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.     

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.     

先天性肛门直肠畸形患儿父母生活质量和社会支持研究进展

先天性肛门直肠畸形是一种常见的消化道畸形。手术治疗虽然挽救了患儿生命,但是术后肛门失禁、狭窄和便秘等并发症给患儿的身心健康带来严重影响。父母作为主要照顾者,既承担照顾患儿的繁重任务,又面临着沉重的经济和精神负担,成为亟待关注的群体。本文就先天性肛门直肠畸形患儿父母生活质量和社会支持的研究进展进行综述,以期为改善该人群生活质量提供参考依据。     

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.     

Self-perceived health in Swedish parents of children with Down's syndrome

In this comparative study, self-perceived health was investigated in 165 parents of 86 children with Down's syndrome (DS), using the Swedish version of the SF-36 questionnaire. Questionnaires were mailed to parents of children with DS in a defined Swedish population. The results were compared with those in a randomised control group of parents from the Swedish SF-36 norm population. Mothers and fathers replied separately. Student's t-test with the Bonferroni correction was used for multiple statistical comparisons. The mothers of children with DS (DS mothers) had significantly lower, less favourable scores than did the fathers of DS children (DS fathers) in the Vitality (p < 0.0005) domain. Further, DS mothers spent significantly more time in caring for their child with DS than did the DS fathers (p < 0.0001). DS mothers also had lower scores than the mothers of the control group in the Vitality (p < 0.001) and Mental Health (p < 0.001) domains. DS fathers and control fathers differed significantly in the Mental Health domain (p < 0.002), but not otherwise. In conclusion, DS mothers showed poorer health than their spouses and the control mothers. No differences similar to those found between the DS mothers and DS fathers were observed between control mothers and control fathers.     

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.     

新生儿产科留观期先天性心脏病的诊断

目的探讨新生儿生后在产科留观期间先天性心脏病(CHD)的诊断。方法在产科出院前诊断CHD的患儿为诊断组,共有31例,正常婴儿出院后、因各种疾病在新生儿病房再入院后诊断CHD的患儿为未诊断组,共有25例。比较分析2组的临床资料。结果新生儿CHD以房间隔缺损和(或)室间隔缺损最为多见,占82．1％(46／56)。未诊断组产科住院时间(35．6±25．4)h,显著短于诊断组(73．9±43．7)h,差异有显著性(t =4．105,P<0．05)。诊断组CHD诊断的最高峰期为生后49～72 h,而未诊断组84．0％(21／ 25)新生儿在生后48 h内已经出院。未诊断组有3例伴有心外畸形而未做心脏彩超检查,4例曾做胎儿心脏超声,提示正常。未诊断组再人院后4例发生心力衰竭或合并肺部感染,家长放弃治疗后死亡。结论在产科观察期间,部分新生儿CHD、甚至是严重CHD难以早期诊断。产科观察时间过短,可能与新生儿CHD难以及时诊断有关。此外,还需探索其它方法如经皮氧饱和度的筛查,以助早期诊断严重CHD并改善新生儿CHD的预后。     

Health-related Quality of Life in Children and Adolescents after Invasive Treatment for Congenital Heart Disease

Since the 1980s treatment techniques for congenital heart disease (ConHD) have gradually evolved. Therefore, actual information on the outcomes, including quality of life is required. Health-related quality of life was assessed long-term in four diagnostic groups of children, who underwent invasive treatment for ConHD between 1990 and 1995. The scores on the TNO-AZL Child Quality of Life Questionnaire (TACQOL) of both children with ConHD and their parents were compared with those of a same-aged reference group. The total sample of ConHD children (n = 113, 8–15 years old) obtained significantly lower mean scores on motor functioning, cognitive functioning, and positive emotional functioning than reference peers, reflecting an experience of poorer functioning. ConHD children, aged 8–11 years, obtained lower mean scores on 5 of the 7 TACQOL scales than reference peers. They also had a lower score on positive emotional functioning than 12- to 15-year-old ConHD children. The total sample of ConHD children obtained lower outcomes compared to their parents on 4 of the 7 TACQOL scales. No significant differences were found in health-related quality of life between ConHD boys and girls, neither between different diagnostic groups. Overall, this sample of recently treated ConHD children showed a worse health-related quality of life compared to reference groups. These findings deserve further attention.     

青海省儿童先天性心脏病影响因素的调查研究

目的  分析青海省儿童先天性心脏病(congenital heart disease, CHD)的影响因素。方法  采用病例对照研究,按性别和年龄相差＜1岁进行1∶2个体匹配,纳入315名＜6岁的儿童(病例组105名,对照组210名),影响因素采用条件logistic回归分析模型分析。结果  单因素条件logistic回归分析模型筛选出14个差异均有统计学意义的CHD影响因素(均P<0.001),包括居住地海拔、民族、出生体重、母亲文化程度、家庭收入、孕期接受宣教、首次妊娠、孕期补充维生素、孕期主要饮用水、孕期食用蔬菜水果、孕期食用油炸腌制品、孕期体育锻炼、孕期饲养动物、孕期定期体检;多因素条件logistic回归分析模型分析筛选出6个有统计学意义的CHD影响因素,包括海拔>2 500 m(OR=4.84, 95% CI: 1.17~20.08, P=0.030)、出生体重≥2.5 kg(OR=0.10, 95% CI: 0.01~0.81, P=0.031)、母亲有大学及以上文化程度(OR=0.23, 95% CI: 0.07~0.76, P=0.016)、家庭人均月收入>1 500元(OR=0.03, 95% CI: 0.01~0.21, P=0.001)、孕期补充维生素(OR=0.06, 95% CI: 0.01~0.40, P=0.004)、孕期饮用纯净水(OR=0.05, 95% CI: 0.01~0.35, P=0.003)。结论  与低海拔地区相比,居住在高海拔地区发生CHD的危险会高出4.84倍。家庭收入、母亲文化程度、母亲孕期生活方式与CHD的发生可能有关。     

Quality of life among parents of children with heart disease

Background  

Quality of life of parents of chronically ill children has become increasingly important as the mortality rates associated with such illnesses have decreased and survival rates have increased.     

先天性心脏病术后患儿生活质量的研究现状

先天性心脏病(简称先心病)的发病率近年来居高不下,成为婴幼儿死亡及致残的主要原因.外科手术和介入手术治疗的发展,使至少85%的先心病患儿存活到成年期,越来越多的先天性心脏病患儿被治愈或带病生存至终身.随着人们对健康观念的转变,生活质量即患儿对其目前生命状况的认知和满意程度,已逐渐成为评估儿童身心健康的重要指标.因此关注先心病术后患儿的生活质量对患儿术后恢复健康具有重要意义.目前我国对先心病术后患儿生活质量现状缺乏长期随访观察,使得研究结果不够深入和全面.该文主要阐述了先心病术后患儿生活质量的研究现状,按照WHO生活质量研究组提出的生理功能、外表、心理功能、家庭社会关系、心理社会状况和生活环境这6个方面来阐述,为后期改善先心病术后患儿生活质量提供依据.     

先天性心脏病患儿术后合并营养不良影响因素及其生存质量分析

目的 评估先天性心脏病(CHD)患儿术后合并营养不良的发生率,分析其营养不良的影响因素及其对患儿术后生存质量的影响.方法 选取2016年7月-2020年7月在北部战区总医院心外科、先心内科和儿科就诊且有既往心脏手术史的312例2～12岁患儿.评定研究对象是否合并营养不良,收集患儿一般资料分析其合并营养不良的影响因素.并...     

中国冠心病患者健康生命年损失研究

目的 计算冠心病的健康生命年损失,确定中国冠心病的高危人群和高危地区,为冠心病的防治工作重点提供科学依据.方法 将2005年中国冠心病的死亡情况按照地区、年龄、性别整理,利用残疾调整生命年(DALY)指标计算冠心病的健康生命年损失.结果 中国冠心病健康生命年损失为139 953.2537人年(3.72人年/千人),其中以死亡损失的健康生命年为130 753.9479人年,残疾损失的健康生命年为9 199.2788人年;70～80岁为健康生命年损失最高的年龄段,男性高于女性,城市高于农村.结论 冠心病的健康生命年损失主要由死亡引起,男性和城市居民冠心病的健康生命年损失更应引起重视.     

先天性心脏病患儿术后静息能量消耗

目的　应用间接测热法（IC）测定先天性心脏病术后机械通气患儿的静息能量消耗（REE）,探究先天性心脏病患儿术后静息能量代谢规律及可能影响因素。方法　纳入2015年2至6月入住上海儿童医学中心心胸外科重症监护室的先天性心脏病术后患儿共150例,于术后4 h应用代谢车测定REE。收集患儿一般人口学和人体测量学资料、临床资料,分析临床因素与REE的相关性。比较患儿术后营养摄入与REE的关系。结果　入组患儿150例,男104例、女46例,中位年龄14（8.3~36.0）个月。IC测得非蛋白呼吸商为0.79±0.20,REE实测值（MREE)（264.76±61.74）kJ/(kg·d),与Schofield公式估算值（278.51±93.42）kJ/(kg·d)比较,差异无统计学意义（P=0.096）,但相关性较低（R2=0.119）;多因素逐步回归分析显示先天性心脏病风险校正评分（RACHS-1）与MREE呈显著正相关（P=0.012）、年龄与MREE呈显著负相关（P=0.010）。术后97.33%（146/150）患儿第1天摄入热量低于MREE。结论　先天性心脏病术后并未出现明显高代谢状态,但影响底物代谢。RACHS-1评分、年龄是影响患儿术后REE的因素。先天性心脏病患儿术后第1天摄入热量普遍低于REE。     

Risk factors in congenital heart disease

Risk factors were studied in 801 children with congenital heart disease (CHD) coming from 105,374 consecutive births of known outcome. The incidence of CHD was 7.60 %o. Diagnosis was performed in 66.5% of the cases during the perinatal period. Two-hundred-fifty seven of the cases also had at least one non-cardiac malformation (multiply malformed). Ninety-two cardiac infants (11.47%) had recognized chromosomal and non-chromosomal syndromes. The most frequent non-cardiac malformations were renal, digestive and limb anomalies. For each case a control was studied. The following features were screened: sex ratio, parity and previous pregnancies, parental age, residency, education, ethnic origin, lenght, head circumference and weight at birth, genetic and environmental factors. Odds ratio values were calculated for the risk factors.Weight, length and head circumference at birth of cardiac infants were less than those of controls. The weight of placenta was also lower than in controls. The pregnancy with CHD was more often complicated by hydramnios and threatened abortions, except in infants with isolated CHD. Oliogoamnios was more frequent in pregnancies producing multiply malformed infants and those with recognized syndromes with CHD. One out of four children with CHD had an extracardiac malformation, which is ten times the rate of incidence of malformation in our population.The incidence of CHD in first degree relatives of these infants was 3.0%. These first degree relatives also had more non-cardiac malformations than did those of the controls.Corresponding author.     

青海省不同海拔高度地区4～18岁人群先天性心脏病流行病学调查

目的 调查青海省6个州和海东地区3个县4～18岁少年儿童先天性心脏病(CHD)流行病学特征.方法 共计对288 066名少年儿童按初筛、复筛、彩色多普勒超声心动图确定三级筛选方法.分析不同海拔、不同民族CHD患病率及病种分布,探讨性别间及各年龄段间CHD变化及与海拔高度的关系.结果 查出CHD 1633例,总患病率为5.66‰.不同海拔(2000m～、3000m～、4000m～)患病率分别为4.89‰、5.71‰、8.74‰.不同海拔之间患病率差异有统计学意义(χ~2=54.696,P＜0.001),趋势分析表明随着海拔高度的上升总患病率明显增加(χ~2=41.826,P＜0.001).女性总患病率(6.95‰)明显高于男性(4.54‰),χ~2=73.79,P＜0.001.海拔2000m～地区男女性患病率差异无统计学意义(χ~2=0.807,P＞0.05).随海拔升高女性CHD的患病率高于男性,3000 m～(χ~2=84.733,P＜0.001)、4000 m～(χ~2=16.313,P＜0.001).海拔2000m～地区各年龄段间CHD患病率差异有统计学意义(χ~2=18.138,P＜0.001),但患病率不随年龄的增加而变化(χ~2=3.424,P＞0.05).海拔3000m～、4000m～地区CHD患病率随年龄增长而增加,差异有统计学意义(χ~2=19.230,P＜0.001;χ~2=26.894,P＜0.001).各民族间患病率的差异有统计学意义(χ~2=24.456,P＜0.001),其中蒙古族7.55‰、藏族6.40‰、汉族5.32‰、土族5.23‰、回族4.89‰、撒拉族2.22‰.CHD构成比以房间隔缺损(ASD)为主(37.42%),其次为动脉导管未闭(PDA)(28.47%)和室间隔缺损(VSD)(26.01%).但海拔不同其构成比又有不同,海拔2000 m～、3000 m～以ASD为首位,分别占37.80%、37.67%,4000 m～PDA占首位(46.36%).结论 青海省4～7岁少年儿童CHD患病率、病种分布、性别间及各年龄段间变化与海拔高度有关.     

小婴儿先天性心脏病的围手术期治疗

目的:分析该院68例年龄小于1岁先天性心脏病(CHD)病人的临床资料,总结小婴儿CHD围手术期的治疗方法。方法:回顾性分析该院自2006年3月～2009年3月68例年龄小于1岁病人的临床资料、术前准备、手术方式、术后监护处理。结果:该组病例均在体外循环下行Ⅰ期根治术,术后发生肺高压危象3例,低心排4例,肺部感染13例,肺不张3例,脑萎缩1例。死亡1例(病死率1.72%),其余均治愈出院,随访3～24月,生长发育改善,无远期并发症。结论:小婴儿CHD病情复杂、危重,选择适当的手术时机,完善围手术期处理,可取得满意疗效。     

1009例婴幼儿先天性心脏病危险因素的病例对照研究

目的 探讨母亲围孕期危险因素暴露与婴幼儿先天性心脏病的发病风险。方法 病例选择2012年3月1日~2013年10月1日在西京医院经超声心动图检查确诊为先天性心脏病的婴幼儿,对照选择为同期做超声心动图未发生先天性心脏病的婴幼儿。对病例组和对照组父母亲一般情况、母亲孕期环境因素暴露情况进行问卷调查。结果 435例先天性心脏病的婴幼儿和574例未发生先天性心脏病的婴幼儿的父母亲基本情况及母亲围孕期相关危险因素分析结果显示,母亲怀孕早期服用药物（OR=4.65,95%CI：2.84~7.66）、病毒感染（OR=3.15,95%CI：1.66~6.01）、房屋装修（OR=1.87,95%CI：1.24~2.80）、染发烫发（OR=2.18,95%CI：1.37~3.49）、父母工作环境污染暴露（OR=2.88,95%CI：1.86~4.47）均是造成心血管畸形的独立危险因素。随着暴露因素的增多,先天性心脏病发病的危险程度显著增加。当孕期同时受到3种或3种以上危险因素的暴露时,婴幼儿罹患先天性心脏病的危险性是单因素暴露的16.35倍。结论 婴幼儿先天性心脏病的发病与围孕期危险因素的暴露存在相关性。     

父母生存质量对学龄儿童智力和个性发育的影响

目的 探讨父母生存质量对学龄儿童智力及个性发育的影响。方法 采用联合型瑞智力测验（CRT－C2），艾森克人格问卷（EPQ）对哈尔滨市1961名城乡7－12岁学龄儿童进行智力及个性发育测试，同时采用WHO生存质量测定量表简表（WHOQOL－BREF）对其父母进行生存质量问卷调查。结果 单因素分析发现，父母生存质量的生理，心理领域均对儿童智力，个性发育有显影响（P＜0．001）。结论父母生存质量对学龄儿童智力及个性发育有明显影响，改善家庭成员的生存质量对提高儿童心理健康水平有重要意义。     

How well do parents know their children? implications for proxy reporting of child health-related quality of life

OBJECTIVES: This study examined parental knowledge of their children's oral-health-related quality of life (OHRQoL) (Objective 1), and the effects of different analytical techniques to manage 'Don't know' (DK) responses on the validity and reliability of the questionnaire (Objective 2) and the level of agreement between parental and child reports (Objective 3). METHODS: The parental (PPQ) and child (CPQ11-14) components of the Child Oral Health Quality of Life Questionnaire were used. Objectives 1 and 2 were addressed in the study that involved 221 parents and Objective 3 in the study that involved 63 pairs of parents and children. Four methods for treating DK responses in the PPQ were tested: listwise deletion, item mean imputation, imputation of the value zero and adjustment of scores to account for items with DK responses. RESULTS: Respectively, 26 and 11% of the parents gave > or = 3 and 6 > or = DK responses to 33 items comprising the PPQ. DK responses were associated with child's age and clinical condition, and parental gender. The methods of managing DK responses did not have differing effects on the measurement properties of the PPQ and the level of agreement between parents and children. CONCLUSION: Some parents have limited knowledge concerning their children's OHRQoL. However, given that parental and child reports are measuring different realities, information provided by parents is useful even if it is incomplete.