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BackgroundThe Internet has revolutionized the way in which many Americans search for health care information. Unfortunately, being able to use the Internet for this purpose is predicated on having access to the Internet and being able to understand and comprehend online health information. This is especially important for parents of children with special health care needs who are forced to make many medical decisions throughout the lives of their children. Yet, no information is available about this vulnerable group. ObjectiveFor parents of children with special health care needs we sought to (1) describe their Internet access and use, (2) determine which child and household factors were associated with Internet use, (3) describe eHealth literacy of Internet users, and (4) determine which child and household factors were associated with greater eHealth literacy. MethodsThis was a cross-sectional telephone survey of 2371 parents whose children with special health care needs were enrolled in Florida’s Medicaid and State Children’s Health Insurance Plan (SCHIP) programs (4072 parents were approached). To be enrolled in the program, families must have incomes that are less than or equal to 200% of the federal poverty level. The eHealth Literacy Scale (eHEALS) was used to measure eHealth literacy. Descriptive and multivariate analyses were conducted to address the study objectives. ResultsThe survey response rate was 58.2%. Participating parents were mainly female (2154/2371, 91%), white non-Hispanic (915/2371, 39%), English speaking (1827/2371, 77%), high school graduates (721/2371, 30%), married (1252/2371, 53%), and living in a two-parent household (1212/2371, 51%). Additionally, 82% of parents (1945/2371) in the sample reported that they used the Internet, and 49% of those parents used it daily (1158/2371). Almost three-quarters of Internet users had access to the Internet at home while about one-half had access at work. Parents who were African American, non-English speaking, older, and not college graduates were less likely to use the Internet than their referent groups (P < .001). About 74% of Internet users (1448/1945) reported that they knew how to find health information for their children. However, only about one-half (1030/1945) reported that they can tell high quality from low quality resources online or that they feel confident in using information accessed online to make health decisions. Multivariate regression results consistently showed that being a non-English speaker, having less than a high school education, and being older were all significantly associated with lower eHealth literacy (all P < .001). ConclusionLow-income parents of children with special health care needs have access to and use the Internet as a source of information about their children's health. However, some parents are unable to distinguish between high and low quality information and are not confident in using the Internet. This information is timely because as the pressure to use the Internet to empower consumers and exchange information increases, issues related to access and disparities must be better understood.

The Patient-Centered Medical Home (PCMH) is a model of care that has been promoted as a way to transform a broken primary care system in the US. However, in order to convince more practices to make the transformation and to properly reimburse practices who are PCMHs, valid and reliable data are needed. Data that capture patient experiences in a PCMH is valuable, but which instrument should be used remains unclear. Our study aims to compare the validity and reliability of two national PCMH instruments. Telephone surveys were conducted with children who receive care from 20 pediatric practices across Florida (n = 990). All of the children are eligible for Medicaid or the Children's Health Insurance Program. Analyses were conducted to compare the Consumer Assessment of Health Plan Survey-Patient-Centered Medical Home (CAHPS-PCMH) and the National Survey of Children with Special Health Care Needs (NS-CSHCN) medical home domain. Respondents were mainly White non-Hispanic, female, under 35 years old, and from a two-parent household. The NS-CSHCN outperformed the CAHPS-PCMH in regard to scale reliability (Cronbach's alpha coefficients all [greater than or equal to] 0.81 vs. 0.56-0.85, respectively). In regard to item-domain convergence and discriminant validity the CAHPS-PCMH fared better than the NS-CSHCN (range of convergence 0.66-0.93 vs. 0.32-1.00). The CAHPS-PCMH did not correspond to the scale structure in construct validity testing. Neither instrument performed well in the knowngroups validity tests. No clear best instrument was determined. Further revision and calibration may be needed to accurately assess patient experiences in the PCMH. Keywords Medical home * Pediatrics * CHIPRA * Survey * Medicaid * CHIP, Introduction An increasing number of state and federal agencies, professional organizations, health plans, and other health care entities are endorsing and encouraging the adoption of the Patient-Centered Medical Home (PCMH) [...]

In 2006, Florida began a pilot program under a federal Medicaid waiver to reform its Medicaid program in Broward and Duval counties. The Children's Medical Services Network, a subcontracted health care delivery system for Florida's children with special health care needs (CSHCN) enrolled in public insurance programs, participated in Medicaid reform through an Integrated Care System (ICS) for its enrollees. The ICS constitutes a significant departure from the subcontracted fee-for-service system used to deliver care to CSHCN in the non-reform counties, and limited information exists about its impact. The purpose of this study was to assess the effects of the ICS on Medicaid utilization among CSHCN in Broward and Duval. Administrative data from 3,947 CSHCN in Broward and Duval, and two control counties, enrolled in Florida's Medicaid program between 2006 and 2008 were used for analyses. Fixed effects negative binomial models were used to estimate the impact of the ICS on inpatient, outpatient, and emergency department utilization. Results show the number of outpatient visits decreased by 9 % in Broward and 16 % in Duval. The number of inpatient stays decreased in Duval by 35 %. Emergency room utilization increased slightly in Broward, although the estimate was not significant. Results suggest that managed care under the ICS has impacted utilization, most significantly for inpatient care. The ICS presents a viable model of managed care for CSHCN that could result in cost savings. Results should be interpreted with care because the full effects of the ICS implementation may take more time to materialize., Author(s): Mircea I. Marcu [sup.1] , Caprice A. Knapp [sup.1] , Vanessa L. Madden [sup.1] , Hua Wang [sup.1] , Meggen Kaufmann [sup.1] , Phyllis Sloyer [sup.2] Author Affiliations: (Aff1) [...]

Background. Evidence suggests that advance directives may improve end-of-life care among seriously ill patients, but improving completion rates remains a challenge. Objective. This study tested the influence of increasing the number of options for completing an advance directive among seriously ill patients. Methodology. Outpatients (N = 316) receiving hemodialysis across 15 dialysis centers in the Philadelphia region between July 2014 and July 2015 were randomized to receive either the option to complete a brief advance directive form or expanded options including a brief, expanded, or comprehensive form. Patients in both groups could decline to complete an advance directive or take their selected version home. The primary outcome was a returned, completed advance directive. Secondary outcomes included whether patients wanted to complete an advance directive, decision satisfaction, quality of life at 3 months, and patient factors associated with advance directive completion. Results. Although offering more advance directive options was not significantly associated with increased rates of completion (13.1% in the standard group v. 12.2% in the expanded group, P = 0.80), it did significantly increase the proportion of patients who wanted to complete an advance directive and took one home (71.9% in standard v. 85.3% in expanded, P = 0.004). There was no difference in satisfaction (P = 0.65) or change in quality of life between groups (P = 0.63). A higher baseline quality of life was independently associated with advance directive completion (P = 0.006). Conclusions and Relevance. These results suggest that although an expanded choice set may initially nudge patients toward completing advance directives without restricting choice, increasing actual completion requires additional interventions that overcome downstream barriers. [ABSTRACT FROM AUTHOR]

Background: Pragmatic trials comparing standard-of-care interventions may improve the quality of care for future patients, but raise ethical questions about limitations on decisional autonomy. We sought to understand how patients and physicians view and respond to these questions in the contexts of pragmatic trials and of usual clinical care.Methods: We conducted scenario-based, semistructured interviews with 32 patients with end-stage renal disease (ESRD) receiving maintenance hemodialysis in outpatient dialysis units and with 24 nephrologists. Each participant was presented with two hypothetical scenarios in which a protocolized approach to hemodialysis treatment time was adopted for the entire dialysis unit as part of a clinical trial or a new clinical practice.Results: A modified grounded theory analysis revealed three major themes: (1) the value of research, (2) the effect of protocolized care on patient and physician autonomy, and (3) information exchange between patients and physicians, including the mechanism of consent. Most patients and physicians were willing to relinquish decisional autonomy and were more willing to relinquish autonomy for research purposes than in clinical care. Patients' concerns toward clinical trials were tempered by their desires for certainty for a positive outcome and for physician validation. Patients tended to believe that being informed about research was more important than the actual mechanism of consent, and most were content with being able to opt out from participating.Conclusions: This qualitative study suggests the general acceptability of a pragmatic clinical trial comparing standard-of-care interventions that limits decisional autonomy for nephrologists and patients receiving hemodialysis. Future studies are needed to determine whether similar findings would emerge among other patients and providers considering other standard-of-care trials. [ABSTRACT FROM AUTHOR]