Establishing the minimum clinically important difference of the Quality of Life in Childhood Epilepsy Questionnaire.

OBJECTIVE: To estimate the minimum clinically important difference (MCID) for the parent-reported 55-item Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) and its shortened 16-item version, QOLCE-16. METHODS: Data came from 74 children with epilepsy (CWE) (ages 4-10, mean age = 8 [SD = 1.8]) enrolled in the Making Mindfulness Matter in Epilepsy (M3-E) trial, a pilot, parallel randomized-controlled trial of a mindfulness-based intervention. Both anchor-based and distribution-based methods were used to estimate MCID values for the QOLCE-55 and QOLCE-16. For the anchor-based approach, the Patient Centered Global Ratings of Change (PCGRC) scale and linear regression analysis were used to estimate the MCID. For the distribution-based approach, .5 SD of the health-related quality of life (HRQOL) change score distribution was used to estimate the MCID. RESULTS: For the QOLCE-55, the MCID obtained using an anchor-based approach was 10 points and using a distribution-based method was 6 points. For the QOLCE-16, the MCID obtained using an anchor-based method was 13 points and using a distribution-based method was 7 points. SIGNIFICANCE: This is the first study to estimate MCID values for the QOLCE-55 and the QOLCE-16. It has been well documented that CWE are at risk of experiencing psychological, behavioral, and cognitive impairments, which can negatively impact their HRQOL. Reporting MCID values for the QOLCE-55 and QOLCE-16 is important in determining whether changes in HRQOL observed are meaningful to CWE themselves, as a key factor in shaping the nature of epilepsy care delivered.

Experiences and Stressors of Parents of Trans and Gender-Diverse Youth in Clinical Care from Trans Youth CAN!

Parents of trans and gender-diverse youth can experience challenges navigating gender-affirming (GA) care such as stigma, transphobia, and lack of support. There is little information available about stressors, worries, and positive feelings of parents as they try to support their youth accessing GA care. This article presents baseline survey data on experiences and stressors of 160 parents/caregivers in the Trans Youth CAN! cohort study, which examined medical, social, and family outcomes in youth age 16 years or younger considering puberty blockers or GA hormones. Data were collected at 10 Canadian gender clinics. Authors report on participating parents' characteristics, levels of support toward youth, stressors, worries, concerns, and positive feelings related to youth's gender. Most parent participants were White (85.1 percent), female (85.1 percent), birth or adoptive parents (96.1 percent), and reported strong support for youth's gender. Participants' concerns included their youth facing rejection (81.9 percent), generalized transphobia (74.6 percent), or encountering violence (76.4 percent). Parents also reported positive feelings about seeing their youth grow more confident. Most parental worries and stressors were situated outside the family, reflecting the systemic discrimination faced by youth and their families. Social workers could address these by developing systems-focused interventions and by further taking into account intersectional health disparities.

The relationship between quality of life and health-related quality of life in young males with Duchenne muscular dystrophy.

AIM: This study investigated the relationship between quality of life (QoL) and health-related quality of life (HRQoL) and assessed factors other than health that contribute to differences in QoL in young males with Duchenne muscular dystrophy (DMD). METHOD: In this cross-sectional study, QoL and HRQoL measures were completed by 98 parents and 85 children. The Quality of My Life (QoML) questionnaire measured QoL and HRQoL as single-items, and the Pediatric Quality of Life 4.0 Generic Core (PedsQL) questionnaire was used as a multidimensional measure of HRQoL. Simple regression was used to examine the relationship between single-item measures of HRQoL and QoL. Multivariable regression was used to investigate factors that may contribute to difference in QoL and HRQoL. RESULTS: While ratings of QoL and HRQoL were significantly correlated with one another, HRQoL only accounted for 21% and 44% of the variability in QoL by child- and parent-reports respectively. None of the factors measured contributed ratings of the child's QoL to be much higher than HRQoL. INTERPRETATION: QoL and HRQoL are related but distinct constructs as rated by children with DMD and their parents. Further research is needed to elucidate factors outside HRQoL that contribute to QoL. WHAT THIS PAPER ADDS: Quality of life (QoL) and health-related quality of life are distinct concepts rated by young males with Duchenne muscular dystrophy (DMD) and their parents. Factors outside of 'health' contribute to overall QoL in the paediatric population with DMD. This article's abstract has been translated into Spanish and Portuguese. Follow the links from the abstract to view the translations.

Global assessment of the severity of epilepsy (GASE) Scale in children: Validity, reliability, responsiveness.

OBJECTIVE: The Global Assessment of Severity of Epilepsy (GASE) Scale is a single-item, 7-point global rating scale designed for neurologist-report of overall severity of epilepsy in children. Building on previous preliminary evidence of its validity and reliability for research and clinical use, this study evaluated the GASE Scale's construct validity, reliability, and responsiveness to changes in severity of epilepsy. METHODS: Data used for the study arose from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES), a 2-year multicenter prospective cohort study (n = 374) with observations taken at baseline, and 6, 12, and 24 months after diagnosis. Construct validity and reliability were quantified using Spearman's correlation and intraclass correlation coefficient (ICC). Responsiveness was assessed using both distribution-based and anchor-based indices. RESULTS: The GASE Scale was at least moderately correlated (r ≥ 0.30) with several key clinical aspects and most strongly correlated with frequency and intensity of seizures and interference of epilepsy or drugs with daily activities (r > 0.30). Total variation in GASE Scale scores explained by seven core clinical aspects of epilepsy increased over time (R(2) = 28% at baseline to R(2) = 70% at 24 months). The GASE Scale had modest test-retest reliability (ICC range: 0.52-0.64) and was responsive to changes in clinical criteria (standardized response mean range: 0.49-0.68; probability of change range: 0.69-0.75; Guyatt's responsiveness statistic range: 0.56-0.84). The GASE Scale showed potential to discriminate "stable" and "changed" patients according to select criteria and to a composite score (area under the receiver operating characteristic [ROC] curve range: 0.50-0.67). SIGNIFICANCE: Results offer additional evidence in support of the GASE Scale's validity, reliability, as well as responsiveness to changes in severity of epilepsy in children. We conclude that the GASE Scale is a potentially useful tool for assessing the severity of epilepsy in both clinical and research settings.

The measurement properties of mentoring relationship quality scales for mentoring programs.

The measurement properties of two new scales designed to measure global and engagement mentoring relationship quality (Global Mentoring Relationship Quality Scale and Quality of Mentoring Relationship Engagement Scale) were examined among 272 mentors, 491 children, and 554 parents participating in Big Brothers Big Sisters community mentoring programs across Canada. Results demonstrated their unidimensionality, moderate convergent validity, good external validity, and weak-to-moderate reporter concordance. Longitudinal analyses demonstrated good predictive validity of mentor and parent mentoring relationship quality scales with respect to predicting mentoring relationship status.

HIV risk perception and distribution of HIV risk among African, Caribbean and other Black people in a Canadian city: mixed methods results from the BLACCH study.

BACKGROUND: African, Caribbean and other Black (ACB) people are a priority group for HIV prevention in Canada, but little is known about the epidemiology of HIV risk in this population. This paper helps fill the knowledge gap by: presenting service providers' and ACB people's perceptions about HIV risk in ACB populations; describing the distribution of HIV risk behaviours among ACB people according to markers of social status and position; and comparing results from these two analyses. METHODS: The Black, African and Caribbean Canadian Health (BLACCH) Study is a mixed methods study that used semi-structured interviews and a cross-sectional quantitative questionnaire to collect information about HIV and health from 188 ACB people in London, Ontario, Canada. Qualitative content analysis was used to identify interview themes, and weighted bivariate statistical analyses were performed on the quantitative data. Behaviours related to HIV risk were stratified by sex, poverty status, immigration experience and employment status. RESULTS: Community members perceived that they were at low risk for HIV and mainly focused on sexual risks. They called for more information about HIV in Canada and culturally appropriate HIV services. Service providers cited marital infidelity and cultural and religious attitudes about condoms as barriers to women protecting themselves. They mentioned cultural norms, beliefs about masculinity and underrepresentation of heterosexual ACB men at AIDS service organizations as barriers to men protecting themselves. There were few statistically significant differences in risk behaviours reported by men and women. Those living in poverty were more likely to abstain from sex (p = 0.006) and use condoms (p = 0.027) in the past year. Those living in Canada longer reported higher prevalences of forced sex (p < 0.001), mixing alcohol or drugs with sex (p = 0.001) and past STI diagnoses (p = 0.032). Stable employment was associated with higher prevalences of not using condoms in the past year (p = 0.005) and past STI diagnoses (p = 0.018). CONCLUSIONS: The results show that perceptions about ACB people's HIV risk differ from actual risk, and those with higher social standing might be at greater risk. Furthermore, the social determinants of health are important factors in the epidemiology of HIV among ACB people.

Examining clinically relevant levels of depressive symptoms in mothers following a diagnosis of epilepsy in their children: a prospective analysis.

OBJECTIVES: The objectives were to (1) document the risk of clinical depression in mothers in the 24 months after epilepsy diagnosis in their children, (2) determine whether the probability of risk of clinical depression changes over time, and (3) identify factors predictive of risk of clinical depression. METHODS: Data were obtained from the Health Related Quality of Life in Children with Epilepsy Study, a national prospective study of children 4-12 years old with new-onset epilepsy followed for 24 months. Risk-free survival was calculated using the life table approach. Binary sequence modeling for longitudinal data was implemented to identify risk factors. RESULTS: A total of 210 mothers were included in the analysis. Twenty-eight percent of mothers without clinically relevant levels of depressive symptoms at baseline were at risk for clinical depression by 24 months. The probability for risk of clinical depression and associated 95% confidence intervals by 6, 12, and 24 months was 0.13 (0.08, 0.18), 0.12 (0.07, 0.17), and 0.19 (0.10, 0.27), respectively. Significant predictors (p < 0.01) of risk of clinical depression during follow-up quantified using odds ratios (OR) were maternal age (OR = 0.94), number of anti-epileptic drugs child was prescribed (OR = 1.41), family functioning (OR = 0.83), family resources (OR = 0.93), and family demands (OR = 1.10). CONCLUSIONS: Risk of clinical depression in mothers after their child is diagnosed with epilepsy is common and relatively stable over time. Modifiable risk factors may present avenues for intervention to improve the mental health of mothers of children with epilepsy.

Transgender Youth Referred to Clinics for Gender-Affirming Medical Care in Canada.

BACKGROUND AND OBJECTIVES: Referrals of transgender and gender-diverse (trans) youth to medical clinics for gender-affirming care have increased. We described characteristics of trans youth in Canada at first referral visit. METHODS: Baseline clinical and survey data (2017-2019) were collected for Trans Youth CAN!, a 10-clinic prospective cohort of n = 174 pubertal and postpubertal youth <16 years with gender dysphoria, referred for hormonal suppression or hormone therapy, and 160 linked parent-participants. Measures assessed health, demographics, and visit outcome. RESULTS: Of youth, 137 were transmasculine (assigned female) and 37 transfeminine (assigned male); 69.0% were aged 14 to 15, 18.8% Indigenous, 6.6% visible minorities, 25.7% from immigrant families, and 27.1% low income. Most (66.0%) were gender-aware before age 12. Only 58.1% of transfeminine youth lived in their gender full-time versus 90.1% of transmasculine (P < .001). Although transmasculine youth were more likely than transfeminine youth to report depressive symptoms (21.2% vs 10.8%; P = .03) and anxiety (66.1% vs 33.3%; P < .001), suicidality was similarly high overall (past-year ideation: 34.5%, attempts: 16.8%). All were in school; 62.0% reported strong parental gender support, with parents the most common support persons (91.9%). Two-thirds of families reported external gender-related stressors. Youth had met with a range of providers (68.5% with a family physician). At clinic visit, 62.4% were prescribed hormonal suppression or hormone therapy, most commonly depot leuprolide acetate. CONCLUSIONS: Trans youth in Canada attending clinics for hormonal suppression or gender-affirming hormones were generally healthy but with depression, anxiety, and support needs.

Factors Associated With Health-Related Quality of Life in Children With Duchenne Muscular Dystrophy.

This study investigated clinical and family characteristics associated with health-related quality of life in children with Duchenne muscular dystrophy. Families of 176 boys with Duchenne muscular dystrophy were identified and mailed questionnaires via the Canadian Neuromuscular Disease Registry. Multiple linear regressions analyses were used to examine the relationship between clinical and family characteristics and child-self and parent-proxy reported health-related quality of life. Greater fatigue and use of wheelchairs were consistently associated with worse health-related quality of life independent of other factors. Higher household income and parent having a postsecondary degree were associated with better health-related quality of life in some of the measures. A greater clinical focus on and efforts to reduce fatigue could lead to improvement of health-related quality of life in the Duchenne muscular dystrophy population. This study also sets the ground for longitudinal studies where changes in health-related quality of life can be monitored over time.

Social and Proximate Determinants of the Frequency of Condom Use Among African, Caribbean, and Other Black People in a Canadian City: Results from the BLACCH Study.

African, Caribbean, and other Black (ACB) people are a priority group for HIV prevention in Canada, but little is known about condom use in this population. This exploratory community-based research project addresses this gap in knowledge. 125 sexually active ACB people completed a questionnaire covering condom use and social determinants of health. The data were analyzed using ordinal logistic regression and mediation analyses. 20.5 % of sexually active ACB adults used condoms consistently. Male gender, wealth, unstable immigration classes, and unsecure employment statuses were independently associated with more frequent condom use. Proximate determinants mediating these relationships included: not having a cohabiting regular partner, not disliking condoms, and having a history of unwanted sex. The proximate determinants mediated 85.7-97.6 % of the effects of the social determinants. These results link social context and proximate factors with condom use. They can be used to design evidence-informed interventions for ACB people.

Neonatal morbidity associated with late preterm and early term birth: the roles of gestational age and biological determinants of preterm birth.

BACKGROUND: The aim of this study was to elucidate the role of gestational age in determining the risk of neonatal morbidity among infants born late preterm (34-36 weeks) and early term (37-38 weeks) compared with those born full term (39-41 weeks) by examining the contribution of gestational age within the context of biological determinants of preterm birth. METHODS: This was a retrospective cohort study. The sample included singleton live births with no major congenital anomalies, delivered at 34-41 weeks of gestation to London-Middlesex (Canada) mothers in 2002-11. Data from a city-wide perinatal database were linked with discharge abstract data. Multivariable models used modified Poisson regression to directly estimate adjusted relative risks (aRRs). The roles of gestational age and biological determinants of preterm birth were further examined using mediation and moderation analyses. RESULTS: Compared with infants born full term, infants born late preterm and early term were at increased risk for neonatal intensive care unit triage/admission [late preterm aRR=6.14, 95% confidence interval (CI) 5.63, 6.71; early term aRR=1.54, 95% CI 1.41, 1.68] and neonatal respiratory morbidity (late preterm aRR=6.16, 95% CI 5.39, 7.03; early term aRR=1.46, 95% CI 1.29, 1.65). The effect of gestational age was partially explained by biological determinants of preterm birth acting through gestational age. Moreover, placental ischaemia and other hypoxia exacerbated the effect of gestational age on poor outcomes. CONCLUSIONS: Poor outcomes among infants born late preterm and early term are not only due to physiological immaturity but also to biological determinants of preterm birth acting through and with gestational age to produce poor outcomes.

Mild prematurity, proximal social processes, and development.

OBJECTIVE: To elucidate the role of gestational age in determining the risk of poor developmental outcomes among children born late preterm (34-36 weeks) and early term (37-38 weeks) versus full term (39-41 weeks) by examining the contribution of gestational age to these outcomes in the context of proximal social processes. METHODS: This was an analysis of the Canadian National Longitudinal Survey of Children and Youth. Developmental outcomes were examined at 2 to 3 (N= 15099) and 4 to 5 years (N= 12302). The sample included singletons, delivered at 34 to 41 weeks, whose respondents were their biological mothers. Multivariable modified Poisson regression was used to directly estimate adjusted relative risks (aRRs). We assessed the role of parenting by using moderation analyses. RESULTS: In unadjusted analyses, children born late preterm appeared to have greater risk for developmental delay (relative risk = 1.26; 95% confidence interval [CI], 1.01 to 1.56) versus full term. In adjusted analyses, results were nonsignificant at 2 to 3 years (late preterm aRR = 1.13; 95% CI, 0.90 to 1.42; early term aRR = 1.11; 95% CI, 0.96 to 1.27) and 4 to 5 years (late preterm aRR = 1.06; 95% CI, 0.79 to 1.43; early term aRR = 1.03; 95% CI, 0.85 to 1.25). Parenting did not modify the effect of gestational age but was a strong predictor of poor developmental outcomes. CONCLUSIONS: Our findings show that, closer to full term, social factors (not gestational age) may be the most important influences on development.