Reliability and validity of the pediatric feeding and swallowing disorders family impact scale for Turkish children with cerebral palsy by endoscopic evaluation

Abstract

Öztürk EA. Reliability and validity of the pediatric feeding and swallowing disorders family impact scale for Turkish children with cerebral palsy by endoscopic evaluation. Turk J Pediatr 2019; 61: 741-748. The caregivers of children with cerebral palsy (CP) have high mood disorders and stress levels. This study was aimed to conduct validity and reliability of Turkish version of The Pediatric Feeding and Swallowing Disorders Family Impact Scale (PFSDFIS) by using an objective method. This study was performed in our physical medicine and rehabilitation (PMR) clinic between July 2016 and July 2018. This study was performed with 251 children with CP who had complaint of swallowing and/or feeding problems, and their primer caregivers. Cronbach's alpha and corrected item-total correlations were used to assess internal consistency. Test and retest reliability studies were also conducted. The construct validity was assessed using the dysphagia level defined with flexible fiberoptic endoscopic evaluation of swallowing and Impact on Family Scale (IFS). Total score of T-PFSDFIS was correlated to the dysphagia level by using FEES. Results showed, Cronbach's alpha value of the scale to be 0.821. Corrected item-to-total correlations ranged from 0.729 to 0.911. Test-retest reliability coefficients was calculated with intra-class correlation coefficient (ICC), the total score was 0.989. A negative significant good level correlation was found between the dysphagia level by using endoscopic evaluation and the T-PFSDFIS total score as well as between total scores of IFS and T-PFSDFIS. In subgroup analysis; the lowest value was in normal swallowing and significantly different from all dysphagia levels. In conclusion; this scale is effective in reflecting the influence of caregivers on the severity of dysphagia measured objectively and T-PFSDFIS is a valid and reliable scale for Turkish children with CP.

Implementation of Pediatric Flexible-Endoscopic Evaluation of Swallowing: A Systematic Review and Recommendations for Future Research

“…Nine studies exclusively focused on infants under 1 year of age [ 12 – 20 ]; five samples consisted of children younger than 12 months up to 3 years [ 21 – 25 ]; one study focused on children between 4 and 8 years [ 26 ], and a wide age distribution including infants, children and adolescents could be found in seven studies [ 10 , 11 , 27 – 30 ] (Table 4 ).…”

“…Further analysis of the samples showed that three studies included only infants from the neonatal intensive care unit (NICU) [ 12 , 14 , 18 ], one focused on mechanically ventilated children [ 23 ], and two had a surgical focus [ 13 , 25 ]. Six studies related to a single diagnosis or symptom: Congenital Zika Syndrome [ 22 ], isolated Pierre-Robin sequence [ 15 ], laryngomalacia [ 16 ] and gastroesophageal reflux disease (GERD) [ 17 ], cerebral palsy [ 26 ], and prematurity [ 19 ]. The remaining 10 samples varied widely in terms of principal diagnosis [ 10 , 11 , 20 , 21 , 24 , 27 – 31 ] (Table 4 ).…”

“…Five studies indicated that the boluses evaluated were developmentally appropriate [ 11 , 17 , 28 , 29 , 31 ]. Standardized boluses were reported in seven protocols, four of which specified the type [ 21 , 24 , 27 , 32 ] and three the type and size of the boluses [ 10 , 22 , 30 ] (Table 6 ).…”

“…Direct assessment of swallowing Ulualp et al [ 31 ] NR; NR On the caregiver’s lap, upright b) Sensory testing (air pulse) 2. Direct assessment of swallowing Umay et al [ 32 ] Otolaryngologist; NR Highest possible upright sitting position 2. Direct assessment of swallowing (not reported in detail) Vetter-Laracy et al [ 19 ] Pediatrician; nurse On the caregiver’s lap, stabilized head during the procedure 1.…”

“…Liquids b. Variety of developmentally appropriate textures NR NR Umay et al [ 32 ] Fiberoptic, Storz, 3.4 NR NR a. Liquid (water) b. Semi-solid (thickened water) c. Solid (bread) Yes/NR NR Vetter-Laracy et al [ 19 ] Fiberbronchoscope (BF-XP 190), Olympus, 3.1 Lidocaine (2.5%) and prilocaine (2.5%) gel (Emla creme) NR a.…”