Eavan Mary Mc Govern1, Elisabeth Maillart2, Marine Bourgninaud3, Elodie Manzato3, Cécile Guillonnet3, Fanny Mochel4, Julie Bourmaleau3, Catherine Lubetzki2, Michel Baulac2, Emmanuel Roze2. 1. APHP, Hôpital Salpêtrière, Département of Neurologie, Paris, France. Electronic address: eavanmcgovern@gmail.com. 2. APHP, Hôpital Salpêtrière, Département of Neurologie, Paris, France; Sorbonne Université, Faculté de Médecine, CNRS UMR 7225, UMR S1127 Institut du Cerveau et de la Moelle Épinière, France. 3. APHP, Hôpital Salpêtrière, Département of Neurologie, Paris, France. 4. Sorbonne Université, Faculté de Médecine, CNRS UMR 7225, UMR S1127 Institut du Cerveau et de la Moelle Épinière, France; APHP, Hôpital Salpêtrière, Reference Centre for Neurometabolic Disease, Paris, France.
Abstract
BACKGROUND: "JUMP" is a multidisciplinary program based at the Pitie-Salpêtrière Hospital Paris that transitions young adults with chronic neurological conditions from paediatric to adult healthcare. Transitional care programs have been shown to improve medical, educational and psychosocial outcomes for adolescent patients. METHODS: Demographic details and health-related variables of all patients referred to the JUMP program were collected. Satisfaction outcome measures were the 18-item On Your Own Feet Transfer Experience Scale (OYOF-TES) and a visual analogue scale, which assessed overall satisfaction with the transfer process. Scales were sent to JUMP patients attending the JUMP day hospital (n = 94) and their parents (n = 94). RESULTS: Since its inception, 111 patients have been seen in the JUMP program. Nine neurological clinical syndromes and four main underlying etiologies were identified. Approximately half of all questionnaires and scales (86/188) sent to patients and parents were returned. Eighty-nine percent of patients and 91% of parents were very satisfied with their transfer experience. There was a strong, positive correlation between patient and parent satisfaction [r = 0.910; p < 0.0001]. CONCLUSION: The JUMP program which is rooted in a multidisciplinary and coordinated approach to transitional care encompasses a broad range of neuro-pathologies. Overall, satisfaction levels were high amongst patients within the program, and their parents. The key role played by the coordination nurse specialists throughout the transfer process is a likely key determinant in satisfaction levels.
BACKGROUND: "JUMP" is a multidisciplinary program based at the Pitie-Salpêtrière Hospital Paris that transitions young adults with chronic neurological conditions from paediatric to adult healthcare. Transitional care programs have been shown to improve medical, educational and psychosocial outcomes for adolescent patients. METHODS: Demographic details and health-related variables of all patients referred to the JUMP program were collected. Satisfaction outcome measures were the 18-item On Your Own Feet Transfer Experience Scale (OYOF-TES) and a visual analogue scale, which assessed overall satisfaction with the transfer process. Scales were sent to JUMP patients attending the JUMP day hospital (n = 94) and their parents (n = 94). RESULTS: Since its inception, 111 patients have been seen in the JUMP program. Nine neurological clinical syndromes and four main underlying etiologies were identified. Approximately half of all questionnaires and scales (86/188) sent to patients and parents were returned. Eighty-nine percent of patients and 91% of parents were very satisfied with their transfer experience. There was a strong, positive correlation between patient and parent satisfaction [r = 0.910; p < 0.0001]. CONCLUSION: The JUMP program which is rooted in a multidisciplinary and coordinated approach to transitional care encompasses a broad range of neuro-pathologies. Overall, satisfaction levels were high amongst patients within the program, and their parents. The key role played by the coordination nurse specialists throughout the transfer process is a likely key determinant in satisfaction levels.
Authors: Vincent J T Peters; Levinus A Bok; Lieke de Beer; Joyce J M van Rooij; Bert R Meijboom; Jan Erik H Bunt Journal: J Appl Res Intellect Disabil Date: 2022-06-05