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Evaluation of swallowing pressure in patients with neuromuscular disorder using high-resolution manometry system
Abstracts 2016 / Neuromuscular Disorders 26 (2016) S88–S212 and intervention to these problems may have an important role in preventing swallowing disorders which can lead to dramatic clinical results. http://dx.doi.org/10.1016/j.nmd.2016.06.220
P.201 Awareness of caregivers about swallowing disorders in pediatric neuromuscular diseases H. Kılınç, O. Yılmaz, I. Alemdarog˘lu, N. Bulut, H. Topalog˘lu, A. Karaduman Hacettepe University, Ankara, Turkey Swallowing disorders are known to appear as functional status worsening in pediatric patients with neuromuscular disorders (NMDs). This study was planned to investigate awareness of caregivers on swallowing problems in NMDs. Thirty-eight pediatric patients with NMDs who have a risk of swallowing disorder but no complaints and their caregivers were included in the study. Swallowing functions were evaluated with clinical examinations.After recording the demographic information of caregivers, a questionnaire including queries about level of knowledge and awareness of caregivers on swallowing disorders was conducted. Aspiration risk was determined in 13 (34%) of patients as a result of clinical evaluations. Twenty-nine caregivers (66%) were determined to have insufficient knowledge on swallowing disorders and its outcomes. While only 2(5%) caregivers had a doubt about swallowing problem in their children, none of them received any professional help. No statistically significant correlation was found between educational status and knowledge level of caregivers on swallowing problems (p = 0.55, r = 0.099). However a positive, weak correlation was found between awareness and knowledge level of caregivers and aspiration risk in their patients (p = 0.03, r = 0.345). Awareness and knowledge level of caregivers about swallowing disorders in pediatric patients with NMDs were found to be insufficient in our study. Enhancing knowledge level of caregivers on swallowing disorder may lead to timely evaluation and intervention to swallowing problems in patients with NMDs. http://dx.doi.org/10.1016/j.nmd.2016.06.221
P.202 Evaluation of swallowing pressure in patients with neuromuscular disorder using high-resolution manometry system J. Suh 1, D. Park 2, H. Kim 1, C. Shin 1, J. Ryu 1 1 Seoul National University Bundang Hospital, Seongnam, Republic of Korea; 2 Daegu Fatima Hospital, Daegu, Republic of Korea This study aimed to evaluate the swallowing pressures of patients with neuromuscular disorder (NMD) by high-resolution manometry (HRM). Restrospective study. Twenty-four NMD patients and twenty healthy subjects participated in this study. The swallowing pressures were evaluated using HRM with 5 mL of thin fluid in both groups. Kinematics of deglutition was evaluated by videofluoroscopic swallowing study (VFSS) in the patient’s group. The swallowing pressure along the velopharynx, tongue base (TB), pre-upper esophageal sphincter (UES), low pharynx, cricopharyngeus and minimal UES pressure were measured using HRM. The area integral, rise time, duration of the velopharynx, TB, UES activity time and nadir UES duration were analyzed. The subglottic aspiration and the possibility of oral feeding were evaluated by VFSS. The maximum pressures of velopharynx (P = 0.028), TB (P = 0.001) and cricopharyngeus (P = 0.001) of the patient’s group were significantly lower than those of the healthy group. In addition, there were significantly negative correlation between subglottic aspiration with the rise time of the velopharynx, the area integral of TB and duration of TB. Furthermore, the possibility of oral feeding has negative correlation with the area integral of TB, time interval between onset of velopharynx and pre-UES peak, and time interval between onset of velopharynx and peak of low pharynx. This study shows that the swallowing pressures and time parameters by HRM can be used to evaluate the deglutition of patients with NMD. http://dx.doi.org/10.1016/j.nmd.2016.06.222
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P.203 Jellification of medicine after simple suspension method for muscular dystrophy patients with dysphagia H. Arahata 1, C. Ito 1, M. Sakai 1, G. Umemoto 2 1 Oomuta hospital, Omuta, Japan; 2 Fukuoka University, Fukuoka, Japan In drug therapy, to take drugs properly are important in order to expect therapeutic effects. When treating patients with dysphagia, there are many commercially available preparations and swallowing auxiliary jelly. But even with the use of these auxiliary jellies, separation of the drug granules was observed during swallowing. No administration methods for these patients with severe dysphagia have been established. In this study, we jellified medicine after simple suspension method (SS) in order to reduce the risk of aspiration. For jellifying, we used 1% dextrin and powered agar, which we traditionally eat as called “Kannten”. We chose agar to avoid water splitting. We examined the effect by both swallowing videofluorography (VF) and videoendoscopy (VE). VF and VE were done before and after jellification of medicine after SS and the method prevented aspiration in patients with muscular dystrophies. We suggest this method as one of the safe drug delivery for patients with severe dysphagia. http://dx.doi.org/10.1016/j.nmd.2016.06.223
P.204 The energetic study: Effectiveness of a self-management group programme to improve social participation in patients with neuromuscular disease and chronic fatigue Y. Veenhuizen 1, E. Cup 1, B. van Keulen 2, J. Groothuis 1, T. Feuth 1, B. van Engelen 1, A. Geurts 1 1 Radboud University Medical Center, Nijmegen, Netherlands; 2 Rehabilitation Center Klimmendaal, Arnhem, Netherlands Chronic fatigue is present in more than 60% of the patients with a neuromuscular disease and can be their most disabling symptom. Chronic fatigue often coincides with low levels of physical activity and decreased social participation. We have developed a self-management outpatient rehabilitation intervention for patients with a neuromuscular disease and chronic fatigue, called Energetic. This multidisciplinary group programme aims to alleviate fatigue, improve physical endurance and social participation. The aim of this study was to evaluate the effectiveness of Energetic. A multicentre, assessorblinded, two-armed randomised controlled trial was conducted. Assessments were made at inclusion, directly after intervention, and three and eleven months follow up. We included patients with a neuromuscular disease and chronic fatigue, and their caregivers. The participants were randomised (1:1) to either an intervention (‘Energetic’) or control (‘usual care’) group. Energetic covered four months and included four modules: (1) individually tailored aerobic exercise training; (2) education about aerobic exercise; (3) self-management training in applying energy-conservation strategies; and (4) implementation and relapse prevention in daily life. The primary outcome was the perceived performance score of the Canadian Occupational Performance Measure (COPM). Secondary outcomes included the COPM-satisfaction score, and measures of fatigue, physical endurance, activity engagement, mood, self-efficacy and caregiverburden. Fifty-three patients were included. There was significantly more improvement on COPM-performance, COPM-satisfaction, Checklist Individual Strength (CIS), CIS subscale-fatigue and 6-Minute Walk Test for the intervention group than the control group, adjusted for baseline COPM scores, gender, work and diagnosis. These results warrant further implementation of this multidisciplinary rehabilitation intervention in different settings. http://dx.doi.org/10.1016/j.nmd.2016.06.224
P.205 Implementation and process evaluation of the energetic study Y. Veenhuizen 1, E. Cup 1, T. Satink 2, J. Groothuis 1, B. van Engelen 1, M. Nijhuis-van der Sanden 1, A. Guerts 1
P.201 Awareness of caregivers about swallowing disorders in pediatric neuromuscular diseases H. Kılınç, O. Yılmaz, I. Alemdarog˘lu, N. Bulut, H. Topalog˘lu, A. Karaduman Hacettepe University, Ankara, Turkey Swallowing disorders are known to appear as functional status worsening in pediatric patients with neuromuscular disorders (NMDs). This study was planned to investigate awareness of caregivers on swallowing problems in NMDs. Thirty-eight pediatric patients with NMDs who have a risk of swallowing disorder but no complaints and their caregivers were included in the study. Swallowing functions were evaluated with clinical examinations.After recording the demographic information of caregivers, a questionnaire including queries about level of knowledge and awareness of caregivers on swallowing disorders was conducted. Aspiration risk was determined in 13 (34%) of patients as a result of clinical evaluations. Twenty-nine caregivers (66%) were determined to have insufficient knowledge on swallowing disorders and its outcomes. While only 2(5%) caregivers had a doubt about swallowing problem in their children, none of them received any professional help. No statistically significant correlation was found between educational status and knowledge level of caregivers on swallowing problems (p = 0.55, r = 0.099). However a positive, weak correlation was found between awareness and knowledge level of caregivers and aspiration risk in their patients (p = 0.03, r = 0.345). Awareness and knowledge level of caregivers about swallowing disorders in pediatric patients with NMDs were found to be insufficient in our study. Enhancing knowledge level of caregivers on swallowing disorder may lead to timely evaluation and intervention to swallowing problems in patients with NMDs. http://dx.doi.org/10.1016/j.nmd.2016.06.221
P.202 Evaluation of swallowing pressure in patients with neuromuscular disorder using high-resolution manometry system J. Suh 1, D. Park 2, H. Kim 1, C. Shin 1, J. Ryu 1 1 Seoul National University Bundang Hospital, Seongnam, Republic of Korea; 2 Daegu Fatima Hospital, Daegu, Republic of Korea This study aimed to evaluate the swallowing pressures of patients with neuromuscular disorder (NMD) by high-resolution manometry (HRM). Restrospective study. Twenty-four NMD patients and twenty healthy subjects participated in this study. The swallowing pressures were evaluated using HRM with 5 mL of thin fluid in both groups. Kinematics of deglutition was evaluated by videofluoroscopic swallowing study (VFSS) in the patient’s group. The swallowing pressure along the velopharynx, tongue base (TB), pre-upper esophageal sphincter (UES), low pharynx, cricopharyngeus and minimal UES pressure were measured using HRM. The area integral, rise time, duration of the velopharynx, TB, UES activity time and nadir UES duration were analyzed. The subglottic aspiration and the possibility of oral feeding were evaluated by VFSS. The maximum pressures of velopharynx (P = 0.028), TB (P = 0.001) and cricopharyngeus (P = 0.001) of the patient’s group were significantly lower than those of the healthy group. In addition, there were significantly negative correlation between subglottic aspiration with the rise time of the velopharynx, the area integral of TB and duration of TB. Furthermore, the possibility of oral feeding has negative correlation with the area integral of TB, time interval between onset of velopharynx and pre-UES peak, and time interval between onset of velopharynx and peak of low pharynx. This study shows that the swallowing pressures and time parameters by HRM can be used to evaluate the deglutition of patients with NMD. http://dx.doi.org/10.1016/j.nmd.2016.06.222
S147
P.203 Jellification of medicine after simple suspension method for muscular dystrophy patients with dysphagia H. Arahata 1, C. Ito 1, M. Sakai 1, G. Umemoto 2 1 Oomuta hospital, Omuta, Japan; 2 Fukuoka University, Fukuoka, Japan In drug therapy, to take drugs properly are important in order to expect therapeutic effects. When treating patients with dysphagia, there are many commercially available preparations and swallowing auxiliary jelly. But even with the use of these auxiliary jellies, separation of the drug granules was observed during swallowing. No administration methods for these patients with severe dysphagia have been established. In this study, we jellified medicine after simple suspension method (SS) in order to reduce the risk of aspiration. For jellifying, we used 1% dextrin and powered agar, which we traditionally eat as called “Kannten”. We chose agar to avoid water splitting. We examined the effect by both swallowing videofluorography (VF) and videoendoscopy (VE). VF and VE were done before and after jellification of medicine after SS and the method prevented aspiration in patients with muscular dystrophies. We suggest this method as one of the safe drug delivery for patients with severe dysphagia. http://dx.doi.org/10.1016/j.nmd.2016.06.223
P.204 The energetic study: Effectiveness of a self-management group programme to improve social participation in patients with neuromuscular disease and chronic fatigue Y. Veenhuizen 1, E. Cup 1, B. van Keulen 2, J. Groothuis 1, T. Feuth 1, B. van Engelen 1, A. Geurts 1 1 Radboud University Medical Center, Nijmegen, Netherlands; 2 Rehabilitation Center Klimmendaal, Arnhem, Netherlands Chronic fatigue is present in more than 60% of the patients with a neuromuscular disease and can be their most disabling symptom. Chronic fatigue often coincides with low levels of physical activity and decreased social participation. We have developed a self-management outpatient rehabilitation intervention for patients with a neuromuscular disease and chronic fatigue, called Energetic. This multidisciplinary group programme aims to alleviate fatigue, improve physical endurance and social participation. The aim of this study was to evaluate the effectiveness of Energetic. A multicentre, assessorblinded, two-armed randomised controlled trial was conducted. Assessments were made at inclusion, directly after intervention, and three and eleven months follow up. We included patients with a neuromuscular disease and chronic fatigue, and their caregivers. The participants were randomised (1:1) to either an intervention (‘Energetic’) or control (‘usual care’) group. Energetic covered four months and included four modules: (1) individually tailored aerobic exercise training; (2) education about aerobic exercise; (3) self-management training in applying energy-conservation strategies; and (4) implementation and relapse prevention in daily life. The primary outcome was the perceived performance score of the Canadian Occupational Performance Measure (COPM). Secondary outcomes included the COPM-satisfaction score, and measures of fatigue, physical endurance, activity engagement, mood, self-efficacy and caregiverburden. Fifty-three patients were included. There was significantly more improvement on COPM-performance, COPM-satisfaction, Checklist Individual Strength (CIS), CIS subscale-fatigue and 6-Minute Walk Test for the intervention group than the control group, adjusted for baseline COPM scores, gender, work and diagnosis. These results warrant further implementation of this multidisciplinary rehabilitation intervention in different settings. http://dx.doi.org/10.1016/j.nmd.2016.06.224
P.205 Implementation and process evaluation of the energetic study Y. Veenhuizen 1, E. Cup 1, T. Satink 2, J. Groothuis 1, B. van Engelen 1, M. Nijhuis-van der Sanden 1, A. Guerts 1