Validation and cross-cultural adaptation of the Italian version of the paediatric eating assessment tool (I-PEDI-EAT-10) in genetic syndromes.

BACKGROUND: The Pediatric Eating Assessment Tool (PEDI-EAT-10) is a reliable and valid tool for rapid identification of dysphagia in patients aged 18 months to 18 years. AIMS: To translate and adapt the PEDI-EAT-10 into the Italian language and evaluate its validity and reliability. METHODS & PROCEDURES: The translation and cross-cultural adaptation of the tool consisted of five stages: initial translation, synthesis of the translations, back translation, expert committee evaluation and test of the prefinal version. The internal consistency of the translated tool was analysed in a clinical group composed of 200 patients with special healthcare needs aged between 18 months and 18 years. They were consecutively enrolled at the Rare Disease Unit, Paediatrics Department, Fondazione Policlinico Agostino Gemelli-IRCCS, Rome. For test-retest reliability, 50 caregivers filled in the PEDI-EAT-10 questionnaire for a second time after a 2-week period. Construct validity was established by comparing data obtained from patients with data from healthy participants (n = 200). The study was approved by the local ethics committee. OUTCOMES & RESULTS: Psychometric data obtained from patients (104 M; mean age = 8.08 ± 4.85 years; median age = 7 years) showed satisfactory internal consistency (Cronbach's α = 0.89) and test-retest reliability (Pearson r = 0.99; Spearman r = 0.96). A total of 30% of children were classified as having a high risk of penetration/aspiration. The Italian PEDI-EAT-10 mean total score of the clinical group was significantly different from that resulting from healthy participants. CONCLUSIONS & IMPLICATIONS: The PEDI-EAT-10 was successfully translated into Italian, validated and found to be a reliable one-page rapid screening tool to identify dysphagia in children and adolescents with special needs. WHAT THIS PAPER ADDS: What is already known on the subject The PEDI-EAT-10 is a valid and reliable quick discriminative paediatric tool for identifying penetration/aspiration risks. What this paper adds to the existing knowledge In the present study we successfully translated and adapted the PEDI-EAT-10 into the Italian language. What are the potential or actual clinical implications of this work? This translation and adaptation increase access to valid feeding and swallowing assessment for children of Italian-speaking families. In addition, the I-PEDI-EAT-10 can suggest further assessment of patients' swallowing abilities.

Trastornos de la deglución en niños menores de 3años con condiciones médicas complejas, abordaje interdisciplinario / Interdisciplinary approach in swallowing disorders in children under 3years old with complex medical conditions

Los problemas de alimentación ocurren en el 80% de niños que presentan algún retraso del desarrollo debido a condiciones médicas crónicas, y pueden presentarse en diferentes grados y formas. Los niños con trastornos de la deglución (TD) pueden manifestar síntomas en todo momento de la alimentación. Objetivo: Diagnosticar e intervenir TD y/o trastornos de conducta alimentaria (TCA) en niños con patología médica crónica compleja, derivados a un equipo interdisciplinario, durante el año 2017, en un hospital de alta complejidad. Material y métodos: Estudio analítico, prospectivo y longitudinal con intervención de un equipo interdisciplinario. Se realizó evaluación clínica fonoaudiológica de la deglución, ofreciendo pautas de estimulación y modificación de consistencias. Resultados: Se evaluaron 139 pacientes de entre 2meses y 3años; el 38% eran mujeres, y el 77% con soporte nutricional enteral (SNE). El 73% presentaron TD exclusivamente o asociado a un TCA. El 38% que ingresaron con SNE lograron el destete (sin diferencia significativa entre los que tenían o no TD [p=0,85] y los que tenían o no traqueotomía [p=0,88]), y del grupo que no logró el destete, un 54% aumentaron el aporte por vía oral. Se observó una diferencia estadísticamente significativa en el destete de los pacientes que concurrieron al espacio de la clínica con respecto a los que no (p=0,016) y un mayor tiempo de intervención entre quienes lograron el destete y quienes no: 5,2±3,1 vs 3,45±3,1meses (p=0,0099). El 70% continuqron seguimiento por el fonoaudiólogo. Conclusión: En niños con condiciones médicas complejas es esencial el trabajo interdisciplinario y especializado en esta temática. En los casos de TD, la intervención fonoaudiológica se asume como fundamental para la detección precoz y el correcto abordaje de la disfagia.(AU)

Children with swallowing disorders (SD) may manifest symptoms at all times during feeding. This clinical entity can present itself in different grades and forms. Objective: To diagnose and intervene in SD and/or eating behavior (EB) in children with complex chronic medical conditions referred to an interdisciplinary team, during 2017, in a high complexity hospital. Material and methods: Analytical, prospective and longitudinal study with the intervention of an interdisciplinary team. Clinical phonoaudiological evaluation of swallowing was performed, offering guidelines for stimulation and consistency modification. Results: 139 patients, between 2 month and 3 years old, 38% women, 77% with enteral nutritional support (ENS) were evaluated, 73% presented SD exclusively or associated with an EB. The 38% who entered with ENS achieved weaning (without significant difference between those who had or not SD, P=.85, and those who had or not tracheotomy, P=.88), and of the group that did not achieve weaning, oral contribution increased in 54% of cases. A statistically significant difference was observed in weaning of patients who attended the interdisciplinary space with respect to those who did not (P=.016) and longer intervention time between those who achieved weaning and those who did not, 5.2±3.1 vs 3.45±3.1 months (P=.0099). And 70% off patients continued follow with the speech therapist. Conclusion: Interdisciplinary and specialized work in this subject is essential in children with complex medical conditions. In cases of SD, speech therapy intervention, it is assumed as essential for early detection and correct approach to dysphagia.

"I was always struggling": Caregivers' experiences of transitioning a child from oral to long-term non-oral feeding at an out-patient hospital clinic in South Africa.

BACKGROUND: As the prevalence of paediatric dysphagia increases, the need for long-term non-oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long-term non-oral feeds, and the factors which influence the process of decision-making and the provision of consent to do so. This paper aims to explore these factors. METHODS: Semi-structured interviews were conducted with nine participants recruited from the multidisciplinary out-patient non-oral feeding clinic at a hospital. Interviews explored caregiver experiences of decision-making and the process of providing consent when transitioning their child to non-oral feeds, as well as the support structures available to the caregivers. Interviews were audio recorded and transcribed, then analyzed using thematic analysis (Braun & Clarke, 2013) and content analysis (Neuendorf, 2016). RESULTS: Challenges to care and quality of life, access to information and culturally relevant counselling, and the involvement of family members and significant others emerged as prominent themes. Findings suggest that quality of life was the most common motivating factor for transitioning a child to non-oral feeding methods. Several participants suggested that support and information sharing via digital platforms were both useful and effective. IMPLICATIONS: The findings highlight caregivers' needs for improved access to information and social support. The findings hold implications for training of healthcare providers working in similar contexts and for models of service delivery which ensure that family-centred intervention can be delivered in culturally and contextually relevant ways. With widespread access to smartphones, counselling should include digital messaging as a way of providing support and information sharing. Future research should focus on the complexities of counselling and the process of informed consent in settings impacted by diverse cultural, contextual and linguistic barriers, as well as the potential value of mobile health (mhealth) in ensuring improved health outcomes.