低体重先天性心脏病婴儿的术后监护

目的总结5 kg以下低体重先天性心脏病婴儿术后护理的特点,从而掌握正确科学的监护方法,使患儿顺利度过术后危险期,以提高手术成功率。方法对清华大学第一附医院心脏中心80例5 kg以下的先天性心脏病婴儿术后监护经验进行总结。结果该组患儿有4例死亡,其余患儿均恢复良好。结论术后严密监测循环系统,维护心功能,加强呼吸道护理,尽早营养支持,做好胃肠道护理,可减少并发症,提高手术成功率。     

小儿先天性心脏病术后疼痛的评估及护理

目的：探讨小儿先天性心脏病术后疼痛的评估及护理.方法：结合护士使用Wong-baker脸及FLACC疼痛评价方法和家长疼痛问卷调查,正确评估患儿疼痛,及时观察病情变化;运用舒适护理理论,安抚、转移注意力和睡眠、镇痛药物应用及配合微量泵镇痛等有效护理措施.结果：减轻了小儿术后疼痛或免受痛苦的折磨,减少并发症的发生率及病死率,为小儿术后顺利康复创造条件.结论：有效止痛可以降低后遗症的发生率,缩短住院时间,促进康复.     

膀胱癌老年患者术后的生活质量现状调查

目的了解膀胱癌老年患者的术后生活质量现状及其影响因素,为老年膀胱癌患者的护理提供理论指导。方法于2013年12月—2014年6月应用社会支持评定量表、膀胱癌特异性量表对河南省某三甲医院肿瘤科术后3个月的膀胱癌患者进行调查。计量资料采用t检验,不同的手术方式对患者的生活质量的影响使用方差分析,相关性分析使用Pearson相关,P0.05为差异有统计学意义。结果膀胱癌患者的生活质量平均得分(94.27±8.15)分,社会支持平均得分为(33.69±4.38)分,功能情况(F=5.46,P0.05)、老年膀胱癌患者生活质量得分(F=4.46,P0.05)、不同的手术方式身体情况(F=6.69,P0.05)之间的差异有统计学意义,进一步相关分析显示,老年膀胱癌患者术后的生活质量与社会支持呈正相关(P0.05)。结论老年膀胱癌患者手术后的生活质量水平与患者手术方式紧密相关,选择手术的方式时要视患者的病情而定,同时要严密评估患者的社会支持水平。     

先天性巨结肠术后患儿远期生活质量的研究进展

先天性巨结肠是一种比较多见的胃肠道发育畸形。术后相当一部分患儿存在不同程度的生长发育迟缓、排便功能障碍及心理行为问题，影响其生活质量。因此，小儿外科医生应注意预防患儿排便功能障碍的发生，减少排便功能障碍对患儿的社会和心理的影响，重视术后的康复治疗。     

先天性巨结肠术后患儿远期生活质量的研究进展

先天性巨结肠是一种比较多见的胃肠道发育畸形。术后相当一部分患儿存在不同程度的生长发育迟缓、排便功能障碍及心理行为问题 ,影响其生活质量。因此 ,小儿外科医生应注意预防患儿排便功能障碍的发生 ,减少排便功能障碍对患儿的社会和心理的影响 ,重视术后的康复治疗     

儿童先天性心脏病术后护理对策分析

目的 探索儿童先天性心脏病术后护理对策,以减少术后并发症的发生,降低死亡率,提高患儿术后恢复能力.方法 回顾分析对2011年1月-2013年2月300例儿童心脏术后的护理对策.①机械通气的护理;②抗感染的护理;③饮食护理;④以家庭为中心的多元化护理.结果 全组发生肺部并发症10例,其中1例死于低心排出量综合征,其余肺部并发症2例,肺炎、肺不张8例均经治疗后痊愈,心理情况控制良好.结论 儿童先天性心脏病术后采用正确的护理对策能有效的减少术后并发症,降低死亡率,提高患儿术后恢复能力.     

先天性心脏病患儿照顾者生活质量影响因素分析

目的小儿先天性心脏病会给照顾者带来沉重负担,使其身心健康、生活质量严重下降。本研究探讨先天性心脏病(congenital heart disease,CHD)患儿照顾者生活质量相关影响因素情况。方法选取2017-01-01-2018-01-01郑州大学附属儿童医院收治的102例CHD患儿的照顾者为研究对象,使用一般资料调查问卷和生活质量评价量表(short-form-36health survey,SF-36)对其生活质量进行单因素和多因素分析。结果 CHD患儿照顾者SF-36总得分为86～126分,平均评分为(98.52±8.15)分。单因素分析显示,照顾者文化程度(χ~2=14.631,P0.001)、身体状况(χ~2=15.648,P0.001)和患儿预后情况(χ~2=7.565,P=0.006)对其生活质量有影响。影响照顾者生活质量的因素为患儿预后情况(OR=0.115,95%CI为0.035～0.373,P0.001)、照顾者身体状况(OR=7.867,95%CI为2.624～23.584,P0.001)和文化程度(OR=6.597,95%CI为1.256～34.657,P0.001)。结论患儿预后好、照顾者文化程度高、身体健康状况好的CHD患儿照顾者生活质量较高。     

衡阳市乳腺癌患者术后生活质量影响因素调查研究

目的探讨衡阳市乳腺癌患者术后生存质量的影响因素。方法采用乳腺癌患者一般情况问卷与乳腺癌患者生命质量测定量表(FACT-B),对105名术后乳腺癌患者进行调查和评定。结果衡阳市乳腺癌患者术后生活质量的主要影响因素:年龄、职业、临床分期、月收入、术后时间。结论乳腺癌患者术后生活质量随年龄的增高、病情的加重而降低;临床分期越晚,患者的生命质量也越差。     

肾病综合征患儿生活质量研究

目的: 评估肾病综合征患儿的生活质量。方法: 采用程灶火编制的儿少主观生活质量问卷 (ISLQ) 对肾病综合征患儿的生活质量进行检查评定, 并与正常同龄儿童进行对比。结果: 病例组儿童的生活质量总体满意度、认知满意度和情感满意度均明显低于正常组儿童 (P<0 05)。除家庭生活维度的满意水平略高于正常组外, 其余各维度满意水平均低于正常组,其中学校生活、生活环境、自我认识、抑郁体验、躯体情感等 5个维度的满意水平明显低于对照组儿童, 其差别具有显著性意义 (P<0 05)。结论: 患儿组的生活质量明显低于正常组, 应对患儿进行包括心理干预的综合治疗。     

乳腺癌患者术后护理干预对生活质量的影响

目的探讨乳腺癌患者术后心理护理干预对患者生活质量的影响。方法将96例癌症患者随机分为对照组44例和干预组52例,对照组采用传统护理,干预组在传统护理方法的基础上实施综合心理护理干预,并采用焦虑自评量表（SAS）和抑郁自评量表（SDS）与对乳腺癌患者术后的心理状况进行分析。结果综合心理护理干预后,干预组患者的SDS,SAS评分明显由于观察组差异显著有统计学意义（P〈0．05）。结论综合心理护理干预能在全方位上提高乳腺癌术后患者的生活质量,对延长生存期有积极促进作用。     

44例先天性心脏病人术后监护体会

目的:探讨小儿先天性心脏病术后监护方法与处理措施.方法:通过对44例先心病人术后呼吸、循环及重要脏器功能的监护与处理的分析.结果:应积极预防和控制感染,纠正心功能不全及早使用血管活性药物及对症处理.结论:医护紧密合作,监护规则的完善,治疗水平的提高,可进一步提高先心病人的治愈率.     

How does the intervention of cardiac surgery affect the self-perception of children with congenital heart disease?

Background There is little published information about the self-perceptions of children with chronic physical diseases and the ways in which self-perceptions might change as a result of treatment. An innovative measure of self-perception is described, suitable for use by children of widely varying ages as well as by parents.
Methods The instrument used assessed eight constructs contributing to self-perception, and also measured differences between perceptions of actual and ideal self. Children ( n = 31; age 5–15 years) with congenital heart disease (CHD) were assessed prior to surgery and 1 year post-operatively. Comparisons were made with children before and 1 year after bone marrow transplantation (BMT), and with healthy children.
Results There were no differences between the groups in ideal self-perceptions, but the CHD children rated themselves as weaker, more frightened and more ill than the healthy group. Given the differences in symptomatology and illness experience of children with cyanotic and acyanotic lesions, surprisingly few differences emerged in the self-perceptions of these two groups, although differences were found among younger and older children assessed separately. Significant improvements were found in self-perceptions of the CHD and BMT groups following treatment, and at follow-up, no significant differences remained between the CHD and healthy groups. In the latter, self-perception was largely unchanged between the two assessments.
Conclusions Assessment of self-perception should be an integral part of the assessment of health outcomes in childhood illness. The study demonstrated the significant improvement in self-perception following surgery for CHD. The results also support the validity, reliability and sensitivity to change of the assessment measure.     

Exploring health-related experiences of children and young people with congenital heart disease

OBJECTIVE: To determine the health-related experiences of children with congenital heart disease. DESIGN: Qualitative, semi-structured interviews. PARTICIPANTS: A purposive sample (N = 35) of children and young people, aged between 8 and 19 years, with a variety of congenital heart conditions recruited from one treatment care centre in the north of England. RESULTS: The main themes identified included: physical limitations of their condition; restrictions; attitudes of others; choices about information; coping with life and privacy. CONCLUSIONS: This study suggests that while many of this sample of children said that they coped well with their condition some children did experience significant impact on their quality of life in several domains. Children and young people identified a need for improved strategies to help them communicate about their condition with peers, schoolteachers and health-care professionals to allow a better understanding of what they are able to achieve.     

Determinants of the quality of life of patients with congenital heart disease

Objective: The improvement of the quality of life of chronically ill patients has become an important goal in treatment. However, it is seldom taken into account that many other factors, in addition to somatic factors, have an influence on the quality of life of patients. Using patients with congenital heart defects as an example, we examined the relative significance of biological factors, compared to psychological and social factors, for the various quality of life dimensions. Research design and methods: One hundred and eleven patients (aged 33 ± 12 years) with different degrees of cardiac dysfunction were examined (NYHA 0: 2 I: 56, II: 38, III: 13, IV: 2). All patients for whom there was no contra-indication underwent a treadmill ergometry in order to determine their level of cardiopulmonary functioning (peak oxygen consumption: ). All patients were asked to fill out questionnaires concerning their quality of life (WHOQOL-Bref), their cardiac complaints (Giessener Complaint Questionnaire GBB), their personality traits (Giessen Test GTS), and the social support they experience (Social Support Questionnaire SOZU-k22). The data were analyzed using a linear structural equation model (SEM). Results: In all aspects but the social domain, the HRQL of CgHD patients was significantly diminished compared to the normal population. The SEM proposed was valid, showing good indices of fit (χ²=1.18; p=0.55; AGFI=0.92). The level of cardiopulmonary functioning was most significant for the reporting of specific cardiac complaints (β=−28) and for the physical component of the general HRQL (β=32), although the former was also influenced by a depressed disposition (β=−0.20) and the extent of social support experienced (β=0.18). The objective findings, however, had virtually no individual significance for the psychological (β=0.09) and social domains (β=−0.02). These HRQL domains are primarily influenced by depressive personality traits (β=−26/−0.16) and the social support experienced (β=0.51/0.51). Conclusions: The patient’s organic dysfunction primarily determines illness-specific complaints but has little relevance for the psychological and social aspects of the HRQL. These aspects are predominantly determined by the patient’s depressive disposition and by the experienced social support. A successful therapy should therefore take biological as well as psycho-social determinants of the quality of life into account.     

A cardiac-specific health-related quality of life module for young adults with congenital heart disease: Development and validation

This study represents the development and validation of a cardiac-specific module of the generic health-related quality of life (HRQoL) instrument, the TAAQOL (TNO/AZL Adult Quality Of Life), for young adults with congenital heart disease (CHD). Items were selected based on literature, an explorative previous study in CHD patients, interviews with patients, and the advice of experts. The newly developed Congenital Heart Disease-TNO/AZL Adult Quality of Life (CHD-TAAQOL) was tested in 156 patients with mild or complex CHD and consisted of three hypothesised subject scales: 'Symptoms' (9 items), 'Impact Cardiac Surveillance' (7 items), and 'Worries' (10 items). Cronbach's alpha for the three scales were 0.77, 0.78, and 0.82, respectively. Scale structure was confirmed by Principal Component Analysis, corrected item-scale and interscale correlations. Overall, 55% of reported health status problems were associated with negative emotions, which is an argument for assessing HRQoL as a concept distinct from health status. Convergent validity with validated generic instruments (TAAQOL and Short Form-36, SF-36) showed satisfactory coefficients. Discriminant validity was proven by significantly higher scores for mild CHD patients compared with those with complex CHD. In conclusion, the CHD-TAAQOL module together with the generic TAAQOL can be used to assess group differences for cardiac-specific HRQoL in young adults with CHD. Testing psychometric properties of the CHD-TAAQOL shows satisfactory results. However, to detect changes in HRQoL over time, further research is needed.     

冠心病患者生活质量评价

目的探讨冠心病患者生活质量。方法采用世界卫生组织生活质量量表（WHOQOL-100）中文版,对167例冠心病患者和正常对照人群生活质量测量,通过t检验、χ^2检验及相关分析探讨其生活质量。结果冠心病患者在生理、心理、独立能力、社会关系、生活环境领域及WHOQOL-100总评分方面均比正常对照人群的生活质量低;社会支持总分和主观支持得分低于对照组,并且与生活质量呈正相关关系;经济水平、年龄和社会支持是生活质量的影响因素。结论应积极给予患者社会支持与主观支持,以提高其生活质量。     

1999~2003年北京市5岁以下儿童先天性心脏病死亡状况分析

目的:了解北京市5岁以下儿童先天性心脏病死亡的状况。方法:对1999~2003年北京市5岁以下儿童生命监测资料进行分析。结果:1999~2003年先天性心脏病已成为北京市5岁以下儿童的重要死因,其中婴儿期尤其是早期新生儿期死亡率较高。北京地区分布呈现城区死亡人数明显低于近郊和远县的特点。结论:降低先天性心脏病儿童死亡率,应以降低婴儿尤其是7 d内新生儿的死亡率为重点,做到早发现、早治疗。     

乌鲁木齐3~36月龄儿童先心病危险因素调查

目的 了解乌鲁木齐地区3~36月龄儿童先天性心脏病(先心)的患病情况及其流行特征.方法 对2014年6月至2015年2月在乌鲁木齐市妇幼保健院儿保科门诊进行健康体检的3~36月龄儿童开展先天性心脏病的普查,对所有儿童进行问诊、体格检查和彩色多普勒超声心动图检查,并对先天性心脏病的患病率、病种分布及影响因素进行统计学分析.结果 共确诊先天性心脏病儿童56名,其中房间隔缺损16人(0.59%)、室间隔缺损23人(0.84%)、动脉导管未闭11人(0.40%);对27项影响因素进行Logistic回归分析发现:是否患先天性心脏病与患儿月龄(χ2=-3.97,P=0.000)、家距马路距离(χ2=6.74,P=0.000)、孕期宫内发育迟缓(χ2=2.96,P=0.003)、宫内窘迫(χ2=4.59,P=0.000)有关联,且差异均具有统计学意义;同时与母亲孕龄(χ2=2.38,P=0.017)、孕期体检次数(χ2=-6.34,P=0.000)、孕期是否患有上呼吸道感染(χ2=5.52,P=0.000)及不良嗜好(χ2=4.81,P=0.000)有关联,且差异均具有统计学意义.结论 该地区儿童先天性心脏病检出率高于全国水平,先天性心脏病的构成比与同类文献报道相似;孕妇健康状况对先天性心脏病的发生有明显影响,应高度关注.     

Predictors of quality of life among women with coronary heart disease

Background Health-related quality of life (HRQOL) is an increasingly relevant outcome as the population ages and associated morbidities increase. The purpose of this study was to evaluate predictors of HRQOL among ethnically diverse women hospitalized for coronary heart disease (CHD) and determine the impact of a brief, educational intervention on HRQOL 6 months post-hospitalization. Methods Women (n = 160; mean age 63 years, 53% minority) admitted for CHD at three academic hospitals who completed a 6 month secondary prevention trial were studied. The SF-36 was administered at admission and 6 months. Multiple linear regressions were used to identify significant independent predictors of 6 month HRQOL. Results Significant improvements in HRQOL were noted from admission to 6 months post-hospitalization. Subjects reporting better HRQOL at 6 months included those who were employed, married, physically active, enrolled in cardiac rehabilitation, and not depressed. Women who received an educational intervention had significantly less bodily pain at 6 months compared with usual care in a model adjusted for baseline HRQOL and physical activity goal adherence (p = 0.04). Conclusions Baseline HRQOL (8 SF-36 subscales), physical activity (3 SF-36 subscales) and marital status (1 SF-36 subscale) were the major determinants of HRQOL at 6 months post-hospitalization. Future interventions and preventive efforts should be targeted to women with CHD who have impaired HRQOL and may be at increased risk of poor clinical outcomes.     

The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease

Objective Mortality after surgery for congenital heart disease (CHD) has decreased. Quality of life (QOL) assessment in survivors has become increasingly important. The purpose of this project was to create the Pediatric Cardiac Quality of Life Inventory (PCQLI). Methods Items were generated through nominal groups of patients, parents, and providers. The pilot PCQLI was completed by children (age 8–12), adolescents (age 13–18), and their parents at three cardiology clinics. Item reduction was performed through analysis of items, principal components, internal consistency (IC), and patterns of correlation. Results A total of 655 patient–parent pairs completed the pilot PCQLI. Principal components identified included: impact of disease (ID); psychosocial impact (PI); and emotional environment (EE). After item reduction ID and PI had excellent IC (ID = 0.88–0.91; PI = 0.78–0.85) and correlated highly with each other (0.81–0.90) and with the total score (TS) (ID = 0.95–0.96; PI = 0.87–0.93). EE was not correlated with ID, PI, or TS and was removed from the final forms. Two-ventricle CHD patients had a higher TS than single-ventricle CHD patients across all forms (P < 0.001). Conclusion The PCQLI has patient and parent-proxy forms, has wide age range, and discriminates between CHD subgroups. The ID and PI subscales of the PCQLI have excellent IC and correlate well with each other and the TS. Supported by the Critical Care Medicine Endowed Chair at The Children’s Hospital of Philadelphia. Abstract presented at the 54th Scientific Session of the American College of Cardiology, Orlando, Florida, 2005.