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1.
This study examined the health-related quality of life (HRQOL) of children with Inflammatory Bowel Disease (IBD) compared with physically healthy children and the impact of IBD and steroidal side-effects on children's HRQOL. The HRQOL of 49 children and adolescents (ages 10 to 18 years) with IBD and their parents who completed the Child Health Questionnaire (CHQ; Landgraf & Abetz, 1997; Landgraf, Abetz, & Ware, 1996) was compared to that of a sample of physically healthy children (N = 49). Caregivers of children with IBD reported that their children's physical and psychological health were more limited and that they experienced more emotional worry and greater impact on their personal time compared to caregivers reporting on healthy same-age children. Children and adolescents reported worse HRQOL than physically healthy children in only one domain: general health. Children and adolescents with more IBD-related and steroidal symptoms had less adequate HRQOL as reported by their parents. Limitations in HRQOL were most pronounced in children who experienced more frequent IBD-related symptoms together with symptoms of steroidal side effects.  相似文献   

2.
Objective : Rheumatic fever (RF) recurrence prevention requires secondary prophylaxis for at least ten years. However, recurrences of rheumatic fever (RRF) persist disproportionately affecting Māori and Pacific youth. Reasons for recurrence rates are not well understood and commonly attributed to patient non‐adherence. This research explored Māori and Pacific family experiences of RRF to better understand barriers to accessing secondary prophylaxis to inform health service improvements. Methods : Participants were Māori and Pacific patients who had RRF or unexpected rheumatic heart disease and their family; and health professionals working in RF contexts. Kaupapa Māori, Talanga and Kakala Pacific qualitative methodologies were employed. Data were thematically analysed using a general inductive approach. Results : Data collection included 38 interviews with patients and families (n=80), six focus group interviews and nine interviews with health providers (n=33) from seven geographic regions. Three key themes were identified where mismatches occurred between services and community needs: 1. Model of delivery; 2. Interpersonal approaches to care; and 3. Adolescent care. Conclusions and Public health implications : Successful RRF prevention requires interventions to address structural causes of inequity, appropriate clinical guidelines and quality health services. Service‐delivery models should provide regular prophylaxis in an accessible manner through culturally‐safe, community‐based, age‐appropriate care.  相似文献   

3.
Background Although parent-proxy reports of health-related quality of life (HRQOL) are only moderately correlated with child reported HRQOL, it remains unknown why these scores differ. The aim of this study was to use a qualitative methodology to examine why parents and children report different levels of HRQOL. Method The sample consisted of 15 parent–child pairs. A think-aloud technique was used where parents and children were given a generic HRQOL instrument (KIDSCREEN) and instructed to share their thoughts with the interviewer. Qualitative analyses were conducted to assess whether parents and children base their answer on different experiences or reasoning, have different response styles, or interpret the items differently. Results There was discordance between parents and children, in terms of rating scale and in terms of the reasoning for their answer. Children tended to have different response styles to parents, where for example, children tended to provide extreme scores (highest or lowest score) and base their response on one single example, more than parents. Parents and children interpreted the meaning of the items very similarly. Discussion This study provides evidence to suggest that discordance among parent-child pairs on KIDSCREEN scores may be as a result of different reasoning and different response styles, rather than interpretation of items. These findings have important implications when parent-proxy reported HRQOL is used to guide clinical/treatment decisions.  相似文献   

4.
OBJECTIVE: To examine differences in health-related quality of life (HRQL) of children living in different socio-economic contexts in Australia. METHODS: Parental reports describing the HRQL and socio-economic status of a random national sample of 3,597 school-age children were obtained using the Child Health Questionnaire (CHQ) and a standardised socio-economic interview. Response rate was 70%. RESULTS: Children in families of higher income, whose parents had more years of schooling and were employed and children who lived in two-parent, original families had significantly higher HRQL across a range of domains assessed by the CHQ. CONCLUSION: Children from lower socio-economic backgrounds in Australia have a significantly more negative experience of health and wellness. Such differences may well increase unless deliberate political attention is given to addressing the widening differences in relative wealth in Australia.  相似文献   

5.
Rheumatic fever (RF) is a sequel of group A streptococcal throat infection and occurs in untreated susceptible children. Rheumatic heart disease (RHD), the major sequel of RF, occurs in 30%-45% of RF patients. RF is still considered endemic in some regions of Brazil and is responsible for approximately 90% of early childhood valvular surgery in the country. In this study, we present a 15-year clinical follow-up of 25 children who underwent surgical valvular repair. Histopathological and immunological features of heart tissue lesions of RHD patients were also evaluated. The patients presented severe forms of RHD with congestive symptoms at a very young age. Many of them had surgery at the acute phase of RF. Histological analysis showed the presence of dense valvular inflammatory infiltrates and Aschoff nodules in the myocardium of 21% of acute RHD patients. Infiltrating T-cells were mainly CD4+ in heart tissue biopsies of patients with rheumatic activity. In addition, CD4+ and CD8+ infiltrating T-cell clones recognized streptococcal M peptides and cardiac tissue proteins. These findings may open the possibilities of new ways of immunotherapy. In addition, we demonstrated that the surgical procedure during acute phase of the disease improved the quality of life of young RHD patients.  相似文献   

6.
Objective: To describe, from a patient perspective, factors leading to suboptimal management of individuals with rheumatic fever (RF) and rheumatic heart disease (RHD) among members of the Kimberley population. Method: Qualitative in‐depth semistructured and repeated interviews of seven Kimberley patients, or parents of children, with rheumatic fever and/or rheumatic heart disease, during 1998. Results: Participants showed variable levels of understanding about RF/RHD, often relating to the need for secondary prophylaxis. Compliance with medication was closely linked with positive patient–staff interactions. From the perspective of health care, living in a remote location was frequently described as a negative influence. Participants desire more accessible and culturally appropriate opportunities for learning about their disease. Conclusions: Participants focused on issues closely related to effective and ineffective management of RF/RHD. The lessons learned are indicators for health staff attempting to improve the quality of management that people receive.  相似文献   

7.
目的 探讨社会支持体系对学龄期白血病患儿的情绪状态及其家长的心理健康和生活质量的影响。方法 采用前瞻性、病例-对照研究方法,通过心理调查问卷分析,分别调查白血病、非恶性血液系统疾病及健康学龄期儿童及其家长,比较社会支持干预前后白血病患儿的情绪及其家长心理状况和生活质量的变化。社会支持干预包括信息支持、经济支持、心理支持等方面。结果 1)白血病患儿较对照组儿童存在较多的负性情绪(P<0.05),经过社会支持干预后,其躯体化/惊恐、广泛性焦虑、学校恐惧和焦虑总分方面与正常对照组相比,差异无统计学意义(P>0.05),且主观心境好转。2)白血病组患儿家长的心理问题突出,表现在各因子得分均高于对照组(P<0.05);经过社会支持干预,人际关系敏感、敌对、恐怖、偏执方面有明显改善(P<0.05)。3)家长的心理问题与患儿的负性情绪存在正相关(P<0.05)。4)社会支持干预下,白血病患儿家长的生活质量总评提高,躯体、社会和心理维度均较无社会支持组家长有所改善(P<0.05)。结论 学龄期白血病患儿存在较多的负性情绪,其家长存在较多的心理问题,积极的社会支持系统有助于减少患儿的负性情绪及改善家长的心理健康,提高家庭的生活质量。  相似文献   

8.
This study examined associations between pain, physical activity, physical fitness, and health-related quality of life (HRQOL) in overweight and obese children. Participants were 270 overweight and obese children 8–12 years of age and their parents. Children were separated into no pain frequency, low pain frequency, and high pain frequency groups. Children in the low pain frequency group spent less time in moderately intense physical activities compared to the no pain frequency group. Children in the high pain frequency group reported significantly lower HRQOL in most domains of functioning compared to children in the no pain and low pain frequency groups. Pain in overweight and obese children may negatively impact physical activity and HRQOL and should be assessed and treated in research and clinical work.  相似文献   

9.
Objective Although primary caregiver proxy reports of health‐related quality of life (HRQOL) are often used for healthcare decision making when child self‐reports are unable to be collected (because of a variety of reasons such as child illness, disability or age), we have little understanding of the correlates of parent‐proxy reports. The aim of this study was to examine the relationship between parental depression and parent‐proxy reported QOL for primary caregivers (mothers and fathers), using a multidimensional HRQOL instrument. It was hypothesized that maternal depression would be negatively correlated with maternal reported HRQOL, but that paternal depression would not be correlated with paternal reported HRQOL. Methods Data were from parents of children aged 4–5 years (n = 4983) involved in the Longitudinal Study of Australian Children. A questionnaire assessing parental depression (Kessler‐6) and proxy reported HRQOL (Pediatric Quality of Life Inventory) was completed by the primary caregiver. Results For maternal primary caregivers, maternal depression was negatively correlated with all domains of maternal proxy reports of HRQOL (r = ?0.24 to r = ?0.36). For paternal primary caregivers, there was no relationship between paternal depression and paternal proxy reports of HRQOL. Multiple regression analyses demonstrated that maternal depression was a significant predictor of total HRQOL, accounting for 12% of the variance. For paternal mental health, depression did not predict parent‐proxy reported total HRQOL. Conclusion These results highlight the importance of assessing maternal mental health when measuring proxy reported QOL. Further research is needed in this area to examine the relationship between parental depression and proxy reported HRQOL (including both mothers and fathers, where possible), as well as child self‐reported HRQOL.  相似文献   

10.

Purpose

Health-related quality of life (HRQOL) is not only a degree of health but also reflects patient perceptions and expectations of health. For children with brain tumors, better understanding of HRQOL requires the use of complementary reports from parents and interviewer-administered reports for children. Here, we aimed to test whether or not the trait anxiety of children and the psychological distress of their parents influence children’s and parents’ responses to HRQOL questionnaires, and whether or not the report-administration method for children influences children’s responses to HRQOL questionnaires.

Methods

One hundred and thirty-four children aged 5–18 with brain tumors and one of their parents completed the Pediatric Quality of Life Inventory? (PedsQL?) Brain Tumor Module questionnaires. In addition, the children also completed the State-Trait Anxiety Inventory for Children (STAIC), and the parents also completed the Kessler-10 (K10) and health and sociodemographic characteristics questionnaires. The child questionnaires were administered either by the child (self-administered) or an interviewer. Rater-dependent perceptions about HRQOL were derived from the subscales scores of the PedsQL? Brain Tumor Module using structural equation modeling based on a multitrait-multimethod model. The STAIC trait-anxiety score, K10 score, report-administration method, and other health and sociodemographic factors related to each child’s or parent’s perceptions were identified through multiple linear regression analyses of the questionnaire responses. We used a path analysis to estimate the change in a PedsQL? child-reported score that occurs when interviewer-administration changes the child’s perception about HRQOL.

Results

Surveys for 89 children were self-administered while those for 45 were interviewer-administered. The perceptions of the children and parents were calculated by fitting data to the model (chi-squared P = 0.087, normed fit index = 0.932, comparative fit index = 0.978, standardized root mean squared residual = 0.053, and root mean square error of approximation = 0.054). The children’s perception of HRQOL was affected by their STAIC trait-anxiety score (b = ?0.43, 95% CI [?0.60, ?0.25]). The parent’s perception was affected by their child’s treatment status (b = 0.26, 95% CI [0.09, 0.43]), the parent’s K10 score (b = ?0.21, 95% CI [?0.37, ?0.04]), and by education level (b = 0.17, 95% CI [0.00, 0.34]). The change in the child-reported PedsQL? score in relation to the method of administration ranged from ?1.1 (95% CI: ?3.5, 1.3) on the procedural anxiety subscale to ?2.5 (95% CI: ?7.6, 2.6) on the movement and balance subscale.

Conclusion

Child-reporting of HRQOL is little influenced by the method of administration. Children’s perception about HRQOL tended to be influenced by their trait anxiety, while parents’ perception was influenced by their psychological distress, academic background, and their child’s treatment status.  相似文献   

11.

Purpose

To investigate (1) the contributions of sex, age, nutritional status- and physical-fitness-related variables on health-related quality of life (HRQOL) in Spanish children with cystic fibrosis, and (2) the agreement on HRQOL between children and their parents.

Methods

In 28 children aged 6?C17?years, body mass index percentile, percentage body fat, physical activity, pulmonary function, cardiorespiratory fitness, functional mobility, and dynamic muscle strength were determined using objective measures. HRQOL was measured using the revised version of the cystic fibrosis questionnaire. Simple and multiple linear regression analyses were performed to determine the variables associated with HRQOL. To assess the agreement on HRQOL between children and parents, intra-class correlation coefficients (ICCs) were calculated.

Results

Girls reported worse emotional functioning, a higher treatment burden, and more respiratory problems than boys. Greater functional mobility appeared associated with a less favourable body image and more eating disturbances. Agreement on HRQOL between children and parents was good to excellent, except for the domain of treatment burden.

Conclusions

Sex and age were stronger predictors of HRQOL than nutritional status- or physical-fitness-related variables. Children reported a lower treatment burden than their parents perceived them to have.  相似文献   

12.

Purpose

Celiac disease (CD) is a chronic inflammatory disease requiring constant management with a gluten-free diet (GFD). Little is known about how CD impacts on health-related quality of life (HRQOL) in children and adolescents, and how they feel about and cope with CD and GFD. This qualitative study explores the impact of CD and GFD on HRQOL in everyday living of children and adolescents.

Methods

In focus group interviews, we investigated HRQOL in children and adolescents with CD in order to identify patient concerns in living with CD and on a GFD. Seven focus groups were formed with 23 children/adolescents and 3 parents. Interviews were transcribed verbatim. Grounded theory approach was applied to analyse the interviews.

Results

CD had varying impact on the children and adolescents HRQOL. Two major categories emerged with importance for HRQOL in children and adolescents with CD, having CD (constructed from the six subcategories: symptoms, the diagnosis-process, self-perception, awareness of CD, social and emotional impact of CD, and thoughts about the future) and coping with CD (constructed from the two subcategories: coping with food and coping with social situations). The complexity of coping with CD in social situations that involve food is presented in a flowchart.

Conclusions

Children and adolescents showed large diversity in how much impact CD has on their HRQOL. Different ways of coping with CD and GFD were identified. Findings will be used to generate a patient-driven disease-specific questionnaire to measure HRQOL in children and adolescents with CD.  相似文献   

13.
Our objective was to examine health-related quality of life (HRQOL) in publicly insured children with special health care needs (CSHCN). Data were obtained from 183 caregivers of CSHCN (M = 10 years; 54% African American) in urban health clinics. CSHCN had poorer physical and psychosocial HRQOL than children in a normative sample. In regression analysis, children who had more health problems and more health visits in the previous 12 months had poorer physical HRQOL. Poorer psychosocial HRQOL was associated with more health problems and urban life stressors. Implications for practice and policy are discussed.  相似文献   

14.

Purpose

To examine the association of lifetime exposure to traumatic events with health-related quality of life (HRQOL) and psychosocial health in children aged 3 through 5 years.

Methods

This study is a community-based, cross-sectional survey of 170 children and their parents. Traumatic events were assessed by the Traumatic Events Screening Inventory—Parent Report Revised using criteria for potentially traumatic events in young childhood outlined by the Zero to Three working group. HRQOL of young children was measured using the 97-item Infant/Toddler Quality of Life Questionnaire, and psychosocial health was measured using the Child Behavior Checklist 1.5–5.

Results

One hundred and twenty-three (72 %) of children had experienced at least one type of trauma event. Children who had been exposed to 1–3 types of trauma and those exposed to 4 or more types of trauma had significantly worse HRQOL and psychosocial health than children not exposed to trauma. Significant effect sizes between children exposed to low levels or high levels of traumatic events and children not exposed to trauma ranged from small to large.

Conclusions

Exposure to traumatic events in early childhood is associated with less positive HRQOL and psychosocial health. Cumulative trauma exposure led to significant effects in outcome variables in this population. Interventions to decrease trauma exposure and to reduce significant stress in early childhood associated with exposure to trauma may be appropriate strategies for preventing negative health conditions throughout the life span.  相似文献   

15.
Not all cases of rheumatic fever (RF) end up as rheumatic heart disease (RHD). The fact raises the possibility of existence of a subgroup with characteristics that prevent RF patients from developing the RHD. The present study aimed at exploring the risk factors among patients with RHD. The study assessed the risk of RHD among people both with and without RF. In total, 103 consecutive RHD patients were recruited as cases who reported to the National Centre for Control of Rheumatic Fever and Heart Disease, Dhaka, Bangladesh. Of 309 controls, 103 were RF patients selected from the same centre, and the remaining 206 controls were selected from Shaheed Suhrawardy Medical College Hospital, who got admitted for other non-cardiac ailments. RHD was confirmed by auscultation and colour Doppler echocardiography. RF was diagnosed based on the modified Jones criteria. An unadjusted odds ratio was generated for each variable, with 95% confidence interval (CI), and only significant factors were considered candidate for multivariate analysis. Three separate binary logistic regression models were generated to assess the risk factors of RF, risk factors of RHD compared to non-rheumatic control patients, and risk factors of RHD compared to control with RF. RF and RHD shared almost a similar set of risk factors in the population. In general, age over 19 years was found to be protective of RF; however, age of the majority (62.1%) of the RHD cases was over 19 years. Women [odds ratio (OR)=2.2, 95% CI 1.1-4.3], urban resident (OR=3.1, 95% CI 1.2–8.4), dwellers in brick-built house (OR=3.6, 95% CI 1.6-8.1), having >2 siblings (OR=3.1, 95% CI 1.5- 6.3), offspring of working mothers (OR=7.6, 95% CI 2.0-24.2), illiterate mother (OR=2.6, 95% CI 1.2-5.8), and those who did not brush after taking meals (OR=2.5, 95% CI 1.0-6.3) were more likely to develop RF. However, more than 5 members in a family showed a reduced risk of RF. RHD shared almost a similar set of factors in general. More than three people sharing a room also showed an increased risk of RHD (OR=1.9, 95% CI 1.0-3.4), in addition to the risk factors of RF. Multivariate model also assessed the factors that may perpetuate RHD among RF patients. Overcrowding (OR=2.4, 95% CI 1.2-4.7) and illiteracy (OR=2.4, 95% CI 1.1-5.2) posed the risk of RHD in the RF patients. The study did not find new factors that might pose an increased risk, rather looked for the documented risk factors and how these operate in the population of Bangladesh.Key words: Case-control study, Rheumatic fever, Rheumatic heart disease, Risk factors, Bangladesh  相似文献   

16.
Myelomeningocele (MMC) is the most complex congenital birth defect compatible with life. To provide the best health care for children with MMC, clinicians and researchers have to understand health and functional status of their patients as well as factors influencing their quality of life (QOL). The objective is to review studies that assess health‐related quality of life (HRQOL) and determinants of HRQOL in children with MMC. The data sources include MEDLINE, along with reference lists of relevant reviews and included articles. Study eligibility criteria are quantitative studies that assess HRQOL using validated HRQOL instrument. Participants include children aged 0–18 years with diagnosis of MMC or spina bifida. Risk of bias was assessed using the Hayden system for non‐randomized studies. Narrative synthesis and tables of results of HRQOL studies were conducted. Children with MMC have decreased HRQOL compared with normative population. Physical HRQOL is the most exposed aspect of QOL, while discrepancies in psychosocial domains vary by study. Many determinants of QOL have been found, and it is still not clear which determinant can be described as the strongest predictor. Psychosocial factors are the most consistent determinants of HRQOL.Heterogeneous study sample size, study designs, determinant and outcomes measures limited synthesis of findings. The HRQOL in children with MMC is complex and mediated by a number of associated medical problems, together with a variety of psychosocial and environmental factors. Future research is needed (a) on the relation between complex medical problems, functional independence, parent's and clinician's expectation and HRQOL in children and (b) to assess the differences in HRQOL by social environment and healthcare system.  相似文献   

17.
Background: Life quality has become a widely used concept within rehabilitation and occupational therapy practice.

Aim: This study explored child and parent perspectives of life quality of children with physical impairments compared with a group of non-disabled children.

Method: Data were collected with the Icelandic self- and proxy-reported versions of the KIDSCREEN-27. For children with physical impairments, reports from 34 children and 40 parents were included in the analyses, and in control group reports from 429 children and 450 parents were included.

Results: Children with physical impairments evaluated their life quality within the average range on four out of five life quality dimensions. The lowest scores were within the physical well-being dimension. Self-reported scores of children with physical impairments were higher than those of their parents on all dimensions except autonomy and parent relations. Thus, the parents considered more environmental and personal factors to negatively influence their child’s life quality than children did themselves.

Conclusion: Children with physical impairments experience their life quality similarly to non-disabled children.

Significance: Focus on life quality can help occupational therapists to identify what circumstances positively or negatively influence client well-being and to focus more on contextual factors that contribute to disablement.  相似文献   


18.
While data on the health-related quality of life (HRQOL) of adults are accumulating, very little is known about the HRQOL—and especially the perceived HRQOL—of children. In our study we introduced a 16-dimensional, generic self-assessment measure of HRQOL (16D) for early adolescents, and demonstrated its use with four populations of children aged 12–15: (1) 239 normal schoolchildren, (2) patients waiting for organ transplantation (n=5), (3) patients with genetic skeletal dysplasias (n=19), and (4) patients with epilepsy (n=32). The HRQOL profiles of the patients differed significantly according to the diagnosis, giving support to its construct validity. The reliability of the measure was high: its repeatability coefficient was 91%. The quality of life ratings of the healthy boys and their parents differed on the dimensions of distress, vitality, speech, mental function, and discomfort and symptoms (p<0.05). In addition, there were significant differences in the health-related valuations between the girls, boys and their parents. We conclude that the assessment of quality of life of adolescents should be based on data collected from the adolescents themselves. Further, the 16D is so far the only generic HRQOL measure designed specifically for this purpose. It is capable of differentiating the HRQOL of healthy adolescents as well as patients with various diagnoses. Our experience also indicates that it is easy to use, yet it seems comprehensive, reliable, and valid.Supported in part by the Foundation for Economic Education (J.R.) and the Paulo Foundation.  相似文献   

19.
目的 分析孤独症患儿对其父母生存质量的影响,为有关机构展开工作提供参考依据。方法 采用普适性生存质量测定量表(SF-36),对90例孤独症患儿父母及120例正常儿童的父母进行评定。结果 1)孤独症组父母的生存质量总分及各领域评分均低于正常父母组(P<0.01);2)低功能孤独症组的父母生存质量评分明显低于高功能孤独症组(P<0.01);3)患儿家长的生存质量与患儿病情程度呈负相关,与智力水平呈正相关 (P<0.01)。 结论 孤独症儿童对患儿父母生存质量有影响,低功能孤独症患儿则影响更大。  相似文献   

20.
Objective To assess the reliability and validity of the Japanese translation version of the Pediatric Quality of Life Inventory™ 4.0 Short Form 15 (PedsQL™ 4.0 SF15). Methods The PedsQL™ 4.0 SF15 was administered to 229 schoolchildren aged 6–13 years and 100 pediatric outpatients aged 5–18 years and their parents. Results Internal consistency reliability exceeded 0.70 for both proxy-reported and self-reported scales. Test–retest reliability demonstrated large values for parent proxy-report (range: 0.68–0.79) and moderate to large values for child self-report (range: 0.46–0.73). Parent proxy-report health-related quality of life (HRQOL) was higher than child self-report in all scales except for School Functioning. The correlations between the reports of the parents and children were moderate to high. Gender differences were observed in Social Functioning, School Functioning, and Psychosocial Health Summary, with girls reporting higher HRQOL than boys. Factor analysis indicated that four factors were extracted from the PedsQL™ 4.0 SF15 and these four factors corresponded mainly to the four scales. Known groups validity was established for proxy-report and self-report with higher HRQOL being reported for healthy children than those with psychosomatic complaints including headache and abdominal pain. Conclusion The Japanese translation version of the PedsQL™ 4.0 SF15 demonstrates good reliability and validity and could be used as a measure of HRQOL for transcultural comparisons of pediatric research in school settings and healthcare services research.  相似文献   

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