Pediatric-adult Care Transition and Quality of Life in People with Multiple Sclerosis and Other Chronic Neurological Diseases: A Preliminary Study
Juan Ignacio Kenny1, Lucia Belen Varela3, Jimena Miguez1, Alejandra Heriz1, Alejandra Gonzalez2, Javier Jerez2, Juan Avalos1, Gabriela Besocke1, Barbara Rosso1, Maria del Carmen Garcia1, Mariela Bettini1, Marcelo Rugiero Rodriguez1, Maria Paula Guillen1, Berenice Silva1
1Neurology, 2Pediatric neurology, Italian Hospital of Buenos Aires, 3Hospital Italiano de Buenos Aires
Objective:

To evaluate quality of life and independence of pwMS and other neurological conditions, who started with their neurological disease before the age of 18, and its relationship with transition.

Background:

Coordinated transition (CT) from a pediatric to an adult healthcare system in chronic diseases is an important determinant of quality of life in adulthood. There are few reports in Multiple Sclerosis (pwMS).

Design/Methods:

Cross-sectional study including patients aged 18 to 28 who debuted with their neurological disease (MS, epilepsy (Ep) and neuromuscular disorder (NM)) before the age of 18. The following scales were performed: “European quality of life 5 dimension” (EQ5D) in all diseases, “MS International Quality of life questionnaire” (MusiQoL), “Quality of Life in Epilepsy questionnaire 10” (QOLIE-10) and “36-item Short Form Survey” (SF-36) for NM. To assess the transition process, “Transition Readiness Assessment Questionnaire 5” (TRAQ-5) scale was used. 

Results:

52 patients were included: 21 pwMS and 31 non-MS (25 Ep and 6 NM). In pwMS: 42.9% female, age: 21.4±2.9, MS evolution 6.4 ±3.2 years, MusiQol score: 76.8 ± 14.2, TRAQ-5 score: 77.6± 37.3. CT were performed by 42.9% in pwMS vs 22.6% in non-MS. Pregnancy in an MS adolescent was a reason for accelerated transition. We found a significant difference in TRAQ-5 and MusiQol scores in pwMS with and without CT (p˂0001 and p=0.0075 respectively), and a correlation between these test (r=0.7, 95%CI= 0.3-0.8, p=0.0003). Furthermore, we found a significant difference in pwMS in anxiety (p=0.02) and daily activity (p=0.01) scores of EQ5D.

Conclusions:

The implementation of a pediatric-adult transition coordinated program in pwMS is correlated with a better quality of life and independence in adulthood. More studies are required in this field to corroborate these findings.

10.1212/WNL.0000000000205878