Tullio Messana, Nicolas Battistella, Valentina Biagioli, Francesca Darra, Alice Dianin, Beatrice Di Tella, Elia Domenica, Silvia Masnada, Sara Matricardi, Francesca Operto, Isabella Orlando, Nicola Pietrafusa, Francesca Ragona, Emilio Russo, Pierangelo Veggiotti, Lilia Volpi, Valentina De Giorgis
Despite increasing evidence and national recommendations supporting KDT use in DRE, substantial organizational and educational barriers continue to limit their widespread implementation in Italy. Strengthening multidisciplinary teams, expanding training opportunities, standardizing care pathways, and developing scalable hub-and-spoke models may improve equitable access to KDTs across the national epilepsy network.
OBJECTIVE: Ketogenic dietary therapies (KDTs) are an established treatment option for drug-resistant epilepsy (DRE), yet their implementation in routine clinical practice remains heterogeneous. We conducted a national survey promoted by the Italian League Against Epilepsy (LICE) Dietary Therapy Study Group to evaluate current KDT practice, identify barriers to implementation, and explore future organizational and educational needs across Italian epilepsy centers.
METHODS: A cross-sectional anonymous electronic survey was distributed to healthcare professionals working in LICE-affiliated epilepsy centers. The questionnaire investigated respondent characteristics, institutional setting, multidisciplinary resources, KDT implementation, organizational models, perceived barriers, and future training needs. Comparisons between pediatric and adult services were performed using chi-square or Fisher's exact tests, as appropriate. Odds ratios (OR) with 95 % confidence intervals (CI) were calculated. A multivariable logistic regression model was used to identify factors independently associated with direct KDT implementation.
RESULTS: Seventy-nine completed questionnaires were included. Respondents were predominantly adult neurologists (59.4 %), while 49.3 % worked in tertiary referral centers. Direct KDT implementation was reported by 46.8 % of centers, whereas 15.1 % relied on referral pathways and 31.6 % expressed interest in establishing a KDT program. Organizational barriers emerged as the principal limitations, particularly lack of dedicated personnel and insufficient multidisciplinary expertise (76 and 80 % respectively). Patient- and caregiver-related adherence difficulties were the most frequently perceived barriers to treatment acceptance (70.8 % and 68.3 %, respectively), whereas adverse effects were rarely considered a major obstacle (6.3 %). Pediatric centers more frequently implemented KDTs directly than adult centers (68.8 % vs 31.9 %; OR 4.69, 95 % CI 1.78-12.34). In multivariable analysis, pediatric setting and Level III center status were independently associated with direct KDT implementation. Interest in future educational initiatives was high, with nearly 90 % of respondents supporting dedicated training programs and simplified ketogenic protocols to facilitate implementation.
SIGNIFICANCE: Despite increasing evidence and national recommendations supporting KDT use in DRE, substantial organizational and educational barriers continue to limit their widespread implementation in Italy. Strengthening multidisciplinary teams, expanding training opportunities, standardizing care pathways, and developing scalable hub-and-spoke models may improve equitable access to KDTs across the national epilepsy network.