Exploring perspectives on vaccinations delivered in complementary non-clinical settings and by non-physician healthcare professionals: A qualitative interview study.

OBJECTIVE: To understand perspectives on vaccine administration at complementary sites (such as pharmacies, mobile clinics, and pop-up clinics) by non-physician healthcare providers (NPHPs), and the policies/barriers surrounding administration. METHODS: We performed interviews with healthcare providers (HCPs) and vaccination policy experts to elicit perspectives on including vaccination program scope, facilitators and barriers to NPHPs administering vaccines, and recommendations for improvement of vaccine administration. Eligible participants were required to either work directly in vaccination administration or work in vaccination policy. RESULTS: Thirty-eight participants completed interviews. Participants reported that US individuals have a positive view of vaccination at complementary sites and by NPHPs, especially since the COVID-19 pandemic, where vaccination was often performed by NPHPs at complementary sites. Concerns expressed by participants included language barriers, out-of-pocket costs, and mistrust among marginalized communities. Participants described the complexity of state and local regulations, particularly scope of practice laws, as a barrier to implementation of NPHP vaccination programs at complementary sites. CONCLUSIONS: NPHPs and vaccination advocates report that complementary sites represent a potentially important step to ensuring broader, more equitable vaccination service in the US.

Measuring the Value Healthy Individuals Place on Generous Insurance Coverage of Severe Diseases: A Stated Preference Survey of Adults Diagnosed With and Without Lung Cancer.

OBJECTIVES: To compare the ex ante willingness to pay (WTP) of healthy individuals for generous insurance coverage of novel lung cancer treatments to the WTP for coverage of such treatment among individuals with lung cancer. METHODS: A survey was administered to 2 cohorts of US adults: (1) healthy individuals without cancer and (2) individuals diagnosed with lung cancer. A multiple random staircase survey design was used to elicit respondent WTP for coverage of novel lung cancer therapy associated with survival gains. RESULTS: Of the 84 937 healthy individuals invited, 300 completed the survey. Of the 36 249 in the lung cancer cohort invited, 250 completed the survey. Mean age by cohort was 50.0 (SD 14.6) and 48.4 (SD 16.8) years, and 55.2% and 47.2% were female, respectively. Respondents in the healthy and lung cancer cohorts were willing to pay $97.52 (95% confidence interval (CI) $89.89-$105.15) and $22 304 (95% CI $20 194-$24 414) per month, respectively, for coverage of a novel therapy providing 5-year survival of 15% versus standard-of-care therapy with a 5-year survival of 4%. After accounting for the likelihood that healthy individuals are diagnosed with lung cancer in the future, we estimated that 89.8% of the total value of new lung cancer treatments comes from the WTP healthy individuals place on generous insurance coverage. CONCLUSIONS: Total societal willingness to pay for lung cancer is much higher than conventionally thought, as most healthy individuals are risk-averse and highly value having lung cancer treatments available to them in the future.

Adoption of Digital Health Technologies in the Practice of Behavioral Health: Qualitative Case Study of Glucose Monitoring Technology.

BACKGROUND: Evaluation of patients with serious mental illness (SMI) relies largely on patient or caregiver self-reported symptoms. New digital technologies are being developed to better quantify the longitudinal symptomology of patients with SMI and facilitate disease management. However, as these new technologies become more widely available, psychiatrists may be uncertain about how to integrate them into daily practice. To better understand how digital tools might be integrated into the treatment of patients with SMI, this study examines a case study of a successful technology adoption by physicians: endocrinologists' adoption of digital glucometers. OBJECTIVE: This study aims to understand the key facilitators of and barriers to clinician and patient adoption of digital glucose monitoring technologies to identify lessons that may be applicable across other chronic diseases, including SMIs. METHODS: We conducted focus groups with practicing endocrinologists from 2 large metropolitan areas using a semistructured discussion guide designed to elicit perspectives of and experiences with technology adoption. The thematic analysis identified barriers to and facilitators of integrating digital glucometers into clinical practice. Participants also provided recommendations for integrating digital health technologies into clinical practice more broadly. RESULTS: A total of 10 endocrinologists were enrolled: 60% (6/10) male; a mean of 18.4 years in practice (SD 5.6); and 80% (8/10) working in a group practice setting. Participants stated that digital glucometers represented a significant change in the treatment paradigm for diabetes care and facilitated more effective care delivery and patient engagement. Barriers to the adoption of digital glucometers included lack of coverage, provider reimbursement, and data management support, as well as patient heterogeneity. Participant recommendations to increase the use of digital health technologies included expanding reimbursement for clinician time, streamlining data management processes, and customizing the technologies to patient needs. CONCLUSIONS: Digital glucose monitoring technologies have facilitated more effective, individualized care delivery and have improved patient engagement and health outcomes. However, key challenges faced by the endocrinologists included lack of reimbursement for clinician time and nonstandardized data management across devices. Key recommendations that may be relevant for other diseases include improved data analytics to quickly and accurately synthesize data for patient care management, streamlined software, and standardized metrics.

The financial burden and health care utilization patterns associated with amnestic mild cognitive impairment.

INTRODUCTION: Individuals with amnestic mild cognitive impairment (aMCI) are at elevated risk of developing Alzheimer's disease (AD) dementia. METHODS: With data from the Aging, Demographics, and Memory Study, we used the Clinical Dementia Rating Sum of Boxes classifications to conduct a cross-sectional analysis assessing the relationship between cognitive state and various direct and indirect costs and health care utilization patterns. RESULTS: Patients with aMCI had less medical expenditures than patients with moderate and severe AD dementia (P < .001) and were also significantly less likely to have been hospitalized (P = .04) and admitted to nursing home (P < .001). Compared to individuals with normal cognition, patients with aMCI had significantly less household income (P = .018). DISCUSSION: Patients with aMCI had lower medical expenditures than patients with AD dementia. Poor cognitive status was linearly associated with lower household income, higher medical expenditures, higher likelihood of nursing and home care services, and lower likelihood of outpatient visits.

Redefining Risk and Benefit: Understanding the Decision to Undergo Contralateral Prophylactic Mastectomy.

Rates of contralateral prophylactic mastectomy (CPM) among unilateral breast cancer patients are rapidly increasing; however, there are little data documenting the decision-making process of patients with no known BRCA mutations, who elect this more aggressive treatment. We conducted semistructured interviews with nine newly diagnosed patients who elected CPM over other surgical options. Using grounded theory, we analyzed interview data to identify influential decision-making factors by prevalence and intensity across participants. Decision-making factors included subjective evaluations of risk and benefit, avoidance of future breast cancer surveillance and accompanying worry, and desire to maintain (or improve) breast appearance. Based solely on survival benefit, the decision to undergo CPM might be viewed as unnecessary or even misguided. However, our findings show the importance of psychosocial factors in patients' assessments of risk and benefit, and support the need for additional patient-provider communication regarding these factors.

Breast cancer treatment across health care systems: linking electronic medical records and state registry data to enable outcomes research.

BACKGROUND: Understanding of cancer outcomes is limited by data fragmentation. In the current study, the authors analyzed the information yielded by integrating breast cancer data from 3 sources: electronic medical records (EMRs) from 2 health care systems and the state registry. METHODS: Diagnostic test and treatment data were extracted from the EMRs of all patients with breast cancer treated between 2000 and 2010 in 2 independent California institutions: a community-based practice (Palo Alto Medical Foundation; "Community") and an academic medical center (Stanford University; "University"). The authors incorporated records from the population-based California Cancer Registry and then linked EMR-California Cancer Registry data sets of Community and University patients. RESULTS: The authors initially identified 8210 University patients and 5770 Community patients; linked data sets revealed a 16% patient overlap, yielding 12,109 unique patients. The percentage of all Community patients, but not University patients, treated at both institutions increased with worsening cancer prognostic factors. Before linking the data sets, Community patients appeared to receive less intervention than University patients (mastectomy: 37.6% vs 43.2%; chemotherapy: 35% vs 41.7%; magnetic resonance imaging: 10% vs 29.3%; and genetic testing: 2.5% vs 9.2%). Linked Community and University data sets revealed that patients treated at both institutions received substantially more interventions (mastectomy: 55.8%; chemotherapy: 47.2%; magnetic resonance imaging: 38.9%; and genetic testing: 10.9% [P < .001 for each 3-way institutional comparison]). CONCLUSIONS: Data linkage identified 16% of patients who were treated in 2 health care systems and who, despite comparable prognostic factors, received far more intensive treatment than others. By integrating complementary data from EMRs and population-based registries, a more comprehensive understanding of breast cancer care and factors that drive treatment use was obtained.

Barriers and facilitators to routine distribution of patient decision support interventions: a preliminary study in community-based primary care settings.

BACKGROUND: A growing body of literature documents the value of decision support interventions (DESIs) in facilitating patient participation in preference sensitive decision making, but little is known about their implementation in routine care. OBJECTIVE: This study explored barriers and facilitators to prescribing DESIs in primary care. SETTING AND PARTICIPANTS: Four community-based primary care practices across Los Angeles County serving diverse low and middle income populations participated. DESIGN: The first phase focused on implementing DESI prescribing into routine care. Weekly academic detailing visits served to identify barriers to DESI prescribing, generate ethnographic field notes and record DESI prescriptions. The second phase explored the impact of a financial incentive on DESI prescribing. At the project's conclusion, each physician completed an in-depth interview. RESULTS: The four practices prescribed an average of 6.5 DESIs a month (range 3.6-9.2) during Phase I. The financial incentive increased DESI prescribing by 71% to 11.1 per month (range 3.5-21.4). The estimated percentages of patients who viewed the DESI were 37.9 and 43.9% during Phases I and II, respectively. Qualitative data suggest that physician buy-in with the project goal was crucial to DESI distribution success. Competing demands and time pressures were persistent barriers. The effects of the financial incentive were mixed. CONCLUSIONS: This study confirmed the importance of physician engagement when implementing DESIs and found mixed effects for providing financial incentives. The relatively low rate of DESI viewing suggests further research on increasing patient uptake of these interventions in routine practice is necessary.

Beyond barriers: fundamental 'disconnects' underlying the treatment of breast cancer patients' sexual health.

Sexual health concerns represent one of the most frequently experienced and longest-lasting effects of breast cancer treatment, but research suggests that service providers rarely discuss sexual health with their patients. Existing research examining barriers to addressing patients' sexual health concerns has focused on discrete characteristics of the provider-patient interaction without considering the broader context in which these interactions occur. Drawing on the experiences of 21 breast cancer survivors, this paper explores three ways in which fundamental cultural and structural characteristics of the cancer care system in the USA may prevent breast cancer survivors from addressing their sexual health concerns, including: (1) when patients discussed sexual health with their providers, their providers approached sexuality as primarily physical, while participants experienced complex, multidimensional sexual health concerns; (2) specialisation within cancer care services made it difficult for patients to identify the appropriate provider to address their concerns; and (3) the structure of cancer care literally disconnects patients from the healthcare system at the time when sexual side effects commonly emerged. These data suggest that addressing breast cancer survivors' sexual health concerns requires a multifaceted approach to health systems change.

Management of Patients With Advanced Urothelial Carcinoma in an Evolving Treatment Landscape: A Qualitative Study of Provider Perspectives of First-Line Therapies.

INTRODUCTION: The treatment landscape in locally advanced/unresectable or metastatic urothelial carcinoma (aUC) has evolved with the use of immune checkpoint inhibitors (ICIs) in the first line (1L) and platinum-refractory settings and with the recent approval of avelumab as 1L maintenance therapy for patients achieving disease control with platinum-containing regimens. Oncology provider perspectives and decision-making processes regarding aUC management, especially with the integration of recently approved strategies, such as maintenance therapy, have not been well-described. PATIENTS AND METHODS: Qualitative interview study with US oncologists and oncology nurses in academic and community settings in August 2020. Interviews explored decision-making around aUC 1L treatment eligibility determinants and selection, programmed cell death 1 ligand 1 (PD-L1) testing practices, and use of maintenance therapy. Thematic analysis was used to identify drivers of 1L treatment decisions. RESULTS: Eighteen oncologists (women, 11%; >15 years in practice, 55%; academic, 39%) and 18 oncology nurses (women, 94%; >15 years in practice, 34%; academic, 50%) participated. Providers preferred platinum-based regimens in 1L setting and reserved 1L ICI monotherapy for frail patients. Providers preferred chemotherapy followed by switch maintenance ICI, as opposed to concurrent combination chemotherapy and ICI, followed by ICI as continuation maintenance. Decision-making was driven by need to adhere to treatment decision-making guidelines, characteristics of the patient, treatment efficacy and patient preference. CONCLUSION: Providers adhered to guidelines and level I evidence in decision-making in the aUC 1L setting. Future studies should further evaluate barriers to the adoption of standard-of-care strategies and factors impacting decision-making in the real-world setting.

Estimating Productivity Loss from Breast and Non-Small-Cell Lung Cancer among Working-Age Patients and Unpaid Caregivers: A Survey Study Using the Multiplier Method.

Background. Traditional approaches to capturing health-related productivity loss (e.g., the human capital method) focus only on the foregone wages of affected patients, overlooking the losses caregivers can incur. This study estimated the burden of productivity loss among breast cancer (BC) and non-small-cell lung cancer (NSCLC) patients and individuals caring for such patients using an augmented multiplier method. Design. A cross-sectional survey of BC and NSCLC patients and caregivers measured loss associated with time absent from work (absenteeism) and reduced effectiveness (presenteeism). Respondents reported pre- and postcancer diagnosis income, hours worked, and time to complete tasks. Exploratory multivariable analyses examined correlations between respondents' clinical/demographic characteristics-including industry of employment-and postdiagnosis productivity. Results. Of 204 patients (104 BC, 100 NSCLC) and 200 caregivers (100 BC, 100 NSCLC) who completed the survey, 319 participants (162 BC, 157 NSCLC) working ≥40 wk/y prediagnosis were included in the analysis. More than one-third of the NSCLC (33%) and BC (43%) patients left the workforce postdiagnosis, whereas only 15% of caregivers did. The traditional estimate for the burden of productivity loss was 66% lower on average than the augmented estimate (NSCLC patients: 60%, BC patients: 69%, NSCLC caregivers: 59%, and BC caregivers: 73%). Conclusions. Although patients typically experience greater absenteeism, productivity loss incurred by caregivers is also substantial. Failure to account for such impacts can result in substantial underestimation of productivity gains novel cancer treatments may confer by enabling patients and caregivers to remain in the workforce longer. Our results underscore the importance of holistic approaches to understanding this impact on both patients and their caregivers and accounting for such considerations when making decisions about treatment and treatment value. Highlights: Cancer can have a profound impact on productivity. This study demonstrates how the disease affects not only patients but also the informal or unpaid individuals who care for patients.An augmented approach to calculating health-related productivity loss suggests that productivity impacts are much larger than previously understood.A more comprehensive understanding of the economic burden of cancer for both patients and their caregivers suggests the need for more support in the workplace for these individuals and a holistic approach to accounting for these impacts in treatment decision making.

Progression-free survival and quality of life in metastatic breast cancer: The patient perspective.

INTRODUCTION: Treatment advances for metastatic breast cancer (mBC) have improved overall survival (OS) in some mBC subtypes; however, there remains no cure for mBC. Considering the use of progression-free survival (PFS) and other surrogate endpoints in clinical trials, we must understand patient perspectives on measures used to assess treatment efficacy. OBJECTIVE: To explore global patient perceptions of the concept of PFS and its potential relation to quality of life (QoL). MATERIALS AND METHODS: Virtual roundtables in Europe and the United States and interviews in Japan with breast cancer patients, patient advocates, and thought leaders. Discussions were recorded, transcribed, and analyzed thematically. RESULTS: Lengthened OS combined with no worsening or improvement in QoL remain the most important endpoints for mBC patients. Time when the disease is not progressing is meaningful to patients when coupled with improvements in QoL and no added treatment toxicity. Clinical terminology such as "PFS" is not well understood, and participants underscored the need for patient-friendly terminology to better illustrate the concept. Facets of care that patients with mBC value and that may be related to PFS include relief from cancer-related symptoms and treatment-related toxicities as well as the ability to pursue personal goals. Improved communication between patients and providers on managing treatment-related toxicities and addressing psychosocial challenges to maintain desired QoL is needed. CONCLUSION: While OS and QoL are considered the most relevant endpoints, patients also value periods of time without disease progression. Incorporation of these considerations into the design and conduct of future clinical trials in mBC, as well as HTA and reimbursement decision-making, is needed to better capture the potential value of a therapeutic innovation.

The Value of Progression-Free Survival in Metastatic Breast Cancer: Results From a Survey of Patients and Providers.

Background. Value assessments and treatment decision making typically focus on clinical endpoints, especially overall survival (OS). However, OS data are not always available, and surrogate markers may also have some value to patients. This study sought to estimate preferences for progression-free survival (PFS) relative to OS in metastatic breast cancer (mBC) among a diverse set of stakeholders-patients, oncologists, and oncology nurses-and estimate the value patients and providers place on other attributes of treatment. Methods. Utilizing a combined conjoint analysis and discrete choice experiment approach, we conducted an online prospective survey of mBC patients and oncology care providers who treat mBC patients across the United States. Results. A total of 299 mBC patients, 100 oncologists, and 99 oncology nurses completed the survey. Virtually all patients preferred health state sequences with contiguous periods of PFS, compared with approximately 85% and 75% of nurses and oncologists, respectively. On average, longer OS was significantly (P < 0.01) preferred by the majority (75%) patients, but only 15% of nurses preferred longer OS, and OS did not significantly affect oncologists' preferred health state. However, in the context of a treatment decision, whether a treatment offered continuous periods of stable disease holding OS constant significantly affected nurses' treatment choices. Patients and providers alike valued reductions in adverse event risk and evidence from high-quality randomized controlled clinical trials. Conclusions. The strong preference for observed PFS suggests more research is warranted to better understand the reasons for PFS having positive value to patients. The results also suggest a range of endpoints in clinical trials may have importance to patients.

Mapping the Decision-Making Process for Adjuvant Endocrine Therapy for Breast Cancer: The Role of Decisional Resolve.

BACKGROUND: Studies show adjuvant endocrine therapy increases survival and decreases risk of breast cancer recurrence for hormone receptor-positive tumors. Yet studies also suggest that adherence rates among women taking this therapy may be as low as 50% owing largely to adverse side effects. Despite these rates, research on longitudinal patient decision making regarding this therapy is scant. OBJECTIVE: We sought to map the decision-making process for women considering and initiating adjuvant endocrine therapy, paying particular attention to patterns of uncertainty and decisional change over time. METHODS: A longitudinal series of semistructured interviews conducted at a multispecialty health care organization in Northern California with 35 newly diagnosed patients eligible for adjuvant endocrine therapy were analyzed. Analysis led to the identification and indexing of 3 new decision-making constructs-decisional phase, decisional direction, and decisional resolve-which were then organized using a visual matrix and examined for patterns characterizing the decision-making process. RESULTS: Our data reveal that most patients do not make a single, discrete decision to take or not take hormone therapy but rather traverse multiple decisional states, characterized by 1) phase, 2) direction, and 3) strength of resolve. Our analysis tracks these decisional states longitudinally using a grayscale-coded matrix. Our data show that decisional resolve wavers not just when considering therapy, as the existing concept of decisional conflict suggests, but even after initiating it, which may signal future decisions to forgo therapy. CONCLUSIONS: Adjuvant endocrine therapy, like other chronic care decisions, has a longer decision-making process and implementation period. Thus, theoretical, empirical, and clinical approaches should consider further exploring the new concept and measurement of decisional resolve, as it may help to improve subsequent medication adherence.

Access to credible information on schizophrenia patients' medication adherence by prescribers can change their treatment strategies: evidence from an online survey of providers.

OBJECTIVE: Overestimating patients' medication adherence diminishes the ability of psychiatric care providers to prescribe the most effective treatment and to identify the root causes of treatment resistance in schizophrenia. This study was conducted to determine how credible patient drug adherence information (PDAI) might change prescribers' treatment decisions. METHODS: In an online survey containing 8 clinical case vignettes describing patients with schizophrenia, health care practitioners who prescribe antipsychotics to patients with schizophrenia were instructed to choose a preferred treatment recommendation from a set of predefined pharmacologic and non-pharmacologic options. The prescribers were randomly assigned to an experimental or a control group, with only the experimental group receiving PDAI. The primary outcome was the prescribers' treatment choice for each case. Between-group differences were analyzed using multinomial logistic regression. RESULTS: A convenience sample (n=219) of prescribers completed the survey. For 3 nonadherent patient vignettes, respondents in the experimental group were more likely to choose a long-acting injectable antipsychotic compared with those in the control group (77.7% experimental vs 25.8% control; P<0.001). For 2 adherent but poorly controlled patient vignettes, prescribers who received PDAI were more likely to increase the antipsychotic dose compared with the control group (49.1% vs 39.1%; P<0.001). For the adherent and well-controlled patient vignette, respondents in both groups made similar treatment recommendations across all choices (P=0.099), but respondents in the experimental arm were more likely to recommend monitoring clinical stability (87.2% experimental vs 75.5% control, reference group). CONCLUSION: The results illustrate how credible PDAI can facilitate more appropriate clinical decisions for patients with schizophrenia.

Implementation of Patient Decision Support Interventions in Primary Care: The Role of Relational Coordination.

BACKGROUND: The benefits of patient decision support interventions (DESIs) have been well documented. However, DESIs remain difficult to incorporate into clinical practice. Relational coordination (RC) has been shown to improve performance and quality of care in health care settings. This study aims to demonstrate how applying RC theory to DESI implementation could elucidate underlying issues limiting widespread uptake. METHODS: Five primary care clinics in Northern California participated in a DESI implementation project. We used a deductive thematic approach guided by behaviors outlined in RC theory to analyze qualitative data collected from ethnographic field notes documenting the implementation process and focus groups with health care professionals. We then systematically compared the qualitative findings with quantitative DESI distribution data. RESULTS: Based on DESI distribution rates, clinics were placed into 3 performance categories: high, middle, and low. Qualitative data illustrated how each clinic's performance related to RC behaviors. Consistent with RC theory, the high-performing clinic exhibited frequent, timely, and accurate communication and positive working relationships. The 3 middle-performing clinics exhibited high-quality communication within physician-staff teams but limited communication regarding DESI implementation across the clinic. The lowest-performing clinic was characterized by contentious relationships and inadequate communication. LIMITATIONS: Limitations of the study include nonrandom selection of clinics and limited geographic diversity. In addition, ethnographic data collected documented only DESI implementation practices and not larger staff interactions contributing to RC. CONCLUSIONS: These findings suggest that a high level of RC within clinical settings may be a key component and facilitator of successful DESI implementation. Future attempts to integrate DESIs into clinical practice should consider incorporating interventions designed to increase positive RC behaviors as a potential means to improve uptake.

Shared medical appointments to screen for geriatric syndromes: preliminary data from a quality improvement initiative.

Older adults are at greater risk of developing conditions that affect health outcomes, quality of life, and costs of care. Screening for geriatric conditions such as memory loss, fall risk, and depression may contribute to the prevention of adverse physical and mental comorbidities, unnecessary hospitalizations, and premature nursing home admissions. Because screening is not consistently performed in primary care settings, a shared medical appointment (SMA) program was developed to fill this gap in care. The goals of the program were to improve early identification of at-risk individuals and ensure appropriate follow-up for memory loss, fall risk, and depression; facilitate discussion about prevention, diagnosis, and treatment of these conditions; implement strategies to reduce risks for these conditions; and increase access to screening and expand preventive health services for older adults. Between August 2011 and May 2013, 136 individuals aged 60 and older participated in the program. Three case studies highlighting the psychosocial and physiological findings of participation in the program are presented. Preliminary data suggest that SMAs are an effective model of regularly screening at-risk older adults that augments primary care practice by facilitating early detection and referral for syndromes that may otherwise be missed or delayed.

An effort to spread decision aids in five California primary care practices yielded low distribution, highlighting hurdles.

Despite the proven efficacy of decision aids as interventions for increasing patient engagement and facilitating shared decision making, they are not used routinely in clinical care. Findings from a project designed to achieve such integration, conducted at five primary care practices in 2010-12, document low rates of distribution of decision aids to eligible patients due for colorectal cancer screening (9.3 percent) and experiencing back pain (10.7 percent). There were also no lasting increases in distribution rates in response to training sessions and other promotional activities for physicians and clinic staff. The results of focus groups, ethnographic field notes, and surveys suggest that major structural and cultural changes in health care practice and policy are necessary to achieve the levels of use of decision aids and shared decision making in routine practice envisioned in current policy. Among these changes are ongoing incentives for use, physician training, and a team-based practice model in which all care team members bear formal responsibility for the use of decision aids in routine primary care.

Persistent barriers and strategic practices: why (asking about) the everyday matters in diabetes care.

PURPOSE: The purpose of this study was to explore the everyday barriers to and practices of low-income patients managing their diabetes. METHODS: The study team conducted semistructured qualitative interviews with 20 patients with type 2 diabetes who were receiving care at safety-net clinics in Southern California. Transcripts were analyzed using grounded theory to identify emergent themes across participants. RESULTS: Participants described managing diabetes with limited financial resources as often a game of balance and negotiation, whereby purchasing healthy foods is abandoned because of a more pressing concern in their life. Although participants described strategic attempts at incorporating healthy dietary practices for diabetes management into their daily decisions, these efforts were significantly impeded by the existence of persistent and seemingly insurmountable barriers. CONCLUSIONS: Although the challenges that low-income patients face in managing their diabetes may seem insurmountable at times, there are several ways that health care providers can help reduce the burden of these challenges, including tailoring their recommendations to incorporate the everyday socioeconomic environment of patients and engaging in clear, open communication with patients.

Authoritarian physicians and patients' fear of being labeled 'difficult' among key obstacles to shared decision making.

Relatively little is known about why some patients are reluctant to engage in a collaborative discussion with physicians about their choices in health care. To explore this issue further, we conducted six focus-group sessions with forty-eight people in the San Francisco Bay Area. In the focus groups, we found that participants voiced a strong desire to engage in shared decision making about treatment options with their physicians. However, several obstacles inhibit those discussions. These include the fact that even relatively affluent and well-educated patients feel compelled to conform to socially sanctioned roles and defer to physicians during clinical consultations; that physicians can be authoritarian; and that the fear of being categorized as "difficult" prevents patients from participating more fully in their own health care. We argue that physicians may not be aware of a need to create a safe environment for open communication to facilitate shared decision making. Rigorous measures of patient engagement, and of the degree to which health care decisions truly reflect patient preferences, are needed to advance shared decision making in clinical practice.