Proxy-reported Health-related Quality Of Life Research Articles

Health-Related Quality of Life, Emotional and Behavioral Problems in Children and Adolescents with Ebstein Anomaly

Background: Due to the improved survival rates of children and adolescents with congenital heart disease (CHD), more attention is now being directed towards their health-related quality of life (HRQoL), emotional and behavioral problems. Ebstein anomaly (EA) is a rare CHD with a broad clinical spectrum. The aim of the current study is to evaluate self- and proxy-reported HRQoL and emotional and behavioral problems in children and adolescents with EA. Methods: In this cross-sectional, multicenter study, we included EA patients (aged 8–17 years), who underwent routine clinical assessments in Dutch university hospitals between May 2017 and March 2019. The Generic Pediatric Quality of Life Inventory 4.0 (for ages 8–12/13–17 years) was used to assess HRQoL. The Child Behavior Checklist, Youth Self-Report and Teacher’s Report Form were completed to measure emotional and behavioral problems. Results: Questionnaires for thirty-eight patients (median age: 13 years; 48% male) were completed by patients themselves, parents and teachers. Compared to normative data, self-reported HRQoL was not significantly impaired, except for social functioning in children aged 8–12 years. Gender, severity of tricuspid regurgitation or previous surgery did not predict HRQoL. Parents reported significantly more internalizing (anxiety/depression), attention and thought problems in children with EA. These problems, however, were not reported by adolescents themselves. School teachers reported significantly fewer externalizing problems compared to the norm. Conclusions: Overall, despite satisfactory HRQoL, children and adolescents show emotional and behavioral problems. We recommend routine HRQoL and psychological assessment to screen for less apparent internalizing and psychosocial problems.

Health-related quality of life outcomes in pediatric patients with cardiac rhythm devices: a cross-sectional study with case-control comparison

BackgroundLittle is known about health-related quality of life (HRQoL) in pediatric patients with cardiac rhythm devices. This study aims to compare self- and proxy-reported HRQoL in patients with pacemaker (PM) and implantable cardioverter-defibrillator (ICD) to that in sex- and age-matched healthy controls and to examine predictors for generic and disease-specific HRQoL.MethodsThe study included 72 PM and ICD patients (39% females) and 72 sex- and age-matched healthy controls from 3 to 18 years of age. HRQoL data was obtained by the PedsQL 4.0 Generic Core Scales and Pediatric Cardiac Quality of Life Inventory. Medical data was collected retrospectively from medical records.ResultsPatients had significantly lower self- and proxy-reported generic overall HRQoL and lower physical health than healthy controls, and ICD patients also had lower psychosocial health. On multivariate analyses, generic overall HRQoL and physical health was significantly predicted by current cardiac medication (β = −.39, p = .02 for overall HRQoL, respectively β = −.44, p = .006 for physical health). Disease-specific overall HRQoL was only marginally predicted by child age, device type, and the presence of a structural congenital heart disease (p < .10).ConclusionsThis study shows that PM and ICD patients have lower HRQoL than healthy controls and that patients who need cardiac medication are seen by their parents at great risk for lower generic overall HRQoL. Our study also indicates a trend towards higher risk for low disease-specific HRQoL in younger patients, ICD patients, and patients with a structural congenital heart disease. Special attention should be given to these patients as they may benefit from a timely clinical evaluation in order to provide supportive interventions.

Mediating effects of exercise capacity on the association between physical activity and health-related quality of life among adolescents with complex congenital heart disease.

There is little evidence on interrelationships between physical activity, sedentary behaviors, and health-related quality of life (HRQOL) among adolescents with congenital heart disease (CHD). We hypothesized that exercise capacity would have a mediating effect on the associations of either physical activity or sedentary behavior with HRQOL. Adolescents with complex CHD (n = 111) were consecutively recruited from an outpatient clinic in a general hospital in South Korea. Physical activity and sedentary behavior were assessed using the global physical activity questionnaire. Exercise capacity was directly measured by peak oxygen uptake using a symptom-limited maximal treadmill exercise test. HRQOL was evaluated by both adolescents and their parents using the Pediatric Quality of Life Inventory questionnaire. The self-reported and parent proxy-reported HRQOL were positively associated with physical activity (ß = 0.16, P = .003; ß = 0.12, P = .049) and exercise capacity (ß = 0.63, P < .001; ß = 0.66, P < .001), but not with sedentary behavior in adjusted regression models. When both variables were entered in the same regression models, only exercise capacity remained significantly associated with the self-reported (ß = 0.50, P = .008) and parent proxy-reported HRQOL (ß = 0.62, P = .003). Exercise capacity acted as a full mediator variable on the relationship between physical activity and HRQOL (P < .05 for both). The present findings suggest that exercise capacity mediates the association between physical activity and HRQOL, highlighting the importance of improving exercise capacity to potentially enhance HRQOL in adolescents with complex CHD.

Can a home-based cardiac physical activity program improve and sustain quality of life and exercise capacity in children with Fontan circulation?

ObjectiveFontan survivors report reduced health-related quality of life (HRQOL) and have decreased exercise tolerance compared to healthy peers. We recently demonstrated that a 12-week home-based physical activity program was safe, feasible, and improved parent proxy-reported HRQOL and objective measures of exercise capacity in patients with Fontan circulation. We sought to determine if these improvements in HRQOL and exercise capacity are sustained at 6-month follow-up. DesignPatients, 8–12 years old, with Fontan circulation that completed a 12-week moderate-to-vigorous intensity home-based physical activity program were invited to attend a 6-month follow-up session to complete objective assessments of HRQOL and exercise capacity. HRQOL was measured with validated questionnaires. The 20-meter Shuttle Run (PACER Test) was used to measure exercise capacity. ResultsOf the 13 patients who completed the original 12-week physical activity program, 11 (85%) attended the 6-month follow-up. There were no adverse events during the follow-up period. Improvements in parent proxy-report for HRQOL at completion of the 12-week program were sustained at 6-month follow-up. Patients reported a significant decrease in HRQOL assessed by PedsQL at 6-month follow-up. However, there was a non-significant trend of improvement in patient PCQLI total and psychosocial impact scores at completion of the 12-week program, which was sustained at 6-month follow-up. The significant improvements in objective measures of exercise capacity seen from baseline to completion of the 12-week program were sustained at 6-month follow-up. ConclusionImprovements in parent-proxy report HRQOL and objective measures of exercise capacity after completion of a home-based 12-week physical activity program were sustained at 6-month follow-up. Despite improvements in exercise capacity, patients did not report improved HRQOL. A larger, controlled study of this home-based physical activity program is needed to assess the impact of physical activity and improved exercise capacity on HRQOL in children with Fontan circulation.

Memory assessment services and health-related quality of life: 1-year follow-up.

Our group has already demonstrated that patients' health-related quality of life (HRQL) improves in the first 6months after their first appointment at memory assessment services (MASs), but the sustainability of such gains is unknown. We aimed to describe changes in patients' HRQL at 12months after their first MAS appointment and to examine associations with patient and MAS characteristics. We collected data from 702 patients and 452 lay caregivers at the first appointment and 12months later. Multivariable linear regression was used to examine the relationships of change in HRQL (self-reported and proxy-reported) with patients' characteristics and use of post-diagnostic interventions, and multilevel models were used to analyse the relationships of HRQL with MAS characteristics. In the whole group, self-reported HRQL improved over 12months (+3.5 points, 95% CI 2.7 to 4.2). Among people diagnosed with dementia, improvement in HRQL was more than double that among those with mild cognitive impairment or no diagnosis. Proxy-reported HRQL improved only in those diagnosed with dementia (+1.2 points, 95% CI 0.2 to 2.2). Changes in HRQL were not associated with any patient characteristics. The only feature of MASs associated with larger improvements in HRQL was the presence of advisory and support staff. Improvements in HRQL observed at 6months are maintained up to 1year after the first MAS appointment, more so among those who receive a diagnosis of dementia. Continued follow-up will determine if the improvement is even longer lasting.

HABIT, a Randomized Feasibility Trial to Increase Hydroxyurea Adherence, Suggests Improved Health-Related Quality of Life in Youths with Sickle Cell Disease

To examine the effect of a community health worker (CHW) intervention, augmented by tailored text messages, on adherence to hydroxyurea therapy in youths with sickle cell disease, as well as on generic and disease-specific health-related quality of life (HrQL) and youth-parent self-management responsibility concordance. We conducted a 2-site randomized controlled feasibility study (Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment [HABIT]) with 2:1 intervention allocation. Youths and parents participated as dyads. Intervention dyads received CHW visits and text message reminders. Data were analyzed using descriptive statistics, the Wilcoxon signed-rank test, and growth models adjusting for group assignment, time, and multiple comparisons. Changes in outcomes from 0 to 6 months were compared with their respective minimal clinically important differences. A total of 28 dyads (mean age of youths, 14.3 ± 2.6 years; 50% Hispanic) participated (18 in the intervention group, 10 in the control group), with 10.7% attrition. Accounting for group assignment, time, and multiple comparisons, at 6 months intervention youths reported improved generic HrQL total score (9.8 points; 95% CI, 0.4-19.2) and Emotions subscale score (15.0 points; 95% CI, 1.6-28.4); improved disease-specific subscale scores for Worry I (30.0 points; 95% CI, 8.5-51.5), Emotions (37.0 points, 95% CI, 9.4-64.5), and Communication I (17.8 points; 95% CI, 0.5-35.1); and 3-month dyad self-management responsibility concordance (3.5 points; 95% CI, -0.2 to 7.1). There were no differences in parent proxy-reported HrQL measures at 6 months. These findings add to research examining effects of behavioral interventions on HrQL outcomes in youths with sickle cell disease. ClinicalTrials.gov: NCT02029742.

Antidepressant medication in a German cohort of patients with Alzheimer's disease .

The use of antidepressant drugs in dementia patients is associated with the risk of adverse events, and the evidence for relevant effects is scarce. We aimed to determine the associations between the prescription of antidepressants and patients' sociodemographic (e.g., age, gender, living situation) and clinical characteristics (e.g., disease severity, neuropsychiatric symptoms). We included 395 institutionalized and community-dwelling patients with Alzheimer's disease (AD) across all severity stages of dementia in a cross-sectional study design. The patients' clinical characteristics comprised of cognitive status, daily activities, depressive symptoms, further neuropsychiatric symptoms, and health-related quality of life (HrQoL). We conducted multiple logistic regression analyses for the association between the use of antidepressant drugs and the covariates. Approximately 31% of the participants were treated with antidepressant drugs, with a higher chance of being medicated for institutionalized patients (χ2-test: p=0.010). In the bivariate analyses, the use of antidepressants was significantly associated with higher levels of care, lower cognitive and daily life capacity, higher extent of neuropsychiatric symptoms, and a lower proxy-reported HrQoL. Finally, multiple logistic regression models showed a significantly higher use of antidepressants in patients treated by psychiatrists and neurologists (OR 2.852, 95% CI: 1.223-6.652). The use of antidepressant drugs in the study population was high, and the suitability of the treatment with antidepressants remains unclear. Participants with diminished cognitive and functional capacity, higher extent of neuropsychiatric symptoms, and those treated by neuropsychiatric specialists were more likely to be treated with antidepressants. The pharmaceutical treatment of patients with these clinical characteristics should be particularly considered in the daily care for dementia patients. Further longitudinal studies should evaluate the appropriateness of indications for antidepressants and the causative direction of correlations with the patients' clinical characteristics. .

Change in Health-related Quality of Life After Referral to Memory Assessment Services.

Despite strong support for the provision of memory assessment services (MASs) in England and other countries, their effectiveness in improving patient outcomes is uncertain. We aimed to describe change in patients' health-related quality of life (HRQL) 6 months after referral to MASs and to examine associations with patient characteristics and use of postdiagnostic interventions. Data from 883 patients referred to 69 MASs and their informal caregivers (n=569) were collected at referral and 6 months later. Multivariable linear regression was used to examine associations of change in HRQL (DEMQOL, DEMQOL-Proxy) with patient characteristics (age, sex, ethnicity, socioeconomic deprivation, and comorbidity) and use of postdiagnostic interventions (antidementia medications and nonpharmacological therapies). Mean HRQL improved, irrespective of diagnosis: self-reported HRQL increased 3.4 points (95% CI, 2.7-4.1) and proxy-reported HRQL 1.3 points (95% CI, 0.5-2.1). HRQL change was not associated with any of the patient characteristics studied. Patients with dementia (54%) receiving antidementia drugs reported greater improvement in their HRQL but those using nonpharmacological therapies reported less improvement compared with those note receiving therapy. HRQL improved in the first 6 months after referral to MASs. Research is needed to determine longer term sustainability of the benefits and the cost-effectiveness of MASs.

Predictors of health-related quality of life in maltreated children and adolescents.

Research on the consequences of child maltreatment has primarily focused on behavior and mental health; the children's overall well-being has not received the same attention. A number of studies have investigated health-related quality of life (HRQoL) among victims of child maltreatment, but there is still a lack of knowledge about predictors of HRQoL in maltreated children and adolescents. This study seeks to bridge the gap by drawing data from the German multi-site study Child Abuse and Neglect Case-Management (CANMANAGE). Parents or caregivers of 350 children and adolescents completed a proxy version of the Kidscreen-10-Index, a multidimensional instrument measuring child HRQoL. An additional 249 children age 8years and older completed a self-report version. Multiple regression analyses were performed to identify potential predictors for both self- and proxy-rated HRQoL. Comparisons with the reference group revealed a significantly lower mean proxy-rated HRQoL, the self-rated HRQoL of the study sample was not significantly impaired. Predictors of impaired self-reported HRQoL were older age, self-reported posttraumatic stress symptoms (PTSS), and self-reported emotional and behavioral symptoms. Predictors of impaired proxy-reported HRQoL again were older age, self-reported PTSS, and emotional and behavioral symptoms in the child/adolescent, as reported by the caregiver, as well as low socioeconomic status. Multivariate analysis explained 20% and 38% of the variability in self-reported and proxy-rated HRQoL, respectively. It is important to treat PTSS and emotional and behavioral symptoms in maltreated children, as these two phenomena are strong cross-sectional predictors of a child's HRQoL. Trauma-focused cognitive behavioral therapies are one possible option to address the needs of such children.

Predictors of the health-related quality of life of Chinese people with major neurocognitive disorders and their caregivers: The roles of self-esteem and caregiver's burden.

The present research study aimed to identify and compare the clinical and non-clinical factors that predict the self-reported and proxy-reported health-related quality of life (HRQoL) of people with major neurocognitive disorder (PwND) who are living at home in a Chinese society. A total of 57 Chinese PwND-family caregiver dyads that were using the services of local senior centers were recruited through a cross-sectional survey with convenience sampling. Each PwND and caregiver rated the PwND's HRQoL independently by using the Quality of Life-Alzheimer's disease measure. Additional measures included the Rosenberg Self-Esteem Scale (RSES), Index for Managing Memory Loss, Geriatric Depression Scale, Cornell Scale for Depression in Dementia and Zarit Burden Inventory. The results of hierarchical multiple linear regression analyses showed that the PwND's self-rated HRQoL and caregiver-rated HRQoL were found to be predicted by different clinical and non-clinical variables. In particular, the self-esteem of PwND had the highest predictive power for the self-rated HRQoL, whereas the caregiver burden is the only significant predictor for the caregiver-rated HRQoL. In the present study, the self-esteem of PwND and the caregiver's burden were found to be important factors predicting self-rated HRQoL and caregiver-rated HRQoL respectively, which is probably because of the influence of traditional Chinese cultural values. Thus, it is important for non-pharmacological interventions to address these special needs to promote HRQoL for this population. Geriatr Gerontol Int 2017; 17: 2319-2328.

Sociodemographic Characteristics, Cognitive Function, and Health-related Quality of Life of Patients Referred to Memory Assessment Services in England.

National policy in England is to encourage referral of people with suspected dementia to Memory Assessment Services (MAS). However, little is known about the characteristics of new referrals, which limits our capacity to evaluate these services. The objectives were to: describe the characteristics (age, sex, ethnicity, socioeconomic deprivation, and comorbidity) of referred patients, and examine the relationships between these characteristics and cognitive function (tertiles of Mini-Mental State Examination score) and health-related quality of life (HRQL) (DEMQOL, DEMQOL-Proxy). We used multivariable regression methods to analyze data from 1420 patients from 73 MAS, and their lay carers (n=1020). The mean age of patients was 78 years; 42% had cognitive function equivalent to Mini-Mental State Examination <24. Characteristics associated with lower function were: older age, being female, deprivation, and nonwhite ethnicity. Deprivation and nonwhite ethnicity were also associated with lower self-reported HRQL, as was having multiple comorbidities; older age was associated with better self-reported HRQL. Lower proxy-reported HRQL was associated with being female, deprivation and comorbidities, but not age and ethnicity. A large proportion of study participants had moderate or high cognitive function scores, suggesting that these patients were referred early to MAS. Research is needed to identify why apparent sociodemographic inequalities in use of MAS exist.

Long-term health-related quality of life and psychological adjustment in children after haemolytic-uraemic syndrome.

In children after haemolytic-uraemic syndrome (HUS), little is known about long-term health-related quality of life (HRQoL) and psychological adjustment as defined by behavioural problems, depressive symptoms and post-traumatic stress symptoms. Sixty-two paediatric patients with a history of HUS were included in this study. Medical data of the acute HUS episode were retrieved retrospectively from hospital records. Data on the clinical course at study investigation were assessed by clinical examination and laboratory evaluation. HRQoL and psychological adjustment data were measured by standardised, parent- and self-reported questionnaires. Haemolytic-uraemic syndrome was diagnosed at a mean of 6.5years before the initiation of the study (standard deviation 2.9, range 0.1-15.7) years. Among the preschool children, parents reported that their child was less lively and energetic (HRQoL emotional dimension), while no increased behavioural problems were reported. In the school-age children, self- and proxy-reported HRQoL was well within or even above the norms, while increased total behavioural problems were found. The school-age children reported no increased depression scores. Also none of the children met the criteria for full or partial HUS-associated posttraumatic stress disorder. Healthcare providers should be particularly alert to behavioural problems in school-age children with a history of HUS and to lower HRQoL in preschool children.

Gastrointestinal Symptoms Predictors of Health-Related Quality of Life in Patients With Inflammatory Bowel Disease.

The aim of the study was to investigate the multidimensional gastrointestinal symptoms predictors of generic health-related quality of life (HRQOL) in pediatric patients with inflammatory bowel disease from the perspectives of pediatric patients and parents. The Pediatric Quality of Life Inventory Gastrointestinal Symptoms Scales and Pediatric Quality of Life Inventory 4.0 Generic Core Scales were completed in a 9-site study by 260 families of patients with inflammatory bowel disease. Gastrointestinal Symptoms Scales measuring stomach pain, food and drink limits, gas and bloating, constipation, blood in stool, and diarrhea were identified as clinically important symptom differentiators from healthy controls based on prior findings, and subsequently tested for bivariate and multivariate linear associations with overall HRQOL (Generic Core Scales). Stomach pain, food and drink limits, gas and bloating, constipation, blood in stool, and diarrhea were significantly associated with decreased HRQOL in bivariate analyses (P < 0.001). In predictive models utilizing hierarchical multiple regression analyses controlling for age, sex, and race/ethnicity, gastrointestinal symptoms accounted for an additional 40% of the variance in patient self-reported HRQOL (P < 0.001) and 37% of the variance in parent proxy-reported HRQOL (P < 0.001), reflecting large effect sizes. Stomach pain, food and drink limits, and constipation were significant individual patient-reported predictors after controlling for the other gastrointestinal symptoms in the predictive models. Patient-reported gastrointestinal symptoms differentially predicted HRQOL. Identifying the specific gastrointestinal symptoms from a standardized multidimensional gastrointestinal symptoms profile that are the most important predictors from the patient perspective facilitates a patient-centered approach for interventions designed to ameliorate impaired HRQOL.

Health-Related Quality of Life among Pediatric Hematopoietic Stem Cell Donors

To examine health-related quality of life (HRQoL) among sibling pediatric hematopoietic stem cell donors from predonation through 1 year postdonation, to compare donor-reported HRQoL scores with proxy-reports by parents/guardians and those of healthy norms, and to identify predonation factors (including donor age) potentially associated with postdonation HRQoL, to better understand the physical and psychosocial effects of pediatric hematopoietic stem cell donation. A random sample of 105 pediatric donors from US centers and a parent/guardian were interviewed by telephone predonation and 4 weeks and 1 year postdonation. The interview included sociodemographic, psychosocial, and HRQoL items. A sample of healthy controls matched to donors by age, gender, and race/ethnicity was generated. Key findings included (1) approximately 20% of donors at each time point had very poor HRQoL; (2) child self-reported HRQoL was significantly lower than parent proxy-reported HRQoL at all 3 time points and significantly lower than that of norms at predonation and 4 weeks postdonation; and (3) younger children were at particular risk of poor HRQoL. Additional research to identify the specific sources of poorer HRQoL among at-risk donors (eg, the donation experience vs having a chronically ill sibling) and the reasons that parents may be overestimating HRQoL in their donor children is critical and should lead to interventions and policy changes that ensure positive experiences for these minor donors.

Can a Home-based Cardiac Physical Activity Program Improve the Physical Function Quality of Life in Children with Fontan Circulation?

Patients after Fontan operation for complex congenital heart disease (CHD) have decreased exercise capacity and report reduced health-related quality of life (HRQOL). Studies suggest hospital-based cardiac physical activity programs can improve HRQOL and exercise capacity in patients with CHD; however, these programs have variable adherence rates. The impact of a home-based cardiac physical activity program in Fontan survivors is unclear. This pilot study evaluated the safety, feasibility, and benefits of an innovative home-based physical activity program on HRQOL in Fontan patients. A total of 14 children, 8-12 years, with Fontan circulation enrolled in a 12-week moderate/high intensity home-based cardiac physical activity program, which included a home exercise routine and 3 formalized in-person exercise sessions at 0, 6, and 12 weeks. Subjects and parents completed validated questionnaires to assess HRQOL. The Shuttle Test Run was used to measure exercise capacity. A Fitbit Flex Activity Monitor was used to assess adherence to the home activity program. Of the 14 patients, 57% were male and 36% had a dominant left ventricle. Overall, 93% completed the program. There were no adverse events. Parents reported significant improvement in their child's overall HRQOL (P < .01), physical function (P < .01), school function (P = .01), and psychosocial function (P < .01). Patients reported no improvement in HRQOL. Exercise capacity, measured by total shuttles and exercise time in the Shuttle Test Run and calculated VO2 max, improved progressively from baseline to the 6 and 12 week follow up sessions. Monthly Fitbit data suggested adherence to the program. This 12-week home-based cardiac physical activity program is safe and feasible in preteen Fontan patients. Parent proxy-reported HRQOL and objective measures of exercise capacity significantly improved. A 6-month follow up session is scheduled to assess sustainability. A larger study is needed to determine the applicability and reproducibility of these findings in other age groups and forms of complex CHD.

Abstract 15524: Can a Home-based Cardiac Rehabilitation Program Improve the Physical Function Quality of Life in Children With Fontan Circulation?

Introduction: Patients after Fontan operation for complex congenital heart disease (CHD) have reduced exercise capacity and health-related quality of life (HRQOL). Studies suggest hospital-based cardiac rehabilitation programs can improve exercise capacity and HRQOL in patients with CHD; however, these programs have variable adherence rates. The impact of a home-based cardiac rehabilitation program in Fontan survivors is unclear. This pilot study evaluated the safety, feasibility, and benefits of an innovative home-based physical activity program on HRQOL in Fontan patients. Methods: A total of 14 children, 8-12 yr, with Fontan circulation enrolled in a 12-week moderate/high intensity home-based cardiac physical activity program, which included a home exercise routine and 3 formal in-person assessments at 0, 6, and 12 weeks. Subjects and parents completed validated questionnaires to assess HRQOL. The Shuttle Test Run was used to measure exercise capacity. A Fitbit® Flex Activity Monitor was used to assess adherence to the home activity program. Results: Of the 14 subjects, 57% were male and 36% had a dominant left ventricle. Overall, 93% completed the program. There were no adverse events. Parents reported improvement in their child’s overall HRQOL (p&lt;0.01), physical function (p&lt;0.01), school function (p=0.01), and psychosocial function (p&lt;0.01). Exercise capacity, measured by Shuttle Run time, improved progressively from baseline to the 6 and 12 week follow up sessions (Figure). Monthly Fitbit® data suggested good adherence to the program. Conclusion: This 12-week home-based cardiac physical activity program is safe and feasible in Fontan patients. Parent proxy-reported HRQOL and objective measures of exercise capacity significantly improved. A 6 month follow up session is scheduled to assess sustainability. A larger study is anticipated to determine applicability and reproducibility of these findings in other age groups and forms of complex CHD.

The Clinical Utility of Health-Related Quality of Life Screening in a Pediatric Inflammatory Bowel Disease Clinic

Adjusting to symptom flares, treatment regimens, and side effects places youth with inflammatory bowel disease (IBD) at increased risk for emotional and behavioral problems and adverse disease outcomes. Implementation of psychosocial screening into clinical practice remains a challenge. This study examines the clinical utility of health-related quality of life (HRQOL) screening in predicting disease outcome and healthcare utilization. One hundred twelve youth of 7 to 18 years diagnosed with IBD and their parents. Youth completed standardized measures of HRQOL and depression. Parents completed a proxy report of HRQOL. Pediatric gastroenterologists provided the Physician Global Assessment. Families were recruited from a pediatric gastroenterology clinic. Retrospective chart reviews examined disease outcome and healthcare utilization for 12 months after baseline measurement. Linear regressions, controlling for demographic and disease parameters, revealed that baseline measurement of youth and parent proxy-reported HRQOL predicted the number of IBD-related hospital admissions, gastroenterology clinic visits, emergency department visits, psychology clinic visits, telephone contacts, and pain management referrals over the next 12 months. Disease outcome was not significant. Lower HRQOL was predictive of increased healthcare utilization among youth with IBD. Regular HRQOL screening may be the impetus to providing better case management and allocating resources based on ongoing care needs and costs. Proactive interventions focused on patients with poor HRQOL may be an efficient approach to saving on healthcare costs and resource utilization.

Measuring health-related quality of life in high-grade glioma patients at the end of life using a proxy-reported retrospective questionnaire

To develop, validate, and report on the use of a retrospective proxy-reported questionnaire measuring health-related quality of life (HRQoL) in the end-of-life (EOL) phase of high-grade glioma (HGG) patients. Items relevant for the defined construct were selected using existing questionnaires, topics identified as important in literature, and expert opinion (experienced neuro-oncologists and EOL experts). Psychometric properties, content validity and internal consistency, were determined and the questionnaire was subsequently adapted. Proxy-reported HRQoL data of HGG patients in the EOL, including changes over time, were analyzed. Twenty-nine items were selected covering seven domains; physical comfort, physical and cognitive functioning, psychological, social and spiritual well-being, and overall quality of life. Relatives of 83 deceased HGG patients completed the questionnaire. Content validity was assessed to be adequate. Internal consistency in the domains varied from reasonable to good. Two items were excluded due to poor psychometric properties. Symptom burden increased (p < 0.01), except for nausea (p = 0.058), as death approached. Cognitive, physical and psychological functioning deteriorated over time (all p < 0.01). Acceptance of disease seemed to increase slightly towards death, but this was not significant (p = 0.058). Participating in social activities and family life was rated as poor (≤ 50), whereas received support from their social environment and dying with dignity were rated as good (>50). Overall quality of life was rated as poor, mean (SD) of 29 (26). Measuring HRQoL at the EOL of HGG patients with a retrospective, proxy-reported questionnaire was feasible, yielding a validated instrument. HRQoL was reported as poor and deteriorated as death approached.

Body mass index (BMI)‐for‐age and health‐related quality of life (HRQOL) among high school students in Tehran

The study aimed to determine the association between body mass index (BMI)-for-age and health-related quality of life (HRQOL) among high school students in Tehran. A total of 465 high school students (227 girls and 238 boys) and their parents were participated in this cross-sectional study. Body weight and height of the students were measured. For assessing HRQOL, both adolescent self-report and parent proxy-report of the Persian version of Pediatric Quality of Life Inventory (PedsQL™4.0) questionnaire were completed by adolescents and their parents respectively. The prevalence of overweight and obesity (38.5%) was higher than severe thinness and thinness (2.8%). Mean of adolescent self-reported and parent proxy-reported HRQOL total score were 80.26 ± 12.07 and 81.30 ± 14.08 respectively. In terms of HRQOL subscale scores, the highest subscale score of HRQOL was reported in social functioning (87.27 ± 14.40) and the lowest score was reported in emotional functioning (69.83 ± 18.69). Based on adolescent self-report, adolescent boys had significantly higher mean score for total and all subscale scores of HRQOL compared with girls (P < 0.05). BMI-for-age was inversely correlated to adolescent self-reported HRQOL total score (r = -0.25, P < 0.05). Based on adolescents self-report, HRQOL total score was significantly different by body weight status (F = 16.16, P < 0.05). Normal weight adolescents had significantly higher HRQOL total score compared with overweight (mean difference: 7.32; P < 0.05) and obese adolescents (mean difference: 9.10, P < 0.05). The HRQOL total score was not significantly different between normal weight and underweight adolescents (mean difference: 1.65, P = 0.96). However, based on parent proxy-reports, HRQOL total score was not significantly different by body weight status (F = 2.64, P = 0.059). More than one-third of adolescents were overweight and obese. BMI-for-age was inversely correlated to adolescent self-reported HRQOL. Based on adolescents' perspective, overweight and obese adolescents had poorer HRQOL compared with normal weight adolescents. Intervention studies are needed to improve the HRQOL of overweight and obese adolescents in Tehran.

AB1444-HPR Does effect clinical pilates therapy on daily living avtivities and motor function in children with juvenile idiopathic arthritis in two weeks? A pilot study

BackgroundThe importance of exercise is remarkable in children with Juvenile Idiopathic Arthritis (JIA). ClinicalPilatesTherapy don’t generatefatigue,help inhibition of pain with respiratorycontrol and muscle spasm.This exercise model is entertainingand can be...