More Than a Headache: Lived Experience of Migraine in Youth.

BACKGROUND: Migraine is the leading cause of disability among adolescents and young adults. We aimed to characterize the impact of migraine on the experience of children, adolescents, and caregivers. METHODS: This descriptive qualitative study recruited youth aged four to 18 years with migraine and their caregivers from the multicenter, prospective Pediatric Migraine Registry between 2020 and 2021. Participants completed semistructured interviews targeting the lived experience of migraine. A conventional content analysis approach was used to analyze data. RESULTS: Thirty enrolled dyads (n = 30 children and adolescents, n = 29 caregivers) completed 59 interviews (n = 29 child and adolescent interviews, n = 30 caregiver interviews). Children and adolescents had a median age of 15 years and experienced a median of 13.5 headache days per month. Caregivers had a median age of 44 years and predominantly identified as mothers (n = 28). We identified three themes: (1) Impact on emotional well-being: participants described how their migraine experience included feelings of isolation, depression, and irritability alongside the need for social support; (2) Impact on daily life: participants described how symptoms and unpredictability impacted their ability to perform activities of daily living; and (3) Impact on school: participants described how migraine impacted their school experience, including threatened attendance and worsened performance. CONCLUSIONS: In this cohort of youth and their caregivers, we identified salient themes to characterize the experience of migraine. Our findings underscore the urgent need for effective migraine treatments and interventions targeting co-occurring mental health conditions, peer relationships, and school support.

Deciding Whether to Take Sacubitril/Valsartan: How Cardiologists and Patients Discuss Out-of-Pocket Costs.

Background Out-of-pocket costs have significant implications for patients with heart failure and should ideally be incorporated into shared decision-making for clinical care. High out-of-pocket cost is one potential reason for the slow uptake of newer guideline-directed medical therapies for heart failure with reduced ejection fraction. This study aims to characterize patient-cardiologist discussions involving out-of-pocket costs associated with sacubitril/valsartan during the early postapproval period. Methods and Results We conducted content analysis on 222 deidentified transcripts of audio-recorded outpatient encounters taking place between 2015 and 2018 in which cardiologists (n=16) and their patients discussed whether to initiate, continue, or discontinue sacubitril/valsartan. In the 222 included encounters, 100 (45%) contained discussions about cost. Cost was discussed in a variety of contexts: when sacubitril/valsartan was initiated, not initiated, continued, and discontinued. Of the 97 cost conversations analyzed, the majority involved isolated discussions about insurance coverage (64/97 encounters; 66%) and few addressed specific out-of-pocket costs or affordability (28/97 encounters; 29%). Discussion of free samples of sacubitril/valsartan was common (52/97 encounters; 54%), often with no discussion of a longer-term plan for addressing cost. Conclusions Although cost conversations were somewhat common in patient-cardiologist encounters in which sacubitril/valsartan was discussed, these conversations were generally superficial, rarely addressing affordability or cost-value judgments. Cardiologists frequently provided patients with a course of free sacubitril/valsartan samples without a plan to address the cost after the samples ran out.

Characterizing the Language Used to Discuss Death in Family Meetings for Critically Ill Infants.

Importance: Communication during conversations about death is critical; however, little is known about the language clinicians and families use to discuss death. Objective: To characterize (1) the way death is discussed in family meetings between parents of critically ill infants and the clinical team and (2) how discussion of death differs between clinicians and family members. Design, Setting, and Participants: This longitudinal qualitative study took place at a single academic hospital in the southeast US. Patients were enrolled from September 2018 to September 2020, and infants were followed up longitudinally throughout their hospitalization. Participants included families of infants with neurologic conditions who were hospitalized in the intensive care unit and had a planned family meeting to discuss neurologic prognosis or starting, not starting, or discontinuing life-sustaining treatment. Family meetings were recorded, transcribed, and deidentified before being screened for discussion of death. Main Outcomes and Measures: The main outcome was the language used to reference death during family meetings between parents and clinicians. Conventional content analysis was used to analyze data. Results: A total of 68 family meetings involving 36 parents of 24 infants were screened; 33 family meetings (49%) involving 20 parents (56%) and 13 infants (54%) included discussion of death. Most parents involved in discussion of death identified as the infant's mother (13 [65%]) and as Black (12 [60%]). Death was referenced 406 times throughout the family meetings (275 times by clinicians and 131 times by family members); the words die, death, dying, or stillborn were used 5% of the time by clinicians (13 of 275 references) and 15% of the time by family members (19 of 131 references). Four types of euphemisms used in place of die, death, dying, or stillborn were identified: (1) survival framing (eg, not live), (2) colloquialisms (eg, pass away), (3) medical jargon, including obscure technical terms (eg, code event) or talking around death with physiologic terms (eg, irrecoverable heart rate drop), and (4) pronouns without an antecedent (eg, it). The most common type of euphemism used by clinicians was medical jargon (118 of 275 references [43%]). The most common type of euphemism used by family members was colloquialism (44 of 131 references [34%]). Conclusions and Relevance: In this qualitative study, the words die, death, dying, or stillborn were rarely used to refer to death in family meetings with clinicians. Families most often used colloquialisms to reference death, and clinicians most often used medical jargon. Future work should evaluate the effects of euphemisms on mutual understanding, shared decision-making, and clinician-family relationships.

Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences.

OBJECTIVE: We characterize the content and role of prognostic discussion for infants with neurologic conditions. METHODS: In this descriptive qualitative study, we prospectively enrolled infants (age < 1 year) in the intensive care unit with a neurologic condition anticipated to have ≥1 family conference about prognosis or goals of care. We audiorecorded family conferences as they occurred. We used a rapid-cycle qualitative approach to identify and refine themes. RESULTS: Forty infants and 61 parents were enrolled; 68 family conferences occurred for 24 infants. The majority of infant cases (n = 23/24, 96%) and conferences (n = 64/68, 94%) included discussion of neurologic prognosis. Common infant diagnoses included prematurity (n = 12, 52%), genetic conditions (n = 9, 35%), and brain malformations (n = 7, 30%). We identified 2 themes relating to the characterization of the infant's prognosis: (1) predictions of impairment and (2) rationale for prognostic predictions. We identified 3 themes characterizing the role of prognostic discussion: (1) aligning parent and clinician understanding of infant outcome, (2) influencing decision-making, and (3) preparing for life at home. We identified 2 themes characterizing discussion of prognostic uncertainty: (1) multilayered types of uncertainty and (2) holding space for hope alongside uncertainty. INTERPRETATION: In this cohort of infants with neurologic conditions and their parents, we identified salient themes characterizing the content and role of discussion about neurologic outcome. Our findings highlight that prognostic discussion focuses on anticipated impairments, informs decision-making, and helps families prepare for home life. Future work should characterize whether these findings align with parent preferences for prognostic disclosure. ANN NEUROL 2022;92:699-709.

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.

Beyond pain control: Outcome and treatment preferences in pediatric migraine.

OBJECTIVE: The objective of this study was to describe treatment preferences and perceived quality of existing outcome measures among children and adolescents with migraine and their caregivers. BACKGROUND: Across disciplines, there is increasing recognition of the value of direct input from stakeholders. Little empirical work has been done to determine what outcomes matter most to pediatric patients with migraine and their caregivers. METHODS: In this qualitative study, we recruited participants from the multicenter, prospective Pediatric Migraine Registry. We used stratified purposive sampling to recruit children and adolescents of varied ages and headache frequency. Patients with migraine and their caregivers completed semistructured interviews targeting treatment preferences and perceived quality of existing outcome measures. Emergent themes and subthemes were identified using conventional content analysis. RESULTS: Thirty dyads of children/adolescents and their caregivers were enrolled and completed 59 interviews (n = 29 children/adolescent interviews and n = 30 caregiver interviews). Three themes emerged. (1) Symptom relief: Looking beyond headache resolution: Participants described the value of outcomes in addition to pain relief, including a reduction in migraine intensity and improvement in non-pain symptoms. (2) Trade-offs between side effects and relief: Participants described cost-benefit analyses that can occur with headache treatment and acknowledged the impact of drug side effects on daily life and medication adherence. (3) Child-centered treatment: Participants described medication attributes salient to the pediatric context, including age-appropriate routes of administration and adequate safety data. CONCLUSIONS: Children, adolescents, and caregivers impacted by migraine value outcomes in addition to traditionally studied migraine endpoints. Participants valued decreased pain severity, even in the absence of pain resolution. Participants also prioritized the absence of side effects and key medication attributes, including fast onset and age-appropriate routes of administration. These results highlight an opportunity to design patient-centered clinical trials, develop drugs, and support product labeling that align with the outcomes valued most by children and adolescents with migraine and their caregivers.

How can healthcare organizations improve cost-of-care conversations? A qualitative exploration of clinicians' perspectives.

OBJECTIVES: Clinicians increasingly believe they should discuss costs with their patients. We aimed to learn what strategies clinicians, clinic leaders, and health systems can use to facilitate vital cost-of-care conversations. METHODS: We conducted focus groups and semi-structured interviews with outpatient clinicians at two US academic medical centers. Clinicians recalled previous cost conversations and described strategies that they, their clinic, or their health system could use to facilitate cost conversations. Independent coders recorded, transcribed, and coded focus groups and interviews. RESULTS: Twenty-six clinicians participated between December 2019 and July 2020: general internists (23%), neurologists (27%), oncologists (15%), and rheumatologists (35%). Clinicians proposed the following strategies: teach clinicians to initiate cost conversations; systematically collect financial distress information; partner with patients to identify costs; provide accurate insurance coverage and/or out-of-pocket cost information via the electronic health record; develop local lists of lowest-cost pharmacies, laboratories, and subspecialists; hire financial counselors; and reduce indirect costs (e.g., parking). CONCLUSIONS: Despite considerable barriers to discussing, identifying, and reducing patient costs, clinicians described a variety of strategies for improving cost communication in the clinic. PRACTICE IMPLICATIONS: Health systems and clinic leadership can and should implement these strategies to improve the financial health of the patients they serve.

Future research prioritization in cardiac resynchronization therapy.

BACKGROUND: Although cardiac resynchronization therapy (CRT) is effective for some patients with heart failure and a reduced left ventricular ejection fraction (HFrEF), evidence gaps remain for key clinical and policy areas. The objective of the study was to review the data on the effects of CRT for patients with HFrEF receiving pharmacological therapy alone or pharmacological therapy and an implantable cardioverter-defibrillator (ICD) and then, informed by a diverse group of stakeholders, to identify evidence gaps, prioritize them, and develop a research plan. METHODS: Relevant studies were identified using PubMed and EMBASE and ongoing trials using clinicaltrials.gov. Forced-ranking prioritization method was applied by stakeholders to reach a consensus on the most important questions. Twenty-six stakeholders contributed to the expanded list of evidence gaps, including key investigators from existing randomized controlled trials and others representing different perspectives, including patients, the public, device manufacturers, and policymakers. RESULTS: Of the 18 top-tier evidence gaps, 8 were related to specific populations or subgroups of interest. Seven were related to the comparative effectiveness and safety of CRT interventions or comparators, and 3 were related to the association of CRT treatment with specific outcomes. The association of comorbidities with CRT effectiveness ranked highest, followed by questions about the effectiveness of CRT among patients with atrial fibrillation and the relationship between gender, QRS morphology and duration, and outcomes for patients either with CRT plus ICD or with ICD. CONCLUSIONS: Evidence gaps presented in this article highlight numerous, important clinical and policy questions for which there is inconclusive evidence on the role of CRT and provide a framework for future collaborative research.

Interventions for Preventing Thromboembolic Events in Patients With Atrial Fibrillation: A Systematic Review.

Background: The comparative safety and effectiveness of treatments to prevent thromboembolic complications in atrial fibrillation (AF) remain uncertain. Purpose: To compare the effectiveness of medical and procedural therapies in preventing thromboembolic events and bleeding complications in adults with nonvalvular AF. Data Sources: English-language studies in several databases from 1 January 2000 to 14 February 2018. Study Selection: Two reviewers independently screened citations to identify comparative studies of treatments to prevent stroke in adults with nonvalvular AF who reported thromboembolic or bleeding complications. Data Extraction: Two reviewers independently abstracted data, assessed study quality and applicability, and rated strength of evidence. Data Synthesis: Data from 220 articles were included. Dabigatran and apixaban were superior and rivaroxaban and edoxaban were similar to warfarin in preventing stroke or systemic embolism. Apixaban and edoxaban were superior and rivaroxaban and dabigatran were similar to warfarin in reducing the risk for major bleeding. Treatment effects with dabigatran were similar in patients with renal dysfunction (interaction P > 0.05), and patients younger than 75 years had lower bleeding rates with dabigatran (interaction P < 0.001). The benefit of treatment with apixaban was consistent in many subgroups, including those with renal impairment, diabetes, and prior stroke (interaction P > 0.05 for all). The greatest bleeding risk reduction was observed in patients with a glomerular filtration rate less than 50 mL/min/1.73 m2 (P = 0.003). Similar treatment effects were observed for rivaroxaban and edoxaban in patients with prior stroke, diabetes, or heart failure (interaction P > 0.05 for all). Limitation: Heterogeneous study populations, interventions, and outcomes. Conclusion: The available direct-acting oral anticoagulants (DOACs) are at least as effective and safe as warfarin for patients with nonvalvular AF. The DOACs had similar benefits across several patient subgroups and seemed safe and efficacious for a wide range of patients with nonvalvular AF. Primary Funding Source: Patient-Centered Outcomes Research Institute. (PROSPERO: CRD42017069999).

Predicting Thromboembolic and Bleeding Event Risk in Patients with Non-Valvular Atrial Fibrillation: A Systematic Review.

BACKGROUND: Atrial fibrillation (AF) is a common cardiac arrhythmia that increases the risk of stroke. Medical therapy for decreasing stroke risk involves anticoagulation, which may increase bleeding risk for certain patients. In determining the optimal therapy for stroke prevention for patients with AF, clinicians use tools with various clinical, imaging and patient characteristics to weigh stroke risk against therapy-associated bleeding risk. AIM: This article reviews published literature and summarizes available risk stratification tools for stroke and bleeding prediction in patients with AF. METHODS: We searched for English-language studies in PubMed, Embase and the Cochrane Database of Systematic Reviews published between 1 January 2000 and 14 February 2018. Two reviewers screened citations for studies that examined tools for predicting thromboembolic and bleeding risks in patients with AF. Data regarding study design, patient characteristics, interventions, outcomes, quality, and applicability were extracted. RESULTS: Sixty-one studies were relevant to predicting thromboembolic risk and 38 to predicting bleeding risk. Data suggest that CHADS2, CHA2DS2-VASc and the age, biomarkers, and clinical history (ABC) risk scores have the best evidence for predicting thromboembolic risk (moderate strength of evidence for limited prediction ability of each score) and that HAS-BLED has the best evidence for predicting bleeding risk (moderate strength of evidence). LIMITATIONS: Studies were heterogeneous in methodology and populations of interest, setting, interventions and outcomes analysed. CONCLUSION: CHADS2, CHA2DS2-VASc and ABC scores have the best prediction for stroke events, and HAS-BLED provides the best prediction for bleeding risk. Future studies should define the role of imaging tools and biomarkers in enhancing the accuracy of risk prediction tools. PRIMARY FUNDING SOURCE: Patient-Centered Outcomes Research Institute (PROSPERO #CRD42017069999).

Patient, Caregiver, and Taxpayer Knowledge of Palliative Care and Views on a Model of Community-Based Palliative Care.

CONTEXT: Palliative care (PC) model delivered by two large hospices and PC providers. OBJECTIVES: To understand study participants' knowledge of PC and acceptability of a new community-based PC model. METHODS: Semistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach. RESULTS: Across 10 interviews and four focus groups (n = 4-10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services. CONCLUSION: Education for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC.

How Primary Care Providers Talk to Patients about Genome Sequencing Results: Risk, Rationale, and Recommendation.

BACKGROUND: Genomics will play an increasingly prominent role in clinical medicine. OBJECTIVE: To describe how primary care physicians (PCPs) discuss and make clinical recommendations about genome sequencing results. DESIGN: Qualitative analysis. PARTICIPANTS: PCPs and their generally healthy patients undergoing genome sequencing. APPROACH: Patients received clinical genome reports that included four categories of results: monogenic disease risk variants (if present), carrier status, five pharmacogenetics results, and polygenic risk estimates for eight cardiometabolic traits. Patients' office visits with their PCPs were audio-recorded, and summative content analysis was used to describe how PCPs discussed genomic results. KEY RESULTS: For each genomic result discussed in 48 PCP-patient visits, we identified a "take-home" message (recommendation), categorized as continuing current management, further treatment, further evaluation, behavior change, remembering for future care, or sharing with family members. We analyzed how PCPs came to each recommendation by identifying 1) how they described the risk or importance of the given result and 2) the rationale they gave for translating that risk into a specific recommendation. Quantitative analysis showed that continuing current management was the most commonly coded recommendation across results overall (492/749, 66%) and for each individual result type except monogenic disease risk results. Pharmacogenetics was the most common result type to prompt a recommendation to remember for future care (94/119, 79%); carrier status was the most common type prompting a recommendation to share with family members (45/54, 83%); and polygenic results were the most common type prompting a behavior change recommendation (55/58, 95%). One-fifth of recommendation codes associated with monogenic results were for further evaluation (6/24, 25%). Rationales for these recommendations included patient context, family context, and scientific/clinical limitations of sequencing. CONCLUSIONS: PCPs distinguish substantive differences among categories of genome sequencing results and use clinical judgment to justify continuing current management in generally healthy patients with genomic results.

Discussing Health Care Expenses in the Oncology Clinic: Analysis of Cost Conversations in Outpatient Encounters.

PURPOSE: ASCO identified oncologist-patient conversations about cancer costs as an important component of high-quality care. However, limited data exist characterizing the content of these conversations. We sought to provide novel insight into oncologist-patient cost conversations by determining the content of cost conversations in breast cancer clinic visits. METHODS: We performed content analysis of transcribed dialogue from 677 outpatient appointments for breast cancer management. Encounters featured 677 patients with breast cancer visiting 56 oncologists nationwide from 2010 to 2013. RESULTS: Cost conversations were identified in 22% of visits (95% CI, 19 to 25) and had a median duration of 33 seconds (interquartile range, 19 to 62). Fifty-nine percent of cost conversations were initiated by oncologists (95% CI, 51 to 67), who most commonly brought up costs for antineoplastic agents. By contrast, patients most frequently brought up costs for diagnostic tests. Thirty-eight percent of cost conversations mentioned cost-reducing strategies (95% CI, 30 to 46), which most commonly sought to lower patient costs for endocrine therapies and symptom-alleviating treatments. The three most commonly discussed cost-reducing strategies were: switching to a lower-cost therapy/diagnostic, changing logistics of the intervention, and facilitating copay assistance. CONCLUSION: We identified cost conversations in approximately one in five breast cancer visits. Cost conversations were mostly oncologist initiated, lasted < 1 minute, and dealt with a wide range of health care expenses. Cost-reducing strategies were mentioned in more than one third of cost conversations and often involved switching antineoplastic agents for lower-cost alternatives or altering logistics of diagnostic tests.

Discussing Out-of-Pocket Expenses During Clinical Appointments: An Observational Study of Patient-Psychiatrist Interactions.

OBJECTIVE: High out-of-pocket expenses for medical treatment have been associated with worse quality of life, decreased treatment adherence, and increased risk of adverse health outcomes. Treatment of depression potentially has high out-of-pocket expenses. Limited data characterize psychiatrist-patient conversations about health care costs. METHODS: The authors conducted content analysis from 422 outpatient psychiatrist-patient visits for medication management of major depressive disorder in community-based private practices nationwide from 2010 to 2014. RESULTS: Patients' health care expenses were discussed in 38% of clinic visits (95% confidence interval [CI]= 33%-43%). Uninsured patients were significantly more likely to discuss expenses than were patients enrolled in private or public plans (64%, 44%, and 30%, respectively; p<.001). Sixty-nine percent of cost conversations lasted less than one minute (median=36 seconds; interquartile range [IQR]=16-81 seconds). Cost conversations most frequently addressed psychotropic medications (51%). Physicians initiated 50% of cost conversations and brought up costs for psychotropic medications more often than did patients (62% versus 38%, p=.009). Conversely, a greater percentage of patient-initiated cost conversations addressed provider visit costs (27% versus 10%, p=.008). Overall, 45% of cost conversations mentioned cost-reducing strategies (CI=37%-53%). The most frequently discussed cost-reducing strategies were lowering cost by changing the source or timing of an intervention (for example, changing pharmacies), providing free samples, and switching to a lower-cost therapy or diagnostic test. CONCLUSIONS: Psychiatrists and patients regularly discuss patients' health care costs in visits for depression. These discussions cover a variety of clinical topics and frequently include strategies to lower patients' costs.

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.

Patient-physician discussions about costs: definitions and impact on cost conversation incidence estimates.

BACKGROUND: Nearly one in three Americans are financially burdened by their medical expenses. To mitigate financial distress, experts recommend routine physician-patient cost conversations. However, the content and incidence of these conversations are unclear, and rigorous definitions are lacking. We sought to develop a novel set of cost conversation definitions, and determine the impact of definitional variation on cost conversation incidence in three clinical settings. METHODS: Retrospective, mixed-methods analysis of transcribed dialogue from 1,755 outpatient encounters for routine clinical management of breast cancer, rheumatoid arthritis, and depression, occurring between 2010-2014. We developed cost conversation definitions using summative content analysis. Transcripts were evaluated independently by at least two members of our multi-disciplinary team to determine cost conversation incidence using each definition. Incidence estimates were compared using Pearson's Chi-Square Tests. RESULTS: Three cost conversation definitions emerged from our analysis: (a) Out-of-Pocket (OoP) Cost--discussion of the patient's OoP costs for a healthcare service; (b) Cost/Coverage--discussion of the patient's OoP costs or insurance coverage; (c) Cost of Illness- discussion of financial costs or insurance coverage related to health or healthcare. These definitions were hierarchical; OoP Cost was a subset of Cost/Coverage, which was a subset of Cost of Illness. In each clinical setting, we observed significant variation in the incidence of cost conversations when using different definitions; breast oncology: 16, 22, 24% of clinic visits contained cost conversation (OOP Cost, Cost/Coverage, Cost of Illness, respectively; P < 0.001); depression: 30, 38, 43%, (P < 0.001); and rheumatoid arthritis, 26, 33, 35%, (P < 0.001). CONCLUSIONS: The estimated incidence of physician-patient cost conversation varied significantly depending on the definition used. Our findings and proposed definitions may assist in retrospective interpretation and prospective design of investigations on this topic.

Study Of Physician And Patient Communication Identifies Missed Opportunities To Help Reduce Patients' Out-Of-Pocket Spending.

Some experts contend that requiring patients to pay out of pocket for a portion of their care will bring consumer discipline to health care markets. But are physicians prepared to help patients factor out-of-pocket expenses into medical decisions? In this qualitative study of audiorecorded clinical encounters, we identified physician behaviors that stand in the way of helping patients navigate out-of-pocket spending. Some behaviors reflected a failure to fully engage with patients' financial concerns, from never acknowledging such concerns to dismissing them too quickly. Other behaviors reflected a failure to resolve uncertainty about out-of-pocket expenses or reliance on temporary solutions without making long-term plans to reduce spending. Many of these failures resulted from systemic barriers to health care spending conversations, such as a lack of price transparency. For consumer health care markets to work as intended, physicians need to be prepared to help patients navigate out-of-pocket expenses when financial concerns arise during clinical encounters.

What Strategies Do Physicians and Patients Discuss to Reduce Out-of-Pocket Costs? Analysis of Cost-Saving Strategies in 1,755 Outpatient Clinic Visits.

BACKGROUND: More than 1 in 4 Americans report difficulty paying medical bills. Cost-reducing strategies discussed during outpatient physician visits remain poorly characterized. OBJECTIVE: We sought to determine how often patients and physicians discuss health care costs during outpatient visits and what strategies, if any, they discussed to lower patient out-of-pocket costs. DESIGN: Retrospective analysis of dialogue from 1,755 outpatient visits in community-based practices nationwide from 2010 to 2014. The study population included 677 patients with breast cancer, 422 with depression, and 656 with rheumatoid arthritis visiting 56 oncologists, 36 psychiatrists, and 26 rheumatologists, respectively. RESULTS: Thirty percent of visits contained cost conversations (95% confidence interval [CI], 28 to 32). Forty-four percent of cost conversations involved discussion of cost-saving strategies (95% CI, 40 to 48; median duration, 68 s). We identified 4 strategies to lower costs without changing the care plan. They were, in order of overall frequency: 1) changing logistics of care, 2) facilitating co-pay assistance, 3) providing free samples, and 4) changing/adding insurance plans. We also identified 4 strategies to reduce costs by changing the care plan: 1) switching to lower-cost alternative therapy/diagnostic, 2) switching from brand name to generic, 3) changing dosage/frequency, and 4) stopping/withholding interventions. Strategies were relatively consistent across health conditions, except for switching to a lower-cost alternative (more common in breast oncology) and providing free samples (more common in depression). LIMITATION: Focus on 3 conditions with potentially high out-of-pocket costs. CONCLUSIONS: Despite price opacity, physicians and patients discuss a variety of out-of-pocket cost reduction strategies during clinic visits. Almost half of cost discussions mention 1 or more cost-saving strategies, with more frequent mention of those not requiring care-plan changes.

Communication challenges for nongeneticist physicians relaying clinical genomic results.

AIM: Identify the behavioral challenges to the use of genome sequencing (GS) in a clinical setting. MATERIALS & METHODS: We observed how general internists and nongenetic specialists delivered GS results to patients enrolled in the MedSeq Project. Using transcripts of such disclosure interactions, we made qualitative observations of communication behaviors that could limit the usefulness of GS results until reaching the point of thematic saturation. RESULTS: Findings included confusion regarding genomic terminology, difficulty with the volume or complexity of information and difficulties communicating complex risk information to patients. We observed a broad dismissal of clinical value of GS by some physicians and sometimes ineffective communication regarding health behavior change. CONCLUSION: Overcoming these behavioral challenges is necessary to make full use of clinical GS results.