Self-reported Health-related Quality Of Life Research Articles

Children’s health-related quality of life in early childhood education and care

ABSTRACT Studies focusing on young children’s self-reported health-related quality of life (HRQoL) are scarce. More research is needed on the reliability and validity of the methods as well as how self-reported HRQoL in early childhood is linked to other well-being factors. Using the Kiddy-KINDL questionnaire in interviews with 245 3- to 6-year-old children this study investigated how children view their quality of life in Swedish speaking early childhood education and care in Finland, how reliably it can be assessed, and how it relates to age, gender, parent-reported socioeconomic background, and teacher-reported psychological well-being. The results showed that only the social-emotional scale consisting of eight items was a reliable index of HRQoL. The correlation over time in the 12-week follow-up was significant, but small, which may reflect children’s here and now thinking. Children’s poorer self-reported social-emotional well-being was associated with externalizing problems as reported by the teachers. Older children and children from highly educated families reported better social-emotional well-being.

Health-related quality of life and fatigue in children with Pompe disease.

ObjectivePompe disease is an inheritable metabolic myopathy caused by the deficiency of the lysosomal enzyme acid-⍺-glucosidase. The aim of this study was to investigate self-reported and parent-reported health related quality of life (HR-QOL) and fatigue in children with Pompe disease. Study designIn this cross-sectional study, the validated child health questionnaire (CHQ) and PedsQol multidimensional fatigue scale (PedsQol MFS) were used to respectively measure (both self-reported and parent-reported) HR-QOl and fatigue in children with Pompe disease. ResultsIn total, 24 Pompe patients with a median age of 9.6 years [IQR: 7.7-11.9], 14 had classic infantile Pompe disease. Self-reported HR-QOL was comparable to the healthy Dutch population on most domains, classic infantile patients scored mainly lower on physical functioning. Parents of classic infantile patients reported a significantly lower HR-QOL of their children on 9 domains, parents of non-classic patients on 5 domains.Self-reported fatigue levels in children with classic infantile Pompe disease were increased for 2 of 3 domains compared to healthy peers, fatigue in non-classic infantile Pompe patients did not differ. Parents of classic infantile patients reported higher levels of fatigue in all 3 domains compared to healthy children, whereas parents of childhood onset children scored higher on the cognitive fatigue domain. ConclusionChildren with Pompe disease report comparable HR-QOL on most domains compared to healthy peers. Contrarily, parent-reported HR-QOL was substantially lower on most domains compared to references values. As expected in relation to disease severity, unfavorable effects on HR-QOL and fatigue were more pronounced in classic infantile Pompe patients.

Influencing factors of health-related quality-of-life perceived by both children/adolescents patients with type-1 diabetes mellitus and their parents: A North-African study

Aim To determine the influencing factors of health-related quality-of-life (HRQoL) perceived by North-African children/adolescents with type-1 diabetes-mellitus (T1DM) and their parents. Methods It was a cross sectional study conducted in Tunisia. A total of 116 patients ( ie ; 43 children and 73 adolescents) and their parents were included. The Arabic validated version of the Pediatric Generic Core Quality-of-Life Inventory 4.0-Scale (PedsQL4.0) was used to evaluate the HRQoL of children/adolescents as perceived by patients and parents. The dependent data were the patients’ self-report and the parents’ proxy-report of the PedsQL4.0 total scores, and the independent data were the patients and parents characteristics. Results Patients’ PedsQL4.0 total score was influenced significantly by siblings in the family > 2; lipodystrophy, and glycosylated hemoglobin (HbA1C). The combination of these factors explained 34.84% of the PedsQL4.0 total score variability. Parents’ PedsQL4.0 total score was influenced significantly by lipodystrophy, siblings; body mass index (BMI), hypoglycemia episodes, and HbA1C. The combination of these factors explained 56.92% of the PedsQL4.0 total score variability. Conclusion T1DM patients self-reported HRQoL was influenced by siblings in the family > 2; lipodystrophy, and HbA1C. The parents’ proxy-report HRQoL was influenced by lipodystrophy, siblings, BMI, hypoglycemia episodes, and HbA1C.

Self-reported health related quality of life in children and adolescents with an eating disorder

BackgroundEating disorders in children and adolescents can have serious medical and psychological consequences. The objective of this retrospective quantitative study is to gain insight in self-reported Health Related Quality of Life (HRQoL) of children and adolescents with a DSM-5 diagnosis of an eating disorder.MethodCollect and analyse data of patients aged 8–18 years, receiving treatment for an eating disorder. At the start and end of treatment patients completed the KIDSCREEN-52, a questionnaire measuring HRQoL.ResultsData of 140 patients were analysed. Children diagnosed with Anorexia Nervosa, Bulimia Nervosa, and Other Specified Feeding or Eating Disorder all had lower HRQoL on multiple dimensions at the start of treatment, there is no statistically significant difference between these groups. In contrast, patients with Avoidant Restrictive Food Intake Disorder only had lower HRQoL for the dimension Physical Well-Being. HRQoL showed a significant improvement in many dimensions between start and end of treatment, but did not normalize compared to normative reference values of Dutch children.ConclusionThe current study showed that self-reported HRQoL is low in children with eating disorders, both at the beginning but also at the end of treatment. This confirms the importance of continuing to invest in the various HRQoL domains.

Quality of life in children and adolescents after treatment for acute lymphoblastic leukemia according to the NOPHO ALL2008 protocol.

The improved outcome of childhood acute lymphoblastic leukemia (ALL) over the last decades has increased the importance of assessing late effects and health-related quality of life (HRQoL), particularly when evaluating and comparing outcomes in clinical trials. This study aimed to assess HRQoL in children treated for ALL according to the NOPHO ALL2008 protocol. Children, aged 1 to less than 18years at diagnosis, alive in first remission, and their parents, were asked to complete PedsQL 4.0 Generic Core Scales (self- and proxy-report) at ≥6months after end of therapy. Data on socioeconomic factors and parent-reported toxicity were collected through a study-specific questionnaire, and the NOPHO ALL2008 database was used to identify eligible families and add additional disease- and treatment-related data. HRQoL data were collected during 2013-2019 in Sweden, Finland, and Denmark. A total of 299 children were included. The older children (8years and older) reported similar HRQoL scores compared to Finnish reference data, except lower scores for School Functioning in high-risk patients. Scores from the parent-proxy and self-reports from 5-7-year olds were notably lower than reference. Parent-reported toxicity was associated with lower total and physical HRQoL scores in adjusted models for younger as well as older children in the self-report and parent-proxy versions, and also with lower psychosocial score in the parent-proxy. Self-reported HRQoL was similar to reference population. The most important determinant for HRQoL after end of ALL treatment was parent-reported toxicity during treatment. Thus, minimizing complications is an obvious focus for future treatment protocols.

Improvement of immune dysregulation in individuals with long COVID at 24-months following SARS-CoV-2 infection

This study investigates the humoral and cellular immune responses and health-related quality of life measures in individuals with mild to moderate long COVID (LC) compared to age and gender matched recovered COVID-19 controls (MC) over 24 months. LC participants show elevated nucleocapsid IgG levels at 3 months, and higher neutralizing capacity up to 8 months post-infection. Increased spike-specific and nucleocapsid-specific CD4+ T cells, PD-1, and TIM-3 expression on CD4+ and CD8+ T cells were observed at 3 and 8 months, but these differences do not persist at 24 months. Some LC participants had detectable IFN-γ and IFN-β, that was attributed to reinfection and antigen re-exposure. Single-cell RNA sequencing at the 24 month timepoint shows similar immune cell proportions and reconstitution of naïve T and B cell subsets in LC and MC. No significant differences in exhaustion scores or antigen-specific T cell clones are observed. These findings suggest resolution of immune activation in LC and return to comparable immune responses between LC and MC over time. Improvement in self-reported health-related quality of life at 24 months was also evident in the majority of LC (62%). PTX3, CRP levels and platelet count are associated with improvements in health-related quality of life.

Predictors of symptom trajectory in newly diagnosed ulcerative colitis: a 3-year follow-up cohort study.

Psychological symptoms are associated with poorer ulcerative colitis (UC)-related outcomes. However, the majority of research is cross-sectional. We aimed to identify subgroups based on the longitudinal evolution of GI symptom levels and health-related quality of life (HRQoL), and to disentangle the directionality of effects between GI symptom levels and psychological distress. Self-reported GI symptom severity, HRQoL, inflammatory biomarkers and psychological distress were assessed in 98 newly diagnosed UC patients at disease onset and yearly for 3 consecutive years. Latent class growth analysis was used to determine subgroups based on longitudinal trajectories of symptom severity and HRQoL, and baseline predictors of trajectory group membership were determined. Cross-lagged structural equation models were used to disentangle temporal relationships between psychological functioning and symptom severity. Patients with higher initial psychological distress had increased probability of maintaining higher levels of diarrhea and abdominal pain. Conversely, patients with lower initial levels of diarrhea and abdominal pain had higher chances of maintaining lower levels of psychological distress. Higher levels of C-reactive protein at baseline predicted greater improvements in mental health after anti-inflammatory treatment. Reductions in diarrhea and abdominal pain preceded reductions in psychological symptoms over time. Baseline psychological distress is predictive of increased GI symptom severity and reduced mental HRQoL over time, suggesting early assessment of psychological symptoms may identify patients who may have worse disease trajectories. Abdominal pain predicted increased psychological distress, but not the other way around. Intervening on abdominal pain may help prevent or reduce future psychological distress.

Social determinants of health rather than race impact health-related quality of life in 10-year-old children born extremely preterm.

Reducing healthcare disparities among children is extremely important given the potential impact of these disparities on long-term health-related quality of life (HRQL). Race and parental socioeconomic status (SES) are associated with child HRQL, but these associations have not been studied in infants born extremely preterm (EP), a population at increased risk for physical, cognitive, and psychosocial impairments. Achieving health equity for infants born EP across their life course requires identifying the impact of racism and SES on HRQL. We aimed to evaluate the association between self-reported maternal race, SES factors, and HRQL among 10-year-old children born EP. Participants were identified from an ongoing multicenter prospective longitudinal study of Extremely Low Gestational Age Newborns (ELGAN Study), born between 2002 and 2004, and evaluated at 10 years of age using the Pediatric quality of life (QoL) Inventory completed by their parent or guardian, assessing physical, emotional, social, school, and total (composite) QoL domains. Multivariable regression models were used to evaluate the relationship between QoL scores and self-identified maternal race, adjusting for SES factors (education level, marital status, and public insurance). Of 1,198 study participants who were alive at 10 years of age, 863 (72.0%) were evaluated at 10 years of age. Differences in mean 10-year QoL scores across racial groups were observed and were significant on univariate analysis. However, these associations attenuated when adjusted for the marital status, public insurance status, and education status of mothers. A comparison of children with English as the primary language spoken at home vs. any other language revealed a significant difference only in school QoL, in which non-English language was associated with more favorable school QoL scores. Among 10-year-old children born EP, differences in parent-reported QoL were associated with maternal SES factors but not with race. Our results suggest that interventions designed to improve the SES of mothers may enhance the QoL of children born EP. Furthermore, these results underscore that race is a social construct, rather than a biological variable, as we work toward greater equity in care provision.

Symptoms, Mental Health, and Quality of Life Among Patients After COVID-19 Infection: A Cross-sectional Study in Vietnam.

This study was conducted to characterize the symptoms, mental health, quality of life (QoL), and associated factors following the coronavirus disease 2019 (COVID-19) infection. This cross-sectional study included 394 participants previously infected with COVID-19 in Ho Chi Minh City, Vietnam. Mental health was assessed using the 21-item Depression, Anxiety, and Stress Scale (DASS-21). Participants self-reported health-related QoL was measured with the EuroQol 5-Dimension 5-Level (EQ-5D-5L) scale. Among the participants, 76.4% reported experiencing at least one symptom following COVID-19 infection. The most common symptoms were fatigue (42.1%), cognitive dysfunction (42.9%), and hair loss (27.9%). According to the DASS-21 results, the proportions of depression, anxiety, and stress were 28.7%, 26.4%, and 20.6%, respectively. The mean scores on the EQ-5D-5L and the EuroQol Visual Analog Scale were 0.94±0.11 and 84.20±13.11, respectively. Regarding QoL issues, the highest proportion of participants (32.7%) reported experiencing anxiety or depression, followed by pain or discomfort (25.4%). Multivariable logistic regression analysis revealed that factors associated with the presence of symptoms following COVID-19 infection included female (odds ratio [OR], 2.84; 95% confidence interval [CI], 1.65 to 4.91) and having QoL issues (OR, 3.25; 95% CI, 1.71 to 6.19). The study investigated the prevalence rates of various symptoms following COVID-19 infection. These findings underscore the need to prioritize comprehensive care for individuals recovering from COVID-19 and to implement strategies to mitigate the long-term impact of the disease on mental health and QoL.

Self-Reported Health-Related Quality of Life and Residual Symptoms among Virologically Suppressed People Living with HIV in the Era of Single-Tablet Regimens in Taiwan: A Cross-Sectional Study.

This study assessed the health-related quality of life (HRQoL) and residual symptom burden among virologically suppressed people living with human immunodeficiency virus (HIV) (PLWH) using a single-tablet regimen in Taiwan. This cross-sectional study administered a self-reported online survey between July and October 2021 to anonymised virologically suppressed PLWH aged ≥20 years. Demographic, HIV-related variables, EuroQol-5-dimensions (EQ-5D), visual analogue scale (VAS), and HIV Symptom Index were analysed. Bivariate analyses were performed to compare HRQoL differences between PLWH and non-PLWH. Among 120 PLWH, 80.9% had HIV diagnosis for <15 years, median antiretroviral therapy (ART) duration of 7.0 years (Q1-Q3:4.0-11.0), and 62.5% had ≥1 comorbidity. The most common comorbidities were depression (26.7%) and hyperlipidaemia (15.8%). About one-fifth of PLWH received constant family support (25.8%) and peer support (21.7%). Married individuals or individuals with higher incomes had significantly better family support status. There was no significant difference across the five dimensions between PLWH and non-PLWH. PLWH perceived being bothered by fatigue/lack of energy (63.3%), sleep difficulties (63.3%), feeling sad/low/unhappy (51.7%), and appearance changes (51.7%). PLWH could achieve similar HRQoL as non-PLWH with stable treatment, highlighting an opportunity to focus on person-centred holistic care beyond HIV, especially on the psychological aspect, for the best possible HRQoL for PLWH.

Investigating the effects of frailty on six-month outcomes in older trauma patients admitted to UK major trauma centres: a multi-centre follow up study

BackgroundPre-injury frailty is associated with adverse in-hospital outcomes in older trauma patients, but the association with longer term survival and recovery is unclear. We aimed to investigate post discharge survival and health-related quality of life (HRQoL) in older frail patients at six months after Major Trauma Centre (MTC) admission.MethodsThis was a multi-centre study of patients aged ≥ 65 years admitted to five MTCs. Data were collected via questionnaire at hospital discharge and six months later. The primary outcome was patient-reported HRQoL at follow up using Euroqol EQ5D-5 L visual analogue scale (VAS). Secondary outcomes included health status according to EQ5D dimensions and care requirements at follow up. Multivariable linear regression analysis was conducted to evaluate the association between predictor variables and EQ-5D-5 L VAS at follow up.ResultsFifty-four patients died in the follow up period, of which two-third (64%) had been categorised as frail pre-injury, compared to 21 (16%) of the 133 survivors. There was no difference in self-reported HRQoL between frail and not-frail patients at discharge (Mean EQ-VAS: Frail 55.8 vs. Not-frail 64.1, p = 0.137) however at follow-up HRQoL had improved for the not-frail group but deteriorated for frail patients (Mean EQ-VAS: Frail: 50.0 vs. Not-frail: 65.8, p = 0.009). There was a two-fold increase in poor quality of life at six months (VAS ≤ 50) for frail patients (Frail: 65% vs. Not-frail: 30% p < 0.009). Frailty (β-13.741 [95% CI -25.377, 2.105], p = 0.02), increased age (β -1.064 [95% CI [-1.705, -0.423] p = 0.00) and non-home discharge (β -12.017 [95% CI [118.403, 207.203], p = 0.04) were associated with worse HRQoL at follow up. Requirements for professional carers increased five-fold in frail patients at follow-up (Frail: 25% vs. Not-frail: 4%, p = 0.01).ConclusionsFrailty is associated with increased mortality post trauma discharge and frail older trauma survivors had worse HRQoL and increased care needs at six months post-discharge. Pre-injury frailty is a predictor of poor longer-term HRQoL after trauma and recognition should enable early specialist pathways and discharge planning.

Self-Reported Health-Related Quality of Life of Children with Spinal Muscular Atrophy: Preliminary Insights from a Nationwide Patient Registry in Germany.

Spinal muscular atrophy (SMA) is a rare, severely debilitating neuromuscular disease characterized by a wide spectrum of progressive muscular atrophy and weakness. The objective of this pilot study was to estimate self-assessed health-related quality of life (HRQoL) of children with SMA. Children with SMA were recruited via the German national TREAT-NMD SMA patient registry and asked to self-complete the following rating-scales: KIDSCREEN-27, KINDL, the PedsQL 3.0 Neuromuscular Module (PedsQL 3.0 NMM), EQ-5D-5L, and the Health Utilities Index (HUI). Estimates were stratified by current best motor function of the lower limb and trunk (i.e., non-sitter, sitter, and walker) and SMA type (i.e., type I, II, and III). In total, 17 children with SMA (mean age: 9.88 years, SD: 4.33 years, range: 5-16 years; 59% female) participated in the study. Across examined strata, the mean KIDSCREEN-27 total score was estimated at between 48.24 and 83.81; the mean KINDL total score at between 60.42 and 76.73; the mean PedsQL 3.0 NMM total score at between 58.00 and 83.83; the mean EQ-5D-5L utility at between 0.31 and 0.99; and the mean HUI-derived utility at between -0.02 and 0.96. The results from this pilot study show that German children with SMA, despite significant physical disability, have surprisingly good HRQoL as assessed using KIDSCREEN-27. Yet, many reside in health states associated with low utility. The disease burden was generally higher among non-sitters compared with walkers, and SMA type I compared with type III, but more research is needed to further delineate this variability. Our preliminary findings contribute to the understanding of HRQoL in pediatric patients with SMA and should be helpful to inform the design of future studies of this patient population.

No benefit of vitamin D supplementation on muscle function and health-related quality of life in primary cardiovascular prevention patients with statin-associated muscle symptoms: A randomized controlled trial

Statins are the leading lipid-lowering drugs, reducing blood cholesterol by controlling its synthesis. Side effects are linked to the use of statins, in particular statin-associated muscle symptoms (SAMS). Some data suggest that vitamin D supplementation could reduce SAMS. The purpose of this study was to evaluate the potential benefits of the vitamin D supplement in a randomized controlled trial. Men (n=23) and women (n=15) (50.5 ± 7.7 years [mean ± SD]) in primary cardiovascular prevention, self-reporting or not SAMS, were recruited. Following 2 months of statin withdrawal, patients were randomized to supplementation (vitamin D or placebo). After 1 month of supplementation, statins were reintroduced. Before and 2 months after drug reintroduction, muscle damage (creatine kinase and myoglobin) was measured. Force (F), endurance (E) and power (P) of the leg extensors (ext) and flexors (fle) and handgrip strength (FHG) were also measured with isokinetic and handheld dynamometers, respectively. The Short Form 36 Health Survey (SF-36) questionnaire and a visual analog scale (VAS) were administrated to assess participants' self-reported health-related quality of life and SAMS intensity, respectively. Repeated-measures analysis was used to investigate the effects of time, supplementation, and their interaction, according to the presence of SAMS. Despite no change for objective measures, subjective measures worsened after reintroduction of statins, independent of supplementation (VAS, SF-36 mental component score, all p < 0.05). However, no interaction between time and supplementation according to the presence of SAMS was observed for any variables. Vitamin D supplementation does not appear to mitigate SAMS.

P26: Self-reported health-related quality of life for people with dementia in long-term care facilities in Taiwan: a nationwide survey

Background:Quality of life is an essential outcome parameter in geriatric research; however, research to date offers mixed evidence about the factors associated with health-related quality of life (HRQOL) among people with dementia (PWDs). We aimed to identify factors relating to HRQOL among PWDs living in long-term care (LTC) facilities.Methods:A total of 299 from 1,607 registered long-term care facilities were randomly selected in every administrative region of Taiwan. A cross-sectional two-phase survey, which included the demographic data, comorbidities, EuroQol-5 dimensions-5 levels (EQ-5D-5L), mini-mental state examination (MMSE) score, clinical dementia rating scores (CDR), behavioral and psychological symptoms of dementia, and activities of daily living (ADL) of PWDs, was then conducted from 2019 to 2020.Results:A total of 1,313 PWDs who self-completed EQ-5D-5L were enrolled in this analysis with a mean age of 76.43 ± 12.7 years. The mean utility and visual analogue scale (VAS) scores of EQ-5D-5L were 0.10 (standard deviation, SD = 0.48) and 66.57 (SD = 20.67), respectively. Multivariate linear regression analysis showed that higher scores in ADL, instrumental ADL, and lower CDR sum scores were associated with higher EQ-5D-5L utility scores. Higher ADL scores and higher MMSE scores were associated with higher scores in an EQ-5D-5L-VAS. More depressive symptoms were related to both lower utility score and lower EQ-5D-5L-VAS score.Conclusion:Findings highlight the importance to recognize and to treat depression to maintain HRQOL of PWDs in LTC facilities. Longitudinal studies are needed to better understand the long-term changes in HRQOL of PWDs.

Longitudinal Differences By Treatment Arm in Health-Related Quality of Life Among High Risk Pediatric Hodgkin's Lymphoma Patients Treated on the Children's Oncology Group Ahod 1331 Study

Introduction: Brentuximab vendotin (BV) with AVE-PC demonstrated superior efficacy to ABVE-PC for pediatric patients with high-risk HL in the AHOD 1331 trial. However, there are no data regarding the impact on health-related quality of life (HRQoL) with the addition of BV into the treatment of pediatric HL. Methods: Eligibility for AHOD 1331 (NCT 02166463) included previously untreated HL with high risk disease, defined as stage IIB +bulk, IIIB, IVA, or IVB classic HL. Participants were randomized to either BV-AVE-PC (“BV” arm) or ABVE-PC (standard arm). Among the first 309 participants enrolled in a prespecified longitudinal patient-reported outcomes sub study, 280 were age 11+ years and eligible to self-report HRQoL using the seven-item Child Health Ratings Inventories (CHRIs)-Global scale. HRQoL was assessed prior to treatment (T1), at cycle 2 (T2), at cycle 5 (T3), and at the end of treatment (T4). A clinically meaningful increase in HRQoL was considered a change of 7 points in the CHRIs-Global score (CHRIs), translating to a 1/3 standard deviation. Multivariable linear regression estimated the association between demographic/clinical variables and HRQoL at T1. Linear mixed models estimated the change in HRQoL relative to T1 with a time*treatment arm interaction to estimate differences in the change in HRQoL across treatment arm. This model was adjusted for age, sex, race/ethnicity, stage, large mediastinal adenopathy (LMA), B-symptoms at diagnosis, and a time-varying covariate for involved site radiation prior to T4. Results: Participant and disease characteristics were balanced by treatment arm; mean age at enrollment was 15.6 years (SD= 1.9), 52% were female, 60.4% had LMA, and 58% were stage IV. 93% of participants completed the CHRIs at T1, 92% at T2, 89% at T3, and 74% at T4. At T1, female sex (mean (SD) 64.1 (20.2) vs 71.3 (23.3) p=0.004) and fever (60.8 (23.0) vs. 71.9 (20.4) p=0.024) were associated with worse HRQoL. At each time point after pre-treatment (T1), HRQoL was higher, on average, in the BV arm compared to the standard arm (Figure 1). By T2, participants in the BV arm experienced a statistically and clinically significant increase in HRQoL compared to pre-treatment (T1) (Table 1; β=7.3 95%CI 3.2, 11.4; p≤0.001), which was greater than the change experienced in the standard arm (difference in change β=5.1 95%CI -0.2, 10.3; p=0.057). At T3 and T4 the BV arm continued to experience statistically significant improvements in HRQoL relative to T1 (T3 β=5.3 95%CI 0.8, 9.9; p=0.022; T4 β=14.6 95%CI 10.3, 18.9; p≤0.001). The standard arm did not experience a statistically or clinically significant increase in HRQoL from T1 until T4 (β=9.3 95%CI 4.7, 11.5; p&amp;lt;0.001). Conclusion: Patients with high-risk pediatric HL treated with BV-AVE-PC experienced more rapid and sustained improvement in HRQoL compared to patients treated with ABVE-PC. These data also demonstrate the feasibility and importance of incorporating HRQoL assessments into pediatric clinical trials.

Key predictors of epilepsy-specific health-related quality of life (HRQOL) in youth with epilepsy

PurposeEpilepsy-specific health-related quality of life (HRQOL) is an important outcome in youth with epilepsy (YWE). The PedsQL™ Epilepsy Module is the only caregiver-proxy and youth self-report epilepsy-specific HRQOL measure that can be used with youth 2–25 years. Multiple factors affect HRQOL, including epilepsy-specific characteristics, comorbid mental and behavioral health concerns, as well as sociodemographic factors. However, we have not yet examined the cumulative impact of these factors on epilepsy-specific HRQOL in YWE using the PedsQL™ Epilepsy module. MethodYouth with epilepsy (n = 281) and their caregivers completed questionnaires focused on sociodemographic factors (e.g., youth biological sex and age), mood/anxiety and behavior symptoms (i.e., Behavioral Assessment Scale for Children – Second Edition; BASC-2, Parent Rating Scale), epilepsy characteristics [e.g., seizure frequency, number of anti-seizure medications (ASMs), ASM side effects, and years since diagnosis], and the PedsQL™ Epilepsy module (subscales: Impact, Cognitive Functioning, Executive Functioning, Sleep, and Mood/Behavior). ResultsHierarchical linear regressions were conducted to examine caregiver-proxy and youth self-reported factors that affect epilepsy-specific HRQOL. Results indicate the strongest key shared predictors of HRQOL in YWE, for both youth and caregiver informants, were mental and behavioral health symptoms. For instance, caregiver-proxy report of YWE HRQOL indicated BASC-2 Externalizing (p < 0.05), Behavioral Symptoms (p < 0.01), and Adaptive Skills (p < 0.001) explained 58 % of the variance in youth Cognitive Functioning HRQOL, while youth self-report of HRQOL indicated that BASC-2 Externalizing (p < 0.01), Behavioral Symptoms (p < 0.05), and Adaptive Skills (p < 0.001) contributed only 36 % of the variance in Cognitive Functioning HRQOL above and beyond the variance explained by sociodemographic and epilepsy-specific characteristics. Similar results were noted for Executive Functioning HRQOL domain, wherein caregiver-proxy report of YWE HRQOL indicated BASC-2 Internalizing (p < 0.01), Behavioral Symptoms (p < 0.001) and Adaptive Skills (p < 0.001) explained 65 % of variance in Executive Functioning, whereas youth self-report of Executive Functioning HRQOL indicated that caregiver-proxy BASC-2 Internalizing (p < 0.001) and Behavioral Symptoms (p < 0.01) explained 34 % of the variance in Executive Functioning HRQOL, above and beyond the variance explained by sociodemographic and epilepsy-specific characteristics. Unique mental and behavioral health predictors of YWE HRQOL were also found for both caregiver-proxy and youth self-report. ConclusionsGiven the integral role of mental and behavioral health symptoms in epilepsy-specific HRQOL, it is critical to address mental and behavioral health symptoms preventatively and proactively to provide YWE with the most optimal health plan, including good seizure control, minimal ASM side effects, and the best possible HRQOL.

Health-related quality of life among adolescents with type 1 diabetes since the second wave of the COVID-19 pandemic in Germany

ObjectiveThe COVID-19 pandemic had an impact on everyday life and in general, reduced the health-related quality of life (HRQoL) of adolescents. In this study, we assess the HRQoL of adolescents...

Lifestyle Behaviors and Health-Related Quality of Life in Cancer Survivors: A Latent Class Analysis.

Healthy lifestyle behaviors can improve health-related quality of life (HRQOL) in cancer survivors; but the combination of behaviors most important for HRQOL is not known. This study investigated the patterns of lifestyle behaviors among cancer survivors and differences in HRQOL between behavioral classes. Cancer survivors (n = 2,463) were invited to participate in a cross-sectional survey. Participants (N = 591) were predominately female (63%) and non-Hispanic White (90%). Survey items included self-reported physical activity, diet, smoking, sleep, HRQOL, and demographics. Behavioral classes were estimated by latent class analysis. Differences between classes were assessed by latent class regression. Compared with the "healthy lifestyles" class (higher probabilities of meeting aerobic/strength-based activity guidelines, high fruit/vegetable intake, and no sleep problems; 11% of sample), the "sleep and diet problems with inconsistent physical activity" class (higher probabilities of not meeting strength-based guidelines, low fruit/vegetable intake, some sleep problems; marginally higher probability of meeting aerobic guidelines; 41%) had poorer general and physical HRQOL. The "poor physical activity and diet" class (higher probabilities of not meeting aerobic/strength-based guidelines, low fruit/vegetable intake, and some sleep problems; 48%) had poorer general, physical, and mental HRQOL. Few participants exhibited healthy lifestyle patterns associated with HRQOL. The findings provide opportunities to develop differentiated multiple behavior-change interventions, targeted to two common patterns of behavior. A large subgroup of cancer survivors was susceptible to suboptimal physical activity and diet, warranting interventions exclusively targeting these behaviors. Another subgroup was susceptible to suboptimal physical activity, diet, and sleep, indicating interventions for this group should include strategies targeting these three behaviors.

Cross-sectional and prospective associations between children's 24-h time use and their health-related quality of life: a compositional isotemporal substitution approach

Promoting active, balanced lifestyles among children may be an important approach to optimising their health-related quality of life (HRQoL). However, the relationships between children's movement behaviours and HRQoL remain unclear. We examined the associations between movement behaviours (sleep, inactivity, light and moderate-to-vigorous intensity physical activity) assessed using accelerometers at ages 8 and 10 years and self-reported HRQoL scores (overall, and physical and emotional well-being, self-esteem, relationship with family and friends, and school functioning domains) at age 10 years among 370 children in a local birth cohort using compositional isotemporal substitution techniques. Cross-sectionally, light and moderate-to-vigorous intensity physical activities were associated with better self-esteem (β=15.94 [2.71, 29.18]) and relationship with friends (β=10.28 [3.81, 16.74]) scores respectively. Prospectively, inactivity was associated with lower overall HRQoL (β=-10.00 [-19.13,-0.87]), relationship with friends (β=-16.41 [-31.60,-1.23]) and school functioning (β=-15.30 [-29.16,-1.44]) scores, while sleep showed a positive trend with overall HRQoL (β=10.76 [-1.09, 22.61]) and school functioning (β=17.12 [-0.87, 35.10]) scores. Children's movement behaviours were not associated with their physical and emotional well-being, or relationship with family scores. The isotemporal substitution analyses suggest that increasing time spent in physical activity and/or sleep at the expense of inactivity may benefit children's HRQoL. Our findings suggest that sleep and physical activity may be associated with better HRQoL, with the inverse for inactivity. However, the relationship between children's movement behaviours and HRQoL is complex and warrants further research. Singapore National Research Foundation, Singapore Institute for Clinical Sciences, Agency for Science, Technology and Research.

Health-related Quality of Life of Patients With Diabetes Mellitus Measured With the Bahasa Indonesia Version of EQ-5D in Primary Care Settings in Indonesia.

Diabetes mellitus (DM) is a serious public health issue that places a heavy financial, social, and health-related burden on individuals, families, and healthcare systems. Self-reported health-related quality of life (HRQoL) is extensively used for monitoring the general population's health conditions and measuring the effectiveness of interventions. Therefore, this study investigated HRQoL and associated factors among patients with type 2 DM at a primary healthcare center in Indonesia. A cross-sectional study was conducted in Klaten District, Central Java, Indonesia, from May 2019 to July 2019. In total, 260 patients with DM registered with National Health Insurance were interviewed. HRQoL was measured with the EuroQol Group's validated Bahasa Indonesia version of the EuroQoL 5-Dimension 5-Level (EQ-5D-5L) with the Indonesian value set. Multivariate regression models were used to identify factors influencing HRQoL. Data from 24 patients were excluded due to incomplete information. Most participants were men (60.6%), were aged above 50 years (91.5%), had less than a senior high school education (75.0%), and were unemployed (85.6%). The most frequent health problems were reported for the pain/discomfort dimension (64.0%) followed by anxiety (28.4%), mobility (17.8%), usual activities (10.6%), and self-care (6.8%). The average EuroQoL 5-Dimension (EQ-5D) index score was 0.86 (95% confidence interval [CI], 0.83 to 0.88). In the multivariate ordinal regression model, a higher education level (coefficient, 0.08; 95% CI, 0.02 to 0.14) was a significant predictor of the EQ-5D-5L utility score. Patients with diabetes had poorer EQ-5D-5L utility values than the general population. DM patients experienced pain/discomfort and anxiety. There was a substantial positive relationship between education level and HRQoL.