Improvement of quality of life in adolescents with epilepsy after an empowerment and sailing experience

S Cappelletti; I Tondo; N Pietrafusa; T Renzetti; I Pannacci; S Gentile; M Perrucci; C Calabrese; P Cornaglia Ferraris; N Specchio; F Vigevano

doi:10.1016/j.yebeh.2020.106957

Improvement of quality of life in adolescents with epilepsy after an empowerment and sailing experience

Epilepsy Behav. 2020 May:106:106957. doi: 10.1016/j.yebeh.2020.106957. Epub 2020 Mar 16.

Authors

S Cappelletti¹, I Tondo², N Pietrafusa³, T Renzetti⁴, I Pannacci⁴, S Gentile¹, M Perrucci⁵, C Calabrese⁴, P Cornaglia Ferraris⁶, N Specchio⁷, F Vigevano⁴

Affiliations

¹ Clinical Psychology Unit, Department of Neuroscience and Neurorehabilitation, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.
² Clinical Psychology Unit, Department of Neuroscience and Neurorehabilitation, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy; Rare and Complex Epilepsies Unit, Department of Neuroscience and Neurorehabilitation, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.
³ Rare and Complex Epilepsies Unit, Department of Neuroscience and Neurorehabilitation, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.
⁴ Department of Neuroscience, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.
⁵ Administrative Staff, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.
⁶ Nave Italia Foundation, Genoa, Italy.
⁷ Rare and Complex Epilepsies Unit, Department of Neuroscience and Neurorehabilitation, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy. Electronic address: nicola.specchio@opbg.net.

PMID: 32193096
DOI: 10.1016/j.yebeh.2020.106957

Abstract

Purpose: Epilepsy in adolescents affects their psychological health, independence, and emotional adjustment. Psychological and self-management interventions might give benefits to adolescent with epilepsy in terms of quality of life, emotional well-being, and reduced fatigue. "Fondazione Tender To Nave Italia" promotes a project using sailing activities as an empowerment opportunity. The main aim of our study was to examine the empowerment effects on quality of life of adolescents with epilepsy attending sailing activities, and to compare the results perceived by adolescents and their parents.

Methods: Fifty-eight patients with a diagnosis of epilepsy were included in an empowerment project titled "Waves rather than spikes" from June 2013 to July 2018. Intellectual level was based on the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) criteria. Patients were administered Pediatric Quality of Life Inventory (PedsQL), adolescent and parent version. Behavioral data were collected by parent-report Child Behavior Checklist (CBCL).

Results: Thirty female and 28 male patients with a mean age of 15 years, referred to "Bambino Gesù Children's Hospital" in Italy, were included. Thirty-three (56.9%) patients had a history of refractory epilepsy; 34 (56.2%) received polytherapy, 19 (32.7%) monotherapy, and 5 (8.6%) were not taking antiepileptic drugs. Intellectual functioning was normal in 43 (74.1%), borderline in 9 (15.5%), and mildly impaired in 6 (10.3%). Results from PedsQL adolescent report revealed significant postintervention improvement for total score (p = 0.023) and in two domains: physical health (p = 0.0066) and emotional functioning (p = 0.015). Results from PedsQL parent report showed significant postintervention improvement for the domain of school functioning (p = 0.023). In the multivariate model, a low CBCL value was predicting a higher score in the health subscore difference between pre- and postempowerment activity (p = 000.8).

Conclusion: Empowerments activities are crucial in order to reduce the burden of epilepsy in adolescents, and to improve quality of life. These are critical factors for a well-managed transition phase to adulthood.

Keywords: Behavior; Empowerment project; Epilepsy; Quality of life; Sailing.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Adolescent Behavior / psychology*
Adult
Anticonvulsants / therapeutic use
Child
Epilepsy / psychology*
Epilepsy / therapy*
Female
Humans
Italy / epidemiology
Male
Patient Participation / methods
Patient Participation / psychology*
Quality of Life / psychology*
Surveys and Questionnaires
Water Sports / psychology*

Substances

Anticonvulsants