To assess health-related quality of life (HRQOL) and global quality of life (QOL) in children and adolescents with Fontan physiology and identify key predictors influencing these outcomes.
...Cross-sectional analysis of 73 children and adolescents enrolled in the Australia and New Zealand Fontan Registry (ANZFR) aged 6-17 years, at least 12 months post-Fontan operation. Assessments included the Pediatric Quality of Life Inventory 4.0 (PedsQL) for HRQOL and a developmentally-tailored visual analogue scale (0-10) for global QOL, along with validated sociodemographic, clinical, psychological, relational, and parental measures. Clinical data were provided by the ANZFR.
Participants (mean age: 11.5±2.6 years, 62% male) reported lower overall HRQOL (p<0.001), and lower scores across all HRQOL domains (all p<0.0001), compared with normative data. Median global QOL score was 7.0 (IQR 2.2), with most participants (79%) rating their global QOL ≥6. Anxiety and depressive symptoms requiring clinical assessment were reported by 21% and 26% of participants, respectively. Age, sex, and perceived seriousness of CHD explained 15% of the variation in HRQOL scores, while depressive symptoms and treatment-related anxiety explained an additional 37% (final model: 52% of variance explained). For global QOL, sociodemographic and clinical factors explained 13% of the variance in scores, while depressive symptoms explained a further 25% (final model: 38% of variance explained). Parental factors were not associated with child QOL outcomes.
Children and adolescents with Fontan physiology experience lower HRQOL than community-based norms, despite reporting fair overall QOL. Psychological factors predominantly influenced QOL outcomes, indicating strategies to bolster psychological health could improve QOL in this population.
Abstract
Studies on the impact of the COVID-19 pandemic on autistic children’s psychosocial outcomes have shown mixed results. In the current study we aimed to gain a better insight into the effect ...of the COVID-19 pandemic by comparing psychosocial outcomes collected pre-pandemic with data collected during the pandemic. We used the Strengths and Difficulties Questionnaire (SDQ) to examine change over time in psychosocial outcomes of autistic children from pre-pandemic (T0) to lockdown I (T1) and lockdown II (T2) in the Netherlands. We expected a deterioration in psychosocial outcomes. There were 224 participants in T0 and T1, of which 141 also participated in T2. The results showed a surprising improvement in psychosocial outcomes from T0 to T1. Special education and female gender were associated with increased difficulties over time, while higher age was associated with decreased difficulties. At the subdomain level we found that emotional problems remained stable, while hyperactivity, conduct problems, and peer problems decreased, and prosocial behavior increased. Attending special education predicted increased peer problems over time, while higher age predicted both decreased conduct problems and increased prosocial behavior over time. The COVID-19 pandemic may have temporarily improved the fit between the psychosocial needs and the environment for children with autism in the Netherlands.
Medulloblastoma is the most common malignant childhood brain tumor, although long-term risks for chronic neurologic health and psychosocial functioning in aging adult survivors are incompletely ...characterized.
The Childhood Cancer Survivor Study (CCSS) includes 380 five-year survivors of medulloblastoma/primitive neuroectodermal tumor (PNET; median age at follow-up: 30 y, interquartile range 24-36) and sibling comparison (n = 4031). Cumulative incidence of neurologic health conditions was reported. Cox regression models provided hazard ratios (HRs) and 95% CIs. Cross-sectional outcomes were assessed using generalized linear models.
Compared with siblings, survivors were at increased risk of late-onset hearing loss (HR: 36.0, 95% CI: 23.6-54.9), stroke (HR: 33.9, 95% CI: 17.8-64.7), seizure (HR: 12.8, 95% CI: 9.0-18.1), poor balance (HR: 10.4, 95% CI: 6.7-15.9), tinnitus (HR: 4.8, 95% CI: 3.5-6.8), and cataracts (HR: 31.8, 95% CI: 16.7-60.5). Temporal/frontal lobe radiotherapy of 50 Gy or more increased risk for hearing loss (HR: 1.9, 95% CI: 1.1-1.3), seizure (HR: 2.1, 95% CI: 1.1-3.9), stroke (HR: 3.5, 95% CI: 1.3-9.1), and tinnitus (HR: 2.0, 95% CI: 1.0-3.9). Survivors were less likely than siblings to earn a college degree (relative risk RR: 0.49, 95% CI: 0.39-0.60), marry (RR: 0.35, 95% CI: 0.29-0.42), and live independently (RR: 0.58, 95% CI: 0.52-0.66).
Adult survivors of childhood medulloblastoma/PNET demonstrate pronounced risk for hearing impairment, stroke, lower educational attainment, and social independence. Interventions to support survivors should be a high priority.
Objective: This study is a longitudinal evaluation of the effectiveness of gender-affirming hormones for improving psychological well-being and decreasing suicidality among transgender youth referred ...to a transgender health specialty clinic at a large Midwest children's hospital. Method: Forty-seven youth (13.73-19.04 years; M = 16.59, SD = 1.19) who received gender-affirming hormones were assessed at least 2 times: before the start of treatment and at least 3 months after treatment. Results: After gender-affirming hormones, a significant increase in levels of general well-being and a significant decrease in levels of suicidality were observed. Conclusion: These findings suggest that gender-affirming hormones are a valuable medical intervention with promising psychosocial outcomes for transgender youth.
Implications for Impact Statement
This study suggests that gender-affirming hormones are a helpful medical intervention for transgender youth. Gender-affirming hormones were found to be associated with decreases in suicidality and improvements in general well-being.
Existing literature provides a complicated picture of the relationship between digital media use and psychological outcomes. Both correlational and some experimental studies suggest that social media ...use specifically can be associated with diminished psychological functioning in adolescents and young adults. However, these effect sizes are not large, and must be considered in light of studies that suggest some positive outcomes associated with some uses of digital media, and a range of moderators of the identified associations. Although a growing body of evidence suggests that
digital stress
may be an important intervening factor between digital media use and psychosocial outcomes, this literature is complicated by multiple nomenclatures for similar or identical constructs. Our review of the literature suggests four potentially related components of digital stress, including
av
ailability stress
,
approval anxiety
,
fear of missing out
, and
communication overload
. This conceptualization is consistent with recent published frameworks for understanding digital media’s influence on peer relationships. Clinicians working with adolescents and young adults are encouraged to assess digital media use in the context of clients’ overall psychological and social functioning, and in consideration of clients’ specific uses of media. Future research is needed to examine the associations among components of digital stress and clinical outcomes, and to provide valid measures to assess digital stress in research and clinical settings.
To determine the long-term risk of new adverse psychosocial outcomes among adolescents diagnosed with a concussion compared with those not diagnosed.
A retrospective, population-based cohort study ...was conducted. Adolescents (10-18 years) with a physician-diagnosed concussion between 2000 and 2005 were matched on neighborhood and age with 5 controls without concussion from the general population. New-onset mental health disorders, medication use, social, and justice outcomes were extracted using datasets linked to the population data repository. Adolescents were followed for 11-16 years. Adjusted hazard ratios (95% CIs) were estimated.
In total, 2082 adolescents with a concussion were matched to 10 510 without. Adolescents with a concussion had an increased risk of any mental health disorder (HR 1.34; 95% CI 1.25-1.45), mood disorder (HR 1.30; 95% 1.18-1.43), psychosis (HR 1.43; 95% CI 1.18-1.74), substance abuse disorder (HR 1.67; 95% 1.31-2.14), and receiving a psychotropic prescription (HR 1.31; 95% CI 1.20-1.42). Female adolescents had an increased risk of ADHD following concussion (HR 1.89; 95% CI 1.17-3.05). Adolescents with a concussion had an increased risk of being accused (HR 1.22; 95% CI 1.11-1.34), victim (HR 1.29; 95% CI 1.11-1.48), or witness (HR 1.16; 95% CI 1.01-1.32) of a crime, or contact with Child and Family Services (HR 1.33; 95% CI 1.10-1.62). There was no association between concussion and attempting or completing suicide, receiving housing support, or collecting income support.
Concussion was associated with an increased risk for multiple adverse psychosocial outcomes. Future work should focus on early identification of those at risk of these outcomes to help optimize longitudinal medical care and support.
•Adolescence is a peak period for the incidence of psychosocial problems.•Help-seeking behavior within social networks provides an important adaptive advantage.•Both informal help-seeking behavior ...and social support may have potential benefits.
The roles of help-seeking from informal sources and social support in their association with psychosocial outcomes during adolescence remain unclear. Yet, help-seeking behavior within informal and supportive social contexts brings young people into contact with a range of important resources with the potential to reduce the likelihood for poor psychosocial outcomes. This study presents a systematic review and meta-analysis exploring both help-seeking behavior from informal sources and social support in their association with psychosocial outcomes in adolescence. The meta-analysis examines 79 effect sizes from 8 studies, analyzing data on informal help-seeking from 5285 youth aged 12–19 years. For social support, the meta-analysis examines 378 effect sizes from 51 studies, analyzing data from 196,247 youth aged 12–19 years. The results of a series of random effects models showed significant associations between help-seeking from informal sources and each of externalizing behavior (OR 0.44, 95% CI 0.34, 0.56, p < .0001), educational outcomes (OR 2.24, 95% CI 1.84, 2.73, p < .0001) and other help-seeking behavior (e.g. help-seeking for peers; OR 2.43, 95% CI 1.97, 3.00, p < .0001). Results showed social support was significantly associated with internalizing behavior (OR 0.57, 95% CI 0.48, 0.68, p < .0001) and substance use (OR 0.74, 95% CI 0.65, 0.84, p < .0001). Social support also showed significant associations with bullying perpetration and victimization with effect sizes ranging from odds ratios of 0.55 to 0.68. Moderator analyses showed variation in results based on methodological-level (e.g. study design) and sample-level (e.g. gender) variables. Although it is difficult to draw overarching conclusions regarding help-seeking from informal sources, given the small number of included studies, findings of the meta-analysis showed that both help-seeking from informal sources and social support may have potential benefits in reducing the likelihood of poor psychosocial outcomes among adolescents. Implications for research and practice are discussed.
Poor psychological well-being is both prevalent among South Africans living with HIV and has been associated with poor HIV clinical outcomes. However, the relationship between disclosure and ...psychological well-being remains unclear. This analysis sought to examine the relationship between two disclosure-related variables, disclosure status and reaction received, and psychosocial well-being among a sample of young adults living with HIV (YALWH) in urban South Africa.
This was a secondary analysis using observational data from Standing Tall, a randomized controlled trial that recruited 100 participants ages 18-24 who tested positive for HIV after initially presenting to two well-established mobile clinics for HIV testing. Interviews investigating primary and secondary outcomes of interest were done at baseline and 6 months following recruitment.
About half (51%) of participants disclosed their HIV status within 6 months after recruitment. Simple linear regression analyses revealed that disclosure of HIV status within 6 months after study enrollment predicted significantly lower levels of disclosure concerns and internalized stigma (p < 0.05). Reactions to disclosure were not significantly associated with any of the measures of psychosocial well-being considered in this analysis (p > 0.05).
The results suggest that the act of disclosure among newly diagnosed YALWH may be associated with reductions in internalized stigma. In addition, the finding that the act of disclosure may be a more important determinant of psychosocial well-being than the reaction to disclosure has important implications for interventions designed to promote disclosure and psychosocial well-being in YALWH.
Australia has been at the forefront of implementing immigration policies that aim to limit the flow of asylum seekers over recent decades. Two controversial polices have been the use of immigration ...detention for unauthorized arrivals and the issuing of temporary protection visas (TPVs) for refugees who arrived without valid visas. We conducted a longitudinal survey over 2 years commencing in 2003 of 104 consecutive refugees from Iran and Afghanistan attending a state-wide early intervention program in New South Wales. The sample included those released from immigration detention on TPVs (
n = 47) and others granted permanent protection visas prior to entering Australia (PPVs,
n = 57
). Psychological symptoms were assessed at baseline and follow-up by the Harvard Trauma Questionnaire (HTQ), the Hopkins symptom checklist-25 (HSCL), the GHQ-30 and the Penn State Worry Questionnaires (PSWQ). English language competency, daily living difficulties and coping-related activities were also assessed. The results indicated that TPVs had higher baseline scores than PPVs on the HTQ PTSD scale, the HSCL scales, and the GHQ. ANCOVA models adjusting for baseline symptom scores indicated an increase in anxiety, depression and overall distress for TPVs whereas PPVs showed improvement over time. PTSD remained high at follow-up for TPVs and low amongst PPVs with no significant change over time. The TPVs showed a significant increase in worry at follow-up. TPVs showed no improvement in their English language skills and became increasingly socially withdrawn whereas PPVs exhibited substantial language improvements and became more socially engaged. TPV holders also reported persistently higher levels of distress in relation to a wide range of post-migration living difficulties whereas PPVs reported few problems in meeting these resettlement challenges. The data suggest a pattern of growing mental distress, ongoing resettlement difficulties, social isolation, and difficulty in the acculturation process amongst refugees subject to restrictive immigration policies.
COVID-19 has had disproportionate contagion and fatality in Black, Latino, and Native American communities and among the poor in the United States. Toxic stress resulting from racial and social ...inequities have been magnified during the pandemic, with implications for poor physical and mental health and socioeconomic outcomes. It is imperative that our country focus and invest in addressing health inequities and work across sectors to build self-efficacy and long-term capacity within communities and systems of care serving the most disenfranchised, now and in the aftermath of the COVID-19 epidemic.
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