The content and quality of publicly available information about congenital diaphragmatic hernia: Descriptive study

BACKGROUND: Congenital diaphragmatic hernia (CDH) diagnosis in an infant is distressing for parents. Parents often feel unable to absorb the complexities of CDH during prenatal consultations and use the internet to supplement their knowledge and decision making. OBJECTIVE: We aimed to examine the content and quality of publicly available, internet-based CDH information. METHODS: We conducted internet searches across 2 popular search engines (Google and Bing). Websites were included if they contained CDH information and were publicly available. We developed a coding instrument to evaluate websites. Two coders (FS and KS) were trained, achieved interrater reliability, and rated remaining websites independently. Descriptive statistics were performed. RESULTS: Searches yielded 520 websites; 91 met inclusion criteria and were analyzed. Most websites provided basic CDH information including describing the defect (86/91, 95%), need for neonatal intensive care (77/91, 85%), and surgical correction (79/91, 87%). Few mentioned palliative care, decisions about pregnancy termination (13/91, 14%), or support resources (21/91, 23%). CONCLUSIONS: Findings highlight the variability of information about CDH on the internet. Clinicians should work to develop or identify reliable, comprehensive information about CDH to support parents

Association between health insurance literacy and avoidance of health care services owing to cost

Importance: Navigating health insurance and health care choices requires considerable health insurance literacy. Although recommended preventive services are exempt from out-of-pocket costs under the Affordable Care Act, many people may remain unaware of this provision and its effect on their required payment. Little is known about the association between individuals\u27 health insurance literacy and their use of preventive or nonpreventive health care services. Objective: To assess the association between health insurance literacy and self-reported avoidance of health care services owing to cost. Design, Setting, and Participants: In this survey study, a US national, geographically diverse, nonprobability sample of 506 US residents aged 18 years or older with current health insurance coverage was recruited to participate in an online survey between February 22 and 23, 2016. Main Outcomes and Measures: The validated 21-item Health Insurance Literacy Measure (HILM) assessed individuals\u27 self-rated confidence in selecting and using health insurance (score range, 0-84, with higher scores indicating greater levels of health insurance literacy). Dependent variables included delayed or foregone preventive and nonpreventive services in the past 12 months owing to perceived costs, and preventive and nonpreventive use of services. Covariates included age, sex, race/ethnicity, income, educational level, high-deductible health insurance plan, health literacy, numeracy, and chronic health conditions. Analyses included descriptive statistics and bivariate and multivariable logistic regression. Results: A total of 506 of 511 participants who began the survey completed it (participation rate, 99.0%). Of the 506 participants, 339 (67.0%) were younger than 35 years (mean [SD] age, 34 [10.4] years), 228 (45.1%) were women, 406 of 504 who reported race (80.6%) were white, and 245 (48.4%) attended college for 4 or more years. A total of 228 participants (45.1%) had 1 or more chronic health condition, 361 of 500 (72.2%) who responded to the survey item had seen a physician in the outpatient setting in the past 12 months, and 446 of the 501 (89.0%) who responded to the survey item had their health insurance plan for 12 or more months. One hundred fifty respondents (29.6%) reported having delayed or foregone care because of cost. The mean (SD) HILM score was 63.5 (12.3). In multivariable logistic regression, each 12-point increase in HILM score was associated with a lower likelihood of both delayed or foregone preventive care (adjusted odds ratio [aOR], 0.61; 95% CI, 0.48-0.78) and delayed or foregone nonpreventive care (aOR, 0.71; 95% CI, 0.55-0.91). Conclusions and Relevance: This study\u27s findings suggest that lower health insurance literacy may be associated with greater avoidance of both preventive and nonpreventive services. It appears that to improve appropriate use of recommended health care services, including preventive health services, clinicians, health plans, and policymakers may need to communicate health insurance concepts in accessible ways regardless of individuals\u27 health insurance literacy. Plain language communication may be able to improve patients\u27 understanding of services exempt from out-of-pocket costs

Decision aids can support cancer clinical trials decisions: Results of a randomized trial

BACKGROUND. Cancer patients often do not make informed decisions regarding clinical trial participation. This study evaluated whether a web-based decision aid (DA) could support trial decisions compared with our cancer center’s website. METHODS. Adults diagnosed with cancer in the past 6 months who had not previously participated in a cancer clinical trial were eligible. Participants were randomized to view the DA or our cancer center’s website (enhanced usual care [UC]). Controlling for whether participants had heard of cancer clinical trials and educational attainment, multivariable linear regression examined group on knowledge, self-efficacy for finding trial information, decisional conflict (values clarity and uncertainty), intent to participate, decision readiness, and trial perceptions. RESULTS. Two hundred patients (86%) consented between May 2014 and April 2015. One hundred were randomized to each group. Surveys were completed by 87 in the DA group and 90 in the UC group. DA group participants reported clearer values regarding trial participation than UC group participants reported (least squares [LS] mean = 15.8 vs. 32, p < .0001) and less uncertainty (LS mean = 24.3 vs. 36.4, p = .025). The DA group had higher objective knowledge than the UC group’s (LS mean = 69.8 vs. 55.8, p < .0001). There were no differences between groups in intent to participate. CONCLUSIONS. Improvements on key decision outcomes including knowledge, self-efficacy, certainty about choice, and values clarity among participants who viewed the DA suggest web-based DAs can support informed decisions about trial participation among cancer patients facing this preference-sensitive choice. Although better informing patients before trial participation could improve retention, more work is needed to examine DA impact on enrollment and retention. IMPLICATIONS FOR PRACTICE: This paper describes evidence regarding a decision tool to support patients’ decisions about trial participation. By improving knowledge, helping patients clarify preferences for participation, and facilitating conversations about trials, decision aids could lead to decisions about participation that better match patients’ preferences, promoting patient-centered care and the ethical conduct of clinical research

Decision aids for people considering taking part in clinical trials

The authors would like to thank the Cochrane Consumers and Communication Group editors and staff, in particular Sandy Oliver and John Kis‐Rigo, for their help and assistance with this review. We would also like to thank Cynthia Fraser, based at the Health Services Research Unit (University of Aberdeen), for help with development, refinement and running of the search strategies and Graeme MacLennan (also based at the Health Services Research Unit) for statistical advice. We would like to thank Muhammad Omar (Managing Editor of the Cochrane Incontinence Group) and Steven MacLennan (Academic Urology Unit, University of Aberdeen) for advice regarding RevMan and GRADE softwPeer reviewedPublisher PD

Implementation and sustainability factors of two early-stage breast cancer conversation aids in diverse practices

BACKGROUND: Conversation aids can facilitate shared decision-making and improve patient-centered outcomes. However, few examples exist of sustained use of conversation aids in routine care due to numerous barriers at clinical and organizational levels. We explored factors that will promote the sustained use of two early-stage breast cancer conversation aids. We examined differences in opinions between the two conversation aids and across socioeconomic strata. METHODS: We nested this study within a randomized controlled trial that demonstrated the effectiveness of two early-stage breast cancer surgery conversation aids, one text-based and one picture-based. These conversation aids facilitated more shared decision-making and improved the decision process, among other outcomes, across four health systems with socioeconomically diverse patient populations. We conducted semi-structured interviews with a purposive sample of patient participants across conversation aid assignment and socioeconomic status (SES) and collected observations and field notes. We interviewed trial surgeons and other stakeholders. Two independent coders conducted framework analysis using the NOrmalization MeAsure Development through Normalization Process Theory. We also conducted an inductive analysis. We conducted additional sub-analyses based on conversation aid assignment and patient SES. RESULTS: We conducted 73 semi-structured interviews with 43 patients, 16 surgeons, and 14 stakeholders like nurses, cancer center directors, and electronic health record (EHR) experts. Patients and surgeons felt the conversation aids should be used in breast cancer care in the future and were open to various methods of giving and receiving the conversation aid (EHR, email, patient portal, before consultation). Patients of higher SES were more likely to note the conversation aids influenced their treatment discussion, while patients of lower SES noted more influence on their decision-making. Intervention surgeons reported using the conversation aids did not lengthen their typical consultation time. Most intervention surgeons felt using the conversation aids enhanced their usual care after using it a few times, and most patients felt it appeared part of their normal routine. CONCLUSIONS: Key factors that will guide the future sustained implementation of the conversation aids include adapting to existing clinical workflows, flexibility of use, patient characteristics, and communication preferences. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03136367 , registered on May 2, 2017

Discussing cost and value in patient decision aids and shared decision making: A call to action

Direct and indirect costs of care influence patients\u27 health choices and the ability to implement those choices. Despite the significant impact of care costs on patients\u27 health and daily lives, patient decision aid (PtDA) and shared decision-making (SDM) guidelines almost never mention a discussion of costs of treatment options as part of minimum standards or quality criteria. Given the growing study of the impact of costs in health decisions and the rising costs of care more broadly, in fall 2021 we organized a symposium at the Society for Medical Decision Making\u27s annual meeting. The focus was on the role of cost information in PtDAs and SDM. Panelists gave an overview of work in this space at this virtual meeting, and attendees engaged in rich discussion with the panelists about the state of the problem as well as ideas and challenges in incorporating cost-related issues into routine care. This article summarizes and extends our discussion based on the literature in this area and calls for action. We recommend that PtDA and SDM guidelines routinely include a discussion of direct and indirect care costs and that researchers measure the frequency, quality, and response to this information

Barriers and facilitators to implementing a patient-centered model of contraceptive provision in community health centers

Background The Contraceptive CHOICE Project developed a patient-centered model for contraceptive provision including: (1) structured, evidence-based counseling; (2) staff and health care provider education; and (3) removal of barriers such as cost and multiple appointments to initiate contraception. In preparation for conducting a research study of the CHOICE model in three community health settings, we sought to identify potential barriers and facilitators to implementation. Methods Using a semi-structured interview guide guided by a framework of implementation research, we conducted 31 qualitative interviews with female patients, staff, and health care providers assessing attitudes, beliefs, and barriers to receiving contraception. We also asked about current contraceptive provision and explored organizational practices relevant to implementing the CHOICE model. We used a grounded theory approach to identify major themes. Results Many participants felt that current contraceptive provision could be improved by the CHOICE model. Potential facilitators included agreement about the necessity for improved contraceptive knowledge among patients and staff; importance of patient-centered contraceptive counseling; and benefits to same-day insertion of long-acting reversible contraception (LARC). Potential barriers included misconceptions about contraception held by staff and providers; resistance to new practices; costs associated with LARC; and scheduling challenges required for same-day insertion of LARC. Conclusions In addition to staff and provider training, implementing a patient-centered model of contraceptive provision needs to be supplemented by strategies to manage patient and system-level barriers. Community health center staff, providers, and patients support patient-centered contraceptive counseling to improve contraception provision if organizations can address these barriers