Health-related Quality Of Life In Youth Research Articles

Psychometric validation of the Chinese versions of EQ-5D-Y-3L and the experimental EQ-TIPS in children and adolescents with COVID-19.

Respiratory infectious diseases like COVID-19 profoundly impacts the health of children and adolescents, but validated instruments to measure their impacts on health-related quality of life (HRQoL) are lacking. The EQ-5D-Y-3L, widely used for youth HRQoL, now features a Chinese value set. The experimental EQ-TIPS addresses HRQoL assessment for toddlers and infants. This study tested the psychometric properties of both instruments in paediatric COVID-19 patients, and compared the performance of self-complete and proxy EQ-5D-Y-3L. This longitudinal study recruited 861 COVID-19 patients aged 0-18 years and their parental caregivers, with 311 dyads completing the follow-up. Digital administration included the EQ-TIPS, the EQ-5D-Y-3L, and Overall Health Assessment (OHA). Controls comprised 231 healthy children. Analysis encompassed known-group validity, child-parent agreement, and responsiveness to change in disease severity and OHA. COVID-19 children exhibited lower HRQoL than non-infected peers. The EQ-TIPS and the EQ-5D-Y-3L distinguished groups by disease presence, severity and symptoms, showing moderate to good known-group validity (ESs: 0.45-1.39 for EQ-TIPS, 0.44-1.91 for self-complete EQ-5D-Y-3L, and 0.32-1.67 for proxy EQ-5D-Y-3L). Child-parent agreement was moderate to good for EQ-5D-Y-3L (ICC: 0.653-0.823; Gwet's AC1: 0.470-0.738), and responsiveness was good for both EQ-TIPS Level Sum Score (LSS) (ESs: 1.21-1.39) and EQ-5D-Y-3L index scores (ESs: 1.00-1.16). This study demonstrates the reliability, validity, and responsiveness of the experimental EQ-TIPS and the EQ-5D-Y-3L in paediatric COVID-19 patients. It is the first evidence of the EQ-TIPS' responsiveness, supporting its use in assessing the impact of COVID-19 on paediatric HRQoL.

The relationship between cumulative risk and health-related quality of life in youth with sickle cell disease: Moderating effects of secondary control engagement coping.

Youth with sickle cell disease (SCD) often experience low health-related quality of life (HRQOL). Engagement in resilience-promoting processes, such as secondary control engagement (SCE) coping, or adapting to stressors, may be linked to contextual risk factors (e.g., poverty status). This study aims to illuminate relationships between a cumulative risk index (CRI), SCE coping, and HRQOL in youth with SCD and test whether SCE coping moderates the relationship between CRI and HRQOL. Participants in this cross-sectional study included 63 youth ages 8-18 with SCD. Participants completed measures to assess SCE coping use (Responses to Stress Questionnaire) and HRQOL (PedsQL SCD Module). Six variables from the electronic medical record were compiled in a CRI. Correlational and regression analyses examined relationships between primary variables and moderating effects of SCE coping, respectively. Model results show that SCE coping and CRI explain variation in HRQOL (p=.001), and a significant interaction exists between SCE and CRI (β=-.29, p=.02), with a stronger inverse relationship between CRI and HRQOL for higher SCE values. This suggests that lower CRI is associated with greater HRQOL for those with higher SCE coping relative to lower SCE coping. SCE coping may selectively benefit children with SCD experiencing lower cumulative risk, warranting encouragement of this strategy in clinical settings. Findings do not support SCE coping benefits for youth with higher risk, suggesting that the strategy may not be useful when risk-related stressors are especially pervasive; alternative protective factors should be identified for this risk group.

Quality of Life in Youth Soccer Players After Mild Traumatic Brain Injury.

Pediatric mild traumatic brain injuries (mTBIs) represent an evolving field of interest in youth athletics. Although most players recover within 4 weeks, some have symptoms that last longer. Little is known about youth health-related quality of life (HRQoL) after mTBI. To characterize youth HRQoL after soccer-related mTBI and to identify predictors of individual differences in HRQoL recovery. Prospective cohort study. Youth soccer. Soccer players, aged 8 to 17 years, who sustained an mTBI (n = 23) or orthopaedic injury (OI, n = 24) or remained uninjured (n = 23) during a single season. We assessed HRQoL via the Pediatric Quality of Life Inventory, version 4.0, and postconcussive symptoms via the Health and Behavior Index. Serial assessments occurred at 24 to 48 hours, 7 days, 30 days, and 90 days postinjury via telephone interview. At 7 days postinjury, the mTBI and OI groups had poorer total HRQoL (F2,67 = 11.35, P < .001) than the uninjured control group. At 7 days, the mTBI group had the poorest psychosocial HRQoL, whereas the OI group had the poorest physical HRQoL. Differences between the mTBI and uninjured control groups resolved by 30 days. Within the mTBI group, players with significant postconcussive symptoms at 7 days had poorer total (F1,21 = 23.071, P ≤ .001; F1,21 = 5.798, P = .028), psychosocial (F1,21 = 16.488, P = < .001; F1,21 = 5.050, P = .039), and physical (F1,21 = 21.671, P = < .001; F1,21 = 5.119, P = .038) HRQoL at 7 and 30 days, respectively, than players with minimal symptoms; these differences resolved by 90 days. As a group, youth soccer players who sustained mTBI had transient impairments in HRQoL that resolved by 30 days. A subset of players with significant postconcussive symptoms at 7 days postinjury had poorer HRQoL for at least 30 days postinjury than those whose postconcussive symptoms had resolved within a week of injury. This suggests ongoing recovery in this subset at 30 days and the potential utility of HRQoL as a measure of recovery.

Impact of Sport Engagement and Social Support on the Health-Related Quality of Life of Youth Athletes With Physical Disabilities

Health-related quality of life (HRQOL) is a multidimensional concept focusing on the impact of health status on quality of life. The purpose of this study was to examine if sport engagement and sport-specific social support predicted HRQOL among adolescents with physical disabilities. Sixty-eight participants completed surveys assessing sport engagement, sport-specific social support, and HRQOL. Participants had moderate to high perceptions of sport engagement, social support, and HRQOL supporting the affirmation model of disability. Based on a canonical correlation, esteem, information, and tangible social support and sport engagement—confidence—were the strongest predictor variables of the sport engagement/social support variant, which was linked to the HRQOL variant predicted by emotional, social, and school functioning. The findings support the importance of social support and confidence in the sport context for the HRQOL of youth with physical disabilities.

The youth mental health crisis: Quasi-experimental evidence on the role of school closures.

During the COVID-19 pandemic, the youth mental health crisis has reached unprecedented levels. To which extent school closures, one of the most heavily debated pandemic measures, have contributed to or even caused this crisis is largely unknown. We seek to narrow this blind spot, by combining quasi-experimental variation in school closure and reopening strategies across the German federal states at the onset of the pandemic with nationwide, population-based survey data on youth mental health and high-frequency data from the largest crisis helpline. We show that prolonged school closures led to a substantial deterioration in youth health-related quality of life, precipitating early signs of mental health problems. The effects were most severe among boys, younger adolescents, and families with limited living space. We further provide evidence that family problems are a major issue that adolescents were struggling with when denied access to school. Overall, school closures largely explain the deterioration of youth mental health over the first pandemic wave.

The influence of child pain catastrophizing and parent behavior on health-related quality of life in pediatric sickle cell disease.

Literature suggests that a child's appraisal of pain and parent responses to pain are critical in predicting health-related outcomes. In youth with sickle cell disease (SCD), few investigations have examined child pain catastrophizing, and even fewer have examined the role that parents play in responding to SCD pain within the family context. The purpose of the current study was to examine the relationship between pain catastrophizing, parent response to child SCD pain, and health-related quality of life (HRQoL). The sample (N=100) included youth with SCD (ages 8-18) and their parent. Parents completed a demographic questionnaire and the Adult Responses to Child Pain Symptoms; youth completed the Pain Catastrophizing Scale and Pediatric Quality of Life Inventory-SCD Module. Findings indicated that pain catastrophizing, parent minimization, and parent encouragement/monitoring significantly predicted HRQoL. Minimizing and encouragement/monitoring parent responses moderated the relationship between pain catastrophizing and HRQoL, such that parent minimizing weakened the relationship and parent encouragement/monitoring strengthened the relationship. Paralleling pediatric chronic pain literature, findings suggest that pain catastrophizing predicts HRQoL in youth with SCD. However, findings from moderation analyses diverge from the chronic pain literature; data suggest that encouragement/monitoring responses strengthen the negative relationship between child pain catastrophizing and HRQoL. Child pain catastrophizing and parent response to SCD pain may be appropriate targets for clinical intervention to improve HRQoL. Future studies should strive to better understand parent responses to SCD pain.

The Association Between Caregiver Coping and Youth Clinic Attendance and Health-related Quality of Life in Pediatric Sickle Cell Disease.

Caregivers of youth with sickle cell disease (SCD) influence the youth disease management and psychosocial outcomes. Effective caregiver coping is important for improving disease management and outcomes since caregivers often report high disease-related parenting stress. This study characterizes caregiver coping and examines its relation to youth clinic nonattendance and health-related quality of life (HRQOL). Participants were 63 youth with SCD and their caregivers. Caregivers completed the Responses to Stress Questionnaire-SCD module to assess primary control engagement (PCE; attempts to change stressors or reactions to stress), secondary control engagement (SCE; strategies to adapt to stress), and disengagement (avoidance) coping. Youth with SCD completed the Pediatric Quality of Life Inventory-SCD module. Medical records were reviewed for the hematology appointment nonattendance rates. Coping factors were significantly different ( F [1.837, 113.924]=86.071, P <0.001); caregivers reported more PCE ( M =2.75, SD =0.66) and SCE ( M =2.78, SD =0.66) than disengagement ( M =1.75, SD =0.54) coping. Responses to short-answer questions corroborated this pattern. Greater caregiver PCE coping was associated with lower youth nonattendance (β=-0.28, P =0.050), and greater caregiver SCE coping was related to higher youth HRQOL (β=0.28, P =0.045). Caregiver coping is related to improved clinic attendance and HRQOL in pediatric SCD. Providers should assess caregiver coping styles and consider encouraging engagement coping.

The bidirectional longitudinal association between health-related quality of life and academic performance in adolescents: DADOS study

PurposeAlthough previous evidence has suggested a relationship between health-related quality of life (HRQoL) and academic performance, the directionality of this association is understudied and remains to be clarified. Thus, the primary objective of this study was to explore the bidirectional association between HRQoL and academic performance in adolescents between two timepoints with a 24-month interval. A secondary aim was to analyze whether this association varies between boys and girls.MethodsThis is a bidirectional longitudinal analysis with 257 adolescents (13.9 ± 0.3 years at baseline) from the DADOS study. HRQoL was measured using the KIDSCREEN-10 questionnaire. Academic performance was assessed through academic grades and the Spanish version of the Science Research Associates Test of Educational Ability.ResultsCross-lagged analyses revealed that HRQoL at baseline was not associated with academic performance 24 months later, while all the academic grades and the overall score of academic abilities at baseline were positively associated with HRQoL at follow-up in adolescents. Results of the stratified analyses by sex were largely similar. Specifically, in girls, math, language, physical education, and grade point average at baseline were positively associated with HRQoL 24 months later, while in boys, all the academic grades indicators (except physical education), numeric ability, and the overall score of academic abilities at baseline were positively associated with HRQoL at follow-up.ConclusionThese findings suggest that academic performance in early adolescence may predict HRQoL 24 months later. Health and education professionals could benefit from collaborating to achieve both improved academic performance and HRQoL in youth.

Healthcare utilization and the quality of life of children and adolescents with sickle cell disease.

Youth diagnosed with sickle cell disease (SCD) are at increased risk of poor health-related quality of life (HRQOL) due to the complexities associated with this disease. The literature notes that predictors such as pain and poor mental health are associated with increased healthcare access; however, the connection between healthcare use and their overall well-being has been understudied. This study investigates whether healthcare utilization predicts the HRQOL in youth with SCD. Patients completed the Pediatric Quality of Life (PedsQL) 3.0 SCD module, whereas the researcher conducted a retrospective chart review to gather patient characteristics such as emergency room (ER) and hospitalization occurrences over the past 12 months. The study consisted of 150 pediatric patients with SCD, ages 8-17 years old, and their parents. Patients with≥4 ER visits and hospitalizations reported worse HRQOL scores than their respective counterparts. Additionally, a higher frequency of ER visits (P=0.05) and hospitalizations (P=0.005) predicted lower HRQOL scores. Age (P=0.04) also emerged as a significant predictor for both regression models, as increased healthcare access among older patients with SCD was associated with poorer HRQOL. This study found that as youth with SCD require ER treatment and/or hospital admission, they are at increased risk for lower HRQOL, specifically as they get older. Findings suggest that attention should be paid to patients who require more frequent healthcare intervention. Improvement in outpatient care of pediatric patients with SCD may help to mitigate ER and inpatient use.

Passive Coping Associations With Self-Esteem and Health-Related Quality of Life in Youth With Inflammatory Bowel Disease.

Pediatric patients with inflammatory bowel disease (IBD) may experience chronic stress related to disease symptoms and treatment, with negative consequences to their health-related quality of life (HRQOL). Lower HRQOL among pediatric patients with IBD has been associated with worse disease-related symptoms and psychological functioning, while higher HRQOL has been associated with more adaptive coping with disease symptoms and treatment. In addition, patients’ self-esteem may impact the selection and use of coping strategies through global cognitions about their abilities and perceived competence. The current study seeks to extend existing research on HRQOL in youth with IBD by examining cross-sectional associations among self-esteem and passive coping strategies. Youth ages 9–18 with IBD (n = 147) rated their HRQOL using a disease-specific measure, typical strategies used to cope with pain or GI symptoms, and their general self-esteem. Mediation analyses were performed using regression-based techniques and bootstrapping. Results indicated that greater self-esteem was positively associated with HRQOL but negatively associated with passive coping. Controlling for disease activity, age, and gender, significant indirect effects were found in the relation between self-esteem and HRQOL through passive coping. Multiple mediation analyses using the three passive coping subscales found that self-esteem was indirectly associated with HRQOL through its effects specifically on catastrophizing as a passive coping strategy. Results suggest that pediatric patients’ general self-esteem can impact their HRQOL through passive coping and specifically, maladaptive cognitions (e.g., catastrophizing). Interventions aimed at addressing both self-esteem and catastrophizing as a passive coping strategy may offer promise for improving HRQOL in youth with IBD.

Health-related quality of life in youth with type 1 diabetes: Associations with multiple comorbidities and mental health conditions.

This cross-sectional study examined the associations of comorbid conditions on health-related quality of life (HRQOL) in 601 youth with type 1 diabetes. We evaluated associations between number of comorbid conditions (0, 1, ≥2) and particular comorbid conditions and youth HRQOL by self-report and parent proxy-report. Youth with type 1 diabetes, aged 5-18years, and their parents completed the PedsQL 4.0 Generic Core Scales self-report and parent proxy-report, respectively; they also reported youths' comorbid medical and mental health conditions. Separate linear regression models tested the relationship between number of comorbid conditions and specific comorbid conditions with youth-reported and parent proxy-reported HRQOL. Youth with ≥2 comorbid conditions had significantly lower HRQOL by both self- and parent proxy-reports compared with youth with 0 or 1 comorbid condition (youth self-report: 0: 85±12, 1: 85±13, 2+: 78±16, p=<0.0001; parent proxy-report: 0: 83±12, 1: 81±13, 2+: 74±15, p=<0.0001). Amongst the comorbid conditions, only a mental health comorbidity was associated with lower HRQOL. For youth and parent proxy-reports, both the number of comorbidities (≥2) and the presence of a mental health comorbidity were significantly associated with lower HRQOL. Health-related quality of life seems to be preserved in youth with type 1 diabetes unless confronted by multiple comorbidities as reported by youth and their parents. Our findings highlight the importance of tracking the presence of multiple comorbid conditions, possibly by reviewing problem and medication lists in the medical record, as well as screening for and addressing mental health conditions in routine diabetes care.

Health-related quality of life in youth with abdominal pain: An examination of optimism and pain self-efficacy

ObjectivesAbdominal pain adversely impacts children with functional gastrointestinal disorders (FGIDs) or organic gastrointestinal disorders (OGIDs); findings are inconsistent regarding diagnosis and health-related quality of life (HRQoL). This study utilizes a positive psychology framework to understand the experience of youth with abdominal pain (i.e., do positive psychological factors, such as optimism and pain self-efficacy, relate to higher HRQoL?). Consistent with a protective factor model of resilience, in which personal assets may serve as buffers between risk factors and negative outcomes, optimism and pain self-efficacy were examined as they relate to HRQoL in youth with abdominal pain. Specifically, exploratory moderational analyses examined a) if optimism and pain self-efficacy moderate the relation between pain and HRQoL, and b) whether diagnostic status moderated the relation between optimism/pain self-efficacy and HRQoL. MethodsIn a cross-sectional, observational study, youth (n = 98; Mage = 13, SD = 3) experiencing abdominal pain related to FGIDs or OGIDs and one of their parents participated. Measures included pain intensity, optimism, pain self-efficacy, and HRQoL. Analyses controlled for diagnosis, age, and gender. ResultsHigher pain and age related to lower HRQoL. Higher levels of optimism and pain self-efficacy associated with HRQoL beyond demographics. Optimism and pain self-efficacy did not moderate the relation between pain and HRQoL. Diagnostic status did not moderate the relation between optimism or pain self-efficacy and HRQoL. DiscussionOur results suggest positive relations between positive psychological factors (optimism, pain self-efficacy) and HRQoL in youth with abdominal pain. Such factors could be further examined in intervention studies.

Temperament and Health-Related Quality of Life in Newly Diagnosed Pediatric Inflammatory Bowel Disease.

Health-related quality of life (HRQOL) is typically examined from a deficit standpoint, meaning that little is known about factors associated with higher HRQOL in pediatric illness samples. The aim of the current study was to investigate demographic, disease, and temperamental factors associated with child and parent-report of HRQOL in youth newly diagnosed with inflammatory bowel disease (IBD). Participants included 52 youth ages 8-17 diagnosed with IBD and their caregivers who each completed ratings of the child's HRQOL. Parents rated their child's emotional reactivity, conceptualized as a temperamental risk factor, and adaptability, conceptualized as a temperamental protective factor. Disease symptoms were rated by youth, and physician global assessment of disease activity was obtained. HRQOL was rated lower by children and their parents as self-reported disease symptoms and parent-rated emotional reactivity increased. Conversely, total HRQOL was higher for children with higher parent-ratings of adaptability. In multiple regression analyses, higher levels of adaptability along with male sex and lower child-reported disease symptoms were associated with higher child and parent-reported HRQOL. Higher HRQOL at time of diagnosis in pediatric IBD is associated with greater adaptability when accounting for variability due to child sex and disease symptoms. Consideration of temperament, including emotional reactivity and adaptability, may offer insight into patients' typical ways of responding when stressed and provide preliminary information about factors related to post-diagnosis HRQOL. Attention should be given to both protective and risk factors to inform future intervention development, including strengths-based approaches.

Correlates of health-related quality of life in youth with psychogenic non-epileptic seizures

BackgroundFew studies have examined factors associated with health-related quality of life (HRQoL) in youth with psychogenic non-epileptic seizures (PNES). In adults, internalizing symptoms such as depression have been shown to be more closely associated with HRQoL than seizure frequency, however, this has not been studied in samples of youth. Investigations into these areas are needed in order to enhance our understanding of the impact of this condition on children and adolescents and inform future clinical intervention. MethodsThe current study includes 37 youth and one of their parents who attended a clinic visit for treatment of PNES. Children and parents completed measures of psychological functioning, and medical data were extracted from patient charts. ResultsParent-reported anxiety (B=-0.45, p = 0.05) and depression (B=-0.60, p = 0.01) were related to parent-report of HRQoL; self-report of depression was related to self-reported HRQoL (B=-0.90, p < 0.001). Seizure frequency, somatic complaints, and social problems were not related to HRQoL in this sample. ConclusionsInternalizing symptoms, not seizure frequency, are associated with poorer overall functioning in youth with PNES. Interventions focused on improving anxiety and depression in addition to seizure cessation may contribute to improved HRQoL in youth with PNES more so than those focused on seizure cessation alone.

Cognitive functioning, patient health communication, and worry mediate pain predictive effects on health-related quality of life in youth with sickle cell disease.

The objective was to investigate the serial mediating effects of perceived cognitive functioning, patient health communication, and disease-specific worry in the relationship between pain and overall generic health-related quality of life (HRQOL) in youth with sickle cell disease (SCD) from the patient perspective. The pain, cognitive functioning, communication and worry scales from the Pediatric Quality of Life Inventory (PedsQL) Sickle Cell Disease Module and the PedsQL Multidimensional Fatigue Scale, and the PedsQL 4.0 Generic Core Scales were completed in a multisite national study by 233 youth with SCD of ages 5-18. Hierarchical multiple regression and serial multiple mediator model analyses were conducted to test the mediating effects of perceived cognitive functioning, health communication, and disease-specific worry as intervening variables in the association between the pain predictor variable and overall generic HRQOL. Pain predictive effects on overall generic HRQOL were serially mediated by cognitive functioning, health communication, and disease-specific worry. In predictive analytics models utilizing hierarchical multiple regression analyses with age and gender demographic covariates, pain, cognitive functioning, health communication, and worry accounted for 65% of the variance in patient-reported overall generic HRQOL (P<.001), representing a large effect size. Perceived cognitive functioning, patient health communication, and disease-specific worry explain in part the mechanism of pain predictive effects on overall generic HRQOL in youth with SCD. Identifying SCD-specific pain, perceived cognitive functioning, health communication, and disease-specific worry as predictor variables of overall generic HRQOL from the patient perspective may inform clinical interventions and future patient-centered clinical research.

Self and parent-proxy rated health-related quality of life (HRQoL) in youth with obesity: are parents good surrogates?

Consideration of health-related quality of life (HRQoL) and wellbeing outcomes is important to guide healthcare services for youth with obesity, yet youth perspectives may differ from their parents. This study compared youth and parental HRQoL reports and evaluated levels of concordance across HRQoL domains and as a function of youth age, youth gender and parent informant (mother and father). 376 youths with obesity, recruited from community (N = 223) and hospital settings (N = 153), and their parents (N = 190 mothers; N = 91 fathers), completed the PedsQL. Parental and youth agreement across subgroup dyads (mother; father; child gender; child age) were evaluated using Wilcoxon signed-rank test, intra-correlations coefficients (ICCs) and Bland-Altman plots. Compared to norms, HRQoL levels (youth self-report and parental proxy reports) were lower in all domains. Both mother and fathers' HRQoL reports were significantly lower than youths, most notably in physical HRQoL. Youth-parent concordance ranged from poor to moderate (ICC = 0.230-0.618), with lowest agreement for Physical HRQOL. Mothers were better proxies with ICCs being significant in all domains. Youth-father ICCs were significant only for Social (ICC = 0.428) and School (ICC = 0.303) domains. Girl-mother agreement was significant across all domains, while girl-father agreement was significant only in the Social domain (ICC = 0.653). Both mothers and fathers were poor raters for boys, and younger youths (aged ≤ 12), with non-significant ICCs in most HRQoL domains. Parents are poor surrogates for youth HRQoL. Clinicians should be cognizant that parents are not necessarily accurate proxies for youths, and exercise caution when interpreting parent-proxy scores.

Exploring the impact of paediatric localized scleroderma on health-related quality of life: focus groups with youth and caregivers.

Paediatric localized scleroderma (LS) can negatively impact health-related quality of life (HRQoL) by causing skin fibrosis, abnormal limb development, disfigurement, and side-effects from immunosuppressive treatment. Studies to date have rarely included qualitative data gathered directly from paediatric patients with LS. To assess the impact of LS on HRQoL among affected youth and their caregivers using qualitative description. Youth with all subtypes of LS and their caregivers were purposively sampled to participate in age-appropriate focus groups (younger children, early adolescents, adolescents). Each group started with a drawing exercise followed by in-depth discussion of topics including skin symptoms (e.g. itch, pain, tightness), functional impairment, physical appearance, family and peer relationships, and treatment burden. Focus groups were transcribed verbatim and co-coded, with adjudication of differentially applied codes. The study findings were triangulated via comparison with adult reports and published literature. Eleven youth aged 9-16 years and 16 caregivers participated in three focus groups each. Major identified areas of impact included uncomfortable skin symptoms, physical functioning limitations, extracutaneous manifestations, body image, bullying and teasing, unwanted questioning from others, and treatment side-effects and burden. This is the first qualitative study of HRQoL in LS to include all major LS subtypes. We identified domains of HRQoL impacted by LS, some of which replicate earlier findings and some of which were novel. As impact also changed with developmental stage, our findings support the need for ongoing, formal evaluation of HRQoL in children and adolescents with LS. What is already known about this topic? Paediatric localized scleroderma (LS) negatively impacts health-related quality of life (HRQoL) via skin fibrosis, musculoskeletal and other extracutaneous manifestations from the disease process, and side-effects of systemic immunosuppression. The full impact of LS and its treatment on HRQoL is incompletely understood, with only one published qualitative study of youth with LS, which was limited to facial involvement. There are no qualitative studies of HRQoL in other LS subtypes to date. What does this study add? This is the first qualitative evaluation of HRQoL in youth with LS inclusive of all disease subtypes. Our study confirms that LS affects HRQoL across multiple distinct domains, including uncomfortable skin sensations, impacts on body image, bullying and teasing from peers, unwanted intrusive questioning, physical limitations, extracutaneous manifestations and high treatment burden. These results indicate the need for ongoing clinical assessment of paediatric patients in these domains. What are the clinical implications of the work? These results support the need to care for patients with LS holistically by synthesizing cutaneous, musculoskeletal and extracutaneous disease assessments with multidimensional evaluation of psychosocial impact and adverse effects of treatments. The development of an LS-specific HRQoL measure would advance such efforts.

Health-Related Quality of Life among Adolescents as a Function of Victimization, other Adversities, and Strengths

PurposeMost children are exposed to violence (e.g., peer, family, or community violence), which makes children's exposure to violence one of our most urgent social problems. The objective of this project was to examine health-related quality of life (HRQOL) in a vulnerable community sample and identify promising psychological and social protective factors to promote HRQOL in youth. Design and methodsThe sample was 440 youth ages 10 to 21 (average age 16.38, SD = 3.04), recruited from youth-serving organizations. Participants completed a survey on HRQOL, victimization, other adversities, and a range of 16 psychological and social strengths. ResultsAlmost 9 in 10 (89.3%) youth reported at least one victimization during their lifetime, and impaired HRQOL was common, with more than half reporting some health impairment in the month prior to the survey. Although all psychological and social strengths were positively correlated with HRQOL at the bivariate level, hierarchical regression indicated that a sense of purpose and recovering positive affect uniquely contributed to better HRQOL, after controlling for victimization, other adversities, poverty, age, and gender (total R2 = 0.21). Strengths accounted for more variance in HRQOL than did adversities. ConclusionsIn this highly victimized sample of youth, many strengths were associated with improved HRQOL for youth, with sense of purpose and recovering positive affect showing the most promise for future prevention and intervention. Practical implicationsPrograms aimed at reducing the negative impact of childhood exposure to violence may increase their impact by developing key strengths versus solely focusing on alleviating symptoms.

Evaluating Health-Related Quality of Life and School Attendance in a Multidisciplinary School Program for Youth with Significant Medical Needs.

Many youth with significant medical needs have difficulty attending traditional schools due to academic, physical, and psychosocial challenges. To meet the needs of these youth and prepare them for a successful transition to a traditional school, a multidisciplinary school program (MSP) provides support in these three domains. The aims of this program evaluation are to describe the operation of the novel MSP, characterize participants, and determine the impact of participation as related to school attendance and health-related quality of life (HRQoL). Attendance in the MSP was significantly higher than school attendance estimates provided by caregivers prior to participation in the program. Youth reported significant improvement in physical functioning and total HRQoL. Caregivers reported significant improvement in academic functioning and total HRQoL of youth. The MSP represents a unique educational model for youth with significant medical issues that also provides physical and psychosocial support. Initial findings highlight the potential positive impact of this model for this population of youth.

HABIT efficacy and sustainability trial, a multi-center randomized controlled trial to improve hydroxyurea adherence in youth with sickle cell disease: a study protocol

BackgroundHydroxyurea (HU) is recommended as standard practice for youth with sickle cell disease (SCD). Yet, despite its efficacy, HU adherence in adolescents and young adults is often poor. Poor medication adherence increases disease burden, healthcare cost and widens health disparities. Adolescence is a critical time to improve adherence through improved chronic disease self-management. This study aims to test the efficacy of an intervention delivered to youth/parent dyads by community health workers (CHWs), augmented by tailored text messages on HU adherence (primary outcome). Secondary outcomes are intervention sustainability, youth health-related quality of life, self-management responsibility concordance, acute hospital use and self-reported disease symptoms.MethodsHydroxyurea Adherence for Personal Best in Sickle Cell Disease, “HABIT,” is a 12 month multi-center randomized controlled trial. One hundred four youth, 10 to 18 years of age prescribed HU who meet eligibility criteria, enrolled with their parent as dyads, will be randomized 1:1 to either the HABIT intervention or to usual clinical care plus education handouts. All subjects will complete clinic visits at months 0, 2, 4, 6 (efficacy component), 9 and 12 (sustainability component) for assessment of HbF biomarker, other hematologic parameters, and to complete questionnaires. In addition, dyads assigned to the HABIT intervention will work with CHWs to identify a daily habit (e.g., brushing teeth) on which to build a HU adherence habit. Tailored daily text message reminders to support the habit will be developed by the dyad in collaboration with the CHWs and sent to parent and youth. At the 6 month visit, the intervention will end and the sustainability portion of the trial will begin. All data analyses will be based on intention to treat with all randomized subjects included in the analyses.DiscussionPrior retrospective studies demonstrate that a majority of adolescents are poorly adherent to HU. If efficacious, the HABIT intervention has the potential to improve the lives of youth with SCD.Trial registrationClinicaltrials.gov NCT03462511. Registered March 6, 2018, last updated July 26, 2019.