Kamal Sakinah, Hamzaid Nur Hana, Kamaralzaman Sazlina, Sharma Shobha, Jaafar Nurul Hazirah, Chern Phei Ming, Hassan Nurul Izzaty, Toran Hasnah, Ismail Noor Akmal Shareela, Yusri Ghazali
Center for Rehabilitation and Special Needs Studies, Faculty of Health Sciences, National University of Malaysia (UKM), Kuala Lumpur, Malaysia.
Dietetics Program, Faculty of Health Sciences, National University of Malaysia (UKM), Kuala Lumpur, Malaysia.
Transl Pediatr. 2023 Sep 18;12(9):1601-1618. doi: 10.21037/tp-23-195. Epub 2023 Sep 14.
Individuals with severe cerebral palsy (CP) often experience various health issues, including feeding difficulties, which can adversely affect their nutritional status and caregivers' quality of life, e.g., more time spent for feeding rather than own selfcare. This study aimed to determine the prevalence of poor nutritional status among individuals with severe CP and explore its role as predictors for caregivers' quality of life.
This cross-sectional study was conducted in a government hospital (Cheras Rehabilitation Hospital), Community-Based Rehabilitation (CBR) Program, and Spastic Centre [non-profit organization (NGO)] in Klang Valley, Malaysia. Seventy-one participants with Gross Motor Function Classification System (GMFCS) level IV and V were recruited. Sociodemographic data, health-associated data, and anthropometric data were collected. Caregivers' quality of life was assessed using the Pediatric Quality of Life Inventory (PedsQL) CP module version 3.0 which included domains such as Movement and Balance, Eating Activities, and School Activities.
Most participants were males (60.6%), with 61 classified as level IV in the GMFCS classification. According to the Eating and Drinking Ability Classification System (EDACS), 59 children were at level IV. In total, 40.8% were underweight according to CP growth chart and 49.3% had mid-upper arm circumference (MUAC) readings below the 5 percentile. The lowest scores in the PedsQL CP module version 3.0 were observed in the Daily Activities (5.34±10.87), and School Activities domains (8.15±18.65). Sociodemographic and anthropometric data, including body mass index (BMI)-for-age, MUAC, body fat, triceps, and subscapular skinfold measurement, were predictors for the School Activities domain [F (11, 44)=3.981, P<0.005, R=0.499].
Poor nutritional status in individuals with severe CP has been shown to negatively impact caregivers' quality of life. Therefore, a multidisciplinary approach involving nutritional intervention is essential to improve dietary provision and the nutritional status of children with CP.
重度脑瘫（CP）患者常面临各种健康问题，包括进食困难，这会对他们的营养状况及照顾者的生活质量产生不利影响，例如喂食时间增加而减少了自我照顾时间。本研究旨在确定重度脑瘫患者中营养不良状况的患病率，并探讨其作为照顾者生活质量预测因素的作用。
本横断面研究在马来西亚巴生谷的一家政府医院（蕉赖康复医院）、社区康复（CBR）项目及痉挛中心[非营利组织（NGO）]开展。招募了71名粗大运动功能分类系统（GMFCS）为IV级和V级的参与者。收集了社会人口学数据、健康相关数据及人体测量数据。使用儿童生活质量量表（PedsQL）脑瘫模块3.0版评估照顾者的生活质量，该量表包括运动与平衡、进食活动及学校活动等领域。
大多数参与者为男性（60.6%），GMFCS分类中有61人被归类为IV级。根据饮食能力分类系统（EDACS），59名儿童为IV级。根据脑瘫生长图表，共有40.8%的人体重过轻，49.3%的人上臂中部周长（MUAC）读数低于第5百分位数。在PedsQL脑瘫模块3.0版中，日常活动领域（5.34±10.87）和学校活动领域（8.15±18.65）的得分最低。社会人口学和人体测量数据，包括年龄别体重指数（BMI）、MUAC、体脂、三头肌及肩胛下皮褶测量值，是学校活动领域的预测因素[F（11, 44）=3.981，P<0.005，R=0.499]。
重度脑瘫患者的营养不良状况已被证明会对照顾者的生活质量产生负面影响。因此，采用包括营养干预在内的多学科方法对于改善脑瘫儿童的饮食供应和营养状况至关重要。
