专业人员指导下孤独症谱系障碍儿童家长执行的家庭康复疗效观察的前瞻性研究

目的 探讨专业人员指导下,由家长执行的家庭康复对孤独症谱系障碍（autism spectrum disorder,ASD）儿童的治疗作用。 方法 前瞻性选取ASD儿童60例（月龄24~60个月）,随机分为观察组和常规组。常规组儿童仅对家长进行线上理论培训。观察组儿童家长,除线上理论培训外,还进行专业人员团队指导下由家长执行的家庭康复。采用心理教育评估第3版（Psycho-Education Profile Third Edition,PEP-3）、儿童期孤独症评定量表（Childhood Autism Rating Scale,CARS）评估两组儿童干预前、干预后能力变化情况。 结果 经6个月干预后,观察组PEP-3量表各维度和常规组大部分维度得分较干预前提高（P<0.01）;两组CARS量表得分较干预前降低（P<0.05）。与常规组相比,干预后观察组儿童PEP-3量表语言理解、语言表达、大肌肉、小肌肉、个人自理、适应行为维度得分提高（P<0.05）,CARS量表得分降低（P<0.05）。 结论 对家长培训,由家长执行的干预可以提升ASD儿童的能力,改善其核心临床症状;但以专业人员组成的团队为资源平台,以家长为主要干预力量的家庭康复服务模式,对提升ASD儿童语言、运动等能力,改善其症状严重程度的效果更为显著。     

青少年抑郁情绪及自杀意念与父母教养方式之间的关联研究

目的 研究青少年抑郁情绪及自杀意念与父母教养方式之间的关系。 方法 采用整群抽样法,于2014~2018年抽取河南省新乡市6 195名初高中生进行调查研究。调查工具包括一般社会资料问卷、父母教养方式问卷及Kutcher青少年抑郁量表（11项）。采用多因素logistic回归分析评估青少年抑郁情绪及自杀意念与父母教养方式之间的关联。 结果 有效问卷为6 194份,其中男性2 586名（41.75%）,女性3 608（58.25%）;年龄（16.4±1.9）岁（范围：11~20岁）。在6 194名青少年中,1 333名（21.52%）青少年有抑郁情绪,508名（8.20%）青少年有自杀意念。青少年的抑郁情绪与母亲的控制（OR=1.059,P<0.001）和父亲的控制呈明显正关联（OR=1.061,P<0.001）,而与母亲的关爱（OR=0.937,P<0.001）和父亲的关爱（OR=0.917,P<0.001）呈明显负关联。青少年的自杀意念与母亲的控制（OR=1.110,P<0.001）和父亲的控制（OR=1.076,P<0.001）呈明显正关联,而与母亲的关爱（OR=0.895,P<0.001）和父亲的关爱（OR=0.914,P<0.001）呈明显负关联。 结论 父母的关爱可降低青少年抑郁情绪的发生风险,而父母控制性可增加青少年抑郁情绪及自杀意念的发生风险。 引用格式:     

117例儿童脊髓性肌萎缩症自然病史分析

目的 对重庆及周边地区脊髓性肌萎缩症（spinal muscular atrophy,SMA）的自然病史进行分析,为开展SMA的综合管理、基因修饰治疗提供临床依据。 方法 回顾性分析117例SMA患儿的临床资料及生存现状。 结果 117例患儿中,1型SMA 62例（53.0%）、2型45例（38.5%）、3型10例（8.5%）,中位起病年龄分别为2、10、15月龄。1型SMA起病、就诊、确诊时间均早于2、3型SMA（P<0.05）,1型SMA就诊时间窗（起病年龄至就诊年龄）短于2、3型SMA（P<0.05）。肺炎为首发症状、抬头无力、哭声无力、进食费力多见于1型SMA（P<0.05）,2型SMA脊柱侧弯和下肢关节挛缩发生率高于1型（P<0.05）。117例（100%）SMA患儿均为SMN1基因纯合缺失,其中以7号外显子纯合缺失最常见（68.4%,80/117）。1型SMA的6年生存率仅为10%±5%,低于2、3型SMA（P<0.05）。起病年龄≤3月龄、肺炎为首发症状、抬头无力为1型SMA死亡的危险因素（P<0.05）。2型SMA运动能力可呈非线性倒退。 结论 各型SMA患儿临床表现、生存率均存在异质性,1型SMA生存率低,2型SMA运动能力可呈非线性倒退,临床上应早期识别及管理SMA。     

基于动脉自旋标记成像技术探讨支气管肺发育不良对早产儿脑血流量影响的前瞻性研究

目的 探讨儿童高超二倍体（high hyperdiploid,HHD）急性淋巴细胞白血病（acute lymphoblastic leukemia,ALL）的临床特征及预后。 方法 回顾性分析2011年4月—2020年12月福建省5家医院收治的1 414例ALL初诊患儿的临床资料。根据染色体核型,分为伴HHD组（172例）和不伴HHD组（1 242例）,比较两组的临床特征及疗效,并进一步探讨HHD ALL的预后影响因素。 结果 在1 414例ALL初诊患儿中,172例（12.16%）检出HHD。伴HHD组初诊有不良预后危险因素（起病年龄≥10岁或<1岁、初诊白细胞计数≥50×10⁹/L、T细胞表型）、常见融合基因（TEL-AML1、BCR-ABL1、E2A-PBX1、MLL基因重排）阳性的患儿比例均低于不伴HHD组（均P<0.05）,而诱导化疗后微小残留病（minimal residual disease,MRD）<0.01%的患儿比例高于不伴HHD组（P<0.05）。伴HHD组预期10年无事件生存（event-free survival,EFS）率及总生存率均高于不伴HHD组（P<0.05）。单因素分析显示,染色体数目58~66、10号染色体三体、17号染色体三体、诱导化疗第15天或第19天骨髓MRD<1%、诱导化疗第33天或第46天骨髓MRD<0.01%是高EFS率的影响因素（均P<0.05）;10号染色体三体与高总生存率有关（P<0.05）。Cox比例风险回归模型分析显示,17号染色体三体与高EFS率密切相关（P<0.05）。 结论 儿童HHD ALL初诊时不良预后危险因素较少,总体预后佳;染色体数目及特定染色体三体与预后相关。     

晚期早产儿脐血维生素D水平及维生素D3补充对婴幼儿行为发育的前瞻性随机对照研究（英文翻译）

目的 探讨晚期早产儿25-羟维生素D［25-hydroxyvitamin D,25(OH)D］水平及维生素D₃补充对婴幼儿神经行为发育的影响。 方法 前瞻性选取2017年6月—2020年6月收治的晚期早产儿161例为研究对象,根据脐血25(OH)D水平分为充足组（52例）、不足组（53例）、缺乏组（56例）,每组按随机数字法分为A亚组（维生素D₃ 800 IU/d）、B亚组（个体化补充维生素D₃）。分析比较各组生后3个月25(OH)D水平、纠正胎龄10个月及纠正胎龄18个月25(OH)D水平及Gesell发育量表评分的差异。 结果 生后24 h内及3个月时,不足组、缺乏组25(OH)D水平低于充足组（P<0.05）,不足组25(OH)D水平高于缺乏组（P<0.05）;缺乏组生后3个月时B亚组25(OH)D水平高于A亚组（P<0.05）。不足组和缺乏组纠正胎龄10个月、纠正胎龄18个月时Gesell发育量表5个能区得分均低于充足组（P<0.05）;缺乏组纠正胎龄10个月时言语能、纠正胎龄18个月时粗大动作能得分低于不足组（P<0.05）。缺乏组B亚组纠正胎龄10个月时适应能、纠正胎龄18个月时适应能和应物能得分高于A亚组（P<0.05）。 结论 晚期早产儿脐血25(OH)D水平存在明显差异,个体化补充维生素D方案对于纠正维生素D缺乏更为有效。出生时及婴儿早期维生素D水平对神经行为发育有一定影响。     

上海380例家庭聚集性感染Omicron变异株的儿童及其家属临床特征分析（英文翻译）

目的 分析亲子病房收治模式下,家庭聚集性感染Omicron变异株的儿童及其家属的临床特点及转归。 方法 回顾性收集上海市第六人民医院新型冠状病毒肺炎（coronavirus disease 2019,COVID-19）定点医院于2022年4月8日至5月10日收治确诊的感染Omicron变异株患儿190例及其家属190例的临床资料,进行分析总结。 结果 儿童组和成人组均以轻型为主,儿童组轻型比例高于成人组（P<0.05）;2组临床表现均以上呼吸道症状为主,儿童组发热、腹痛腹泻、喘息发生率高于成人组（P<0.05）,鼻塞流涕咳嗽、咽干咽痒咽痛发生率低于成人组（P<0.05）;成人组治疗连花清瘟颗粒/小儿豉翘清热颗粒、中药汤剂、重组人干扰素α2b喷雾剂、止咳化痰药、奈玛特韦/利托那韦片使用率均高于儿童组（P<0.05）;儿童组疫苗接种率（30.5%）较成人组（71.1%）低（P<0.001）,而儿童组严重急性呼吸综合征冠状病毒2（severe acute respiratory syndrome coronavirus 2,SARS-CoV-2）核酸阳性持续时间短于成人组（P<0.05）。2组临床轻型者SARS-CoV-2核酸阳性持续时间短于普通型者（P<0.05）。2组有基础疾病者SARS-CoV-2核酸阳性持续时间长于无基础疾病者（P<0.05）。 结论 家庭聚集性Omicron变异株感染儿童和成人的临床分型均以轻型为主。尽管儿童疫苗接种率较低,但在亲子病房收治模式中,疾病恢复较快,SARS-CoV-2核酸阳性持续时间短于成人。     

亲子绘画和创意手工疗法对学龄前期孤独症谱系障碍儿童及其母亲效果评价的前瞻性随机对照研究

目的 探讨亲子绘画和创意手工疗法对学龄前期轻中度孤独症谱系障碍儿童核心症状及其母亲亲职压力和希望水平的影响。 方法 采用区组随机分组方法，将56对学龄前期轻中度孤独症谱系障碍儿童及其母亲随机分为试验组和对照组，每组各28对。对照组采用应用行为分析法进行干预；试验组在此基础上，采用亲子绘画和创意手工疗法。两组干预时间均为20周。采用孤独症行为评定量表（Autism Behavior Checklist，ABC）、社交反应量表（Social Responsiveness Scale，SRS）、短式亲职压力量表（Parenting Stress Index-Short Form，PSI-SF）和Herth希望指数量表（Herth Hope Index，HHI），评估干预前和干预后（20周的干预时间结束后）儿童核心症状及其母亲的亲职压力和希望水平。 结果 共49对母子参与了全程研究（试验组25对，对照组24对）。干预后试验组儿童社会交往维度、语言维度、社交沟通维度和社交动机维度得分及ABC总分和SRS总分均低于对照组（P<0.05）。干预后试验组母亲的亲职愁苦维度和亲子互动关系失调维度得分及PSI-SF总分均低于对照组（P<0.05），而试验组母亲的HHI总分及各维度得分均高于对照组（P<0.05）。 结论 在应用行为分析干预的基础上，采用亲子绘画和创意手工疗法可进一步改善学龄前期轻中度孤独症谱系障碍儿童的核心症状和社交互动，减轻母亲的亲职压力，提高其希望水平。     

儿童哮喘管理与哮喘控制水平的临床研究

目的 探索家庭结构对青少年抑郁、焦虑症状的影响及其作用机制。 方法 采用整群抽样法于2021年4—5月对上海市7所中学的学生进行线上问卷调查。问卷包括自编一般情况调查表、儿童期创伤问卷、儿童抑郁量表和儿童焦虑性情绪障碍筛查表。采用单因素方差分析、卡方检验、二元logistic回归、中介效应分析等方法探讨不同家庭结构青少年的抑郁和焦虑症状发生情况、儿童期创伤的差异及其中介作用。 结果 与核心家庭青少年相比,三代直系家庭的青少年出现抑郁症状的风险较低（OR=0.794,95%CI：0.649~0.972,P<0.05）,寄宿家庭的青少年出现抑郁症状的风险较高（OR=4.548,95%CI：1.113~18.580,P<0.05）;隔代家庭和寄宿家庭的青少年在儿童期创伤问卷中情感忽视维度的得分更高（P<0.05）。情感忽视在隔代家庭和寄宿家庭对青少年抑郁症状的影响中起中介作用。 结论 父母和祖辈在家庭结构中具有一定的积极影响。与父母分离会使青少年感知到更多的情感忽视,进而增加抑郁症状的发生。     

极低出生体重儿发生肺出血的危险因素及其临床转归

目的 研究极低出生体重儿（very low birth weight infant,VLBWI）发生肺出血的高危因素及其临床转归。 方法 病例来源于2020年1月1日至2021年12月31日江苏省妇幼保健院和南京医科大学附属儿童医院收治的所有活产VLBWI（胎龄<35周）,符合纳入和排除标准的574例VLBWI进入研究,其中肺出血组44例,无肺出血组530例。收集2组临床资料进行比较分析,采用多因素logistic回归分析探讨肺出血的危险因素。 结果 肺出血组和无肺出血组母亲年龄、正压通气复苏率、气管插管复苏率和生后1 h内最低体温的比较差异有统计学意义（P<0.05）。肺出血组Ⅲ~Ⅳ级呼吸窘迫综合征和早发型败血症的比例高于无肺出血组（P<0.05）。生后1 h内毛细血管再充盈时间>3 s和生后24 h内最大呼气末正压（positive end-expiratory pressure,PEEP）<5 cm H₂O的患儿在肺出血组更常见（P<0.05）。多因素logistic回归分析显示,母亲年龄30~<35岁为肺出血的保护因素（OR=0.115,P<0.05）,而生后1 h内最低体温<34℃、生后24 h内最大PEEP<5 cm H₂O和早发型败血症是肺出血发生的危险因素（OR值分别为11.609、11.118和20.661,均P<0.05）。在所有病例中,肺出血组有创通气总时间长于无肺出血组（P<0.05）,病死率高于无肺出血组（P<0.05）;在存活病例中,肺出血组支气管肺发育不良的发生率高于无肺出血组（P<0.05）。 结论 VLBWI生后注意保温、给予合适PEEP和早期识别败血症可减少肺出血的发生,从而有助于减少支气管肺发育不良的发生和降低病死率。     

Effect of parent-child cooperative music therapy on children with autism spectrum disorder and their mothers: a prospective randomized controlled study北大核心CSCD

目的 探讨亲子合作式音乐疗法对孤独症谱系障碍（autism spectrum disorder,ASD）儿童的核心症状及其母亲的影响。 方法 前瞻性采用随机数字表法将112例ASD儿童及其母亲分为音乐疗法组和应用行为分析法（applied behavior analysis,ABA）组,每组各56例。ABA组采用ABA进行干预,音乐疗法组在ABA组基础上采用亲子合作式音乐疗法。2组干预时长均为8周。采用儿童孤独症评估量表（Childhood Autism Rating Scale,CARS）、儿童孤独症家长评定量表（Autism Behavior Checklist,ABC）、亲职压力简表（Parenting Stress Index-Short Form,PSI-SF）、家庭关怀度指数量表（Family APGAR Index,APGAR）和Herth希望量表（Herth Hope Index,HHI）,评估干预前和干预后ASD儿童的核心症状及其母亲的亲职压力、家庭关怀度和希望水平。 结果 共100对母子参与了全程研究（每组各50对）。干预后音乐疗法组ASD儿童ABC量表总分、感觉维度、社交维度、躯体运动维度得分,以及CARS量表总分低于ABA组（P<0.05）。干预后音乐疗法组母亲的PSI-SF总分、亲子互动失调维度得分,HHI量表总分和各维度得分,以及APGAR量表总分、合作度和亲密度得分均高于ABA组（P<0.05）。 结论 在ABA的基础上,加用亲子合作式音乐疗法可改善ASD儿童的核心症状,减轻母亲的亲职压力,提升其家庭关怀度指数和希望水平。 引用格式：中国当代儿科杂志,2022,24（5）：472-481     

Health-related quality of life in adult survivors of childhood Wilms tumor or neuroblastoma: A report from the childhood cancer survivor study

BACKGROUND: Long-term survivors of Wilms tumor and neuroblastoma may experience significant late adverse effects from their disease and its therapy. Little is known, however, about the health-related quality of life experienced by these survivors. PROCEDURE: Health-related quality of life, measured by the 36-Item Short Form Health Survey (SF-36), was assessed from self-report in adult survivors of Wilms tumor (N = 654) and neuroblastoma (N = 432) who participated in the Childhood Cancer Survivor Study. RESULTS: More than 90% of the study population was 18-34 years old at interview, and 58% were females. There was no significant difference on any SF-36 subscale or summary scale between the two diagnostic groups. On average, survivors reported no decrement on the Physical Component Summary scale of the SF-36 when compared to population norms. However, both groups scored significantly below the population mean score (50) on the Mental Component Summary Scale of the SF-36 (Wilms tumor mean = 41.66, standard error = 2.19, P < 0.0001; neuroblastoma mean = 42.41, standard error = 2.23, P < 0.0001) reflecting decreased emotional health. Independent risk factors for lower scores on this scale included female gender, Native American race, unemployment, and household income below $20,000. CONCLUSIONS: Adult survivors of childhood Wilms tumor and neuroblastoma do not differ from population norms on most health-related quality of life (HRQL) measures. These data, however, indicate that the emotional well being of adult survivors may be compromised. Health care providers should be aware of the risk of adverse outcomes in emotional health even many years after treatment and cure.     

Norms and demographic differences of the short form-12 health survey version 2 in Chinese adolescents

Aim: This study aimed to establish the normative values for the 12‐item Short Form Health Survey version 2 (SF‐12v2) and examine demographic differences among Hong Kong Chinese adolescents. Methods: A total of 28 981 Hong Kong Chinese adolescents aged 12–18 participated in a school‐based survey in 2006–2007. Sex‐ and age‐specific SF‐12v2 scores were obtained. Ordinal logistic regression models and linear regression models were used to examine the demographic differences for the eight subscales including physical functioning, role physical, bodily pain, general health, vitality, social functioning, role emotional and mental health, and two component summary scores of Physical Component Summary and Mental Component Summary. Results: The mean (standard deviation) Physical Component Summary score was 50.28 (6.82) for boys and 49.37 (6.47) for girls. The corresponding Mental Component Summary score was 45.86 (9.86) for boys and 44.77 (9.56) for girls. Ceiling effects were observed in some of the eight subscales but not the two component summary scores. Ordinal logistic regression showed that girls had significantly lower scores than boys in most subscales including physical functioning with odds ratio (95% confidence interval) of 0.89 (0.84–0.93); role physical, 0.94 (0.90–0.98); bodily pain, 0.76 (0.73–0.80); general health, 0.55 (0.53–0.57); vitality, 0.72 (0.69–0.75); role emotional, 0.78 (0.74–0.81); and mental health, 0.91 (0.88–0.95). In general, older and non‐local‐born adolescents had lower component summary scores than their peers. Conclusions: This study has provided norms and identified demographic differences of the Chinese SF‐12v2.     

Long-term pulmonary function in survivors of childhood Hodgkin disease and non-Hodgkin lymphoma

BACKGROUND: The aim of our study was to evaluate the long-term effects of chemotherapy and/or radiotherapy on lung function in 75 childhood Hodgkin disease (HD) and non-Hodgkin lymphoma (NHL) survivors several years after treatment. PATIENTS AND METHODS: We studied 37 HD and 38 NHL survivors. These patients were divided into two groups according to the treatment protocols applied. Group I consisted of 23 patients who were treated with both chemotherapy and thoracic irradiation and Group II consisted of 52 patients who were treated with chemotherapy and no thoracic irradiation. A detailed history of smoking habits, respiratory symptoms, and diseases was recorded. Complete physical examinations and pulmonary function tests [PFT, including spirometry, lung volume, and diffusion capacity for carbon monoxide (DLCO)] were performed on all subjects. RESULTS: No patients reported acute or chronic respiratory symptoms or diseases. Pulmonary function abnormality (reduced lung volume and diffusion capacity) was found in 13% of patients at a median 5 years after diagnosis. The percentage of predicted normal value of forced expiratory volume in the 1st sec (FEV(1)), residual volume (RV), and DLCO were significantly lower in Group I than these values for Group II. There were no significant differences in PFT parameters between patients with HD and NHL (P > 0.05). It appears that the risk of reduced lung function was greater the younger the patient in therapy. CONCLUSION: Chemotherapy or chemo-radiotherapy-induced pulmonary sequalae in childhood may remain asymptomatic for many years.     

以健康测量量表评价癫及哮喘患儿生活质量的对照研究

摘要 目的 以健康测量量表（SF 36）评估癫痫及哮喘患儿的生活质量。方法 采用SF-36量表对2007年6至12月在复旦大学附属儿科医院神经专科、呼吸专科及儿童保健门诊就诊的癫痫患儿、哮喘患儿和健康儿童进行生活质量评定。结果 研究期间85例癫痫患儿（癫痫组）、81例哮喘患儿（哮喘组）和87名健康儿童（正常对照组）进入分析。3组儿童的年龄、性别和受教育程度相匹配。①疾病及治疗情况：癫痫组和哮喘组服用1种药物者分别为70/85例和59/81例,癫痫组63/85例和哮喘组56/81例患病后规则服药,两组在服药种类和依从性上差异无统计学意义（P均＞0.05）;癫痫组36/85例至本次调查前至少有1年癫痫未发作;哮喘组29/81例最大呼气峰流速监测持续保持个人最佳值的80％以上。②生活质量评价：癫痫组的生活质量总分和8个分项的终得分与正常对照组差异均有统计学意义（P<0.01）;哮喘组的生活质量总分及生理功能、身体疼痛、总体健康和活力4个分项的终得分与正常对照组差异均有统计学意义（P<0.01）;无论疾病控制与否,癫痫组生活质量均较哮喘组差;癫痫组情感功能及精神健康状况明显差于哮喘组,其心理障碍不随疾病控制而明显改善。结论 ①癫痫和哮喘患儿生活质量较健康儿童明显下降;②癫痫患儿较哮喘患儿生活质量损害更为明显;③SF-36量表可作为评价疾病控制程度的手段,辅助评价疾病治疗的疗效;④癫痫 患儿的心理障碍应引起临床高度关注。     

Are universal standards for optimal infant growth appropriate? Evidence from a Hong Kong Chinese birth cohort.

OBJECTIVE: In 2006 the World Health Organization (WHO) published new optimal growth standards for all healthy infants worldwide. To assess their general applicability to a recently transitioned Chinese population, we compared them with infant growth patterns in a representative sample of Hong Kong infants. Design and settings: Weight at birth and at 1, 3, 9, 12, 18 and 36 months, length at 3 and 9 months and height at 36 months were obtained for over 80% of all infants born in April and May 1997 (3880 boys and 3536 girls). Age and sex specific z scores were calculated relative to the WHO growth standards for term singletons. RESULTS: Weight for age was close to the 50th percentile of the WHO growth standards for both boys (mean z score: 0.00) and girls (0.04) at most time points before 3 years of age. However, our participants were shorter at 3 years, where the z scores in height were -0.34 and -0.38 for boys and girls, respectively. Restricting the analysis to a subset matching the WHO criteria for healthy infants without restrictions on growth gave similar results. CONCLUSIONS: Although the WHO study group concluded there was a striking similarity in length/height among different populations, Hong Kong Chinese toddlers are, on average, shorter. Epigenetic constraints on growth coupled with the rapid epidemiological transition in Hong Kong may not have allowed sufficient generations for infants and children to reach their full genetic height potential, and with it the WHO standards. A universal infant growth standard may not be appropriate across all populations.     

The quality of life and psychological status of mothers of hospitalized pediatric oncology patients

This study compares the quality of life (QoL) and psychological status of mothers of children with cancer with those of mothers of children without cancer. One hundred hospitalized children and their mothers, as primary caregivers, were included in this study. Fifty mothers with healthy children were enrolled as the control group. A children and mother query form was used to obtain demographical data. The disease histories were extracted from patient records. QoL was measured with the Medical Outcomes Study 36-item Short Form Survey (SF-36) and the State-Trait Anxiety Inventory (STAI) in order to assess the psychological symptoms of the mothers in the study and in the control groups. The mean age of the caregivers was 35.93 ± 8.27 years, whereas the mean age of the mothers in the control group was 39.72 ± 6.88 years. The general health, vitality, social functioning, and mental health scores from the SF-36 and the STAI-trait scores were significantly poorer among the mothers of children with cancer as compared with the scores of the mothers of children without cancer (P < .05). Significant negative correlations were found between the age of the children, the age at diagnosis, and the SF-36 subscores for physical functioning, physical role, and pain (P < .05). The mothers of children with cancer, who require hospital care, have poorer QoL and psychological health than the mothers of healthy children. These results suggest that the current system for treating cancer in Turkish children should also include close monitoring of the care-giving mothers' QoL and psychological health.     

The Quality of Life and Psychological Status of Mothers of Hospitalized Pediatric Oncology Patients

This study compares the quality of life (QoL) and psychological status of mothers of children with cancer with those of mothers of children without cancer. One hundred hospitalized children and their mothers, as primary caregivers, were included in this study. Fifty mothers with healthy children were enrolled as the control group. A children and mother query form was used to obtain demographical data. The disease histories were extracted from patient records. QoL was measured with the Medical Outcomes Study 36-item Short Form Survey (SF-36) and the State-Trait Anxiety Inventory (STAI) in order to assess the psychological symptoms of the mothers in the study and in the control groups. The mean age of the caregivers was 35.93 ± 8.27 years, whereas the mean age of the mothers in the control group was 39.72 ± 6.88 years. The general health, vitality, social functioning, and mental health scores from the SF-36 and the STAI-trait scores were significantly poorer among the mothers of children with cancer as compared with the scores of the mothers of children without cancer (P < .05). Significant negative correlations were found between the age of the children, the age at diagnosis, and the SF-36 subscores for physical functioning, physical role, and pain (P < .05). The mothers of children with cancer, who require hospital care, have poorer QoL and psychological health than the mothers of healthy children. These results suggest that the current system for treating cancer in Turkish children should also include close monitoring of the care-giving mothers’ QoL and psychological health.     

儿童肝移植术后供体生活质量分析

目的 调查儿童活体肝移植术后供体的生活质量情况并探讨影响其生活质量的主要因素.方法 采用简明健康调查问卷(SF-36),对2005年1月至2014年12月在四川大学华西医院和重庆医科大学附属儿童医院实施的86例儿童活体肝移植供体进行了生活质量调查.所有纳入供体为不带肝中静脉的左半肝或左外叶切除者,且无重大并发症,能够较好应用汉语沟通者.将调查结果与普通人群生活质量进行比较,并对可能影响生活质量的因素进行分析探讨.结果 共发放符合调查要求的问卷80例,有效回收问卷71例(88.7％).男24例,女47例,平均年龄(29.4±8.0)岁.胆道闭锁患儿供体35例,代谢性肝病患儿供体15例,原发性肝硬化患儿供体11例,肝肿瘤及其他疾病患儿供体10例.移植供体主要为受体父母.总体上,肝移植供体术后生活质量水平在各维度与普通人群没有明显的差异(P＞0.05);胆道闭锁患儿供体在精神健康维度得分优于非胆道闭锁患儿供体(P=0.029);全自费医疗患儿供体在总体健康方面得分明显低于具有医疗保险患儿的供体(P=0.033);供体手术2年后在生理功能(P=0.038)及躯体疼痛(P=0.040)维度得分较术后2年内明显增高;应用主成分分析将生活质量8个维度综合为1个维度,结果提示术后时间是影响肝移植供体术后生活质量的首要因素(P=0.037).结论 儿童肝移植供体术后生活质量状况良好,术后时间、受体原发病和受体医疗形式是影响供体生活质量的主要因素.     

The SF-36 health survey: a valid measure of changes in health status after injury.

OBJECTIVES: The aim of this study is to evaluate the criterion validity and responsiveness to changes over time of the Medical Outcome Study Short Form 36 (MOS SF-36) measure. METHODS: A consecutive sample of 775 patients 16 to 78 years treated for an unintentional injury at the hospital or emergency clinic in Drammen, Norway was selected for the study. Data about activity restrictions and health status measured by SF-36 were obtained by a postal questionnaire 6-10 weeks after the injury. A follow up survey was sent 24-28 weeks later to all who reported activity restriction at the time of the first survey. Fifty two of these replied (63%). RESULTS: 469 patients responded to the survey questionnaire and of these, 82 experienced some restriction of activity. These scored lower (p < 0.01) on all eight SF-36 health dimensions (physical functioning, social functioning, role limitation (physical), role limitation (emotional), bodily pain, mental health, vitality, and general health) than the 387 patients without activity restriction. Scores on physical functioning, social functioning, role limitation (physical), bodily pain, and vitality significant improved (p < 0.01) among the 52 patients who were followed up. Scores on the other dimensions, however, showed no significant changes over time. CONCLUSION: The MOS SF-36 appears to be a valid instrument, responsive to changes in health status over time among unintentionally injured adult people. Thus it may be possible to use the SF-36 to describe changes in health due to injury. The applicability of this or similar measures for injured children remains to be established.     

Health-related quality of life compared to life situation and incontinence in adults with myelomeningocele: Is SF-36 a reliable tool?

AimTo evaluate health-related quality of life (HRQoL) in adults with myelomeningocele (MMC) measured by SF-36.Materials and methodsAll individuals (134) with MMC from western Sweden born before 1981, 69 with a median age of 34 years (range 27–50), participated in a telephone interview. Of these, 61 took part in SF-36 (short form 36 health questionnaire survey).ResultsThe group overall had significant impairment of physical functioning (PF)***, role physical (RP)***, general health GH*** as well as a lower physical component summary (PCS)*** compared to the reference group, while the mental component summary (MCS) was significantly higher***. The comparison between life situation and PCS was favorable for individuals 20–29 years of age or employed. In individuals exhibiting dysphoria during the interview, PCS was negatively affected, however MCS was unaffected. MCS was higher in non-ambulatory individuals* and in those not able to name a negative life experience* (* < 0.05, ** < 0.001, *** < 0.0001). HRQoL as evaluated by SF-36 was unaffected by fecal incontinence, partnership and offspring.ConclusionOur findings indicate that life situation and incontinence were not truly reflected by SF-36. A personal interview with a qualitative approach is likely to be a better tool.