脑性瘫痪患儿及其家属生存质量研究

目的:探讨脑性瘫痪对患儿及其家属生存质量的影响。方法:采用儿童生存质量测定量表体系(the pediatricquality of life inventory measurement models,PedsQL)4.0作为测定工具,分别对脑性瘫痪儿童及正常儿童进行生存质量测定;采用SF-36健康调查量表(the Mos 36-item short form health survey)作为测定工具,分别对脑性瘫痪儿童家属及正常儿童家属进行生存质量测定,比较脑性瘫痪儿童和正常儿童、脑性瘫痪儿童家属和正常儿童家属之间生存质量的差异性。结果:脑瘫儿童PedsQL 4.0测定中,脑瘫儿童在生理功能、情感功能、社交功能、学校总分及总分方面得分,均低于正常儿童(P<0.01)。在SF-36调查中,脑瘫儿童家属除外生理功能及生理职能两个项目外,其他项目包括躯体疼痛、总体健康、活力、社会功能、精神职能、精神健康以及总分方面得分,均低于正常儿童家属组(P<0.05)。结论:脑性瘫痪儿童及其家属的生存质量均较正常对照组低,因此,在实际的康复治疗中,应采用综合康复治疗手段,提高脑瘫儿童及其家属生存质量,同时社会要高度关注脑瘫患儿的家庭。     

Agreement between parent and child report of quality of life in children with attention-deficit/hyperactivity disorder

BACKGROUND: There is little information in the research literature of agreement between parent and child in reports of child quality of life (QOL) for a sample of children diagnosed with attention-deficit/hyperactivity disorder (ADHD). The aim of our study was to determine whether parent and child concordance is greater for physical domains of QOL than for psychosocial domains; whether parents rate their child's QOL better or poorer than their child's ratings; and whether concordance is related to demographic, socioeconomic or clinical factors. METHODS: The study was a questionnaire survey of children aged 10-17 referred to the ADHD clinic and diagnosed with ADHD in the province of British Columbia (Canada) between November 2001 and October 2002 and their parent. RESULTS: Fifty-eight children diagnosed with ADHD and their parents completed our study questionnaire. The main outcome measure was the Child Health Questionnaire, which permitted comparisons on eight QOL domains and one single item. Intraclass correlation coefficients were moderate for five domains (range from 0.40 to 0.51), and good for three domains (range from 0.60 to 0.75). Children rated their QOL significantly better than their parents in four areas and poorer in one. Standardized Response Means indicated clinically important differences in mean scores for Behaviour and Self-esteem. Compared with population norms, across most domains, children with ADHD reported comparable health. Discrepancies between parent-child ratings were related to the presence of a comorbid oppositional/defiant disorder, a psychosocial stressor and increased ADHD symptoms. CONCLUSIONS: Although self-report is an important means of eliciting QOL data, in children with ADHD, given the discrepancies in this study between parent and child report, measuring both perspectives seems appropriate.     

Quality of life and psychosocial well-being among children living with HIV at a care home in Southern India

This study was designed to evaluate the quality of life (QOL) of children living with HIV at an institutional care home in Bangalore, India. The Sneha Care Home is a unique residence that provides educational and community support with a focus on physical, nutritional, medical, and psychological care for orphans and vulnerable children. Cross-sectional health measures and interview data were collected from 97 residents including 52 boys and 45 girls between 5 and 12 years of age (mean age = 9). QOL was measured with the Pediatric Quality of Life 4.0 (PedsQL) Inventory. Caregivers perceived children to have an overall higher QOL than was self-reported by children (total score 83 vs. 78). Our findings indicated self-reported QOL decreased with age of the child, while caregiver-reported QOL increased with age, suggesting a need to ensure greater psychological support for older children. Physical measures showed the children’s clinical severity of disease remained well controlled living in this residential, values-based care home.     

Health-related quality of life among disease-free stomach cancer survivors in Korea

Previous studies about the quality of life (QOL) in stomach cancer survivors focused on selected clinical parameters and did not consider the broader implications for overall health and QOL. We evaluated the impact of demographic and treatment-related factors on the QOL of stomach cancer survivors. We asked 391 stage I–III stomach cancer survivors who had been disease-free for at least 1 year after surgery to complete a demographic questionnaire, the European Organization for Research and Treatment of Cancer QLQ-C30 questionnaire, and its stomach module, QLQ-STO22. Survivors undergoing total gastrectomy reported greater eating restrictions than those undergoing subtotal gastrectomy. Receiving chemotherapy or radiotherapy did not significantly affect any QLQ-C30 or QLQ-STO22 scores. Role and emotional functioning improved with increasing age, and stomach-specific symptoms (pain, eating restrictions, and anxiety) lessened. Compared with female survivors, male survivors had better physical and role functioning. Smoking status was also a significant negative predictor of physical functioning and anxiety. Comorbidities and selected demographic characteristics had a greater effect than type of treatment on the QOL of post-operative stomach cancer patients. Notes: Drs Jae-Moon Bae and Sung Kim contributed equally to this work as first authors. An erratum to this article can be found at     

Health knowledge about symptoms of heart attack and stroke in adult survivors of childhood acute lymphoblastic leukemia

PURPOSE: Children with acute lymphoblastic leukemia (ALL), the most common pediatric malignancy, have a 5-year survival rate of better than 80%. Long-term survivors of childhood ALL, however, carry an elevated risk of early mortality from cardiac events and stroke and a disproportionately high prevalence of dyslipidemia and obesity, presumably as an adverse effect of treatment. METHODS: As part of a clinical follow-up study of 70 young adult survivors of childhood ALL, we evaluated the degree to which this high-risk group differed in knowledge about symptoms of heart attack and stroke from that of a population-based comparison group frequency-matched by age, sex, and body mass index. Questions from the Behavioral Risk Factor Surveillance System were used to assess health knowledge. RESULTS: Survivors of ALL scored considerably worse on symptom knowledge than did their population counterparts. The strongest association was observed for chest pain as a symptom of heart attack: ALL survivors were 14-fold more likely than the comparison group to answer the question incorrectly. Seventy-seven percent of survivors failed to identify pain in the jaw, neck, or back as a heart attack symptom. CONCLUSIONS: These results indicate an important gap in knowledge and underscore the need for health education among survivors of childhood leukemia that includes information about symptoms of myocardial infarction and stroke.     

Reliability and Validity of the PedsQL™ Oral Health Scale: Measuring the Relationship Between Child Oral Health and Health-Related Quality of Life

This study examined the reliability and validity of the Pediatric Quality of Life Inventory? (PedsQL) Oral Health Scale, a 5-item measure of child self-reported and parent-proxy reported pediatric oral health. One hundred twenty-six families participated during Phase 1 of the study, and 34 during Phase 2. Internal consistency and agreement between parent and child reports were examined. The construct, criterion-related, and convergent validity of the measure was supported by the results of this study. Using the PedsQL Oral Health Scale and the PedsQL 4.0 Generic Core Scales provide a generic health-related quality of life assessment that captures the physical, emotional, social, school, and oral domains of health.     

Factors Associated with Quality of Life Among Mothers Rearing 4- and 18-Month Old Infants in Japan

Objective The purpose of the present study was to investigate factors associated with quality of life (QOL) among mothers raising 4 and 18-month-old infants. Methods A cross-sectional study was conducted using self-report questionnaires. Participants included 400 women who took their infants for health checkups at a city in Aichi Prefecture, Japan (4-month-olds: n?=?197, 18-month-olds: n?=?203). Study variables included the World Health Organization Quality of Life-BREF (WHOQOL-BREF) scale, mother’s lifestyle, support from family, and other factors potentially related to QOL. Results For mothers of 4-month-old infants, total QOL was associated with emotional support from families (OR 6.09, 95% CI 2.13–17.43) and having enough sleep (7 h or more; OR 4.18, 95% CI 1.86–9.36). These mothers had shorter sleeping hours than mothers of 18-month-old infants. QOL of mothers of 18-month-old infants was associated with emotional support from families (OR 3.06, 95% CI 1.14–8.22) and using childrearing support facilities (OR 2.02, 95% CI 1.01–4.01). Conclusion Different factors contributed to mothers’ QOL as a function of infant age. Emotional support from families was associated with better QOL in both mother groups. Differences were that for mothers of 4-month-old infants, enough sleep was relevant to QOL, while in mothers of 18-month-old infants, childcare services helped improving their QOL.     

Validity of SF-12 summary scores in a Greek general population

Background

Little is known about the Quality of Life (QOL) in parents of children with developmental diseases as compared to other severe neurological or psychiatric disorders. Aims of the present study were: to evaluate QOL in parents of children affected by Pervasive Development Disorder (PDDs), Cerebral Palsy (CP) or Mental Retardation (MR) as compared to a control group (CG); to evaluate QOL of parents of patients with different types of PDDs, namely Autistic Disorder (AD), High Function Autism/Asperger Syndromes (HFA/AS) and Pervasive Developmental Disorder Not Otherwise Specified (PPD-NOS); and to compare the level of impairment in QOL of mothers and fathers within PDDs, CP, MR groups and between AD, HFA/AS, PDD-NOS sub-groups.

Methods

The sample consisted of 212 parents (115 mothers and 97 fathers) of 135 children or adolescents affected by PDDs, MR or CP. An additional sample of 77 parents (42 mothers and 35 fathers) of 48 healthy children was also included and used as a control group. QOL was assessed by the WHOQOL-BREF questionnaire.

Results

Compared with parents of healthy children, parents in the PDDs group reported impairment in physical activity (p = 0.0001) and social relationships (p = 0.0001) and worse overall perception of their QOL (p = 0.0001) and health (p = 0.005). Scores in the physical (p = 0.0001), psychological (p = 0.0001) and social relationships domains (p = 0.0001) and in the physical (p = 0.0001) and social relationships (p = 0.0001) domains were lower compared to the MR group CP group respectively. Little differences were observed between MR, CP and control groups. The level of impairment of physical (p = 0.001) and psychological (p = 0.03) well-being were higher in mothers than in fathers in the PDDs and CP groups respectively; in the other groups, and across all the other domains of QQL impairment was similar. There were no statistically significant differences in the scores between the AD, HFA/AS and PDD-NOS sub-groups, but parents in the HFA/AS sub-group seemed to display a lower QOL compared to the AD sub-group.

Conclusion

Parents of children with PDDs seem to display a higher burden, probably for a combination of environmental and genetic factors. Within this group of parents also those of HFA or AS people have higher stress. These finding must be taken into account in policy making to provide better and more specific supports and interventions for this group of diseases.     

The relationship of quality of life (QOL) with physical fitness, competence and stress response in elderly in Japan

OBJECTIVES: In order to evaluate the relationship of quality of life (QOL) with physical fitness, competence and stress response in the elderly population in Japan, a cross sectional field survey of elderly subjects was conducted. METHODS: This survey was taken in Naguri village, Saitama. The data collected included physical fitness, competence, stress response and QOL in addition to demographic variables. As for physical fitness indexes, grip strength (GS), single leg balance with eyes closed (SLB), bar grip ping reaction time (RT), trunk flexion (RF), ten-meter walking time (WT) and vital capacity (VC) were measured. The SF-36 was used for QOL assessment. RESULTS: A total of 120 elderly subjected participated to the survey. There were 42 males (73.5 +/- 5.74 years) and 78 females (74.2 +/- 6.17 years). The associations between physical health parameters in SF-36 and WT were highly significant: physical functioning (beta = -2.96, p < 0.001), role physical (beta = -3.64, p < 0.001), bodily pain (beta = -3.27, p < 0.001) and general health (beta = -3.14, p = 0.001). Psychological stress response had a negative correlation with social functioning (beta = -0.74, p = 0.024), role-emotional (beta = -2.34, p < 0.007) and mental health (beta = -0.97, p = 0.024) as determined by multiple regression analysis. The goodness-of-fit indexes of the structural equation model describing the relationships among physical fitness, competence, stress response and QOL indicated excellent fit to the data with GFI = 0.95 and AGFI = 0.88. Stress response showed relatively stronger influence on QOL than physical fitness or competence. CONCLUSION: Although there were slight differences in degree of influence, physical fitness, stress response and competence were found to be clearly related to QOL in elderly subjects. To keep good QOL status, it is important to maintain good physical fitness and level of competence and to reduce stress response.     

Utility of paediatric quality of life and revised illness perception questionnaires in adolescents with sickle cell disease

Quality of life (QOL) and illness perceptions are important considerations when managing adolescents with sickle cell disease (SCD). This study aims to assess the psychometric properties of the SCD-specific paediatric quality of life (PedsQL?-SCD) and the revised illness perception questionnaires (IPQ-R) in Jamaican adolescents with SCD. One hundred and fifty Jamaican adolescents (M: 74, F: 76; mean age 16.1 ± 1.9 years, range: 13–19 years) completed the IPQ-R, PedsQL?-SCD (teen and parent forms) and a knowledge questionnaire. Socio-demographic and clinical data were also collected and the latter were used to create a severity index. Instruments’ structure, feasibility, reliability and construct validity were assessed. The Cronbach’s alpha for the 24-item knowledge questionnaire was 0.85; IPQ-R domains from 0.56 to 0.79 (except ‘treatment control’: 0.34); PedsQL teen-form domains from 0.70 to 0.93 and PedsQL parent-form domains from 0.72 to 0.95. All scales and subscales had low floor effects but some teen subscales yielded high ceiling effects. The SCD-specific scale and subscales showed high sensitivity as they varied significantly by severity of illness. Factor analysis of causal items on IPQ-R yielded a three-factor structure, explaining a total variance of 52.1%. The factors could be labelled as ‘psychological’, ‘physical’ and ‘innate/behavioural risk factors’. The teen QOL scores had significant negative correlations with the severity score (r: ?0.46, p-value <0.001); IPQ identity domain (r: ?0.42, p-value <0.001); IPQ consequences subscale (r: ?0.36, p-value <0.001); IPQ cyclical timeline subscale (r: ?0.31, p-value <0.001) and IPQ emotional representation subscale (r: ?0.29, p-value <0.01). The severity index also had significant correlation with the QOL parent form (r: ?0.44, p-value <0.001); IPQ identity domain (r: 0.43, p-value <0.01) and IPQ consequences domain (r: 0.35, p-value <0.001).

In conclusion, both the IPQ-R and PedsQL?-SCD demonstrate robust psychometric properties in adolescents with SCD. Continuing longitudinal study will provide further assessment of the instruments such as ‘responsiveness to change’.     

Measuring quality of life in children referred for psychiatric problems: Psychometric properties of the PedsQLTM 4.0 generic core scales

OBJECTIVE: The aim of this study was to assess the psychometric properties of the Dutch translation of the Pediatric Quality of Life Inventory (PedsQL 4.0) generic core scales and assess its usefulness in measuring quality of life (QoL) in a child psychiatric population. METHODS: Reliability and validity of the PedsQL were assessed in 310 referred children (ages 6-18 years) and a comparison group consisting of 74 non-referred children (ages 7-18 years), and the parents in both groups. RESULTS: Confirmatory factor analysis resulted in a four-factor solution. Internal consistency reliability for the PedsQL Total Scale Score (alpha = 0.84 child self-report, alpha = 0.87 parent proxy-report), Psychosocial Health Score (alpha = 0.70 child self-report, alpha = 0.81 parent proxy-report), and most subscale scores were acceptable for group comparisons. Correlations between scores of fathers and mothers were large. Criterion-related validity was demonstrated by significantly lower PedsQL scores for referred vs. non-referred children. Significant correlations between PedsQL scales and measures of psychopathology showed convergent validity. Small correlations between PedsQL scales and intelligence of the child evidenced discriminant validity. CONCLUSION: The PedsQL seems a valid instrument in measuring QoL in children referred for psychiatric problems.     

Independent and Joint Impacts of Acid-Producing Diets and Depression on Physical Health among Breast Cancer Survivors

The purpose of this study was to examine the independent and joint associations of acid-producing diets and depressive symptoms with physical health among breast cancer survivors. We studied a cohort of 2944 early stage breast cancer survivors who provided dietary, physical health, demographic, and lifestyle information at baseline, year 1, and year 4. We assessed the intakes of acid-producing diets via two commonly used dietary acid load scores: potential renal acid load (PRAL) and net endogenous acid production (NEAP). Physical health was measured using the Rand 36-Item Short Form Health Survey (SF-36), consisting of physical functioning, role limitation due to physical function, bodily pain, general health, and overall physical health subscales. Increased dietary acid load and depression were each independently and significantly associated with reduced physical health subscales and overall physical health. Further, dietary acid load and depression were jointly associated with worse physical health. For instance, depressed women with dietary acid load higher than median reported 2.75 times the risk (odds ratio = 2.75; 95% confidence interval: 2.18–3.47) of reduced physical function and 3.10 times the risk of poor physical health (odds ratio = 3.10; 95% confidence interval: 2.53–3.80) compared to non-depressed women with dietary acid load lower than median. Our results highlight the need of controlling acid-producing diets and the access of mental care for breast cancer survivors.     

Health status of survivors of out-of-hospital cardiac arrest six months later.

The health status of long-term survivors of out-of-hospital cardiac arrest was studied six months after the event. Although Sickness Impact Profile scores for arrest survivors were higher (worse) than scores of enrollees in a prepaid closed panel health plan, in most cases problems of survivors were not incapacitating. Approximately three-fifths of survivors reported same or better memory function and stair climbing ability compared to that at time of arrest. Three-fifths of those who had been working continued to do so.     

留守儿童生存质量与心理健康的相关性及影响因素分析

目的 分析留守儿童生存质量与心理健康的相关性及留守儿童生存质量的影响因素,为改善留守儿童生存质量提供理论依据。方法 2017年9月-2020年9月抽取本地区某小学四年级至六年级208名留守儿童进行调查,用儿童生存质量普适性核心量表(PedsQL4.0)评价留守儿童生存质量,用心理健康诊断测验(MHT)评价留守儿童心理健康状况。用Pearson相关分析法分析留守儿童生存质量与心理健康的相关性,用多元线性逐步回归模型分析影响留守儿童生存质量的因素。结果 留守儿童PedsQL4.0量表结果总分为(80.52±9.58)分,MHT测验结果显示总分为(8.27±0.99)分。留守儿童生存质量得分与心理健康得分均呈负相关(P＜0.05)。多因素分析显示影响留守儿童生存质量总分的因素有照顾者受教育程度、有无兴趣爱好、与父母联系频率、父母外出务工时间(β=3.122、4.057、2.524、-2.018,P＜0.05)。结论 留守儿童生存质量与心理健康密切相关,照顾者受教育程度、有无兴趣爱好、与父母联系频率、父母外出务工时间等因素均能影响留守儿童生存质量。     

The Relationship of Patient–Provider Communication on Quality of Life among African-American and White Cancer Survivors

Prior research has demonstrated poorer patient–provider communication ratings among African American compared to White patients. The quality of patient–provider communication has been shown to impact treatment outcomes among cancer patients. A secondary data analysis design was used to determine the relationship of six patient–provider communication variables on the physical health quality of life (PHQOL) and mental health quality of life (MHQOL) of African American and White cancer patients (N = 479). We also examined whether the relationship between communication patterns and QOL differed based on race/ethnicity. Mean physical and mental health QOL scores for the sample were 69.8 and 77.6, respectively. After controlling for significant sociodemographic, clinical, and hospital variables, results showed that patients who experienced fewer interpersonal communication barriers who were more satisfied with the information given by providers had higher PHQOL and MHQOL scores. Additionally, patients who felt more comfort in asking questions or had fewer unmet information needs had higher MHQOL. A stratified analysis showed that the relationship of overall satisfaction with information on MHQOL was stronger among African American patients than White patients. Future research should focus on the development of interventions to improve patient–provider communication as a means for enhancing QOL outcomes among cancer survivors.     

母亲心理健康状况对婴儿体格和智能发育的影响

【目的】 了解婴儿期母亲的心理健康状况,研究母亲不同的心理健康状况对婴儿体格及智能发育的影响。 【方法】 用90项症状自评量表(SCL-90)对婴儿期母亲进行问卷调查,并对婴儿进行体格及智能评估(用Gesell发育诊断量表),所收集的资料均采用t检验。 【结果】 2 000例婴儿母亲的心理问卷调查显示:6个月婴儿母亲比1岁婴儿母亲显得更为抑郁及焦虑,婴儿的体格及智能发育与母亲的心理健康状况相关。 【结论】 关心母亲的心理健康是促进婴儿体格及智能发育的重要手段。     

Associations between a functional independence measure (WeeFIM) and the pediatric quality of life inventory (PedsQL4.0) in young children with physical disabilities

Objectives: To determine the association between functional status, measured by the WeeFIM and health-related quality of life (HRQL), measured by the PedsQL4.0 for children with physical disabilities. To explore child, parent and service-related factors associated with each of these measures. Patients: Parents of 115 children (2–5 years) with physical disabilities who were referred to occupational (OT) or physical therapy (PT). Mean age of the children was 3 years 7 months (±10 months), 79 were boys and 67 were diagnosed with global developmental delay. Results: Children had more difficulties with self-care tasks and cognitive abilities, as compared to mobility activities on the WeeFIM. The correlation between total WeeFIM and total PedsQL4.0 was r = 0.39. WeeFIM mobility and self-care quotients were each fairly correlated with PedsQL-Physical Health Summary Score (r _s = 0.29 and r _s = 0.28 respectively). There was no significant association between WeeFIM cognition quotient and each of PedsQL scores (r _s = 0.03–0.05). The receipt of PT services was highly associated (p<0.001) with lower scores on the PedsQL-Physical Health Summary score, PedsQL-Total score, and WeeFIM mobility quotient. Conclusion: The WeeFIM and the PedsQL4.0 appear to assess related but different constructs, supporting the need to incorporate complementary measures when measuring general health of children with disabilities.     

Health-related quality of life and utility scores in short-term survivors of pediatric acute lymphoblastic leukemia

Purpose

Increase of survival in pediatric acute lymphoblastic leukemia (ALL) has made outcomes such as health-related quality of life (HRQL) and economic burden more important. To make informed decisions on the use of healthcare resources, costs as well as utilities need to be taken into account. Among the preference-based HRQL instruments, the Health Utilities Index (HUI) is the most employed in pediatric cancer. Information on utility scores during ALL treatment and in long-term survivors is available, but utility scores in short-term survivors are lacking. This study assesses utility scores, health state, and HRQL in short-term (6 months to 4 years) ALL survivors.

Methods

Cross-sectional single-center cohort study of short-term ALL survivors using HUI3 proxy assessments.

Results

Thirty-three survivors (median 1.5 years off treatment) reported 14 unique health states. The majority of survivors (61 %) enjoyed a perfect health, but 21 % had three affected attributes. Overall, HRQL was nonsignificantly lower compared to the norm, although the difference was large and may be clinically relevant. Cognition was significantly impaired (p = 0.03).

Conclusion

Although 61 % of short-term survivors of ALL report no impairment, the health status of the other patients lead to a clinically important impaired HRQL compared to norms. Prospective studies assessing utility scores associated with pediatric ALL should be performed, enabling valid and reliable cost-utility analyses for policy makers to make informed decisions.