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The Development and Challenges of Chinese Pediatric Rehabilitation 中国儿童康复的发展与挑战,Xiaojie Li College of Medical Rehab Medicine,Jiamusi University Rehab Center for Child Cerebral Palsy, Heilongjiang province 李晓捷 佳木斯大学康复医学院 黑龙江省小儿脑瘫防治疗育中心,一、历史沿革 History,探索开创阶段80-90 Explore stage 普及拓展阶段90-00 Popularization development stage 快速发展阶段00-今 Rapid development stage,20世纪80年代:白内障复明手术、小儿麻痹后遗症矫治、聋儿语训 1980 s: cataract and polio sequela surgery , training for deaf children,“八五”期间:增加低视力儿童配用助视器、智力残疾康复训练等 “Eighth Five-year“ plan: increased low vision devices, mental rehab training,“九五”期间:增加了肢体残疾儿童矫治手术、残疾儿童辅助器具装配等 “Ninth five-year plan: Physical disability surgery, assistive devices,“十五”期间:提出到2015年残疾人“人人享有康复服务”的目标,包括残疾儿童 “Tenth five-year plan“:Put forward the goal of everyone get rehab services by 2015,“十一五”期间:加大对贫困残疾儿童康复的救助,提出“优先开展残疾儿童抢救性治疗和康复,对贫困残疾儿童给予补助,研究建立残疾儿童救助制度” “支持对06岁残疾儿童免费实施抢救性康复 “11th five-year plan“:Increase poverty rehab aid for, put forward “priority to develop rapid rehab,disabilities subsidies,assistance system,support for the disabled children aged 0 6 free rehab,“十二五”期间:大规模、全方位开展残疾儿童康复,注重残疾儿童康复制度建设,建立残疾儿童早预防、早筛查、早转介、早治疗、早康复的工作机制 Twelfth five-year plan: large-scale, comprehensive rehab ,the disabled children rehab system construction, establish early prevention, screening, referrals, treatment and rehab work mechanism,二、康复服务现状 Present situation of rehabilitation services,医院康复 Hospital-based rehabilitation (HBR),General hospital, rehab hospital/centre, maternity and child care hospital , childrens hospital (public and non public) 1000所,Institution-based rehabilitation (IBR),disabled persons federation, civil affairs, non public 1000所,Community-based rehabilitation (CBR),Began in the late 1980 205,000个?,机构康复,社区康复,Service way,Prevention and Treatmen of CP (for instance, in 12 provinces, 2013),79.67% could 19.93% could not,If it is possible to get diagnosis and treatment in time in local?,42.97% 综合医院 general hospitals 27.03% 妇婴医院 maternity and child care hospitals 20.31% 儿童医院 child hospitals 4.69% 康复医院/中心 rehab hospitals/centers 2.97% 残联系统康复中心 rehab centers in disabled persons federation system 1.88% 社区诊所 community clinics 0.16% 民政系统康复中心 rehab centers in civil administration system,place of diagnosis and treatment : general hospital maternity and child care hospital child hospital,Rehab training places 康复训练场所,34.58% 集中式康复 centralized 31.61% 社区或家庭 CBR 33.80% 集中式及社区 centralized +CBR,综合医院,妇婴医院,儿童医院,mainly centralized rehab,prevalence and Rehab Requirements of Special children,三、特殊儿童患病率及 康复需求状况,12 省/市 12 provinces/cities 北京 Beijing 河南 Henan 山东 Shandong 山西 Shanxi 陕西 Shannxi 安徽 Anhui 湖南 Hunan 广东 Guangdong 广西 Guangxi 重庆 Chongqin 青海 Qinghai 黑龙江 Heilongjiang 323,805 年龄 1-6岁 男 M 174,338 女 FM 149,467,1.脑性瘫痪 Cerebral Palsy 1-6 years old CP Epidemiological investigation (2013),distribution of children,Survey areas,Beijing,Shandong,Henan,Shanxi,Shannxi,Anhui,Hunan,Guangdong,Guangxi,Qinghai,Heilongjiang,Chongqin,发病率为 Incidence 2.48 (0.248%) 总患病率为 Prevalence 2.45 (0.245%) 青海患病率最高为 Highest prevalence was in Qinghai 5.40 (0.540%) 山东患病率最低为 the lowest was in Shandong 1.04 (0.104%) 随机进行两两比较, 任意两省患病率比较具有显著性差异 Random pairwise comparison, prevalence of any one province compared with another one has significantly different (p0.0001) 7岁儿童约1亿, 脑瘫 7Y,1Billion,CP 250万 (2,500,000) 114岁儿童约2亿,脑瘫 1-14Y,2Billion,CP 500万 (5,000,000) 按每年新生儿数量,新增脑瘫 newborn, new CP/Y 1600万,CP 4万/年 (16,000,000, CP 40,000/year),发病率及患病率 Incidence Prevalence,我国共有残疾儿童大约 817万人(0-14岁),也有报道900余万 8,170,000 disabled children (0-14 years old), or more than 9,000,000 视力残疾 18万 (visual disability 180,000) 听力残疾 116万 (hearing disability 1,160,000) 肢体残疾 539万 (Limb disability 5,390,000) 智力残疾 62万 (Mental retardation 620,000) 精神残疾 1.4万 (Psychiatric disability 14,000) 多重残疾 80万(Multiple disability 800,000) 占全国残疾人总数的15.8%,占全国儿童总数的2.66% 5.8% of the total number of disabled persons 2.66% of the total number of children 0-6岁残疾儿童约139.5万,每年新增近20万 Disabled children about 1,395,000(0-6) ,200,000/year,2.各类残疾儿童数量(近年) The population of children with disabilities (in recent years),3、发育障碍 Developmental disorders,孤独症 谱系障碍 autism spectrum disorder , ASD 164万?,全面性 发育落后 global developmental delay, GDD 左右,多重复杂 发育障碍 multiple complex developmental disorder, MCDD,发育指标 里程碑延迟 developmental delay/ delayed milestone 68 10%need reh.,精神 发育迟滞 mental retardation, MR ,发育性 协调障碍 developmental coordination disorders, DCD 58,4.儿童专科康复需求 Requirements of Rehab with Specialized subject 先天性心脏病康复 Congenital heart disease 重症新生儿康复 Severe neonatal 先天畸形康复 Congenital malformations 儿童骨科康复 Pediatric orthopaedic 遗传性代谢性疾病康复等Congenital immunodeficiency disease,Hereditary disease,康复机构收治病种的排序 The sorting of the rehab diseases in the institutions,康复需求量最多的仍以运动功能障碍为主 Most demand was movement disorder,the first 3 diseases,(111 institutions,2011),四、康复评定与技术应用情况(111 units) Application of assessment and therapy techniques,PT:10% 尚未掌握和熟练应用 Has yet to master and skilled application,OT: 20.41% 尚未掌握和应用, OT技术落后于PT Has yet to master and skilled application,ST: 22.41% 尚未掌握和应用,与OT相似 Has yet to master and skilled application,Psych. Rehab.: 59.46%尚未掌握和应用,比较薄弱 Has yet to master and skilled application,Surgery: 70%尚不能开展手术治疗,外科比较薄弱和稀少 Cannot carry out surgical treatment(手术要到外地),Orthoses: 70% 机构不能制作矫形器和辅助器具 Cant make orthoses and auxiliary equipment,Others: 感统、感知认知50%;4.5%乘马疗法;半数以上还不能开展其他的康复治疗 50% Sensory integration and cognitive perception; 4.5% Riding therapy; More than half cant carry out others,首部中国脑性瘫痪康复指南分期在中国康复医学杂志连续刊登 The first guidline of rehab for CP has been published in the journal 12省市自治区1-6岁儿童脑瘫流行病学调查/建立4个示范项目 11-6 years old CP Epidemiological investigation/ Set up 4 demonstration projects 拟定中国儿童康复治疗师资质认证及规范化培训相关文件 formulated Chinese pediatric rehab therapist qualification certification and standardization training related documents 更加重视循证医学依据,盲从性降低,仍有乱象 More emphasis on evidence-based medicine, reduced blindness, there is a certain degree confusions 更加重视综合康复,成果逐渐展现;跨学科、多专业联合康复已开始,仍不成熟与完善,团队合作仍有脱节 Pay more attention to comprehensive rehab; More professional joint rehab ; Still not mature and perfect and there is still disconnect of team cooperation,发展现状概要 General situation of development,康复服务遍及包括西藏在内全国各地,发展不均衡(地区间、城乡间、系统间) Rehab services throughout all over the country, including Tibet, Imbalance of development( egions, urban and rural areas, systems) 技术、方法日臻成熟,专业团队形成,人才素质日益提高,仍有较大缺口和差距 Gradually maturing of Technologies, Formed a professional team, Talent is increasing, There is still a big gap compared with developed countries. 观念转变、政策利好、条件改善、学术交流活跃,国际合作项目增加,仍不均衡 Conceptual changing, good policies,conditions improveing,activities of academic communication, international cooperation projects Increasing, Still not balanced 中西医结合广为开展,尚存问题 Combine traditional Chinese and western medicine widely carried out, remaining the problems 康复服务远不能满足需求 Rehab services far from the demands (设施高质量、普及性;技术与队伍;社区康复覆盖面;教育;医疗、残联、民政、教育四大系统合作等) (facilities, high quality, popularity;Technology and the team;CBR coverage;education;cooperation among Medical, disabled persons federation, civil affairs and education systems , etc.),五、目前儿童康复治疗相关 争议、难点或亟待解决的问题(脑瘫为例) Related disputes, the difficulties or problems (for example of CP),关于神经干细胞移植问题 Neural stem cell transplantation 关于高压氧、体外反搏应用问题 Hyperbaric oxygen, external counterpulsation 关于避免脑瘫诊断扩大化问题 diagnosis of expansion of CP 关于早期干预问题(评定、指征、方法)Early intervention 关于质量控制、目标管理问题 Quality control, management by objectives 关于如何开展医教结合康复问题 Medical combination with education 关于规范的康复技术应用问题 Specification of rehab technology application 关于中西医结合治疗问题 Combine traditional Chinese and western medicine 关于规范应用辅助器具和技术问题 Equipment and technology 关于规范用药问题 Standard medication 关于手术治疗问题 The surgical treatment 关于ICFCY的应用问题 The application of ICF - CY 关于康复护理与管理问题 Rehab care and management,高压氧治疗主要适应症 The main indications CO中毒、气栓症、减压病、脑水肿、冠心病、缺血性脑血管疾病、脑外伤等 CO poisoning,Air embolism syndrome,Decompression sickness,Brain edema,CHD,Ischemic cerebrovascular disease, brain trauma,1.高压氧Hyperbaric oxygen,1.对于足月新生儿缺氧缺血性脑病、脑外伤予以推荐(B级) For full-term newborn hypoxia ischemic encephalopathy, cerebral trauma, recommended(Recommended level B) 2.高压氧对于未成熟儿的视网膜和肺支气管发育有一定的影响,不予推荐(B级) Hyperbaric oxygen has a certain influence for immature of the retina and bronchial lung development,not recommended(level B),脑瘫指南 第二章 高危儿评定与干预 The guidline of CP The second chapter recommendations,高压氧治疗脑瘫存在争议,研究结果证实其无助于脑瘫患儿的治疗效果,存在癫痫及听力损害的患儿更不推荐应用该疗法,其副作用不详(B级) There is controversial, the results confirmed it will not help the curative effect of CP, especially not recommend applied to children with epilepsy and hearing impairment,the side effects is unknown (Recommended level B),脑瘫指南 第四章 脑性瘫痪的康复治疗 The guidline of CP The fourth chapter of cerebral palsy rehab treatment recommendations,提高主动脉舒张压,增加冠状动脉的灌注 Aortic diastolic blood pressure, increased coronary artery perfusion,驱使远端动脉序贯式的反流 Drives the distal artery sequential reflux,包扎在四肢及臀部的气囊充气 Dressing in the limbs and hip balloon inflated,心脏舒张时,通过心电R波同步触发 Diastolic when, through the ecg R wave synchronous trigger,无创性的机械辅助循环装置 Noninvasive mechanical assisted circulation device,2.体外反搏 (External Counter PulsationECP) Mechanism of action,因与心脏收缩相反称为“体外反搏” Because contrary to cardiac contraction-ECP,提高主动脉舒张压、降低收缩压 增加侧支循环 增加心排出量,(1)应用ECP治疗冠心病、心绞痛疗效确切,国外无应用于脑瘫的文献 for treatment of coronary heart disease, no applied for CP in abroad (2)无ECP治疗CP的基础研究 No ECP basic research for the treatment of CP (3)ECP治疗CP的临床研究中 clinical research for the treatment of CP 个别研究、样本量小、缺少随机对照研究或不确定 Individual study, small sample size, lack of randomized controlled studies 无科学严谨的实验设计及一致的疗效判定标准 No scientifically rigorous design and the curative effect of consistent standards,目前研究存在的主要问题 ECP The main problems of the present study,应对措施 Solutions,(1)CP动物模型开展ECP治疗脑瘫的实验室研究 Animal studies (2)已经应用ECP的单位建立协作组,开展临床研究(统一设计) Collaboration of clinical studies (3)已经应用ECP的单位不建议常规应用 Do not recommend routine applications (4)尚未开展ECP治疗的单位,不建议临床应用 Do not recommend in clinical application for has not yet applied ECP treatment,3.神经干细胞移植 transplantation of neural stem cells, NSCs 具有自我更新和多向分化潜能的一类细胞,在适当条件下可分化为 神经元、星形胶质细胞、少突胶质细胞,神经干细胞移植的英文文献 English literature,共检索 67篇 ;检索数据库:ovid数据库 检索关键词:Neural stem cells;transplantaion 20052015年,所查文献均为基础型研究,分类如下: 脊髓损伤:Spinal cord injury 21篇 脑卒中:stroke 23篇 脑损伤:Brain damage11篇 帕金森病:Parkinsons disease 4篇 周围神经损伤:Peripheral nerve injury 2篇 神经性疼痛:Neuropathic pain 2篇 肌萎缩侧索硬化症:Muscle atrophy amyotrophic lateral sclerosis 2篇 多发性硬化:Multiple sclerosis 1篇 神经元腊样脂褐质沉积症:neuronal ceroid lipofuscinosis,NCL 1篇 未检索到关于脑性瘫痪的文献 Did not fined English article with the study of Neural stem cells for CP,神经干细胞移植的中文文献 Chinese literature,共检索到相关中文文献 255 篇 检索数据库:中国知网数据库;检索词:神经干细胞、移植;检索文献类型:基础研究、临床研究;检索文献时限:2005年-2015年,脑瘫研究 CP research (临床14:Methods1-级、1-级;Security2-级、1-级;Visual2-级 疗效Effect 7-级)(基础Basis2:模型model?结果不确定The results not sure),1.基础研究 Basic research (1)无脑瘫研究 Animal model? (2)未见灵长类动物脑瘫模型 primates? (3)缺少共患病及合并症模型建立及研究 Comorbidities and complications? (4)缺少对神经干细胞来源、移植途径的对照研究 Source, way of transplantation of control study? 2.临床研究 clinic research (1)无对功能改善随机对照、对照研究Function improved randomized, controlled study? (2)无长期追踪观察研究Long-term tracking? (3)缺少疗效判定方法的研究 Efficacy determination methods? (4)干细胞来源不一、移植途径不一,缺少安全性、标准化研究和对照研究 Different sources, different transplantation ways, lack of security, standardization and contrast research?,目前存在的问题 The existing problems,3.其他问题 Other problems (1)增加肿瘤的发生率? tumor? (2)适应症和禁忌症? Indications and contraindications? (3)产品标准化? Product standardization? (4)移植频率、移植时机、移植途径?Frequency, timing and approach? (5)异体移植,存在免疫排斥反应? Immune rejection? (6)定向诱导分化? Directional differentiation? (7)促进快速增殖? The rapid proliferation? (8)疗效的标准如何评价? standard of effect? (9)伦理、道德? Ethical and moral?,1.禁止神经干细胞移植应用于脑瘫治疗 Should not be used in CP treatment at present 2.着手开展包括标准化的脑瘫动物模型建立以及神经干细胞移植的动物实验(灵长类动物)Experiments on animals 3.对已经接受神经干细胞移植的脑瘫患儿,联合开展追踪观察及相关研究(统一方案)Tracking observation and related research 4.采取多种形式,开展宣传教育 To carry out publicity and education 5.专题性学术活动(研讨会)Unique academic activities,策略的选择 The choice of strategy,4. 其他康复治疗技术 Other treatments (controversies),(1)颅内立体定向核团损毁术 Intracranial stereotactic nucleus damage,最佳适应症是原发性肌张力障碍患者,不随意运动型脑瘫患儿应谨慎选择 Should be careful to choose,治疗儿童肌张力障碍-不随意运动型CP的效果低于其它锥体外系病变(如帕金森氏病、扭转痉挛等)Less effective than other extrapyramidal disease,(3)迷 走 神 经 孤 立 术 The vagus nerve isolated operation,*用于难治性混合型脑瘫,取得了一定的疗效,总体效果不能令人满意 The overall effect is not satisfactory,(4) 选择性周围神经切断术 Selective peripheral neurotomy,*术后即刻和早期的疗效明显,长期效果?*神经再生是术后复发的重要原因? *术后是否坚持长期正确的康复训练? Long-term effects? Recurrence after surgery? Rehabilitation training?,(2)脑深部电刺激术 Deep brain stimulation,神经核团立体定向毁损?Intracranial stereotactic nucleus damage? 动脉外膜剥脱术、迷走神经孤立术?The vagus nerve isolated operation?,周围神经微创手术(Selective peripheral neurotomy,SPN) 是保守治疗无效痉挛型脑瘫的治疗选择(D级) Treatment options,conservative treatment is invalid (D),选择性脊神经后跟切断术(SPR/SDR) 3-8岁、GMFCS III-IV级下肢痉挛脑瘫治疗的一种选择,但应严格掌握适应症(A级) 3-8 years old, GMFCS level III - IV ,a choice of lower limb spasm, should be strictly grasp the indications(A),巴氯芬鞘内注射(intrathecal baclofen therapy, IBT) 巴氯芬鞘内注射是严重痉挛型脑瘫儿童治疗的一种选择(B级) a choice of severe spastic CP (B),中国脑性瘫痪康复指南(2015) Chinese guidlin of CP recommendation,(6)其他康复治疗 Other rehab therapy (Shortcomings and problems),心理治疗开展较少,缺少专业治疗师 Psychological treatment is less, lack of professional therapist 游戏治疗开展较多,医疗单位开展不够好 Play therapy in more, medical units to conduct not good enough 娱乐治疗开展较多,医疗单位开展不够好 Recreative therapy in more, medical units to conduct not good enough 音乐治疗起步阶段,大多未开展 Music therapy is begining, most did not carry out 马术治疗个别开展,缺少条件 Riding therapy individual, the lack of conditions 辅助器具与矫形器普遍开展,应用不足或过度 orthoses widely developed, the application is insufficient or excessive 传统康复治疗普遍开展,中西医结合欠缺 Traditional rehab therapy in generally, combine traditional Chinese and western medicine is deficiency 康复管理与护理有所开展,尚未普及且水平较低 Management and nursing is developed, underdeveloped and lower levels 教育及医教结合尚未普及,缺少有效机制 Education , Medicine and education combined has not been popular, the lack of effective mechanism,儿童康复医师 Pediatric rehab doctor (2011) 1.来源以其他相关专业为主,康复医学专业来源比例仅占29.37% source:other related professionals, only 29.37% of rehab sources 2.学历本科及研究生学历大约各占50% education background: 50% each undergraduate and graduate degrees 3.职称高、中、初级职称比例约各占1/3 The titles: High, medium and primary each accounted for 1/3,儿童康复治疗师 Pediatric rehab therapists (2015) 1.年龄80后或90后出生占90% age-90% born in after 80th or 90th 2.职称初级和中级职称者50%,40%为相关专业职称系列 professional title-50% primary and intermediate title,40% for the relevant professional title series 3.学历70%为专科及以下,本科不足30%,研究生仅占1.60% education background- 70% Specialty and under,40% Undergraduate,1.60% graduate 3.职业来源50%康复治疗学或康复治疗技术,50%来源于其他职业 Professional sources-50% rehab or rehab technology, 50% other professionals 4.从事6年以下工作占70% experience 70% less than 6 years works,队伍十分年轻,缺少成熟经验,专业基础较为薄弱,与发达国家差距较大
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