Community-based organizations' perspectives on piloting health and social care integration in North Carolina.

BACKGROUND: Community-based organizations (CBOs) are key players in health and social care integration initiatives, yet little is known about CBO perspectives and experiences in these pilot programs. Understanding CBO perspectives is vital to identifying best practices for successful medical and social care integration. METHODS: From February 2021 to March 2021, we conducted surveys with 12 CBOs that participated in the North Carolina COVID-19 Social Support Program, a pre-pilot for North Carolina's Medicaid Sect. 1115 demonstration waiver program that addresses social drivers of health. RESULTS: CBO participants preferred communication strategies that involved direct communication and felt clear communication was vital to the program's success. Participants expressed varied experiences regarding their ability to handle a changing volume of referrals. Participants identified their organizations' strengths as: strong organizational operations, past experiences with and understanding of the community, and coordination across organizations. Participants identified challenges as: difficulty communicating with clients, coping with capacity demands for scaling services, and lack of clear processes from external organizations. Almost all CBO participants expressed enthusiasm for participating in similar social care transformation programs in the future. CONCLUSIONS: CBO participants in our study had broadly positive experiences in the pilot program and almost all would participate in a similar program in the future. Participants provided perspectives that can inform health and social care integration initiatives, including strengths and challenges in such programs. To build and sustain health and social care integration programs, it is important to: (1) support CBOs through regular, direct communication that builds trust and power-sharing between CBO and health care entities; (2) leverage CBO community expertise; and (3) pursue an individualized assessment of CBO capacity and identify CBO capacity-building strategies that ensure program success and sustainability.

Practice Patterns of Fundoscopic Examination for Diabetic Retinopathy Screening in Primary Care.

Importance: Primary care professionals (PCPs) have a central role in screening for diabetic retinopathy (DR), especially in settings where access to specialty eye care is limited. Data on current DR screening practice patterns in primary care are needed to inform screening strategies. Objectives: To assess the practice patterns of fundoscopic examination for DR screening in a large primary care network and to evaluate the sensitivity and accuracy of PCP fundoscopy for detecting DR. Design, Setting, and Participants: A retrospective cohort study was performed using random sampling and manual review of electronic health records of PCP fundoscopic examination documentation compared with documentation of an examination performed by an eye care professional (ophthalmologist or optometrist) within 2 years before or after primary care encounters. From a single-institution primary care network of 28 clinics, 7449 adult patients with diabetes seen at least once in the primary care network in 2019 were eligible for this study. Data from 2001 encounters were abstracted from the electronic health record for a random sample of 767 patients. Data analysis was performed from January 2021 to May 2022. Exposure: Fundoscopic examination by PCPs. Main Outcomes and Measures: The frequency of PCPs performing fundoscopy at least once in the calendar year for patients with diabetes. Univariate and multivariable logistic regression analyses were performed to identify patient, clinician, and clinic factors associated with PCPs performing fundoscopy at least once in the calendar year. The PCP examination results were compared with diagnoses made by eye care professionals to assess the sensitivity and accuracy of the findings from PCP examinations. Results: Among the 767 adult patients with diabetes included in the analysis, 387 (50.5%) were female, and the median age was 64 years (IQR, 54-71 years). Primary care professionals documented a fundoscopic examination for 93 patients (12.1%); all results were documented as normal. When eye care professional examination results were used as the reference standard, the accuracy of PCP fundoscopic examination was 62.7% (95% CI, 50.0%-73.9%) and sensitivity for detecting disease was 0.0% (95% CI, 0.0%-14.9%). No patient demographic or clinical characteristics were associated with PCPs performing fundoscopy. In multivariable logistic regression, the number of PCP years in practice was associated with greater odds of patients receiving fundoscopy at least once in the year (adjusted odds ratio per 10 years in practice, 1.26; 95% CI, 1.01-1.59; P = .04); having nurse practitioner credentials was associated with lower odds of receiving fundoscopy (adjusted odds ratio, 0.23; 95% CI, 0.04-0.79; P = .049; compared with having physician credentials); after adjusting for rural clinic location, clinic location in a primary care shortage area, and documentation of an up-to-date eye care professional examination by a PCP in the study year. Conclusions and Relevance: In this cohort study, fundoscopic examination was rarely performed and was not sensitive for detecting DR in primary care practice. Because the rate of DR screening by eye care professionals remains low, research to explore and break down barriers to the implementation of effective primary care-based DR screening strategies, such as teleretinal imaging, is needed to prevent vision loss from undiagnosed DR.

Two Specialists, Two Recommendations: Discordance Between Urologists' & Radiation Oncologists' Prostate Cancer Treatment Recommendations.

OBJECTIVE: To examine the treatment recommendation patterns among urologists and radiation oncologists, the level of concordance or discordance between physician recommendations, and the association between physician recommendations and the treatment that patients received. METHOD: The study was a secondary analysis of data from a randomized clinical trial conducted November 2010 to April 2014 (NCT02053389). Eligible participants were patients from the trial who saw both specialists. The primary outcome was physician recommendations that were scored using an adapted version of the validated PhyReCS coding system. Secondary outcomes included concordance between physician recommendations and the treatment patients received. RESULTS: Participants were 108 patients (Mean age 61.9 years; range 43-82; 87% non-Hispanic White). Urologists were more likely to recommend surgery (79% of recommendations) and radiation oncologists were more likely to recommend radiation (68% of recommendations). Recommendations from the urologists and radiation oncologists were concordant for only 33 patients (30.6%). Most patients received a treatment that both physicians recommended (59%); however, 35% received a treatment that only one of their physicians recommended. When discordant, urologists more often recommended surgery and radiation oncologists recommended radiation and surgery as equally appropriate options. CONCLUSION: Urologists and radiation oncologists are more likely to differ than agree in their treatment recommendations for the same patients with clinically localized prostate cancer and more likely to favor treatment aligned with their specialty. Additional studies are needed to better understand how patients make decisions after meeting with two different specialists to inform the development of best practices within oncology clinics.

Preparing Patients with Early Stage Prostate Cancer to Participate in Clinical Appointments Using a Shared Decision Making Training Video.

BACKGROUND: Rates of shared decision making (SDM) are relatively low in early stage prostate cancer decisions, as patients' values are not well integrated into a preference-sensitive treatment decision. The study objectives were to develop a SDM training video, measure usability and satisfaction, and determine the effect of the intervention on preparing patients to participate in clinical appointments. METHODS: A randomized controlled trial was conducted to compare a plain-language decision aid (DA) to the DA plus a patient SDM training video. Patients with early stage prostate cancer completed survey measures at baseline and after reviewing the intervention materials. Survey items assessed patients' knowledge, beliefs related to SDM, and perceived readiness/intention to participate in their upcoming clinical appointment. RESULTS: Of those randomized to the DA + SDM video group, most participants (91%) watched the video and 93% would recommend the video to others. Participants in the DA + SDM video group, compared to the DA-only group, reported an increased desire to participate in the decision (mean = 3.65 v. 3.39, P < 0.001), less decision urgency (mean = 2.82 v. 3.39, P < 0.001), and improved self-efficacy for communicating with physicians (mean = 4.69 v. 4.50, P = 0.05). These participants also reported increased intentions to seek a referral from a radiation oncologist (73% v. 51%, P = 0.004), to take notes (mean = 3.23 v. 2.86, P = 0.004), and to record their upcoming appointments (mean = 1.79 v. 1.43, P = 0.008). CONCLUSIONS: A novel SDM training video was accepted by patients and changed several measures associated with SDM. This may be a scalable, cost-effective way to prepare patients with early stage prostate cancer to participate in their clinical appointments.[Box: see text].

Gain-loss framing and patients' decisions: a linguistic examination of information framing in physician-patient conversations.

When discussing risks and benefits with cancer patients, physicians could focus on losses such as mortality rates and cancer recurrence or, alternatively, gains such as survival rates and curing cancer. Previous research has shown that the way health information is framed influences individuals' preferences and choices. We operationalized gain-loss framing as physicians' choice of words related to gains (cancer survival), or losses (cancer mortality). In an exploratory analysis, we investigated (a) whether physicians used gain or loss words as a function of their recommendation, (b) whether physicians' choice of words was associated with patients' treatment choices. We analyzed transcribed consultations with male patients who had intermediate-risk prostate cancer. Using an iterative process of gathering and evaluating words, we created gain- and loss-dictionaries. The loss-dictionary included words related to cancer death and cancer progression. The gain-dictionary included words related to survival and cure. Using Linguistic Inquiry and Word Count software, we calculated the number of words related to gains and losses in each transcript. We found that physicians who recommended immediate cancer treatment for prostate cancer (vs. active surveillance) used slightly fewer words related to losses and significantly fewer words related specifically to death from cancer. Further analysis showed that loss words were associated with the patient's choice of immediate cancer treatment. A novel method of automated text analysis showed that physicians' use of loss words was correlated with physicians' recommendations for cancer treatment versus active surveillance. Additionally, loss words in consultations were associated with patients' choice of cancer treatment.

Racial differences in veterans' response to a standard vs. patient-centered decision aid for prostate cancer: Implications for decision making in African American and White men.

OBJECTIVE: To determine whether racial differences exist in patient preferences for prostate cancer treatment after being informed about options using a patient-centered vs. a standard decision aid (DA). METHODS: This article reports secondary analyses of a large study of men diagnosed with early stage prostate cancer. Men were recruited from 4 VA Health Systems and randomized to receive a patient-centered or standard DA about prostate cancer treatment options. Data were collected at 1) baseline, 2) after reading the DA but prior to diagnosis, and 3) after receiving a cancer diagnosis and meeting with a urologist. RESULTS: White patients who received the patient-centered DA written at a 7th grade reading level were more likely to prefer active surveillance and less likely to prefer radiation compared to those who received the standard DA written at >9th grade reading level. African American patients' treatment preferences did not differ as a function of DA. CONCLUSIONS: When informed about prostate cancer treatment options through a patient-centered DA, White patients changed their treatment preferences but African American patients did not. PRACTICE IMPLICATIONS: As DAs are increasingly being used in clinical practice, more research is needed regarding the efficacy, relevance, and receptivity of DAs for African Americans.

"Cure" Versus "Clinical Remission": The Impact of a Medication Description on the Willingness of People Living with HIV to Take a Medication.

Many people living with HIV (PLWHIV) state that they would be willing to take significant risks to be "cured" of the virus. However, how they interpret the word "cure" in this context is not clear. We used a randomized survey to examine whether PLWHIV had a different willingness to take a hypothetical HIV medication if it causes flu-like symptoms, but provides: (a) cure, (b) remission that was labeled "cure", or (c) remission. PLWHIV (n = 454) were more willing to take a medication that provided a "cure" versus a "remission" if the side effects lasted less than 1 year. PLWHIV were more willing to take a medication that provided a remission that was labeled "cure" versus a "remission" (p = 0.01) if the side effects lasted 2 weeks. Clinicians and researchers should be aware of the impact of the word "cure" and ensure that PLWHIV fully understand the possible outcomes of their treatment options.

HIV Cure Research: Risks Patients Expressed Willingness to Accept.

Despite doing well on antiretroviral therapy, many people living with HIV have expressed a willingness to accept substantial risks for an HIV cure. To date, few studies have assessed the specific quantitative maximal risk that future participants might take; probed whether, according to future participants, the risk can be offset by the benefits; and examined whether taking substantial risk is a reasonable decision. In this qualitative study, we interviewed 22 people living with HIV and used standard gamble methodology to assess the maximum chance of death a person would risk for an HIV cure. We probed participants' reasoning behind their risk-taking responses. Conventional inductive content analysis was used to categorize key themes regarding decision-making. We found that some people would be willing to risk even death for an HIV cure, and some of their reasons were plausible and went far beyond the health-related utility of an HIV cure. We contend that people's expressed willingness to take substantial risk for an HIV cure should not be dismissed out of hand.

What risk of death would people take to be cured of HIV and why? A survey of people living with HIV.

People living with HIV (PLWHIV) can reasonably expect near-normal longevity, yet many express a willingness to assume significant risks to be cured. We surveyed 200 PLWHIV who were stable on antiretroviral therapy (ART) to quantify associations between the benefits they anticipate from a cure and their risk tolerance for curative treatments. Sixty-five per cent expected their health to improve if cured of HIV, 41% predicted the virus would stop responding to medications over the next 20 years and 54% predicted experiencing serious medication side effects in the next 20 years. Respondents' willingness to risk death for a cure varied widely (median 10%, 75th percentile 50%). In multivariate analyses, willingness to risk death was associated with expected long-term side effects of ART, greater financial resources and being employed (all P < 0.05) but was not associated with perceptions of how their health would improve if cured.

The Impact of Cost Conversations on the Patient-Physician Relationship.

Previous research has suggested that fear of harm to the patient-physician relationship is an important barrier to conversations about cost of care. However, few experimental studies have investigated the effects of cost of care conversations on the patient-physician relationship, particularly from the patient's perspective. In the current research, we take an experimental approach to investigate patients' attitudes and preferences for a hypothetical physician who discusses cost versus one who does not. Across three studies, using data from both the general population and cancer patients, we find that people prefer a hypothetical physician who discusses cost over one who does not (Pilot Study, Studies 1 and 2). In addition, we find that people use cost information to inform their hypothetical treatment decisions without changing their attitudes toward the physician who includes this information (Study 1). Finally, we examine how and when cost information compares to more traditional medical information (e.g., side effects; Study 2). We discuss the implications of this research for cost communications and the patient-physician relationship, highlighting that cost conversations may not be as harmful as previously thought.

Empowerment Failure: How Shortcomings in Physician Communication Unwittingly Undermine Patient Autonomy.

Many health care decisions depend not only upon medical facts, but also on value judgments-patient goals and preferences. Until recent decades, patients relied on doctors to tell them what to do. Then ethicists and others convinced clinicians to adopt a paradigm shift in medical practice, to recognize patient autonomy, by orienting decision making toward the unique goals of individual patients. Unfortunately, current medical practice often falls short of empowering patients. In this article, we reflect on whether the current state of medical decision making effectively promotes patients' health care goals. We base our reflections, in part, on research in which we observed physicians making earnest efforts to partner with patients in making treatment decisions, but still struggling to empower patients-failing to communicate clearly to patients about decision-relevant information, overwhelming patients with irrelevant information, overlooking when patients' emotions made it hard to engage in choices, and making recommendations before discussing patients' goals.

Poor Consumer Comprehension and Plan Selection Inconsistencies Under the 2016 HealthCare.gov Choice Architecture.

BACKGROUND: Many health policy experts have endorsed insurance competition as a way to reduce the cost and improve the quality of medical care. In line with this approach, health insurance exchanges, such as HealthCare.gov, allow consumers to compare insurance plans online. Since the 2013 rollout of HealthCare.gov, administrators have added features intended to help consumers better understand and compare insurance plans. Although well-intentioned, changes to exchange websites affect the context in which consumers view plans, or choice architecture, which may impede their ability to choose plans that best fit their needs at the lowest cost. METHODS: By simulating the 2016 HealthCare.gov enrollment experience in an online sample of 374 American adults, we examined comprehension and choice of HealthCare.gov plans under its choice architecture. RESULTS: We found room for improvement in plan comprehension, with higher rates of misunderstanding among participants with poor math skills (P < 0.05). We observed substantial variations in plan choice when identical plan sets were displayed in different orders (P < 0.001). However, regardless of order in which they viewed the plans, participants cited the same factors as most important to their choices (P > 0.9). LIMITATIONS: Participants were drawn from a general population sample. The study does not assess for all possible plan choice influencers, such as provider networks, brand recognition, or help from others. CONCLUSIONS: Our findings suggest two areas of improvement for exchanges: first, the remaining gap in consumer plan comprehension and second, the apparent influence of sorting order - and likely other choice architecture elements - on plan choice. Our findings inform strategies for exchange administrators to help consumers better understand and select plans that better fit their needs.

The Physician Recommendation Coding System (PhyReCS): A Reliable and Valid Method to Quantify the Strength of Physician Recommendations During Clinical Encounters.

BACKGROUND: Physicians' recommendations affect patients' treatment choices. However, most research relies on physicians' or patients' retrospective reports of recommendations, which offer a limited perspective and have limitations such as recall bias. OBJECTIVE: To develop a reliable and valid method to measure the strength of physician recommendations using direct observation of clinical encounters. METHODS: Clinical encounters (n = 257) were recorded as part of a larger study of prostate cancer decision making. We used an iterative process to create the 5-point Physician Recommendation Coding System (PhyReCS). To determine reliability, research assistants double-coded 50 transcripts. To establish content validity, we used 1-way analyses of variance to determine whether relative treatment recommendation scores differed as a function of which treatment patients received. To establish concurrent validity, we examined whether patients' perceived treatment recommendations matched our coded recommendations. RESULTS: The PhyReCS was highly reliable (Krippendorf's alpha = 0.89, 95% CI [0.86, 0.91]). The average relative treatment recommendation score for each treatment was higher for individuals who received that particular treatment. For example, the average relative surgery recommendation score was higher for individuals who received surgery versus radiation (mean difference = 0.98, SE = 0.18, P < 0.001) or active surveillance (mean difference = 1.10, SE = 0.14, P < 0.001). Patients' perceived recommendations matched coded recommendations 81% of the time. CONCLUSION: The PhyReCS is a reliable and valid way to capture the strength of physician recommendations. We believe that the PhyReCS would be helpful for other researchers who wish to study physician recommendations, an important part of patient decision making.

Physician Recommendations Trump Patient Preferences in Prostate Cancer Treatment Decisions.

OBJECTIVE: To assess the influence of patient preferences and urologist recommendations in treatment decisions for clinically localized prostate cancer. METHODS: We enrolled 257 men with clinically localized prostate cancer (prostate-specific antigen <20; Gleason score 6 or 7) seen by urologists (primarily residents and fellows) in 4 Veterans Affairs medical centers. We measured patients' baseline preferences prior to their urology appointments, including initial treatment preference, cancer-related anxiety, and interest in sex. In longitudinal follow-up, we determined which treatment patients received. We used hierarchical logistic regression to determine the factors that predicted treatment received (active treatment v. active surveillance) and urologist recommendations. We also conducted a directed content analysis of recorded clinical encounters to determine if urologists discussed patients' interest in sex. RESULTS: Patients' initial treatment preferences did not predict receipt of active treatment versus surveillance, Δχ2(4) = 3.67, P = 0.45. Instead, receipt of active treatment was predicted primarily by urologists' recommendations, Δχ2(2) = 32.81, P < 0.001. Urologists' recommendations, in turn, were influenced heavily by medical factors (age and Gleason score) but were unrelated to patient preferences, Δχ2(6) = 0, P = 1. Urologists rarely discussed patients' interest in sex (<15% of appointments). CONCLUSIONS: Patients' treatment decisions were based largely on urologists' recommendations, which, in turn, were based on medical factors (age and Gleason score) and not on patients' personal views of the relative pros and cons of treatment alternatives.

Treatment Availability Influences Physicians' Portrayal of Robotic Surgery During Clinical Appointments.

In order to empower patients as decision makers, physicians must educate them about their treatment options in a factual, nonbiased manner. We propose that site-specific availability of treatment options may be a novel source of bias, whereby physicians describe treatments more positively when they are available. We performed a content analysis of physicians' descriptions of robotic prostatectomy within 252 appointments at four Veterans Affairs medical centers where robotic surgery was either available or unavailable. We coded how physicians portrayed robotic versus open prostatectomy across specific clinical categories and in the appointment overall. We found that physicians were more likely to describe robotic prostatectomy as superior when it was available [F(1, 42) = 8.65, p = .005]. We also provide initial qualitative evidence that physicians may be shaping their descriptions of robotic prostatectomy in an effort to manage patients' emotions and demand for the robotic technology. To our knowledge, this is the first study to provide empirical evidence that treatment availability influences how physicians describe the advantages and disadvantages of treatment alternatives to patients during clinical encounters, which has important practical implications for patient empowerment and patient satisfaction.

Using a Non-Fit Message Helps to De-Intensify Negative Reactions to Tough Advice.

Sometimes physicians need to provide patients with potentially upsetting advice. For example, physicians may recommend hospice for a terminally ill patient because it best meets their needs, but the patient and their family dislike this advised option. We explore whether regulatory non-fit could be used to improve these types of situations. Across five studies in which participants imagined receiving upsetting advice from a physician, we demonstrate that regulatory non-fit between the form of the physician's advice (emphasizing gains vs. avoiding losses) and the participants' motivational orientation (promotion vs. prevention) improves participants' evaluation of an initially disliked option. Regulatory non-fit de-intensifies participants' initial attitudes by making them less confident in their initial judgments and motivating them to think more thoroughly about the arguments presented. Furthermore, consistent with previous research on regulatory fit, we showed that the mechanism of regulatory non-fit differs as a function of participants' cognitive involvement in the evaluation of the option.