Socio-economic status and quality of life in children with chronic disease: A systematic review.

Reduced quality of life (QoL) is a known consequence of chronic disease in children, and this association may be more evident in those who are socio-economically disadvantaged. The aims of this systematic review were to assess the association between socio-economic disadvantage and QoL among children with chronic disease, and to identify the specific socio-economic factors that are most influential. MEDLINE, Embase and PsycINFO were searched to March 2015. Observational studies that reported the association between at least one measure of social disadvantage in caregivers and at least one QoL measure in children and young people (age 2-21 years) with a debilitating non-communicable childhood disease (asthma, chronic kidney disease, type 1 diabetes mellitus and epilepsy) were eligible. A total of 30 studies involving 6957 patients were included (asthma (six studies, n = 576), chronic kidney disease (four studies, n = 796), epilepsy (14 studies, n = 2121), type 1 diabetes mellitus (six studies, n = 3464)). A total of 22 (73%) studies reported a statistically significant association between at least one socio-economic determinant and QoL. Parental education, occupation, marital status, income and health insurance coverage were associated with reduced QoL in children with chronic disease. The quality of the included studies varied widely and there was a high risk of reporting bias. Children with chronic disease from lower socio-economic backgrounds experience reduced QoL compared with their wealthier counterparts. Initiatives to improve access to and usage of medical and psychological services by children and their families who are socio-economically disadvantaged may help to mitigate the disparities and improve outcomes in children with chronic illnesses.

Parental perspectives on the financial impact of caring for a child with CKD.

BACKGROUND: The economic consequences of chronic kidney disease (CKD) are severe for adult patients and their households, but the out-of-pocket expenses and economic burden of CKD and how this affects the caregivers of children with kidney disease are unclear. This study aims to describe parental perspectives on the financial impact of caring for a child with CKD. STUDY DESIGN: Face-to-face semistructured interviews. SETTING & PARTICIPANTS: Parents of children with CKD from 3 pediatric nephrology centers in Australia. ANALYTICAL APPROACH: Transcripts were analyzed thematically. RESULTS: 27 parents of 26 children participated. We identified 5 themes: loss of freedom and control (prioritizing care, limiting occupational opportunities, and appreciating socioeconomic advantage), burden of sole responsibility (inability to rely on others, lack of respite, increased separation of family roles, and self-reliance), adapting for survival (vigilant budgeting, redefining normality and expectations, rechanneling resources to basic needs, and negotiating work flexibility), instability of circumstances (depleted capacity to work, unpredictability of child's health, burden of travel-related costs, imposition of debt, and domestic upheaval), and struggle in seeking support ("falling through the cracks" and unmet information needs). LIMITATIONS: Few participants were fathers (n=5), and results may not be transferable to non-English-speaking caregivers because these participants were excluded. CONCLUSIONS: Parents focused their resources and attention on meeting the complex needs of their child. Inability to sustain employment due to focus on their child's care and both medical and nonmedical expenses were major contributors to the financial impact, with financial stress compounded by difficulties accessing government support. As a result, parents experienced profound financial and social instability and physical and psychological fatigue and exercised extreme financial vigilance. Increased access to respite and domestic support and financial and psychosocial interventions are suggested to minimize the financial impact of caring for a child with CKD, which in turn may lead to better care, quality of life, and health outcomes for children with CKD and their families.

Health and wealth in children and adolescents with chronic kidney disease (K-CAD study).

BACKGROUND: The impact of reduced kidney function in children is substantial. End-stage kidney disease (ESKD), the most severe form of chronic kidney disease (CKD), is a devastating illness associated with substantially increased mortality, impaired growth and psychosocial maladjustment in children. Understanding how to address the complex causes of mortality and morbidity in children with CKD requires explicit information about the risk factors that lead to adverse outcomes. In addition to biological influences, the socioeconomic circumstances of caregivers may play a significant role in the health and well-being of children with CKD. METHODS/DESIGN: A prospective cohort study (n=380 children and n=380 caregivers) will be conducted to determine the prevalence of economic hardship among caregivers of children with CKD. All participants will be followed biennially over a period of 5 years to determine the association between the changing socioeconomic status of the caregivers and the health and overall well-being of school-aged children with CKD. Face to face, semi-structured interviews with the caregivers (n=45) will also be conducted to understand their perspectives on the economic, financial and psychosocial impact of CKD and how this affects the health outcomes of their child with CKD. The primary outcomes of the study are the effects of the socioeconomic status of the caregivers and self-reported health status of the children. Secondary outcomes included the prevalence of economic hardship and the distribution of wealth among the caregivers of children with CKD. DISCUSSION: Findings from this study presents not only a snapshot of the current economic and social situation of the caregivers of children and adolescents with CKD but will also provide definitive evidence of determining whether a link between socioeconomic status of caregivers and outcomes of children with CKD exists.

Neurophysiological markers of attention distinguish bipolar disorder and unipolar depression.

BACKGROUND: Attentional deficits are common in both symptomatic and symptom-remitted patients with bipolar disorder (BP) and major depressive disorder (MDD). However, whether the level of neurocognitive impairment in attentional processing is different between these two disorders, or not, is still unclear. Thus, we investigated the P300 event-related potential component as a biomarker of cognitive dysfunction to differentiate BP and MDD. METHODS: Twenty-three age and gender matched BP, 20 MDD and 23 healthy controls (HC) were part of a discovery cohort to identify neurophysiological differences between groups and build a classification model of these disorders. The replication of this model was then tested in an independent second cohort of 17 BP, 19 MDD and 19 HC. All participants were symptom-remitted for at least two weeks. We compared neural responses to target stimuli during an auditory oddball task, computing peak amplitude and latency of the P300 component extracted from the midline centro-parietal electrode. RESULTS: BP had significantly smaller P300 amplitudes compared to both MDD and HC, whereas there were no differences between MDD and HC. The differences between groups were replicated in the second cohort, however the accuracy level of the classification model was only 53.5%. LIMITATIONS: Small sample sizes may have led to low accuracy levels of the classification model. CONCLUSION: Specific neural mechanisms of attention and context updating seem not to recover with symptom remission in BP. These findings contribute to the detection of a potential electrophysiological marker for BP, which may allow its differentiation from unipolar major depressive disorder.

Adolescent development in family-based treatment for anorexia nervosa: Patients' and parents' narratives.

Maudsley Family-Based Treatment (FBT) is currently the best supported treatment for adolescents with anorexia nervosa (AN); however, little is known about whether it achieves its stated aim in the final phases of promoting the patient's return to an expected developmental trajectory. This study aimed to explore the perspectives of young people and their parents regarding the developmental impact of AN, and the role of FBT in addressing developmental challenges. Young people ( N = 12) who ceased FBT a minimum 1 year prior, and their parents ( N = 12), completed face-to-face semi-structured interviews, and data were analysed using a narrative inquiry method. All the participants described AN as highly disruptive to adolescent development, with phase one of FBT accentuating this experience. In phases two and three, FBT helped facilitate adolescent development in three key ways: Supporting return to adolescent pursuits, facilitating autonomy and providing freedom to develop post-FBT. This study offers preliminary insights into the variety of developmental challenges and needs experienced by families, as well as approaches clinicians can take to supporting development in phases two and three of FBT.