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Benefits of Medical Home Care Reaching Beyond Chronically Ill Teens: Exploring Parent Health-Related Quality of Life.

ABSTRACT: BACKGROUND:Caring for teens with special health care needs places physical and mental health burdens on parents, which can be exacerbated by the stresses of transitions to independence. Medical homes can improve teen transitions to greater self-management and reduce health care-related time and financial burdens for families. We examined the association between parent-reported teen medical home status and caregiver health-related quality of life (HRQOL). METHODS:The study sample included parents or caregivers of teens with special health care needs aged 15 to 18 recruited from a pediatric Medicaid accountable care organization who participated in a survey (response rate,?40.5%). The primary outcome was parent HRQOL scores (0-100 points) measured using the Pediatric Quality of Life Inventory Family Impact Module. Medical home status was based on parent report of teen's health care meeting medical home criteria. Linear regression models were used to estimate HRQOL scores, adjusted for demographic characteristics, health literacy, and teen functional limitation. RESULTS:Among 488 parents, 27% reported their teen received care consistent with a medical home. Adjusted parent HRQOL scores were significantly higher among those whose teens had a medical home (74.40; 95% confidence interval, 71.31-77.48), relative to those whose teens did not (65.78; 95% confidence interval, 63.92-67.65). Medical home subscale analyses showed HRQOL scores had significant positive associations with family-centered care and coordinated care, but not other subscales. CONCLUSIONS:Teen medical home status was positively associated with caregiver HRQOL, suggesting that the medical home may benefit overall caregiver well-being. In particular, receiving care that was family centered and coordinated appeared to be the most beneficial.

SUBMITTER: Chavez LJ

PROVIDER: S-EPMC6078780 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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Benefits of Medical Home Care Reaching Beyond Chronically Ill Teens: Exploring Parent Health-Related Quality of Life.

Chavez Laura J LJ Grannis Connor C Dolce Millie M Chisolm Deena J DJ

Academic pediatrics 20180315 6

<h4>Background</h4>Caring for teens with special health care needs places physical and mental health burdens on parents, which can be exacerbated by the stresses of transitions to independence. Medical homes can improve teen transitions to greater self-management and reduce health care-related time and financial burdens for families. We examined the association between parent-reported teen medical home status and caregiver health-related quality of life (HRQOL).<h4>Methods</h4>The study sample i ...[more]

PMID: 29477482

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Project description:BackgroundDiscrepancy between self-reports and parent-proxy reports of adolescent health-related quality of life (HRQoL) has been repeatedly acknowledged in the literature as the proxy problem. However, little is known about the extent and direction of this discrepancy. The purpose of this study is to explore to what extent and in what direction HRQoL self-reports of adolescents with chronic conditions and those of their parents differ.MethodsA cross-sectional survey was conducted among adolescents suffering from chronic conditions and their parents. Socio-demographic and disease-related characteristics were collected and information about consequences of the chronic condition was assessed. HRQoL was measured with KIDSCREEN-10 and DISABKIDS condition generic measure (DCGM-10). Agreement was analysed through defining a threshold of agreement based on half of the standard deviation of the HRQoL score with the highest variance. Agreement occurred if the difference between adolescent and parent scores was less than or equal to half of the standard deviation. Intra-class correlation coefficients and Bland-Altman plots were also computed. The characteristics associated with direction of disagreement were statistically tested with one-way ANOVA and Chi-square tests.Results584 paired HRQoL scores were obtained. Ratings from both adolescents and parents were high, compared to European norm data. Differences between adolescents and parents were statistically significant, yet relatively small. Disagreement existed in both directions: in 24.5% (KIDSCREEN-10) and 16.8% (DCGM-10) of the cases adolescents rated their HRQoL lower than did their parent, while in 32.2% (KIDSCREEN-10) and 31.7% (DCGM-10) of the cases the opposite was true. Adolescent's age, educational level and type of education, parent's educational level, number of hospital admissions and several other disease-related factors influenced direction of disagreement.ConclusionsIn a reasonable proportion of cases the adolescent and parent agreed on the adolescent's HRQoL (43-51% of the cases) and most disagreement tended to be minor. Thus, the proxy problem may be smaller than presented in the literature and its extent may differ per population. As adolescents are expected to become partners in their own health care, it is recommended to focus on adolescents' own perceptions of HRQoL.

Project description:Gut microbiome in critically ill patients shows profound dysbiosis. The most vulnerable is the subgroup of chronically critically ill (CCI) patients - those suffering from long-term dependence on support systems in intensive care units. It is important to investigate their microbiome as a potential reservoir of opportunistic taxa causing co-infections and a morbidity factor. We explored dynamics of microbiome composition in the CCI patients by combining "shotgun" metagenomics with chromosome conformation capture (Hi-C). Stool samples were collected at 2 time points from 2 patients with severe brain injury with different outcomes within a 1-2-week interval. The metagenome-assembled genomes (MAGs) were reconstructed based on the Hi-C data using a novel hicSPAdes method (along with the bin3c method for comparison), as well as independently of the Hi-C using MetaBAT2. The resistomes of the samples were derived using a novel assembly graph-based approach. Links of bacteria to antibiotic resistance genes, plasmids and viruses were analyzed using Hi-C-based networks. The gut community structure was enriched in opportunistic microorganisms. The binning using hicSPAdes was superior to the conventional WGS-based binning as well as to the bin3c in terms of the number, completeness and contamination of the reconstructed MAGs. Using Klebsiella pneumoniae as an example, we showed how chromosome conformation capture can aid comparative genomic analysis of clinically important pathogens. Diverse associations of resistome with antimicrobial therapy from the level of assembly graphs to gene content were discovered. Analysis of Hi-C networks suggested multiple "host-plasmid" and "host-phage" links. Hi-C metagenomics is a promising technique for investigating clinical microbiome samples. It provides a community composition profile with increased details on bacterial gene content and mobile genetic elements compared to conventional metagenomics. The ability of Hi-C binning to encompass the MAG's plasmid content facilitates metagenomic evaluation of virulence and drug resistance dynamics in clinically relevant opportunistic pathogens. These findings will help to identify the targets for developing cost-effective and rapid tests for assessing microbiome-related health risks.

Dataset Information

Benefits of Medical Home Care Reaching Beyond Chronically Ill Teens: Exploring Parent Health-Related Quality of Life.

Publications

Benefits of Medical Home Care Reaching Beyond Chronically Ill Teens: Exploring Parent Health-Related Quality of Life.

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