Reliability and validity of the Cystic Fibrosis Questionnaire-Revised for children and parents in Turkey: cross-sectional study

Purpose

The purpose of study was to translate Cystic Fibrosis Questionnaire-Revised (CFQ-R) into Turkish for children with cystic fibrosis (CF) and evaluate its reliability and validity. This is the first CF-specific health-related quality of life (HRQOL) measure validated in a Muslim country.

Methods

Fifty-one children aged 6–13 years treated at four centers in Turkey and 30 parents participated in this cross-sectional study. Demographic characteristics and disease severity parameters were recorded for all participants. All participants completed the parent or child versions of CFQ-R and KINDL questionnaires at enrollment. Reliability and construct validity analysis were carried out.

Results

Both children and parents endorsed a range of responses, with no evidence of floor or ceiling effects. Item-to-total correlations indicated that most items were more highly correlated with their intended scale than competing scales. Good internal consistency was found for majority of child and parent scales. CFQ-R scales correlated significantly with clinical indices of disease severity. Good evidence of convergent validity with a generic HRQOL scale was found.

Conclusion

Turkish versions of CFQ-R Child and Parent instruments have demonstrated adequate reliability and validity and can be utilized in clinical trials or integrated into clinical evaluation and follow-up of Turkish children with CF.     

Psychometric evaluation of the Cystic Fibrosis Questionnaire-Revised in a national sample

Purpose

The psychometric properties of a health-related quality of life (HRQOL) instrument, the Cystic Fibrosis Questionnaire-Revised (CFQ-R), were evaluated in a national sample of patients with cystic fibrosis (CF).

Methods

The Epidemiologic Study of CF is a national, multicenter, longitudinal cohort study containing CFQ-R and health outcomes data. Developmentally appropriate versions of the CFQ-R were available from 7,330 patients aged 6?C70?years and a proxy version from 2,728 parents of school-age children. The CFQ-R was completed during a ??stable?? or ??sick?? visit before recording health outcomes such as weight, lung function, and pulmonary exacerbations.

Results

There were few floor and ceiling effects and strong internal consistency (Cronbach alpha ??0.70) for most scales. The CFQ-R consistently discriminated between patients seen for sick-versus-well visits, and among stages of disease severity based on lung function. As predicted, women with CF reported worse HRQOL than men on scales not related to body image and weight. Strong parent?Cchild agreement was found on scales measuring observable behaviors (respiratory symptoms). Convergence between CFQ-R scales and health outcomes provided evidence of construct validity.

Conclusions

The CFQ-R demonstrated robust psychometric properties and consistent associations with health outcomes in a large national sample.     

Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe

Objectives

Our goal was to provide data on the economic burden and health-related quality of life (HRQOL) of patients with cystic fibrosis (CF) and their caregivers in Europe.

Methods

A cross-sectional study was carried out on adults and children with CF in eight European countries. Patients completed an anonymous questionnaire regarding their socio-demographic characteristics, use of healthcare services and presence of a caregiver. Costs were calculated with a bottom-up approach using unit costs from each participating country, and HRQOL was assessed using EQ-5D. The principal caregiver also answered a questionnaire on their characteristics, HRQOL and burden.

Results

A total of 905 patients with CF was included (399 adults and 506 children). The total average annual cost per patient varied from €21,144 in Bulgaria to €53,256 in Germany. Adults had higher direct healthcare costs than children, but children had much higher informal care costs (P < 0.0001). Total costs increased with patients’ level of dependence. In adults, mean utility fell between 0.640 and 0.870, and the visual analogue scale ranged from 46.0 to 69.7. There was no difference in caregiver HRQOL regardless of whether they cared for an adult or a child. However, caregivers who looked after a child had a significantly higher burden (P = 0.0013).

Conclusions

Our study highlights the burden of CF in terms of costs and decreased HRQOL for both patients and their caregivers throughout Europe.

     

Erratum to: Psychometric evaluation of the Cystic Fibrosis Questionnaire-Revised in a national, US sample

Purpose

The psychometric properties of a health-related quality of life (HRQOL) instrument, the Cystic Fibrosis Questionnaire-Revised (CFQ-R), were evaluated in a national, US sample of patients with cystic fibrosis (CF). This is the first psychometric evaluation of the revised version of this instrument.

Methods

The Epidemiologic Study of CF is a national, US multicenter longitudinal cohort study containing CFQ-R and health outcomes data. Developmentally appropriate versions of the CFQ-R were available from 7,330 patients aged 6?C70?years and a proxy version from 2,728 parents of school-age children. The CFQ-R was completed during a ??stable?? or ??sick?? visit before recording health outcomes such as weight, lung function, and pulmonary exacerbations.

Results

There were few floor and ceiling effects and strong internal consistency (Cronbach alpha???0.70) for most scales. The CFQ-R consistently discriminated between patients seen for sick-versus-well visits, and among stages of disease severity based on lung function. As predicted, women with CF reported worse HRQOL than men on scales not related to body image and weight. Strong parent?Cchild agreement was found on scales measuring observable behaviors (respiratory symptoms). Convergence between CFQ-R scales and health outcomes provided evidence of construct validity.

Conclusions

The CFQ-R demonstrated robust psychometric properties and consistent associations with health outcomes in a large national, US sample. Normative data are available to aid in interpretation.     

Assessment of health-related quality of life 6 years after childhood cochlear implantation

Purpose

To examine the impact of cochlear implant (CI) intervention on health-related quality of life (HRQOL) assessed by both self- and parent-reported measures.

Methods

In this national study of children implanted between ages 6 months and 5 years, HRQOL of 129 children 6-year post-CI was compared to 62 internal study (NH1) and 185 external (NH2) samples of hearing children frequency-matched to the CI group on sociodemographic variables. HRQOL ratings of children and their parents in each group, measured using the Child Health and Illness Profile-Child Edition, were compared, and their associations with the Family Stress Scale were investigated.

Results

CI children reported overall and domain-specific HRQOL that was comparable to both NH1 and NH2 peers. CI parents reported worse child scores than NH1 parents in Achievement, Resilience, and Global score (p’s < 0.01) but similar or better scores than socioeconomically comparable NH2 parents. Higher family stress was negatively associated with all parent-reported HRQOL outcomes (p’s < 0.01). Parent–child correlations in HRQOL global scores trended higher in CI recipients (r = 0.50) than NH1 (r = 0.42) and NH2 (r = 0.35) controls.

Conclusions

CI recipients report HRQOL comparable to NH peers. These results, from both child and parent perspective, lend support to the effectiveness of CI intervention in mitigating the impact of early childhood deafness. Family stress was associated with worse HRQOL, underscoring a potential therapeutic target. Parent–child agreement in HRQOL scores was higher for CI families than NH families, which may reflect higher caregiver insight and involvement related to the CI intervention.     

Exposure to traumatic events and health-related quality of life in preschool-aged children

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.     

Feasibility, reliability and validity of the Thai version of the Pediatric Quality of Life Inventory 3.0 cerebral palsy module

Background

Quality of Life (QOL) and Health-related Quality of Life (HRQOL) are now considered as necessary outcome measures for children with cerebral palsy (CP). Various reliable and valid condition-specific HRQOL tools are available for these children. One of these is Pediatric Quality of Life Inventory (PedsQL) 3.0 CP module which has been widely used and was translated to many languages. As no Thai version is available, the authors have completed this translation.

Purpose

This study then aimed to investigate psychometric properties of the newly translated Thai PedsQL 3.0 CP module and to establish parent confidence in their ratings in the translated tool.

Methods

Translation of the PedsQL 3.0 CP module was performed based on linguistic translation guidelines. Then, the psychometric properties of the Thai version were established. PedsQL 3.0 CP module was completed by children with CP and their parents or caregivers twice with 2–4 weeks.

Results

Respondents were 97 parents or caregivers and 54 children. Minimal missing data were found. Acceptable internal consistency was supported except for Movement and Balance Scale (self-report). Intraclass correlation coefficients for parent proxy and self-report were good to excellent (0.684–0.950).

Conclusions

The feasibility, reliability and validity of the translated tool were supported.     

Health-related quality of life and emotional problems in juvenile idiopathic arthritis

Purpose

Children with juvenile idiopathic arthritis (JIA) are at an increased risk of developing emotional problems. This study evaluated the associations between levels of depressive and anxiety symptoms and health-related quality of life (HRQOL) in these children.

Methods

Sixty-seven children with JIA, together with one parent, participated. Anxiety symptoms were identified using the Screen for Child Anxiety Related Emotional Disorders Questionnaire (SCARED), while depressive symptoms were identified using the Mood and Feeling Questionnaire (MFQ). The Pediatric Quality of Life Inventory (PedsQL) was used for HRQOL assessments. Using hierarchical multiple-regression analysis, demographics, clinical factors, and pain were control variables, while anxiety (the SCARED score) and depressive symptoms (the MFQ score) were HRQOL (the PedsQL score) predictors.

Results

The regression model emerged with specified variables explaining 63 % of the variance in the PedsQL score (F = 11.92, p < 0.01) among children. Among parents, the same set of variables accounted for 49 % the variance (F = 6.99, p < 0.01). The MFQ score, but not the SCARED, added most to the variance.

Conclusions

Depressive symptoms, but not anxiety, accounted for substantial variability in levels of HRQOL when considered with demographics, clinical factors, and pain. Thus, screening for depression needs to be considered as a part of multimodal assessment and treatment approaches in JIA.     

Health-related quality of life in children and adolescents with celiac disease: patient-driven data from focus group interviews

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.     

The associations among economic hardship, caregiver psychological distress, disease activity, and health-related quality of life in children with juvenile idiopathic arthritis

Purpose

To examine the associations among caregiver perceived economic hardship, psychological distress, children??s disease activity, and health-related quality of life (HRQOL) in children with juvenile idiopathic arthritis (JIA).

Methods

Caregivers of 182 children with JIA (ages 2?C18) attending the rheumatology clinics at the Montreal Children??s Hospital and the British Columbia??s Children Hospital completed a series of questionnaires on perceived financial hardship, caregiver psychological distress, and children??s HRQOL at baseline, 6 and 12?months. Clinical information such as disease activity was obtained from medical charts. Statistical models were used to look at the significance of several factors of interest while controlling for possible confounders.

Results

Higher caregiver perceived economic hardship [(???=?0.03, 95% CI?=?0.005, 0.06), P?=?0.02], psychological distress [(???=?0.02, 95% CI?=?0.006, 0.03), P?=?0.004], and higher children??s disease activity [(???=?0.11, 95% CI?=?0.07, 0.15), P?Conclusions Findings suggest that caregiver financial hardship and psychological distress as well as children??s disease activity may impact children??s HRQOL. By providing psychological help to parents, offering information regarding financial resources in the community and by ensuring disease control, especially when the disease is severe, health providers may improve children??s health outcomes.     

Cancer-specific health-related quality of life in children with brain tumors

Purpose

To understand the influence of disease and treatment on the health-related quality of life (HRQOL) of children with brain tumors, compared to the HRQOL of children with other cancers, from the viewpoints of children and parents.

Methods

A total of 133 children aged 5–18 years and 165 parents of children aged 2–18 completed questionnaires of the Pediatric Quality of Life Inventory Cancer Module (Pain and Hurt, Nausea, Procedural Anxiety, Treatment Anxiety, Worry, Cognitive Problems, Perceived Physical Appearance, and Communication scales); higher scores indicate a better HRQOL. The Cancer Module scores, weighted by age and treatment status, were compared to those obtained in a previous study of children with other cancers (mostly leukemia).

Results

The weighted mean scores for Pain and Hurt (effect size d = 0.26) and Nausea (d = 0.23) from child reports and the scores for Nausea (d = 0.28) from parent reports were higher for children with brain tumors than scores for children with other cancers. The scores for Procedural Anxiety (d = ?0.22) and Treatment Anxiety (d = ?0.32) from parent reports were lower for parents of children with brain tumors than the scores for parents of children with other cancers. The child-reported Pain and Hurt score of the Cancer Module was higher (d = 0.29) and in less agreement (intraclass correlation coefficient = 0.43) with scores from the Brain Tumor Module, indicating that assessments completed with the Cancer Module misesteem pain and hurt problems in children with brain tumors.

Conclusions

The profiles of cancer-specific HRQOL in children with brain tumors differ from those of children with other cancers; we therefore suggest that these children receive specific psychological support.     

The effect of family-based multidisciplinary cognitive behavioral treatment on health-related quality of life in childhood obesity

Purpose

To evaluate the effect of multidisciplinary treatment on obesity and health-related quality of life (HRQOL).

Methods

Obese children were randomized to a multidisciplinary lifestyle treatment, including medical, nutritional, physical, and psychological counseling during 3?months, (n?=?40, BMI-SDS; 4.2?±?0.7, age; 13.3?±?2.0) or standard care, including an initial advice on nutrition and physical activity by the pediatrician (n?=?39, BMI-SDS; 4.3?±?0.7, age; 13.1?±?1.9). At baseline, after 3?months of treatment and at 12?months follow-up, data were collected for BMI-SDS and a European validated questionnaire for assessing HRQOL (DISABKIDS).

Results

A significantly reduced BMI-SDS was found for the intervention group after 3?months treatment (4.0?±?0.9 vs. 4.2?±?0.7, P?=?0.02) and at 12?months follow-up (3.8?±?1.1 vs. 4.2?±?0.7, P?=?0.03). HRQOL in the intervention group was significantly improved at 12?months follow-up and unchanged in the obese control group. Agreement between child and parent report was moderate (67?C85%), with parents reporting a lower HRQOL for their obese children than children themselves in both groups.

Conclusion

Multidisciplinary treatment is effective in reducing BMI-SDS and improving HRQOL after 12?months follow-up.     

Health-related quality of life in rural children living in four European countries: the GABRIEL study

Objective

Measuring children’s health-related quality of life (HRQOL) is of growing importance given increasing chronic diseases. By integrating HRQOL questions into the European GABRIEL study, we assessed differences in HRQOL between rural farm and non-farm children from Germany, Austria, Switzerland and Poland to relate it to common childhood health problems and to compare it to a representative, mostly urban German population sample (KIGGS).

Methods

The parents of 10,400 school-aged children answered comprehensive questionnaires including health-related questions and the KINDL-R questions assessing HRQOL.

Results

Austrian children reported highest KINDL-R scores (mean: 80.9; 95 % CI [80.4, 81.4]) and Polish children the lowest (74.5; [73.9, 75.0]). Farm children reported higher KINDL-R scores than non-farm children (p = 0.002). Significantly lower scores were observed in children with allergic diseases (p < 0.001), with sleeping difficulties (p < 0.001) and in overweight children (p = 0.04). The German GABRIEL sample reported higher mean scores (age 7–10 years: 80.1, [79.9, 80.4]; age 11–13 years: 77.1, [74.9, 79.2]) compared to the urban KIGGS study (age 7–10 years: 79.0, [78.7–79.3]; age 11–13 years: 75.1 [74.6–75.6]). Socio-demographic or health-related factors could not explain differences in HRQOL between countries.

Conclusions

Future increases in chronic diseases may negatively impact children’s HRQOL.     

Determinants of quality of life in children with chronic somatic disease: pilot data from the GapS Questionnaire

Purpose

Quality of life (QoL) is a ubiquitous yet poorly defined concept; the precise determinants of QoL are rarely identified. We used pilot data from the GapS Questionnaire to investigate the most important determinants of QoL in children with chronic somatic illness.

Methods

We enrolled 92 participants including 60 parents and 32 of their children. The sample comprised rheumatology, diabetes, epilepsy, gastroenterology, cystic fibrosis, and day unit patients. Trained interviewers administered the GapS Questionnaire to parents, and to children if ≥10 years. We determined the relative importance of different items for QoL.

Results

Child participants had a mean age of 14.7 years. Children identified “having good friendships”, “being happy most days”, and “getting along with parents” as most important. Parents ranked most highly “being allowed to do all the things you like doing”, “getting told you have done a good job at something”, and “being physically able to do everything you enjoy doing”.

Conclusions

Physical health items were not as important as social and psychological determinants of QoL in our pilot sample.     

The effectiveness of psychosocial interventions designed to improve health-related quality of life (HRQOL) amongst asthmatic children and their families: a systematic review

Purpose

Asthmatic children are at risk of compromised health-related quality of life (HRQOL) compared with their healthy peers. This systematic review reports the range and effectiveness of psychosocial interventions designed to improve HRQOL amongst asthmatic children, adolescents, and their families.

Method

Data sources included The Cochrane Airways Group Trials Register of trials, PubMed database, and reference lists from review articles.

Results

Eighteen studies of psychosocial interventions were identified. Interventions were designed to improve HRQOL amongst a range of psychosocial, health care, school-related and clinical outcomes, and were delivered in numerous settings and formats. Four studies reported that interventions were effective for significant improvements in child overall HRQOL scores. These include asthma education (n?=?2), asthma education plus problem solving (n?=?1), and art therapy (n?=?1).

Conclusions

Most interventions focussed on the delivery of asthma education to children, with the purpose of improving knowledge about asthma and disease management. There is limited evidence to suggest that interventions currently available are effective for significantly improving HRQOL amongst asthmatic children, adolescents, and their families. Most interventions lacked a theoretical basis and did not focus on family functioning variables. Multi-component interventions that incorporate asthma education along with strategies to assist families with implementing behaviour change towards improved asthma management are required. Future interventions should also attempt to address the wider context of family functioning likely to contribute to the family??s ability to engage in successful asthma management in order to improve HRQOL.     

Health-related quality of life, depression, and self-esteem in adolescents with leprosy-affected parents: results of a cross-sectional study in Nepal

Background

Leprosy is a chronic infectious disease that has an impact on the Health-Related Quality of Life (HRQOL) of sufferers as well as their children. To date, no study has investigated the effects of parental leprosy on the well-being of adolescent children.

Methods

A cross-sectional study was conducted in the Lalitpur and Kathmandu districts of Nepal. Adolescents with leprosy-affected parents (n?=?102; aged 11–17 years) and those with parents unaffected by leprosy (n?=?115; 11–17 years) were investigated. Self-reported data from adolescents were collected using the Kinder Lebensqualität Fragebogen (KINDL^R) questionnaire to assess HRQOL, the Center for Epidemiological Studies-Depression Scale (CES-D), and the Rosenberg Self-esteem Scale (RSES). Analysis of covariance (ANCOVA) was used to compare scores between the two groups. Multiple regression analysis was conducted to explore the determinants of HRQOL for adolescents with leprosy-affected parents.

Results

ANCOVA revealed that the KINDL^R and RSES scores were significantly lower among adolescents with leprosy-affected parents compared with unaffected parents. However, the scores of “Friends” and “School” subscales of KINDL^R were similar between the two groups. The CES-D score was significantly higher among adolescents with leprosy-affected parents than for adolescents with unaffected parents. The KINDL^R scores for adolescents with both parents affected (n?=?41) were significantly lower than the scores for those with one parent affected (n?=?61). Multiple regression analysis revealed that adolescents with leprosy-affected parents who had higher levels of depressive symptoms were more likely to have lower KINDL^R scores. A similar result was seen for adolescents where both parents had leprosy.

Conclusions

Adolescents with leprosy-affected parents had higher levels of depressive symptoms, lower levels of self-esteem, and lower HRQOL compared with adolescents whose parents were unaffected by leprosy. Thus, mental health support programs might be necessary for adolescents with leprosy-affected parents, particularly for adolescents where both parents are leprosy-affected. Further studies with larger sample sizes are necessary to draw decisive conclusions.     

Growing up with cystic fibrosis: achievement, life satisfaction, and mental health

Purpose

Significant improvements in survival of patients with cystic fibrosis lead clinicians and researchers to focus on how patients can be enabled to lead as normal a life as possible throughout their entire life span. The study aimed at analyzing the vocational and social achievement, life satisfaction, and psychological well-being of adolescents and adults with cystic fibrosis.

Methods

During a routine clinic visit, 670 German patients with cystic fibrosis (12?C64?years, M?=?23.1) completed questionnaires on their vocational and social achievement, life satisfaction, and symptoms of anxiety and depression. Cross-sectional analyses were applied across four age-groups (12?C20?years, 21?C30?years, 31?C40?years, and 41?years and older).

Results

Most patients with cystic fibrosis reached employment and independence from their parents during adulthood. Life satisfaction was negatively associated with age, with the largest difference between the second and third life decade. A strong negative association of anxious and depressive symptoms with life satisfaction was found. Lung function was significantly positively related to life satisfaction, even though this association was less pronounced.

Conclusions

Most patients with cystic fibrosis achieve ordinary social and vocational development into adulthood. A favorable mental health status seems more important than pulmonary function to maintain a good satisfaction with life.     

Reliability and validity of the Thai version of the Pediatric Quality of Life Inventory 4.0

Purpose

The study aimed to evaluate the reliability and validity of the Thai version of the Pediatric Quality of Life Inventory? 4.0 Core Scales (PedsQL) as a measure of health-related quality of life (HRQOL).

Methods

The PedsQL items were completed by 2,086 pupils aged 8–15 years and 1,914 parents from four schools, and 100 pediatric outpatients and 100 parents from a University Hospital. Test–retest reliability was conducted in a randomly selected of 150 pupils at a 1-month interval.

Results

Internal consistency reliability for the Total Scale score (α = 0.84 self-report, 0.88 proxy-report), Physical Health Summary score (α = 0.76 self-report, 0.79 proxy-report), and Psychosocial Health Summary score (α = 0.74 self-report, 0.85 proxy-report) exceeded the minimum reliability standard of 0.70. School children had significantly higher mean HRQOL scores compared to those with chronic health conditions for all subscales with the mean differences of 3.1–12.4 for self-report (p < 0.03) and 7.7–15.6 for proxy-report (p < 0.001). Test–retest reliability showed intraclass correlation coefficients above 0.60 in all subscales (p < 0.001).

Conclusions

The Thai version of PedsQL had adequate reliability and validity and could be used as an outcome measure of HRQOL in Thai children aged 8–15 years.     

Health-related quality of life in fathers of children with or without developmental disability: the mediating effect of parental stress

Purpose

The aims of this study were to compare parental stress and health-related quality of life (HRQOL) between Taiwanese fathers of children with and without developmental disabilities (DDs) and to examine the mediating effect of parental stress on the association between having a child with DD and paternal HRQOL within Chinese culture.

Method

This cross-sectional, prospective, unmatched case–control study included 206 fathers of children with DDs and 207 fathers of healthy children. HRQOL was assessed by the SF-36 short-form questionnaire, and parental stress was assessed by the Chinese version Parental Stress Scale.

Results

Fathers of children with DDs experienced poorer mental and physical HRQOL and higher parental stress than fathers of healthy children. Parental stress acted as a complete mediator for paternal physical HRQOL, while parental stress had a partial mediating effect on the relationship between having a child with DD and paternal mental HRQOL. Having a child with DD also directly affected paternal mental HRQOL.

Conclusions

Fathers of children with DDs should be monitored for parental stress and HRQOL, and interventions should be provided to empower them with the knowledge and skills to reduce their stress and to enhance their HRQOL.     

Utility of the PedsQL™ family impact module: assessing the psychometric properties in a community sample

Purpose

Research on families coping with pediatric chronic illnesses has established that children and parents are affected by the illness. Therefore, optimal assessment of parent and family functioning is clinically important. The PedsQL? family impact module (FIM) assesses parents’ health-related quality of life (HRQOL) and family functioning. While the FIM has been shown to be reliable and valid in multiple chronic illness groups, there is little data on its use in non-clinical groups. The study’s objective was to assess the reliability, validity, and factor structure of the FIM in a community sample.

Methods

Nine hundred and twenty-nine community parents of children 2–17 years old completed an anonymous online survey. The mean age of the participants was 37.6 years (SD = 8.6), and the majority were mothers (63.6 %), white (82.9 %), and married (74.8 %). The mean age of the children being reported on was 8.8 years (SD = 3.9), and the majority were female (52.3 %) and 41.2 % were reported as having at least one chronic condition.

Results

All of the FIM’s scales demonstrated excellent internal consistency reliability. Confirmatory factor analysis of the measure supported the current structure. The measure correlated in the expected direction with validated measures of anxiety, depression, child HRQOL, and number of chronic conditions endorsed. Independent t tests indicated that the measure has discriminant validity between parents who reported having a child with a chronic condition to those who did not.

Conclusion

The results of this study suggest the FIM is a reliable and valid measure of parent HRQOL and family functioning within a community sample, and facilitate its use in comparative studies.