Parent proxy‐reported quality of life for children with cerebral palsy: is it related to parental psychosocial distress?

Background Parent‐proxy reports of quality of life (QOL) are often used to guide decisions about children with cerebral palsy (CP), although little is known about the factors that influence parent‐proxy reports. The aim of this study was to examine (i) the relationship between parental psychosocial distress and parent proxy‐reported QOL; and (ii) whether parental psychosocial distress mediates the relationship between child impairment and proxy‐reported QOL. Methods A sample of 201 primary caregivers of children aged 4–12 years with CP completed the Cerebral Palsy Quality of Life Questionnaire for Children, a condition‐specific QOL instrument, and a measure of psychosocial distress, the Kessler 10. The children, evenly distributed by gender (56% male) were sampled across Gross Motor Function Classification System levels (Level I = 18%, II = 28%, III = 14%, IV = 11%, V = 27%). Results Consistent with the hypotheses, parental distress was negatively correlated with all domains of parent proxy‐reported QOL (r=?0.18 to r=?0.55). The relationship between impairment and proxy‐reported QOL was mediated by parental distress for five of the seven domains of QOL (social well‐being and acceptance, feelings about functioning, participation and physical health, emotional well‐being and self‐esteem, and pain and impact of disability). Child impairment did not predict access to services or family health. Conclusion This is the first study that assesses the relationship between parental distress and proxy‐reported QOL for children with CP. Although the cross‐sectional nature of the available data precludes any statements of causality, the results suggest that, when using parent proxy, the parents' psychological state should also be measured. This is particularly important when, as is often the case for child disability research, proxy‐reported QOL are the only available data.     

Differences in Child versus Parent Reports of the Child's Health-Related Quality of Life in Children with Epilepsy and Healthy Siblings

ObjectivesSelf versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We examined differences in child versus parent report of the child's health-related quality of life (HRQOL) in a large prospective, community-based study of newly diagnosed childhood epilepsy that included children with epilepsy (case) and sibling controls.MethodsHRQOL was assessed 8 to 9 years after initial diagnosis of epilepsy in a subset of 143 case-control matched pairs using the Child Health Questionnaire (CHQ), a generic HRQOL measure with child (CHQ-CF87), and parent (CHQ-PF50) versions.ResultsThere were no significant differences between self-reported case and sibling control HRQOL scores on 9 of 11 scales or 2 global items. Nevertheless, parent ratings were significantly better (higher HRQOL) for sibling controls compared with epilepsy cases on 10 of 12 scales, global behavior and general health items, and the physical and psychosocial summary scores (P ≤ 0.05). Parent–child agreement was low for cases and controls (kappa 0.27–0.33) for three single-item questions with the same wording on parent and child versions. Parent ratings of the case's HRQOL were often significantly associated with 5-year remission status and current antiepileptic drug use, but the case's self-reported HRQOL scores were not. In contrast, current pharmacoresistance was often associated with the child and parent ratings of the child's HRQOL.ConclusionChildren with epilepsy report HRQOL that is comparable to that of sibling controls, while parents rate children with epilepsy as having lower HRQOL than sibling controls. Measuring outcomes in studies of this population should incorporate both perspectives.     

Agreement between children with cancer and their parents in reporting the child's health-related quality of life during a stay at the hospital and at home

Background   Although parent–child agreement is widely studied in the paediatric clinical sample, no study has compared parent–child agreement during home and hospital stays. We aimed to determine the level of agreement in reports of health-related quality of life (HRQoL) between parents of children with cancer and the children themselves during a stay in the hospital and a stay at home.
Methods   The sample consisted of 28 children, aged 9–18 years old, hospitalized and treated for cancer in a Children's University Hospital in France. The child's HRQoL was assessed by the parent and child versions of the Child Health Questionnaire. Parent–child agreement was estimated by the intraclass correlation coefficient. Potential predictors influencing the parent–child agreement were investigated.
Results   For both locations of stay, parent scores from the HRQoL survey were lower than those for their children for all domains, except for the general behaviour during the home stay. Scores for both parents and children, for all domains, were lower during the hospital than the home stay. The parent–child agreement was better for mental health, self-esteem, general health and family activities during the hospital stay (range 0.32–0.66), but was better for physical function, role/physical and general behaviour during the home stay (range 0.45–0.71). Few predictors of parent–child agreement were found.
Conclusions   Agreement between parents and their children who have cancer in reporting the child's HRQoL differed by location of stay. For the home stay, the agreement was better for domains related to the child's physical life, but for the hospital stay, it was better for domains related to the child's behaviour/psychological life.     

The relationship between proxy reported health-related quality of life and parental distress: gender differences

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.     

Child involvement in the paediatric consultation: a qualitative study of children and carers' views

Background This study aimed to investigate child and carers' attitudes towards child involvement in paediatric consultations. Methods Semi‐structured qualitative interviews explored child and carers' attitudes towards child involvement at different stages of the paediatric consultation process. Twenty families (21 children, 17 mothers and 5 fathers) were interviewed following a paediatric (index) consultation in two UK paediatric inpatient and outpatient departments. Results All but one family felt the child should be involved at some stage of the consultation process but the desired extent and nature of involvement depended on child, family and illness characteristics, as well as on the stages of the consultation. During history gathering, some parents and children felt it was the decision and responsibility of the parent to facilitate communication between the child and the doctor. Others expected the doctor to decide when and how to facilitate this process. At diagnosis the desired amount of information given to the child increased with increasing maturity in the child. Some felt making a diagnosis should be a collaborative process; others felt it was solely the domain of the doctor. In discussing and making a treatment plan, some children wanted to be given the choice of being involved and some wanted their parents to be responsible for implementing the plan. Some families with a seriously ill child, however, wanted the burden of involvement in the management plan taken away from them. Conclusions Families vary in their views about involvement of children in paediatric consultations in a way that may be unique to each child, family and illness. Moreover, different views were expressed about involvement in each stage of the consultative process and in management of the child's health. The challenge for doctors is to determine the level of involvement and information exchange favoured by a particular parent and child. Good practice recommendations emerging from the analysis are described.     

Health-related quality of life of severely obese children and adolescents

Context One in seven US children and adolescents is obese, yet little is known about their health‐related quality of life (QOL). Objective To examine the health‐related QOL of obese children and adolescents compared with children and adolescents who are healthy or those diagnosed as having cancer. Design, setting and participants Cross‐sectional study of 106 children and adolescents (57 males) between the ages of 5 and 18 years [mean (SD) 12.1 (3) years], who had been referred to an academic children's hospital for evaluation of obesity between January and June 2002. Children and adolescents had a mean (SD) body mass index (BMI) of 34.7 (9.3) and BMI z‐score of 2.6 (0.5). Main outcome measures Child self‐report and parent‐proxy report using a paediatric QOL inventory generic core scale (range 0–100). The inventory was administered by an interviewer for children aged 5 through 7 years. Scores were compared with previously published scores for healthy children and adolescents and children and adolescents diagnosed as having cancer. Results Compared with healthy children and adolescents, obese children and adolescents reported significantly (P < 0.001) lower health‐related QOL in all domains [mean (SD) total score, 67 (16.3) for obese children and adolescents; 83 (14.8) for healthy children and adolescents]. Obese children and adolescents were more likely to have impaired health‐related QOL than healthy children and adolescents [odds ratio (OR) 5.5; 95% confidence interval (CI) 3.4–8.7] and were similar to children and adolescents diagnosed as having cancer (OR 1.3; 95% CI 0.8–2.3). Children and adolescents with obstructive sleep apnoea reported a significantly lower health‐related QOL total score [mean (SD), 53.8 (13.3)] than obese children and adolescents without obstructive sleep apnoea [mean (SD), 67.9 (16.2)]. For parent‐proxy report, the child or adolescent's BMI z‐score was significantly inversely correlated with total score (r = ?0.246; P = 0.01), physical functioning (r = ?0.263; P < 0.01), social functioning (r = ?0.347; P < 0.001), and psychosocial functioning (r = ?0.209; P = 0.03). Conclusions Severely obese children and adolescents have lower health‐related QOL than children and adolescents who are healthy and similar QOL as those diagnosed as having cancer. Physicians, parents and teachers need to be informed of the risk for impaired health‐related QOL among obese children and adolescents to target interventions that could enhance health outcomes.     

An Examination of the Trajectory of the Adult Child's Caregiving for an Elderly Parent

Study objective was to delineate stages in filial role development from recognition of responsibility to provision of help. Fifty‐three adult child‐elderly parent pairs reported on parent health status and child filial behaviors. Child concern was unrelated to parent health status; urging parent to modify health was moderately related to health status; child's action to provide help was related only to parent's functional adequacy (p < .05 ). Pair members' reports agreed most strongly regarding functional adequacy.     

Interparental Agreement,Parent‐Child Responsiveness,and Children's Peer Competence*

This study examined associations between interparental agreement, parent‐child responsiveness, and children's social competence with peers. Assessments of interparental agreement among 33 parenting dyads were based on (a) parental agreement on beliefs about the use of control in childrearing, and (b) parental similarity in the use of initiations during play with child. Parent‐child responsiveness was assessed by subjective ratings of parent‐child play interaction. Teachers and peers provided assessments of children's social competence. Associations were found between parental agreement in beliefs about control and parental similarity in the use of control with child. Parental agreement on beliefs about the use of control and parental similarity in the use of control were both positively associated with children's social competence. Parent‐child responsiveness also was positively associated with children's social competence. Associations between agreement measures and children's social competence were partially mediated by parent‐child responsiveness. Implications for research and practice are discussed.     

Discrepancy between expected and actual child support payments: predicting the health and health-related quality of life of children living in low-income, single-parent families

Objective Although the amount and frequency of child support payments received by single parents are often erratic and fluctuate, no study to date has quantitatively explored how the discrepancy between expected and actual payments relates to child health. This study aims to examine whether the discrepancy between expected and actual child support payments predicts a range of child health outcomes, including global health, health‐related quality of life, involvement in activities and parental psychological distress. Methods This study used results from the Longitudinal Study of Australian Children, which included a sample of parents of children aged 4–5 years (n = 4983). The questionnaire was completed by the parent who spent the most time with the child and knew the child best. From the 4983 families, 332 low‐income single parents reliant on welfare with a formal or informal child support order in place were identified. Results After controlling for income, the discrepancy between expected and actual child support predicted school functioning, conduct problems, total mental health problems and involvement in activities. Discrepancy between expected and actual child support payments did not predict the remaining health‐related quality of life domains, mental health domains, global child health or parental psychosocial distress. Conclusion This was the first study to examine how the discrepancy between expected and actual child support payments relates to child health, providing important data on the effectiveness of the child support system for children's well‐being. These findings highlight the potential impact of the discrepancy on school functioning, conduct problems, total mental health problems and involvement in activities.     

Preference-based measures to obtain health state utility values for use in economic evaluations with child-based populations: a review and UK-based focus group assessment of patient and parent choices

Background

No current guidance is available in the UK on the choice of preference-based measure (PBM) that should be used in obtaining health-related quality of life from children. The aim of this study is to review the current usage of PBMs for obtaining health state utility values in child and adolescent populations, and to obtain information on patient and parent–proxy respondent preferences in completing PBMs in the UK.

Methods

A literature review was conducted to determine which instrument is most frequently used for child-based economic evaluations and whether child or proxy responses are used. Instruments were compared on dimensions, severity levels, elicitation and valuation methods, availability of value sets and validation studies, and the range of utility values generated. Additionally, a series of focus groups of parents and young people (11–20 years) were convened to determine patient and proxy preferences.

Results

Five PBMs suitable for child populations were identified, although only the Health Utilities Index 2 (HUI2) and Child Heath Utility 9D (CHU-9D) have UK value sets. 45 papers used PBMs in this population, but many used non-child-specific PBMs. Most respondents were parent proxies, even in adolescent populations. Reported missing data ranged from 0.5 to 49.3%. The focus groups reported their experiences with the EQ-5D-Y and CHU-9D. Both the young persons’ group and parent/proxy groups felt that the CHU-9D was more comprehensive but may be harder for a proxy to complete. Some younger children had difficulty understanding the CHU-9D questions, but the young persons’ group nonetheless preferred responding directly.

Conclusion

The use of PBMs in child populations is increasing, but many studies use PBMs that do not have appropriate value sets. Parent proxies are the most common respondents, but the focus group responses suggest it would be preferred, and may be more informative, for older children to self-report or for child–parent dyads to respond.

     

The Psychological Availability of Dual‐Earner Parents for Their Children After Work

Using data from a sample of Dutch dual‐earner parents (N = 261), this study showed that parents' psychological availability acted as a link between negative and positive workday residuals (i.e., work‐related negative mood, exhaustion, rumination, and work‐related positive mood and vigor) and the quality of parent–child interactions after the workday. Parents' preference for type of role combination moderated these relationships in that evidence for negative spillover was found only for parents who tended to integrate work and family life, whereas positive spillover was found only for parents who tended to segment work and family life. These findings suggest that workday residuals combined with parents' boundary management strategies have important implications for the parent–child relationship.     

Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy

BACKGROUND: Quality of life is recognized as an important outcome of health services. Ideally, the child's perspectives should be sought directly to define their quality of life; however, this may be limited by age and cognitive and language abilities. PURPOSE: In a sample of school-aged children with cerebral palsy (CP), we compared a parent's perspective of their child's quality of life with their child's own perspective, when feasible. METHODS: Forty-eight children completed the Pediatric Quality of Life Inventory (PedsQL) measure independently (n = 33/48, 69% Gross Motor Function Classification System (GMFCS) I; n = 6/48, 12% III-V). A parent completed the proxy version and the scores were compared. RESULTS: Intraclass correlation (ICC) coefficients were high for physical (ICC = 0.72, confidence interval [CI]: 0.55-0.83) and moderate for psychosocial (ICC = 0.54, CI: 0.30-0.71) well-being, with the weakest agreement on school functioning and the strongest agreement for ratings of physical health. Parental ratings were more often lower, especially for social functioning, although children rated themselves lower on emotional functioning. Factors associated with a closer agreement between parent-child pairs included older age, male gender, higher social competency, functional abilities, and fewer emotional symptoms (r (2) = 0.07-0.30). CONCLUSION: In children with CP, parents' ratings of their children's quality of life are generally comparable as a group to their child's self-report. Disparities do exist, particularly in psychosocial domains, and, therefore, the child's own perspective should be considered whenever feasible.     

Case-Mix Adjustment and the Comparison of Community Health Center Performance on Patient Experience Measures

Objective. To assess the effect of case‐mix adjustment on community health center (CHC) performance on patient experience measures. Data Sources. A Medicaid‐managed care plan in Washington State collected patient survey data from 33 CHCs over three fiscal quarters during 2007–2008. The survey included three composite patient experience measures (6‐month reports) and two overall ratings of care. The analytic sample includes 2,247 adult patients and 2,859 adults reporting for child patients. Study Design. We compared the relative importance of patient case‐mix adjusters by calculating each adjuster's predictive power and variability across CHCs. We then evaluated the impact of case‐mix adjustment on the relative ranking of CHCs. Principal Findings. Important case‐mix adjusters included adult self‐reported health status or parent‐reported child health status, adult age, and educational attainment. The effects of case‐mix adjustment on patient reports and ratings were different in the adult and child samples. Adjusting for race/ethnicity and language had a greater impact on parent reports than adult reports, but it impacted ratings similarly across the samples. The impact of adjustment on composites and ratings was modest, but it affected the relative ranking of CHCs. Conclusions. To ensure equitable comparison of CHC performance on patient experience measures, reports and ratings should be adjusted for adult self‐reported health status or parent‐reported child health status, adult age, education, race/ethnicity, and survey language. Because of the differential impact of case‐mix adjusters for child and adult surveys, initiatives should consider measuring and reporting adult and child scores separately.     

Health-related quality of life (HRQL) scores reported from parents and their children with chronic illness differed depending on utility elicitation method

OBJECTIVE: To describe the relationship between health-related quality of life (HRQL) as measured by utility when elicited from parents and their children with chronic illness. STUDY DESIGN AND SETTING: We enrolled families of children admitted for cancer chemotherapy and those attending outpatient rheumatology, hemophilia and bone marrow transplantation clinics. Children in grade 6 or higher were included. The child's HRQL was rated by parent and child using the Standard Gamble (SG), Visual Analogue Scale (VAS), Time Trade-Off (TTO), and Health Utilities Index Mark 2/3 (HUI2 and HUI3). RESULTS: 22 families were included. The mean parent SG was 0.92 +/- 0.09, which was similar to the mean SG elicited from their children of 0.92 +/- 0.10. The parent and child SG were moderately concordant (ICC=0.64, 95% CI=0.30, 0.83; P=.0005). In contrast, TTO scores were not concordant (ICC=0.14, 95% CI=-0.29, 0.53; P=.3), with parents (mean TTO=0.77 +/- 0.31) rating HRQL worse than children (mean TTO=0.92 +/- 0.11; P=.04). Similarly, the mean parent HUI2 of 0.82 +/- 0.22 was lower than the child HUI2 of 0.95 +/- 0.07; P=.02 and HUI2 were not concordant (ICC=0.11, 95% CI=-0.35, 0.53; P=.3) between parents and children. CONCLUSION: Parents and children rate HRQL similarly according to SG, but parents rate HRQL significantly worse using TTO and HUI2.     

An exploratory study of parents' approaches to health promotion in families of adolescents with physical disabilities

Background The life expectancy of children with physical disabilities now extends into adulthood and has been accompanied by the transfer of rehabilitation services from institutions to the home. Thus, families must increasingly partner with health service providers to promote their child's health and prevent the development of secondary conditions that may contribute to heart disease, stroke, respiratory diseases, low endurance and emotional difficulties. Aim To investigate within a family context the health promotion efforts of parents on behalf of a child with a physical disability. Method The Long Interview Method was used to interview 15 families (11 two‐parent and 4 single‐parent) having a child 11–16 years of age with a physical disability including cerebral palsy (7), spina bifida (3), muscular dystrophy (3) and other conditions (2). Results Parents' health promotion efforts were characterized by three main themes. First, parents emphasized traditional lifestyle health behaviours including nutrition, physical activity, tobacco, alcohol and drug use, and personal hygiene. Second, parents tried to foster their adolescent's social life and friendships. They expressed particular concern about how, and if, their child would develop a sense of purpose and have a productive future. Third, parents invested a great deal of effort into observing daily routines, making arrangements for their child's social inclusion and supporting their child in a way that balanced independence with safety and energy conservation. Conclusions Parents recognize that their child with a physical disability faces greater obstacles, and work hard at health promotion. Healthcare workers need to work with parents to: (1) provide information about specific lifestyle health behaviours including nutrition, physical activity and sexuality; (2) advocate for resources to foster social inclusion; and (3) discuss family strategies that balance parental involvement with their child's need for independence and energy conservation for daily activities.     

Parent–child agreement across child health-related quality of life instruments: a review of the literature

AIM: To systematically review the literature published since 1999 on paediatric health-related quality of life (HRQL) in relation to parent-child agreement. METHODS: Literature searches used to identify studies which evaluated parent-child agreement for child HRQL measures. RESULTS: Nineteen studies were identified, including four HRQL instruments. The Pediatric Quality of Life Inventory (PedsQL) was most commonly used. Differences in parent-child agreement were noted between domains for different measures. The impact of child and parent characteristics were not consistently considered; however parents of children in a nonclinical sample tended to report higher child HRQL scores than children themselves, while parents of children with health conditions tended to underestimate child HRQL. CONCLUSION: Despite increasing numbers of studies considering children's HRQL, information about variables contributing to parent-child agreement levels remains limited. Authors need to consistently provide evidence for reliability and validity of measures, and design studies to systematically investigate variables that impact on levels of parent-child agreement.     

Parent stress and child behaviour among young children with type 1 diabetes

Background Parents of young children with type 1 diabetes (T1D) are responsible for executing a complex daily management regimen and are at risk for elevated levels of stress. Normative misbehaviour during the preschool years can complicate T1D management, and interpretation of behavioural concerns may vary because of child health status and parent stress. Within a paediatric transactional model framework, child characteristics (e.g. behaviour problems, metabolic control) and parent functioning (e.g. parenting stress, anxiety) likely impact one another. Methods Parents of 2‐ to 6‐year‐old children with T1D completed self‐report measures, including the Pediatric Inventory for Parents (PIP), State‐Trait Anxiety Inventory (STAI), Eyberg Child Behavior Inventory (ECBI), and 24‐h Recall Interviews. Medical data were obtained by parent report and medical record review. It was hypothesized that greater parent stress and child blood glucose variability would be significantly associated with greater parent‐reported child behaviour concerns. Results Moderate levels of parent stress and child behaviour problems were endorsed; however, parents perceived children's misbehaviour as problematic, particularly with relation to tasks relevant to diabetes management (e.g. bedtimes and mealtimes). Structural equation modelling indicated that greater general anxiety and paediatric parenting stress was associated with parent report of more problematic child behaviour. Blood glucose variability did not significantly contribute to this relationship. Conclusions The stress experienced by parents of young children with chronic illness appears to relate to their perception of their children's behaviour problems. Parents' experiences with developmentally normative misbehaviour may interfere with disease management and exacerbate parents' stress and the subsequent impact on well‐being. Implications for supporting parents and children with T1D are discussed.     

Development of a parent version of the Manchester-Minneapolis quality of life survey for use by parents and carers of UK children: MMQL-UK (PF)

Background  

Although it is now widely endorsed that children should as far as possible rate their own health related quality of life (HRQL), there are situations where proxy information on child HRQL may be useful, especially where a child is too ill or young to provide their own HRQL assessment. There is limited availability of generic HRQL scales that have a parallel child and parent version and that are reliable, valid, brief, comprehensible and suitable for use in UK populations. The aims of this study were therefore to develop and validate a parent version of the anglicised Manchester-Minneapolis Quality of Life child form (MMQL-UK (CF)) and to determine the level of association between the child and parent versions of this form.     

个体开业医生转型家庭医生意向的影响因素分析

目的:在家庭医生人才短缺的背景下,分析个体开业医生转型家庭医生意向的影响因素,为实现家庭医生服务提供主体的多元化提供借鉴。方法:基于山东、湖南、云南三省的抽样调查数据,利用结构方程模型对个体开业医生转型家庭医生的意向进行系统分析,从行为态度、主观规范和知觉行为控制分析个体开业医生行为意向的影响因素。结果:行为态度、主观规范和知觉行为控制对个体开业医生的行为意向均有显著影响,其中行为态度与主观规范影响较大。结论:个体开业医生转型家庭医生的意向受其个人喜好及社会关系的影响较大,提升其参与意愿行为态度和主观规范是干预重点。