Child Health Questionnaire-Parent Form Research Articles

The Burden of Sickle Cell Disease on Children and Their Caregivers: Caregiver Reports of Children's Health-Related Quality of Life and School Experiences, Caregiver Burden, and Their Association with Frequency of Vaso-Occlusive Crises.

Children with sickle cell disease (SCD) experience a multiplex of disease-related symptoms and complications, including vaso-occlusive crises (VOCs), episodes characterized by extreme pain. A cross-sectional observational survey examined the health-related quality of life (HRQoL) and school experiences of children with SCD 2 months-11 years, burden experienced by their caregivers, and associations between these outcomes and VOC frequency. Caregivers (N=167) of children with SCD in the US completed the Infant-Toddler Quality of Life-Short Form 47 (ITQoL-SF47) for children 2 months-4 years, the Child Health Questionnaire-Parent Form 50 (CHQ-PF50) and PROMIS Pain Interference and Sleep Disturbance Parent Proxy short forms for children 5-11 years, and a study-specific survey of school experiences. Children with SCD 2 months-4 years had lower ITQoL-SF47 scores (ie, worse HRQoL, p<0.001) than a normative sample of children; across domains, differences ranged from 18.73-45.03 points and exceeded minimal important difference (MID) thresholds. Except for the behavior domain, children with SCD 5-11 years had lower scores on all CHQ-PF50 domains than the normative sample (p<0.001); differences ranged from 6.78-36.37 points and exceeded MID thresholds. Children with more frequent VOCs had lower HRQoL and worse school experiences than children with less frequent VOCs (p<0.05, except for behavior domains). The largest differences based on VOC frequency were observed for overall health and bodily pain/discomfort among children 2 months-4 years (differences=40.88 and 32.50 points, respectively), and bodily pain and role/social limitations due to physical health among children 5-11 years (differences=38.99 and 37.80, respectively). Caregivers of children with more frequent VOCs experienced greater burden than caregivers of children with less frequent VOCs, though specific areas of impact (eg, caregiver emotions, time) differed across child age groups. VOC frequency is negatively associated with HRQoL, highlighting the burden experienced by children with SCD and their caregivers.

Quality of Life in Food Allergy: Validation of the Korean Version of the Food Allergy Quality of Life Questionnaire Parent Form (K-FAQLQ-PF) and Risk Factor Analysis

This study aimed to evaluate the reliability and validity of the Korean version of the Food Allergy Quality of Life Questionnaire-Parent Form (K-FAQLQ-PF) and to identify clinical characteristics related to low quality of life (QoL) in Korean children with food allergy (FA). Parents of 0-12-year-old patients with FA were enrolled. The English version of FAQLQ-PF was translated into Korean. Construct validation was confirmed by the Food Allergy Independent Measure-Parent Form (FAIM-PF) and the Child Health Questionnaire Parent Form 28 (CHQ-PF28). Logistic regression analyses were used to evaluate associations between potential risk factors and QoL outcomes. A total of 182 patients with a median age of 5.0 years were enrolled in the study. Cronbach's α coefficient values indicating internal consistency were higher than 0.8. Intraclass correlation coefficient values for test-retest reliability were good for all age groups (r > 0.6). Total K-FAQLQ-PF scores were positively correlated with the FAIM-PF (r = 0.56, P < 0.05) and were negatively correlated with the parental impact-emotional domain in the CHQ-PF28 (r = -0.44, P < 0.05). In multivariable logistic regression analysis, low QoL was significantly associated with female sex (adjusted odds ratio [aOR], 2.07; 95% confidence interval [CI], 1.03-4.18), age ≥ 5 years (aOR, 2.84; 95% CI, 1.31-6.16), FA diagnosis before the age of 3 years (aOR, 3.96; 95% CI, 1.13-13.93), the presence of atopic dermatitis (aOR, 2.21; 95% CI, 1.07-4.57), and residence in non-metropolitan areas (aOR, 3.44; 95% CI, 1.73-6.85). According to parental perceptions, the K-FAQLQ-PF is a valid and reliable tool to assess psychosocial QoL in Korean children with FAs. Age, sex, residential area, and comorbid AD can affect the QoL of pediatric patients with FA.

Effects of Aquatic Physical Therapy in Children With Congenital Femoral Deficiency Who Underwent Bone Lengthening Using an External Fixator: A Case Report

Introduction and Objective: Congenital femoral deficiency (CFD) is a malformation that affects 0.2 persons per 10,000 live births. The orthopedic treatment proposed for this disease is bone lengthening using an external fixator (EF). During this treatment, reductions in the range of motion (ROM) of the knee, alterations in the gait speed (GS), and worse quality of life (QOL) commonly occur. Therefore, rehabilitation of patients with CFD receiving this treatment is essential. Aquatic physical therapy (APT) is an innovative approach for this population, however, there are no reports on the effects of APT in patients with CFD after bone lengthening. The objective of this study was to assess the influence of APT on the knee ROM, GS, and QOL of 2 children with CFD implanted with an EF. Case Description: Two children with right-sided CFD implanted with an EF were selected. They received an APT protocol focusing on balance, muscle activation, analgesia and mobility of the right knee, and gait. The right knee ROM, GS, and QOL were measured using right knee goniometry, a 10-m walk test before and after each session, and the Child Health Questionnaire–Parent Form 50 before and after the protocol. Results: An increase in the ROM of the right knee and an improvement in the QOL were observed after the protocol. Only one of the children had an increased GS. Conclusion: The APT protocol increased the knee ROM and improved QOL of the 2 children with CFD implanted with an EF.

Physical Activity Energy Expenditure Predicts Quality of Life in Ambulatory School-Age Children with Cerebral Palsy.

Background: Participation in physical activities is positively associated with better quality of life in children with cerebral palsy (CP). The objective of this study was to elucidate the relationship between the intensity of habitual physical activity (HPA) measured with an accelerometer and health-related quality of life (HRQOL) in school-age children with CP. Method: A secondary analysis of the cross-sectional data of 46 ambulatory children with CP was conducted. The participants wore an accelerometer for seven days to measure HPA: activity counts (counts/min) and physical activity energy expenditure (PAEE, kcal/kg/day), as well as %moderate-to-vigorous intensity physical activity (%MVPA), %light intensity physical activity (%LPA), and %sedentary physical activity (%SPA) were measured. Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and Child Health Questionnaire Parent Form 50 Questions (CHQ-PF50) were used to measure HRQOL. A Pearson analysis and a hierarchical regression analysis were performed. Results: PAEE significantly predicted the results of the PedsQL(child) physical domain (β = 0.579, p = 0.030), PedsQL(child) emotional domain (β = 0.570, p = 0.037), PedsQL(child) social domain (β = 0.527, p = 0.043), and PedsQL(child) total (β = 0.626, p = 0.017). However, other HPA parameters could not predict any other HRQOL. Conclusions: PAEE could be used as a biomarker in studies on HRQOL and HPA in ambulatory school-age children with CP.

Factors Affecting Psychological and Health-Related Quality-of-Life Status in Children and Adolescents with Congenital Heart Diseases.

Congenital heart disease (CHD), a severe cardiac defect in children, has unclear influences on young patients. We aimed to find the impacts of differently structure heart defects and various treatments on psychology and health-related quality of life (HRQoL) in CHD children and adolescents. CHD patients aged between 6 and 18 years old visited our hospital from 1 May 2018 to 31 September 2018, and their principal caregivers were asked to participate. We used two validated questionnaires, Children Depression Inventory-TW (CDI-TW) and Child Health Questionnaire—Parent Form 50 (CHQ-PF 50), to evaluate CHD patients’ psychological and HRQoL conditions. Participants were grouped based on their cardiac defects and previous treatments. We analyzed the results via summary independent-samples t-test with post hoc Bonferroni correction and multivariant analysis. Two hundred and seventy-seven children and their principal caregivers were involved. There was no apparent depressive condition in any group. Single cardiac defect patients exhibited similar HRQoL to controls; simultaneously, those with cyanotic heart disease (CyHD), most multiple/complex CHDs children and adolescents, and those who received invasive treatments had poorer HRQoL. CyHD impacted the most on patients’ psychological and HRQoL status. Patients with sole cardiac defect could live near-normal lifes; on the other hand, CyHD had the worst effects on patients’ psychology and HRQoL.

Factors Associated With Early Elementary Child Health-Related Quality of Life: The Generation R Study.

AimTo identify the factors associated with health-related quality of life (HRQOL) among early elementary age children (5–6 years) from a general population sample.MethodsWe analyzed data of 4,202 children from the Generation R Study, a population-based cohort study in the Netherlands. Children's physical and psychosocial HRQOL were measured using the Child Health Questionnaire Parent Form 28 (CHQ-PF28). Associations between socio-demographic characteristics (child age, sex, ethnic background, family situation, parental educational level, parental employment status, and net household income), health-related lifestyle behaviors (physical activity and screen time), health conditions (number of chronic conditions, emotional and behavioral problems, and family functioning) and children's physical and psychosocial HRQOL were assessed using multivariate regression analyses.ResultsMean child age was 6.0 years (SD: 0.43); 63.6% had a majority (Dutch) ethnic background. Children with a non-western ethnic background, and children of unemployed mothers had a lower physical HRQOL (all p < 0.05). Older children, boys, and children from single-parent or low educated families had a lower psychosocial HRQOL (all p < 0.05). Children from a low income household family, children having chronic conditions or emotional and behavioral problems, or from families with relatively high “pathological family functioning” reported both lower physical and psychosocial HRQOL (all p < 0.05).ConclusionIndicators of adverse socioeconomic and family circumstances and indicators of child health problems were associated with lower HRQOL. Public health initiatives to improve HRQOL of children should prioritize children from a low socioeconomic status or with less favorable health conditions from early age onwards.

Health-Related Quality of Life Assessed in Children with Chronic Rhinitis and Sinusitis.

Introduction: Quality of life (QoL) can be simply defined as an area of human life that directly affects people which they consider to be important. This can be defined in greater detail as ‘an individual perception of an individual’s life position within a cultural context, value system and in relation to their tasks, expectations and standards determined by environmental conditions’. The health-related quality of life (HRQoL) more specifically focuses on how the QoL affects health (including both medical and non-medical issues). Limitations in well-being will, by association, also occur in those children suffering with sinus diseases. Study aim: To compare the quality of life in children–adolescents suffering from some of the most commonly occurring childhood diseases of chronic rhinitis and sinusitis on a group of healthy children–adolescents. Test materials and methods: Subjects were children–adolescents with at least one of the aforementioned conditions afflicting the upper respiratory tract. Admission criteria were: ages 5 to 18 years in the presence of a chronic disease such as chronic rhinitis and paranasal sinusitis. The Child Health Questionnaire-Parent Form 50 CHQ-PF-50 (CHQ-PF50) was used, which is a general-purpose research instrument based on psychometric testing designed for assessing physical and mental well-being in children–adolescents aged 5 to 18 years. Results: Wellbeing significantly deteriorated in sick children within the following areas: current health status of the child (STAND), physical fitness (PF), social functioning resulting from behaviour or emotional state (REB), the impact of physical health on limitations in social functioning (RP), pain and discomfort (BP), behaviour (BE), mental health (MH), self-esteem (SE), general health perception (GH), influence of the child’s health condition on parental emotions (PE), limitations on parental leisure time due to the child’s health (PT) and restrictions on joint family activities (FA). Conclusions: The greatest impairment to well-being in children with chronic rhinitis and paranasal sinusitis was on the impact of the child’s health status on parents’ emotions, pain and discomfort and general perception of health. This study confirms that parents of healthy children attach great importance to their health and health-related quality of life.

Canakinumab improves patient-reported outcomes in children and adults with autoinflammatory recurrent fever syndromes: results from the CLUSTER trial.

To evaluate the effect of canakinumab on health-related quality of life (HRQoL), work/school and social life of patients with autoinflammatory recurrent fever syndromes, including colchicine-resistant familial Mediterranean fever, mevalonate kinase deficiency, and tumour necrosis factor receptor-associated periodic syndrome, in the CLUSTER trial. HRQoL of patients who received canakinumab 150 mg or 300 mg every four weeks in the CLUSTER trial (n=173) was assessed at baseline and Weeks 17 and 41. For children we used the Child Health Questionnaire - Parent Form 50 (CHQ-PF50), including psychosocial (PsS) and physical (PhS) component summary scores. For adults, the Short-Form-12 (SF-12) Health Survey was used, including physical (PFS) and mental (PCS) component summary scores. The Sheehan Disability Scale (SDS) was used to determine the impact of treatment on work/school, social and family life. The results obtained were remarkably consistent in both paediatric and adult patients across the three disease cohorts. At baseline, median scores for physical components were relatively low (26-29 for PhS and 34-38 for PFS); they improved to values similar to those expected in the general population by Week 17, and this improvement was sustained at Week 41, when median PhS scores were 47-50 and PFS 44-54. Psychosocial and mental scores also improved from baseline to Week 17 and 41, with scores comparable to the general population. Notable improvements were also observed in the SDS scale. Patients with three inherited autoinflammatory syndromes experienced sustained improvements on their HRQoL, work/school, and social life on treatment with canakinumab.

Health-Related Quality of Life Assessed in Children with Adenoid Hypertrophy.

Introduction: The quality of life issue began to be earnestly studied in the second half of the 20th century. It had originally been used as a criterion for measuring levels of human development in the USA and Western Europe. At first, only objective parameters were assessed, such as material goods; however, later, subjective and non-material parameters were added, such as health, freedom, and happiness. Over time, more and more attention has been paid to the subjective parameters regarding any quality of life assessment. Adenoids are physiological clusters of lymphoid tissue included in Waldeyer’s ring, which play an important role in shaping and directing the child’s local and systemic lines of defence. Adenoid hypertrophy occurs due to a variety of factors, such as recurring or chronic infections of the upper respiratory tract. Study aim: To assess health status in children with adenoid system hypertrophy compared with a group of healthy children. Materials and methods: The study group consisted of children suffering from adenoid hypertrophy, this being the most common chronic disease of the upper respiratory tract. The control group was composed of children attending nursery school (kindergarten), primary school, middle school, and high school. The study was performed by using the Child Health Questionnaire—Parent Form 50 CHQ-PF-50 (CHQ-PF50), which is a general purpose research tool based on psychometric testing when assessing physical and mental well-being in children aged 5 to 18 years. Results: There were 101 filled out questionnaires for the test group (54 girls and 47 boys), mean age 8.62 years (ranging 5–17), whilst 102 questionnaires for the controls (50 girls and 52 boys), mean age 10.58 years (ranging 5–18). Insignificant differences were found between social functioning resulting from behaviour or emotional state (REB), pain and discomfort (BP), and family cohesion (FC). Conclusions: Children suffering from adenoid hypertrophy demonstrate the largest decreases in wellbeing in the following areas: behaviour, general perception of health, and mental health.

Functional Ability and Health-Related Quality of Life in Randomized Controlled Trials of Tocilizumab in Patients With Juvenile Idiopathic Arthritis.

To evaluate changes in health-related quality of life (HRQoL) and disability in children with systemic juvenile idiopathic arthritis (JIA) or polyarticular JIA treated with tocilizumab. Secondary analyses of two double-blind, placebo-controlled trials of intravenous tocilizumab in children with active systemic JIA or polyarticular JIA were conducted. Patient-reported outcomes of disability (Childhood Health Assessment Questionnaire [C-HAQ]), HRQoL (Child Health Questionnaire Parent Form 50 [CHQ-P50], health concepts, physical summary score [CHQ-P50-PhS], psychosocial summary score [CHQ-P50-PsS]), pain, and well-being (100-mm visual analog scale [VAS]) were measured at weeks 0 and 12 for systemic JIA, weeks 16 and 40 for polyarticular JIA, and week 104 for both JIA subgroups. The trial included 112 patients with systemic JIA and 188 patients with polyarticular JIA. In patients with polyarticular JIA, the mean ± SD C-HAQ score decreased from 1.39 ± 0.74 at baseline to 0.67 ± 0.65 at week 16 (P < 0.001). In patients with systemic JIA, the mean ± SD CHQ-P50-PhS improved more with tocilizumab therapy than with placebo at week 12 (7.3 ± 10.2 versus 2.4 ± 10.6) (P < 0.05). Almost all mean CHQ-P50 health concept scores, CHQ-P50-PsS, and CHQ-P50-PhS improved (P ≤ 0.002) by week 104 for patients with systemic JIA. Patients with polyarticular JIA and patients with systemic JIA showed significant reductions in disability (mean ± SD C-HAQ scores of -1.09 ± 0.71 and -1.17 ± 0.80, respectively), improvements in well-being (mean ± SD well-being VAS scores of -43.76 ± 26.61 and -51.53 ± 23.57, respectively), and decreases in pain (mean ± SD pain VAS scores of -41.56 ± 31.06 and -51.26 ± 26.79, respectively) (P < 0.001); in patients with polyarticular JIA and patients with systemic JIA who were treated with tocilizumab, 92.9% of polyarticular JIA patients and 96.8% of systemic JIA patients reported no more than minimal pain (a score of ≤35 mm on the VAS) at week 104. Tocilizumab treatment was associated with significantly reduced disability and pain and improved HRQoL in patients with systemic JIA and polyarticular JIA.

Quality of life of children and adolescents with clinical obesity, perspectives of children and parents

Background/objectivesChildhood obesity can have important psychological impacts. The objective of this study was to evaluate the Health Related Quality of Life (HRQoL) of children and adolescents with overweight and obesity. The participants were referred to an outpatient hospital-based obesity treatment. Additionally, we investigated the differences between parent- and self-reported HRQoL. Subjects/methodsChildren and adolescents aged 3−18 years with overweight or obesity, referred by their general practitioner or youth health care physician to the pediatric outpatient clinic of Hospital Gelderse Vallei (Ede, the Netherlands) for multidisciplinary obesity treatment, were enrolled in this cross-sectional study (n = 119). Interventions/methodsParent-proxy reported HRQoL was assessed using the Child Health Questionnaire Parental Form 50 (CHQ-PF50, n = 119) and the Infant Toddler Quality of Life Questionnaire 97 (ITQOL-97). Adolescents completed CHQ Child Form 87 (CHQ-CF87, n = 45) and Impact of Weight on Quality of Life-Kids (IWQOL-Kids, n = 38) to assess self-reported HRQoL. ResultsThe mean age of the children was 9.6 years (SD 4.3). Both parent-proxy reports and child self-reports showed lower HRQoL in children with a higher degree of obesity, especially in the physical domains of HRQoL (p < 0.05). Child self-reported scores were significantly lower than parent-proxy scores on the subscales ‘bodily pain/discomfort’ and ‘general health perceptions’, and significantly higher on ‘behavior’ and ‘family cohesion’ (p < 0.05). ConclusionsChildhood obesity has a negative effect on HRQoL, especially on the physical aspects. The discordance between parent and child reports underscores the importance of using a combination of parent-proxy and child self-reports to assess HRQoL.

Caregiver-reported health-related quality of life of New Zealand children born very and extremely preterm.

BackgroundChildren born preterm, particularly at earlier gestations, are at increased risk for mortality and morbidity, but later health-related quality of life (HRQoL) is less well described. Neurodevelopmental impairment and socio-economic status may also influence HRQoL. Our aim was to describe the HRQoL of a cohort of New Zealand children born very and extremely preterm, and how this is related to neurodevelopmental impairment, gestational age, and socio-economic deprivation.MethodsChildren born <30 weeks’ gestation or <1500 g birthweight were assessed at 7 years’ corrected age. Caregivers completed the Child Health Questionnaire Parent Form (CHQ-PF50), and the Health Utilities Index Mark 2 (HUI-2). Neurodevelopmental impairment was defined as Wechsler full scale intelligence quotient below -1 standard deviation (SD), Movement Assessment Battery for Children total score ≤15 percentile, cerebral palsy, deafness, or blindness.ResultsData were collected for 127 children, of whom 60 (47%) had neurodevelopmental impairment. Overall, HRQoL was good: mean (SD) CHQ-PF50 physical summary score = 50.8 (11.1), psychosocial summary score = 49.3 (9.1) [normative mean 50 (10)]; HUI-2 dead-healthy scale = 0.92 (0.09) [maximum 1.0]. Neurodevelopmental impairment, lower gestational age, and higher socio-economic deprivation were all associated with reduced HRQoL. However, on multivariable analysis, only intelligence quotient and motor function were associated with psychosocial HRQoL, while intelligence quotient was associated with physical HRQoL.ConclusionsMost seven-year-old children born very and extremely preterm have good HRQoL. Further improvements will require reduced neurodevelopmental impairment.

Parents' Perceptions of Health-Related Quality of Life of Children Diagnosed with Osteogenesis Imperfecta

PurposeThe purpose of this research was to describe the health-related quality of life (HRQoL) perceptions of parents of children diagnosed with osteogenesis imperfecta (OI). Design and MethodsThis research used a descriptive design with a comparative sample. The Child Health Questionnaire (CHQ-PF 28) parent form was used to assess HRQoL in a sample of 37 parents from a mid-western tertiary pediatric hospital OI specialty clinic. Comparisons were made with a sample of parents of well children. ResultsParent HRQoL perception scores were described in both the physical and psycho-social-emotional domains. The domains of physical function (PF), bodily pain (BP), general health (GH), parent impact-emotional (PE), and child self-esteem (SE) were the lowest HRQoL mean domain scores for the parents of the children diagnosed with OI. Ceiling and floor scores were calculated to describe the magnitude of the differences between the mean HRQoL perception domain scores of the two parent groups. ConclusionsLow HRQoL physical and psycho-social-emotional mean domain scores in conjunction with small percentage scores in the ceiling (and greater percentage scores in the floor) for parents of children diagnosed with OI were described. Findings suggest the on-going need for research to identify interventions to promote physical functioning for the child diagnosed with OI. Outcome based programs for parent and family-centered psycho-social self-care should be developed.PracticeImplications: ipComprehensive and longitudinal assessment of HRQoL for both parents and their children diagnosed with OI will assist in documenting the outcomes of interventions for the management of chronic care.

Health-related quality of life of children and their parents 2 years after critical illness: pre-planned follow-up of the PEPaNIC international, randomized, controlled trial

BackgroundPediatric intensive care unit (PICU) survivors are at risk for prolonged morbidities interfering with daily life. The current study examined parent-reported health-related quality of life (HRQoL) in former critically ill children and parents themselves and aimed to determine whether withholding parenteral nutrition (PN) in the first week of critical illness affected children’s and parents’ HRQoL 2 years later.MethodsChildren who participated in the pediatric early versus late parenteral nutrition in critical illness (PEPaNIC) trial and who were testable 2 years later (n = 1158) were included. Their HRQoL outcomes were compared with 405 matched healthy controls. At PICU admission, children had been randomly assigned to early-PN or late-PN. In the early-PN group, PN was initiated within 24 h after PICU admission. In the late-PN group, PN was withheld for up to 1 week in the PICU. Parents completed the Infant Toddler Quality of Life Questionnaire (ITQOL; age 2–3 years) or the Child Health Questionnaire-Parent Form 50 (CHQ-PF50; age 4–18 years). Besides, they completed the Health Utility Index (HUI) and the Short Form Health Survey (SF-12) regarding their child’s and their own HRQoL, respectively.ResultsFor the total age group of 786 post-PICU survivors, parents reported lower scores for almost all HRQoL scales compared to healthy children. Age-specifically, younger critically ill children (2.5 to 3 years old) scored worse for growth and development and older children (4–18 years old) scored worse for role functioning and mental health. Parents’ own mental and physical HRQoL was comparable to that of healthy control parents. No HRQoL differences were found between children in the late-PN and those in the early-PN group.ConclusionsParent-reported HRQoL of children 2 years after critical illness was impaired compared with healthy controls. In relation to their child’s HRQoL, parents reported impairments in emotions, personal time, and family activities; however, their own HRQoL was not impaired. Withholding PN in the first week during critical illness had no impact on longer-term HRQoL of the child.Trial registrationClinical trials, NCT01536275. Registered 22 February 2012

Caregiver Burden Due to Pulmonary Exacerbations in Patients with Cystic Fibrosis

To describe the poorly understood burden of pulmonary exacerbations experienced by primary caregivers of children (aged 2-17years) with cystic fibrosis (CF), who frequently require prolonged hospitalizations for treatment of pulmonary exacerbations with intravenous (IV) antibiotics. In this prospective observational study, 88 caregivers in Germany, Ireland, the United Kingdom, and the US completed a survey during pulmonary exacerbation-related hospitalizations (T1) and after return to a "well state" of health (T2). The impact of pulmonary exacerbations on caregiver-reported productivity, mental/physical health, and social/family/emotional functioning was quantified. Primary caregivers of children with CF reported significantly increased burden during pulmonary exacerbations, as measured by the 12-item Short-Form Health Survey mental health component and the Work Productivity and Activity Impairment: Specific Health Problem absenteeism, presenteeism, work productivity loss, and activity impairment component scores. Compared to the "well state," during pulmonary exacerbations-related hospitalization caregivers reported lower physical health scores on the Child Health Questionnaire-Parent Form 28. Quality-of-life scores on the Caregiver Quality of Life Cystic Fibrosis scale and total support score on the Multidimensional Scale of Perceived Social Support did not differ significantly between T1 and T2. More caregivers reported a negative impact on family/social/emotional functioning during pulmonary exacerbations than during the "well state." Pulmonary exacerbations necessitating hospitalization impose a significant burden on primary caregivers of children with CF. Preventing pulmonary exacerbations may substantially reduce this burden.

Health-related quality of life of children and their parents 6\xa0months after children\u2019s critical illness

PurposeThis study aimed to examine health-related quality of life (HRQoL) of children and their parents, 6 months after the child’s admission to the Pediatric Intensive Care Unit (PICU). Associations between parents’ reports regarding HRQoL of their child and of themselves were investigated, as well as associations between children’s baseline variables and their parent-reported HRQoL outcomes.MethodsThis is a secondary analysis of cross-sectional data collected in a group of children who participated in the PEPaNIC trial. Six months after discharge from the PICU, parents of critically ill children completed the Infant–Toddler Quality of Life Questionnaire (ITQOL, for age 0–3 years) or the Child Health Questionnaire-Parent Form 50 (CHQ-PF50, for age 4–18 years), which are parallel questionnaires. Parents completed the Short Form Health Survey (SF-12) regarding their own HRQoL. Results were compared with normative data.ResultsAt 6 months’ follow-up, 86 children of the 1343 (6%) had died which resulted in 1257 eligible children. Parents of 576 surviving children (46%) completed the questionnaires. Children of responding parents had less often an acute reason for admission and differed in diagnosis compared with children of non-responders. PICU children scored lower on most ITQOL (n = 390) scales and CHQ-PF50 (n = 186) scales compared with normative data. Parents reported (n = 570) higher scores on the physical (p < 0.001) and lower scores on the mental SF-12 scale (p < 0.001) compared with normative data. Parents̕ mental HRQoL correlated with HRQoL they reported for their child (Pearson Correlations range 0.25–0.57, p < 0.001–0.002). Shorter length of stay, lower risk of mortality, younger age, and cardiac diagnosis were associated with higher parent-reported HRQoL outcomes for the child.ConclusionsSix months after PICU discharge, critically ill children have lower HRQoL compared with normative data. The mental component of HRQoL is impaired in parents and is associated with lower overall parent-reported HRQoL of their child.

Assessing health related quality of life of school aged Saudi children in western province using the validated Arabic version of child health questionaire-parent form-50.

Objectives:To assess the health-related quality of life (HRQOL) of children from a community in Jeddah, Saudi Arabia, excluding those with known chronic illnesses.Methods:Four schools in Jeddah participated in this cross-sectional study, which was conducted from February 2018 to February 2019. The parents of 5-14 year-old children were surveyed using the validated Arabic version of the Child Health Questionnaire-Parent Form 50 (CHQ-PF50). It consisted of 50 items divided into 15 scales (namely, 11 multi-item and 4 single-item scales) and expressed as scores of 0-100, with higher scores indicating better HRQOL. The levels of HRQOL were analyzed and compared.Results:The parents of 498 children answered the questionnaire. The mean scores of CHQ-PF50 subscales were relatively high (>80) in 8 out of 15 domains. However, relatively low scores were observed for general health perception (70.01), behavior (73.70), and mental health (75.65). Boys scored lower in behavior (difference of means = -5.80), global behavior (-4.47), mental health (-4.81), general health perception (−2.59), parental impact-emotional (-5.11), family activities (-1.77), and family cohesion (-2.19). Furthermore, adolescent boys scored lower in global health, mental health, global behavior, and parental impact.Conclusion:This study showed globally adequate levels of HRQOL among Saudi children, with some limitations in behavior and mental health, especially in boys and adolescents.

Ambulation, lesion level, and health-related quality of life in children with myelomeningocele

The aim is to investigate the health-related quality of life (HRQOL) in children with myelomeningocele (MMC), compare the results with those of healthy children, and determine the factors related to HRQOL. Fifty children with MMC with a mean age of 8.96 ± 2.57 and 50 healthy children with a mean age of 9.50 ± 2.42 were included in the study. The demographic information form and the CHQ-PF-50 (Child Health Questionnaire Parent form 50) were completed to determine the quality of life (QOL) for the children. Ambulation levels of children with MMC and disease-specific findings were recorded. The HRQOL scores of children with MMC were compared with healthy children and assessed according to lesion levels and ambulation status. The CHQ-PF-50 scores of healthy and MMC children had no significant difference in the sub-dimensions of health change (p > 0.05), but the mean QOL score of children with MMC was significantly lower in all other sub-dimensions (p < 0.05). In addition, QOL scores according to lesion levels in children with MMC were significantly different between the three groups (p < 0.05). The QOL scores were the highest in the sacral group and the lowest in the thoracic-high lumbar group. The QOL for non-ambulatory children was significantly lower than for ambulatory children with MMC (p < 0.05). The present study confirms that children with MMC have diminished HRQOL and non-ambulatory and children with high lesion levels are affected the most. Our result suggests that focusing on the activities that will enable children to acquire the ability to walk can positively affect the HRQOL.

Effects of Intellectual Disability on Gross Motor Function and Health Related Quality of Life in Cerebral Palsy

Objective: Cerebral palsy (CP) is a common developmental disorder which causes intellectual and motor disability, and affects quality of life. The aim of this study was to reveal the effect of intellectual disability (ID) on motor function and quality of life in CP.Methods: Twenty-seven children with CP were divided into two groups as with or without ID. Motor function and health related quality of life was evaluated with Gross Motor Function Measurement–88 (GMFM-88) and Child Health Questionnaire-Parent Form 50 (CHQ-PF50) respectively.Results: All dimensions of GMFM-88 and most of the dimensions of CHQ-PF50 were lower in children with ID compared to those without ID (p&amp;lt;0.05).Conclusion: ID seems to have a disruptive effect on motor function and health related quality of life in CP. Adding approaches to improve the cognitive status to the CP rehabilitation program may be beneficial for motor function and quality of life.

Early Self‐Reported Pain in Juvenile Idiopathic Arthritis as Related to Long‐Term Outcomes: Results From the Nordic Juvenile Idiopathic Arthritis Cohort Study

To study self-reported pain early in the disease course of juvenile idiopathic arthritis (JIA) as a predictor of long-term disease outcomes. Consecutive cases of JIA with disease onset from 1997 to 2000 from defined geographical areas of Norway, Sweden, Finland, and Denmark were prospectively enrolled in this population-based cohort study. Self-reported, disease-related pain was measured on a 10-cm visual analog scale (VAS pain). Inclusion criteria were a baseline visit with a pain score 6 months after disease onset, followed by an 8-year study visit. Remission was defined according to Wallace etal (2004) preliminary criteria. Functional disability was measured by the Childhood Health Assessment Questionnaire and the Child Health Questionnaire Parent Form if the child was age <18 years and by the Health Assessment Questionnaire if age ≥18 years. Damage was scored using the Juvenile Arthritis Damage Index. The final study cohort consisted of 243 participants, and 120 participants (49%) had oligoarticular onset. At baseline, 76% reported a VAS pain score >0 compared to 57% reporting at 8 years. Half of those who reported baseline pain also reported pain at 8 years but at a lower intensity. Compared to no pain, higher pain intensity at baseline predicted more pain at 8 years, more functional disability, more damage, and less remission without medication. Baseline pain predicted more use of disease-modifying antirheumatic drugs/biologics during the disease course. Participants with oligoarticular JIA reporting pain at baseline were more likely to develop extended oligoarticular JIA or other JIA categories with an unfavorable prognosis. Early self-reported, disease-related pain among children and adolescents with JIA is common and seems to predict persistent pain and unfavorable long-term disease outcomes.