Willingness to trade-off years of life for an HIV cure - an experimental exploration of affective forecasting.

BACKGROUND: In the US, 1.2 million people live with HIV (PWH). Despite having near-normal life expectancies due to antiretroviral therapy (ART), many PWH seek an HIV cure, even if it means risking their lives. This willingness to take risks for a cure raises questions about "affective forecasting biases," where people tend to overestimate the positive impact of future events on their well-being. We conducted a study to test two interventions to mitigate affective forecasting in the decisions of PWH about taking HIV cure medication. METHODS: We recruited PWH to complete a 30-minute survey about their current quality of life (QoL) and the QoL they anticipate after being cured of HIV, and assigned them to either no additional intervention, to one of two interventions intended to reduce affective forecasting bias, or to both interventions: (1) a defocusing intervention designed to broaden the number of life domains people consider when imagining life changes associated with new circumstances (e.g. HIV cure); and (2) an adaptation intervention to help them gauge fading of strong emotions over time. The study design included a 2 × 2 design: defocusing (yes/no) x adaptation (yes/no) intervention. We assessed PWH's willingness to take hypothetical HIV sterilizing cure medication using the Time Trade-Off (TTO) and their quality of life predictions with WHOQOL-HIV. RESULTS: 296 PWH participated. Counter to what we had hypothesized, neither intervention significantly reduced PWH's willingness to trade time for a cure. Instead, the defocusing intervention increased their willingness to trade time (IRR 1.77, p = 0.03). Exploratory analysis revealed that PWH with lower current quality of life who received the defocusing intervention were more willing to trade time for a cure. CONCLUSION: These negative findings suggest that either these biases are difficult to overcome in the settings of HIV curative medication or other factors beyond affective forecasting biases influence willingness to participate in HIV curative studies, such as respondents' current quality of life.

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.

"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.

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.

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.

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.

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.

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.

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.

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.