Childhood cancer survivors (CCS) have a high risk of medical late effects following cancer therapy. Psychosocial late effects are less often recognized. Many CCS do not receive long‐term follow‐up ...(LTFU) care, and those who do are rarely screened for psychosocial late effects. An interdisciplinary team conducted a systematic review of qualitative and quantitative studies to assess social, educational, vocational, psychological, and behavioral outcomes along with factors related to receipt of LTFU care. We propose that psychosocial screening be considered a standard of care in long‐term follow‐up care and that education be provided to promote the use LTFU care starting early in the treatment trajectory.
Children, adolescents, and young adults living with life-threatening serious pediatric illness (SPI) face considerable physical and emotional tolls via their disease conditions, treatment demands, ...and sequelae. To guide clinical interventions and future research for young people with SPI, Barker and colleagues conducted a meta-analysis to estimate the prevalence of anxiety and depression in children and young people with a variety of SPI, including cancer, cystic fibrosis, HIV, thalassemia, neurological conditions, and chronic kidney disease. The authors found that the prevalence of anxiety and depression is higher among youth with SPI compared with the general youth population. Specifically, the pooled prevalence was 19.1% (range, 3.6%-58.3%) for anxiety and 14.3% (range, 0.0%-50.0%) for depression, which are higher than rates cited from the general population of young people in the United States (anxiety prevalence, 3%; depression prevalence, 2.1%) and United Kingdom (anxiety prevalence, 7.2%; depression prevalence, 8.1%). Of note, none of the studies included in the review reported incidence, thus limiting understanding of the timing of onset of anxiety and depression relative to the timing of diagnosis of the SPI.
This Guide to Statistics and Methods proposes guidance for clinical trial recruitment to improve diverse population representation and overall generalizability.
PURPOSE The purpose of this study was to compare adolescent and young adult (AYA) pediatric cancer survivors and peers without a history of serious illness on psychological distress, health-related ...quality of life (HRQOL), health beliefs; examine age at diagnosis and cancer treatment intensity on these outcomes; and examine relationships between number of health problems and the outcomes. PATIENTS AND METHODS AYA cancer survivors (n = 167) and controls (n = 170), recruited during visits to a cancer survivorship clinic and primary care, completed self-report questionnaires of distress, health problems, and health beliefs. For survivors, providers rated treatment intensity and health problems. Results There were no statistically significant differences between survivors and controls in psychological distress or HRQOL. Cancer survivors had less positive health beliefs. Survivors diagnosed as adolescents had significantly greater psychological distress and fewer positive health beliefs than those diagnosed earlier. Survivors with the highest level of treatment intensity had greater anxiety and fewer positive health beliefs than those with less intense treatments. Provider report of current health problems related to survivors' beliefs and mental HRQOL only, whereas patient report of health problems correlated significantly with most psychosocial outcomes and beliefs. CONCLUSION AYA cancer survivors did not differ from peers in psychological adjustment but did endorse less adaptive health beliefs. Survivors diagnosed during adolescence and who had more intensive cancer treatments evidenced poorer psychosocial outcomes. Beliefs about health may be identified and targeted for intervention to improve quality of life, particularly when patient perceptions of current health problems are considered.
Abstract
Objectives
A meta-analysis examined family functioning and medical adherence in children and adolescents with chronic health conditions. Family functioning was evaluated at the level of the ...family unit, as well as parent–child interactions.
Methods
We conducted literature searches using PubMed, PsycINFO, SCOPUS, Web of Science, and Cochrane. After reviewing 764 articles, 62 studies met eligibility criteria. Pearson’s r correlations were the effect size of interest. We conducted both omnibus and domain-specific (e.g., family conflict, cohesion) meta-analyses. Meta-regressions examined whether relevant covariates related to the magnitude of the effect.
Results
The omnibus meta-analysis showed that family functioning was significantly related to medical adherence across a variety of pediatric chronic health conditions. Lower family conflict, greater family cohesion, greater family flexibility, more positive communication, and better family problem-solving were each associated with better adherence. There were no significant differences in the magnitude of the omnibus effect based on child age, measurement features (subjective vs. objective or bioassay adherence; family unit vs. parent–child interactions), or study quality.
Conclusions
Consistent with social–ecological frameworks, findings supported links between family functioning and medical adherence. This study highlights several limitations of the extant research, including absence of a guiding theoretical framework and several methodological weaknesses. We offer clinical and research recommendations for enhancing scientific understanding and promotion of adherence within the family context.
Transition of young adults with cystic fibrosis (CF) from pediatric to adult medical care is an important priority, because many patients are living well into their fourth decade, and by 2010 more ...than half of all people living with CF will be older than 18 years. Transition to adulthood, a developmental process of skill-building in self-management supported by the health system, is important for the successful transfer to adult CF care. The US Cystic Fibrosis Foundation has been proactive in preparing for increasing numbers of young adults in need of specialized adult-oriented care by creating specialized clinical fellowships for physician providers and mandating establishment of adult CF programs. Despite these initiatives, how to best facilitate transition and to define and measure successful outcomes after transfer to adult care remains unclear. Many adults with CF continue to receive care in the pediatric setting, whereas others transfer before being developmentally prepared. In this state-of-the-art review we provide context for the scope of the challenges associated with designing and evaluating health care transition for adolescents and young adults with CF and implications for all youth with special health care needs.
We performed RNA-seq and high-resolution mass spectrometry on 128 blood samples from COVID-19-positive and COVID-19-negative patients with diverse disease severities and outcomes. Quantified ...transcripts, proteins, metabolites, and lipids were associated with clinical outcomes in a curated relational database, uniquely enabling systems analysis and cross-ome correlations to molecules and patient prognoses. We mapped 219 molecular features with high significance to COVID-19 status and severity, many of which were involved in complement activation, dysregulated lipid transport, and neutrophil activation. We identified sets of covarying molecules, e.g., protein gelsolin and metabolite citrate or plasmalogens and apolipoproteins, offering pathophysiological insights and therapeutic suggestions. The observed dysregulation of platelet function, blood coagulation, acute phase response, and endotheliopathy further illuminated the unique COVID-19 phenotype. We present a web-based tool (covid-omics.app) enabling interactive exploration of our compendium and illustrate its utility through a machine learning approach for prediction of COVID-19 severity.
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•We surveyed biomolecules in 102 COVID-19 and 26 non-COVID-19 patient blood samples•We found 219 biomolecules strongly associated with COVID-19 status and severity•We observed pronounced dysregulation of lipid transport and neutrophil degranulation•Our resource of measurements and patient data is located at https://covid-omics.app
Leukocyte mRNA expression and plasma protein, metabolite, and lipid levels were measured in 102 COVID-19 and 26 non-COVID-19 patient samples. 219 diverse biomolecules were strongly associated with COVID-19 status and severity and pointed to dysregulation of processes related to lipid transport, blood coagulation, acute phase response, endotheliopathy, and neutrophil degranulation in this disease.
Review measures of readiness to transition to adult-oriented care for youth with chronic physical health conditions.
Identified measures via online searches and reference lists and reviewed methods ...of development, theoretical underpinnings, characteristics, and psychometrics. Measures were classified according to American Psychological Association Division 54 Evidence-Based Assessment (EBA) Task Force criteria. Strengths and weaknesses of reviewed measures were described.
56 measures were identified, of which 10 met inclusion criteria for this review. 6 were disease specific and 4 were generic. Some psychometric properties were reported for each; none reported predictive validity for transition outcomes. According to EBA criteria, the 10 measures met criteria for "promising" assessment.
Measurement development in transition readiness is still an underdeveloped area. Measures require further testing and new measures are needed. Recommendations include testing measures with larger and diverse samples, ground measures in theory, test psychometrics, and involve multiple stakeholders in measure development.
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