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Psychosocial Burden
Background
Children with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of treatment and disease contribute to HRQOL, pinpointing directions for improving care and enhancing outcomes.
Methods
Parent proxies of youth enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry shared patient-reported outcomes about their child’s HRQOL and experiences of disease and treatment burden (pain interference, morning stiffness, history of medication side effects and methotrexate intolerance). Contributions of these measures to HRQOL were estimated using generalized estimating equations accounting for site and patient demographics.
Results
Patients (N = 180) were 81.1% white non-Hispanic and 76.7% female. Mean age was 11.8 (SD = 3.6) years, mean disease duration was 7.7 years (SD = 3.5). Mean Total Pediatric Quality of Life was 76.7 (SD = 18.2). Mean pain interference score was 50.1 (SD = 11.1). Nearly one-in-five (17.8%) youth experienced >15 min of morning stiffness on a typical day, more than one quarter (26.7%) reported ≥1 serious medication side effect and among 90 methotrexate users, 42.2% met criteria for methotrexate intolerance. Measures of disease and treatment burden were independently negatively associated with HRQOL (all p-values <0.01). Negative associations among measures of treatment burden and HRQOL were attenuated after controlling for disease burden and clinical characteristics but remained significant.
Conclusions
For youth with JIA, HRQOL is multidimensional, reflecting disease as well as treatment factors. Adverse treatment experiences undermine HRQOL even after accounting for disease symptoms and disease activity and should be assessed routinely to improve wellbeing.
The purpose of this study was to determine the relationships among preconception stressful life events (PSLEs), women's alcohol and tobacco use before and during pregnancy, and infant birthweight. Data were from the Early Childhood Longitudinal Study-Birth Cohort (n = 9,350). Data were collected in 2001. Exposure to PSLEs was defined by indications of death of a parent, spouse, or previous live born child; divorce or marital separation; or fertility problems prior to conception. Survey data determined alcohol and tobacco usage during the 3 months prior to and in the final 3 months of pregnancy. We used staged multivariable logistic regression to estimate the effects of women's substance use and PSLEs on the risk of having a very low (<1,500 g, VLBW) or low (1,500-2,499 g, LBW) birthweight infant, adjusting for confounders. Women who experienced any PSLE were more likely to give birth to VLBW infants (adjusted odds ratio [AOR] = 1.35; 95 % confidence interval [CI] = 1.10-1.66) than women who did not experience any PSLE. Compared to women who never smoked, women who smoked prior to conception (AOR = 1.31; 95 % CI = 1.04-1.66) or during their last trimester (AOR = 1.98; 95 % CI = 1.56-2.52) were more likely to give birth to LBW infants. PSLEs and women's tobacco use before and during pregnancy are independent risk factors for having a lower birthweight baby. Interventions to improve birth outcomes may need to address women's health and health behaviors in the preconception period.
BACKGROUND: The life course perspective suggests a pathway may exist among maternal exposure to stressful life events prior to conception (PSLEs), infant birth weight and subsequent offspring health, whereby PSLEs are part of a 'chains-of-risk' that set children on a certain health pathway. No prior study has examined the link between PSLEs and offspring health in a nationally representative sample of US mothers and their children. We used longitudinal, nationally representative data to evaluate the relation between maternal exposure to PSLEs and subsequent measures of infant and toddler health, taking both maternal and obstetric characteristics into account. METHODS: We examined 6900 mother-child dyads participating in 2 waves of the nationally representative Early Childhood Longitudinal Study-Birth Cohort (n=6900). Infant and toddler health outcomes assessed at 9 and 24 months included overall health status, special healthcare needs and severe health conditions. Adjusted path analyses examined associations between PSLEs, birth weight and child health outcomes. RESULTS: In adjusted analyses, PSLEs increased the risk for very low birth weight (VLBW, <1500 g), which, in turn, predicted poor health at both 9 and 24 months of age. Path analyses demonstrated that PSLEs had small indirect effects on children's subsequent health that operated through VLBW. CONCLUSIONS: Our analysis suggests a chains-of-risk model in which women's exposure to PSLEs increases the risk for giving birth to a VLBW infant, which, in turn, adversely affects infant and toddler health. Addressing women's preconception health may have important downstream benefits for their children, although more research is needed to replicate these findings.
OBJECTIVES: We sought to determine whether the effects of preconception stressful life events (PSLEs) on birth weight differed by neighborhood disadvantage. METHODS: We drew our data from the Early Childhood Longitudinal Study, Birth Cohort (2001-2002; n = 9300). We created a neighborhood disadvantage index (NDI) using county-level data from the 2000 US Census. We grouped the NDI into tertiles that represented advantaged, middle advantaged, and disadvantaged neighborhoods. Stratified multinomial logistic regressions estimated the effect of PSLEs on birth weight, controlling for confounders. RESULTS: We found a gradient in the relationship between women's exposure to PSLEs and having a very low birth weight (VLBW) infant by NDI tertile; the association was strongest in disadvantaged neighborhoods (adjusted odd ratio [AOR] = 1.62; 95% confidence interval [CI] = 1.04, 2.53), followed by middle (AOR = 1.39; 95% CI = 1.00, 1.93) and advantaged (AOR = 1.29; 95% CI = 0.91, 1.82) neighborhoods. We observed a similar gradient for women with chronic conditions and among minority mothers. CONCLUSIONS: Women who experienced PSLEs, who had chronic conditions, or were racial/ethnic minorities had the greatest risk of having VLBW infants if they lived in disadvantaged neighborhoods; this suggests exacerbation of risk within disadvantaged environments. Interventions to reduce rates of VLBW should focus on reducing the deleterious effects of stressors and on improving neighborhood conditions.
The purpose of the study was to understand the association between stressful life events prior to conception (PSLEs) and women's alcohol and tobacco use prior to and during pregnancy, and the continuation of such use through pregnancy. Data were from the Early Childhood Longitudinal Study-Birth Cohort (n = 9,350). Data were collected in 2001. Exposure to PSLEs was defined by indications of death of a parent, spouse, or previous live born child, divorce or marital separation, or fertility problems prior to conception. Survey data determined alcohol and tobacco usage during the 3 months prior to and in the final 3 months of pregnancy. Weighted regressions estimated the effect of PSLEs on alcohol and tobacco use at each time point and on the continuation of use, adjusting for confounders. Experiencing any PSLE increased the odds of tobacco use prior to (adjusted odds ratio [AOR] 1.52, 95 % confidence interval (CI) 1.23-1.87) and during pregnancy (AOR 1.57, 95 % CI 1.19-2.07). Women exposed to PSLEs smoked nearly five additional packs of cigarettes in the 3 months prior to pregnancy (97 cigarettes, p = 0.011) and consumed 0.31 additional alcoholic drinks during the last 3 months of pregnancy than unexposed women. PSLEs are associated with tobacco use before pregnancy and alcohol and tobacco use during pregnancy. Alcohol and tobacco screening and cessation services should be implemented prior to and during pregnancy, especially for women who have experienced PSLEs.
This study takes a lifecourse approach to understanding the factors contributing to delivery methods in the US by identifying preconception and pregnancy-related determinants of medically indicated and non-medically indicated cesarean section (C-section) deliveries. Data are from the Early Childhood Longitudinal Study-Birth Cohort, a nationally representative, population-based survey of women delivering a live baby in 2001 (n = 9,350). Three delivery methods were examined: (1) vaginal delivery (reference); (2) medically indicated C-section; and (3) non-medically indicated C-sections. Using multinomial logistic regression, we examined the role of sociodemographics, health, healthcare, stressful life events, pregnancy complications, and history of C-section on the odds of medically indicated and non-medically indicated C-sections, compared to vaginal delivery. 74.2 % of women had a vaginal delivery, 11.6 % had a non-medically indicated C-section, and 14.2 % had a medically indicated C-section. Multivariable analyses revealed that prior C-section was the strongest predictor of both medically indicated and non-medically indicated C-sections. However, we found salient differences between the risk factors for indicated and non-indicated C-sections. Surgical deliveries continue to occur at a high rate in the US despite evidence that they increase the risk for morbidity and mortality among women and their children. Reducing the number of non-medically indicated C-sections is warranted to lower the short- and long-term risks for deleterious health outcomes for women and their babies across the lifecourse. Healthcare providers should address the risk factors for medically indicated C-sections to optimize low-risk delivery methods and improve the survival, health, and well-being of children and their mothers.