Justine Joan Sheppard

Dysphagia in children with severe generalized cerebral palsy and intellectual disability

This study assessed the clinical indicators and severity of dysphagia in a representative sample of children with severe generalized cerebral palsy and intellectual disability. A total of 166 children (85 males, 81 females) with Gross Motor Function Classification System Level IV or V and IQ<55 were recruited from 54 daycare centres. Mean age was 9 years 4 months (range 2y 1mo–19y 1mo). Clinically apparent presence and severity of dysphagia were assessed with a standardized mealtime observation, the Dysphagia Disorders Survey (DDS), and a dysphagia severity scale. Additional measures were parental report on feeding problems and mealtime duration. Of all 166 participating children, 1% had no dysphagia, 8% mild dysphagia, 76% moderate to severe dysphagia, and 15% profound dysphagia (receiving nil by mouth), resulting in a prevalence of dysphagia of 99%. Dysphagia was positively related to severity of motor impairment, and, surprisingly, to a higher weight for height. Low frequency of parent‐reported feeding problems indicated that actual severity of dysphagia tended to be underestimated by parents. Proactive identification of dysphagia is warranted in this population, and feasible using a structured mealtime observation. Children with problems in the pharyngeal and esophageal phases, apparent on the DDS, should be referred for appropriate clinical evaluation of swallowing function.

The dysphagia disorder survey: validation of an assessment for swallowing and feeding function in developmental disability.

Swallowing and feeding disorder (dysphagia) have high incidence and prevalence in children and adults with developmental disability. Standardized screening and clinical assessments are needed to identify and describe the disorder. The aim of this study was to describe the psychometric properties of the Dysphagia Disorder Survey (DDS), a screening and clinical assessment of swallowing and feeding function for eating and drinking developed specifically for this population. The statistical analysis was performed on a sample of 654 individuals (age range 8-82) with intellectual and developmental disability living in two residential settings in the United States that served somewhat different populations. The two samples had similar factor structures. Internal consistency of the DDS and subscales was confirmed using Chronbachs coefficient alpha. The DDS demonstrated convergent validity when compared to judgments of swallowing and feeding disorder severity made by clinical swallowing specialists. Discriminative validity for severity of disorder was tested by comparing the two samples. The results of the study suggest that the DDS is a reliable and valid test for identifying and describing swallowing and feeding disorder in children and adults with developmental disability.

Managing dysphagia in mentally retarded adults.

Mentally retarded adults with dysphagia are a chronically disabled population with high incidence of co-occurring gastrointestinal and respiratory disorders. Their ability to achieve and maintain optimal functional adequacy of swallow is dependent on medical and nutritional management of the disorder, as well as on improving the swallow itself. This paper presents a dysphagia management protocol for this population, which includes screening to identify at risk individuals, diagnostic evaluation of dysphagia, daily management to promote optimal mealtime function, and dysphagia therapy to improve underlying neuromotor competency and eating skills.

Understanding mealtime changes for adults with cerebral palsy and the implications for support services

Abstract Background Changes in the swallowing capabilities of adults with cerebral palsy as they age may impact on their health, safety, and well-being. Method Thirty-two adults with cerebral palsy aged between 30 and 69 years participated in in-depth interviews about their experiences of changes in their swallowing and related management of their mealtimes within the last two years. A constant comparative qualitative analysis of the interviews elucidated the changes they experienced. Results Changes included increased coughing and choking, digestive or gastro-oesophageal symptoms, diet modification, loss of independence with psychosocial consequences. Participants reported unsatisfactory collaboration with service providers over mealtime management decisions and interventions. Conclusions Adults with cerebral palsy may experience gradual changes in their swallowing and mealtime capabilities from as early as 30 years of age. Regular collaborative assessment and involvement of all stakeholders in decisions are important to facilitate compliance with recommendations, ongoing safety, and optimal well-being.

Nutritional correlates of dysphagia in individuals institutionalized with mental retardation

We report on a study of the relationships between swallowing adequacy in institutionalized, severely and profoundly retarded subjects and selected nutritional status and nutritional risk factors. Dysphagic persons differed from nondysphagic persons with respect to an index of body mass, need for therapeutic diets, and frequency of selected illnesses and disorders. There were no differences in serum iron and protein levels or intake factors that included food allergy restriction and medications associated with dysphagia. Body mass index was the best predictor of severity of dysphagia in this population.

A telehealth approach to conducting clinical swallowing evaluations in children with cerebral palsy

BACKGROUND Accurate and timely evaluation of dysphagia in children with cerebral palsy (CP) is critical. For children with limited access to quality healthcare, telehealth is an option; however, its reliability needs to be investigated. AIM To test the reliability of an asynchronous telehealth model for evaluating dysphagia in children with CP using a standardized clinical assessment. METHODS AND PROCEDURES Nineteen children (age range 6.9-17.5) were assessed at three mealtimes via the Dysphagia Disorder Survey (DDS) by three clinicians (face-to-face evaluations). Mealtimes were video-recorded to allow asynchronous evaluations by a remote clinician who also completed approximately 1/3 of face-to-face evaluations. Agreement was tested on DDS variables and dysphagia severity. OUTCOMES AND RESULTS Results revealed substantial to excellent agreement between face-to-face and remote assessments by the same rater (78-100%, KW=0.64-1) on all, but two variables (oral transport and oral pharyngeal swallow) and by different raters (69-89%, KW=0.6-0.86) on all but one variable (orienting). For dysphagia severity, intrarater agreement was excellent (100%, KW=1); interrater agreement was substantial (85%; KW=0.76). CONCLUSIONS AND IMPLICATIONS Asynchronous clinical swallowing evaluations using standardized tools have acceptable levels of agreement with face-to-face evaluations, and can be an alternative for children with limited access to expert swallowing care.

A call for dysphagia-related safety incident research in people with developmental disabilities

School of Humanities and Social Science, The University of Newcastle, Callaghan, Australia, School of Health and Social Development, Deakin University, Melbourne, Australia, Teachers College, Columbia University, New York, USA, Centre for Health Systems and Safety Research, Australian Institute for Health Information, Macquarie University, Sydney, Australia, and Department of Public Health, La Trobe University, Melbourne, Australia

Telepractice for Pediatric Dysphagia: A Case Study

A closed-ended intensive pediatric swallowing telepractice program was developed and piloted in one pediatric patient with Opitz BBB/G and Asperger’s Syndromes, oropharyngeal dysphagia and aerophagia. The present study is a case report. Outcome variables included behavioral, swallowing and quality of life variables, and were assessed at baseline and at the end of the four-week program. Selective variables were also assessed at a follow-up family interview four weeks post program completion. Over the four-week intervention period, the patient demonstrated substantial improvements in: oral acceptance of eating-related objects and a variety of foods (behavioral variable), timing of voluntary saliva swallows and aerophagia levels (swallowing variables) and quality of life. Follow-up interview analysis showed that most skills were retained or improved one-month post intervention. This intensive telepractice program proved to be feasible and effective for this pediatric patient with dysphagia.

Dysphagia in Infantile Cortical Hyperostosis (Caffey s Disease): a Case Study

A four‐month‐old infant was treated for dysphagia associated with infantile cortical hyperostosis (Caffeys disease). Prolonged nutritional support was by nasal or gastrostoma intubation; therapeutic oral feeding was continued. This approach encouraged the development of oral feeding skills, infant‐parent bonding and experience of oral satisfactions. The facial skeleton is the most frequent site of involvement in hyperostosis, and dysphagia is a typical component, usually signaled by refusal of food and failure to thrive.

Feasibility of implementing oral health guidelines in residential care settings: views of nursing staff and residential care workers

PURPOSE To determine the views of nurses and on the feasibility of implementing current evidence-based guidelines for oral care, examining barriers and facilitators to implementation. RESULTS This mixed-methods study involved an online survey of 35 nurses and residential care workers, verified and expanded upon by one focus group of six residential care workers. Results reflected that nurses and residential care workers (a) have little or no training in recommended oral care techniques, and (b) lack access to the equipment and professional supports needed to provide adequate oral care. Basic oral care might be performed less than once per day in some settings and patients with problematic behaviours, dysphagia, or sensitivities associated with poor oral health might be less likely to receive oral care. While lack of time was highlighted as a barrier in the survey findings, focus group members considered that time should not be a barrier to prioritising oral care practices on a daily basis in residential care settings. CONCLUSION There are several important discrepancies between the recommendations made in evidence-based guidelines for oral care and the implementation of such practices in residential care settings. Nursing and residential care staff considered adequate oral care to be feasible if access, funding and training barriers are removed and facilitators enhanced.