honoured consultation among those planned during 24 months was higher with intervention (p=0.0065). Patient satisfaction, physician trust, transfer delay did not differ between the groups. The incremental cost-effectiveness ratio was €179 per patient not lost to follow-up.
Conclusions. At 24 months post transfer the rate of lost to follow-up does not differ significantly, but indicators of a steadier follow-up are increased and the intervention appears to be cost-effective.
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