Ebru UMAY, İbrahim GÜNDOĞDU, Erhan Arif ÖZTÜRK

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

The caregivers of children with cerebral palsy (CP) have high mood disordersand stress levels. This study was aimed to conduct validity and reliability ofTurkish version of The Pediatric Feeding and Swallowing Disorders FamilyImpact Scale (PFSDFIS) by using an objective method. This study wasperformed in our physical medicine and rehabilitation (PMR) clinic betweenJuly 2016 and July 2018. This study was performed with 251 children withCP who had complaint of swallowing and/or feeding problems, and theirprimer caregivers. Cronbach’s alpha and corrected item-total correlationswere used to assess internal consistency. Test and retest reliability studieswere also conducted. The construct validity was assessed using the dysphagialevel defined with flexible fiberoptic endoscopic evaluation of swallowing andImpact on Family Scale (IFS). Total score of T-PFSDFIS was correlated to thedysphagia level by using FEES. Results showed, Cronbach's alpha value ofthe scale to be 0.821. Corrected item-to-total correlations ranged from 0.729to 0.911. Test-retest reliability coefficients was calculated with intra-classcorrelation coefficient (ICC), the total score was 0.989. A negative significantgood level correlation was found between the dysphagia level by usingendoscopic evaluation and the T- PFSDFIS total score as well as between totalscores of IFS and T-PFSDFIS. In subgroup analysis; the lowest value was innormal swallowing and significantly different from all dysphagia levels. Inconclusion; this scale is effective in reflecting the influence of caregivers onthe severity of dysphagia measured objectively and T-PFSDFIS is a valid andreliable scale for Turkish children with CP.

PDF

___

1. Stavsky M, Mor O, Mastrolia SA, Greenbaum S, Than NG, Erez O. Cerebral palsy-trends in epidemiology and recent development in prenatal mechanisms of disease, treatment, and prevention. Front Pediatr 2017; 5: 21.

2. Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy. Dev Med Child Neurol Suppl 2007; 109: 8-14.

3. Strauss D, Brooks J, Rosenbloom L, Shavelle R. Life expectancy in cerebral palsy: an update. Dev Med Child Neurol 2008; 50: 487-493.

4. Cowpe Jebson E, Hanson B, Smith CH. What do parents of children with dysphagia think about their MDT? A qualitative study. BMJ Open 2014; 4: e005934.

5. Chambers HG, Chambers JA. Effects of caregiving on the families of children and adults with disabilities. Phys Med Rehabil Clin N Am 2015; 26: 1-19.

6. Lagos-Guimarães HNC, Teive HAG, Celli A, et al. Aspiration pneumonia in children with cerebral palsy after videofluoroscopic swallowing study. Int Arch Otorhinolaryngol 2016; 20: 132-137.

7. Ballantyne M, Leslie P, Redle E. Paediatric dysphagia, parenting stress and feeding tubes. J Oral Health Dent 2017; 1(S1): A0012.

8. Serdaroğlu A, Cansu A, Ozkan S, Tezcan S. Prevalance of cerebral palsy in Turkish children between the ages of 2 and 16 years. Dev Med Child Neurol 2006; 48: 413-416.

9. Erkin G, Delialioglu SU, Ozel S, Culha C, Sirzai H. Risk factors and clinical profiles in Turkish children with cerebral palsy: analysis of 625 cases. Int J Rehabil Res 2008; 31: 89-91.

10. Aydin K; Turkish Cerebral Palsy Study Group. A multicenter cross-sectional study to evaluate the clinical characteristics and nutritional status of children with cerebral palsy. Clin Nutr ESPEN 2018; 26: 27-34.

11. Umay E, Unlu E, Cakci A. Psychological status and quality of life of caregivers of children with dysphagic cerebral palsy. Research 2014; 1: 768.

12. Redle EE. The Pediatric Feeding and Swallowing Disorders Family Impact Scale: Scale Development and Initial Psychometric Properties. Unpublished Dissertation, University of Cincinnati, Cincinnati, 2007.

13. Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine (Phila Pa 1976) 2000; 25: 3186-3191.

14. Warnecke T1, Teismann I, Oelenberg S, et al. Towards a basic endoscopic evaluation of swallowing in acute stroke–identification of salient findings by the inexperienced examiner. BMC Med Educ 2009; 9: 13.

15. Stein RE, Riessman CK. The development of an impact-on-family scale: preliminary findings. Med Care 1980; 18: 465-472.

16. Bowling A. Quality of life: measures and meanings in social care research. Methods Review 16. NIHR School for Social Care Research, London 2014: 13-21.

17. Bland JM, Altman DG. Statistical methods for assessing agreement between two methods of clinical measurement. Lancet 1986; 8476: 307-310.

18. Pousada M, Guillamón N, Hernández-Encuentra E, et al. Impact of caring for a child with cerebral palsy on the quality of life of parents: A systematic review of the literature. J Dev Phys Disabil 2013; 25: 545-577.

19. Park EY, Nam SJ. Time burden of caring and depression among parents of individuals with cerebral palsy. Disabil Rehabil 2019; 41: 1508-1513.

20. Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P. The PedsQL family impact module: preliminary reliability and validity. Health Qual Life Outcomes 2004; 2: 55.