Personal Social Networks and Care-Seeking for Head and Neck Cancer: A Qualitative Study.

OBJECTIVES: To investigate the role of patients' personal social networks (SNs) in accessing head and neck cancer (HNC) care through patients' and health care workers' (HCWs) perspectives. STUDY DESIGN: Qualitative study. SETTING: Tertiary HNC centers at 2 academic medical centers, including 1 safety net hospital. METHODS: Patients with newly diagnosed HNC, and HCWs caring for HNC patients, aged ≥18 years were recruited between June 2022 and July 2023. Semistructured interviews were conducted with both patients and HCWs. Inductive and deductive thematic analysis was performed with 2 coders (κ = 0.82) to analyze the data. RESULTS: The study included 72 participants: 42 patients (mean age 57 years, 64% female, 81% white), and 30 HCWs (mean age 42 years, 77% female, 83% white). Four themes emerged: (1) Patients' SNs facilitate care through various forms of support, (2) patients may hesitate to seek help from their networks, (3) obligations toward SNs may act as barriers to seeking care, and (4) the SN composition and dedication influence care-seeking. CONCLUSION: Personal SNs play a vital role in prompting early care-seeking among HNC patients. SN-based interventions could enhance care and improve outcomes for HNC patients.

Kidney Transplant Clinicians' Perceptions of Palliative Care for Patients With Failing Allografts in the US: A Mixed Methods Study.

RATIONALE & OBJECTIVE: Kidney transplant patients with failing allografts have a physical and psychological symptom burden as well as high morbidity and mortality. Palliative care is underutilized in this vulnerable population. We described kidney transplant clinicians' perceptions of palliative care to delineate their perceived barriers to and facilitators of providing palliative care to this population. STUDY DESIGN: National explanatory sequential mixed methods study including an online survey and semistructured interviews. SETTING & PARTICIPANTS: Kidney transplant clinicians in the United States surveyed and interviewed from October 2021 to March 2022. ANALYTICAL APPROACH: Descriptive summary of survey responses, thematic analysis of qualitative interviews, and mixed methods integration of data. RESULTS: A total of 149 clinicians completed the survey, and 19 completed the subsequent interviews. Over 90% of respondents agreed that palliative care can be helpful for patients with a failing kidney allograft. However, 46% of respondents disagreed that all patients with failing allografts benefit from palliative care, and two-thirds thought that patients would not want serious illness conversations. More than 90% of clinicians expressed concern that transplant patients and caregivers would feel scared or anxious if offered palliative care. The interviews identified three main themes: (1) transplant clinicians' unique sense of personal and professional responsibility was a barrier to palliative care engagement, (2) clinicians' uncertainty regarding the timing of palliative care collaboration would lead to delayed referral, and (3) clinicians felt challenged by factors related to patients' cultural backgrounds and identities, such as language differences. Many comments reflected an unfamiliarity with the broad scope of palliative care beyond end-of-life care. LIMITATIONS: Potential selection bias. CONCLUSIONS: Our study suggests that multiple barriers related to patients, clinicians, health systems, and health policies may pose challenges to the delivery of palliative care for patients with failing kidney transplants. This study illustrates the urgent need for ongoing efforts to optimize palliative care delivery models dedicated to kidney transplant patients, their families, and the clinicians who serve them. PLAIN-LANGUAGE SUMMARY: Kidney transplant patients experience physical and psychological suffering in the context of their illnesses that may be amenable to palliative care. However, palliative care is often underutilized in this population. In this mixed-methods study, we surveyed 149 clinicians across the United States, and 19 of them completed semistructured interviews. Our study results demonstrate that several patient, clinician, system, and policy factors need to be addressed to improve palliative care delivery to this vulnerable population.

A Conduit for a Culturally Competent Consent: Medical Interpreters' Perspectives on Surgical Informed Consent Discussions.

OBJECTIVE: To understand medical interpreter's perspectives on surgical informed consent discussions and provide feedback for surgeons on improving these conversations. SUMMARY BACKGROUND DATA: Informed consent is a critical component of patient-centered surgical decision-making. For patients with limited English proficiency (LEP), this conversation may be less thorough, even with a medical interpreter, leaving patients with an inadequate understanding of their diagnosis or treatment options. METHODS: A semi-structured interview guide was developed with input from interpreters and a qualitative research expert. We purposively sampled medical interpreters representing multiple languages until thematic saturation was achieved. Participants discussed their experience with the surgical consent discussion and process. Interview transcripts were analyzed using emergent thematic analysis. RESULTS: Among 22 interpreters, there were ten languages represented and an average experience of 15 years (range 4-40 y). Four major themes were identified. First, interpreters consistently described their roles as patient advocates and cultural brokers. Second, interpreters reported unique patient attributes that influence the discussion, often based on patients' cultural values/expectations, anticipated decisional autonomy, and family support. Third, interpreters emphasized the importance of surgeons demonstrating compassion and patience, using simple terminology, conversing around the consent, providing context about the form/process, and initiating a pre-encounter discussion. Finally, interpreters suggested reducing legal terminology on consent forms and translation into other languages. CONCLUSIONS: Experienced interpreters highlighted multiple factors associated with effective and culturally tailored informed consent discussions. Surgeons should recognize interpreters' critical and complex roles, be cognizant of cultural variations among patients with LEP, and improve interpersonal and communication skills to facilitate effective understanding.

Evidence-Based Medicine in Otolaryngology Part 16: Qualitative and Quantitative Methods-Contrasting and Complementary Approaches.

Qualitative methods have been increasingly applied in our literature, providing richness to data and incorporating the nuances of patient and family perspectives. These qualitative research techniques provide breadth and depth beyond what can be gleaned through quantitative methods alone. When both quantitative and qualitative approaches are coupled, their findings provide complementary information which can further substantiate study conclusions. We thus aim to provide insight into qualitative and quantitative methods in comparison and contrast to each other, as well as guidance on when each approach is most apt. In relation, we also describe mixed methods and the theory supporting their framework. In doing so, we provide the foundation for an ensuing, more detailed exposition of qualitative methods.

Project AquiLá: Community-engaged Planning to Explore the Relationship between Culture and Health.

BACKGROUND: Elements of charrette planning were employed to develop and examine the relationship between transnationalism, culture and health. OBJECTIVE: This paper describes the partnership, the first two stages of the planning charrette and lessons learned. METHODS: During charrette planning phase 1 we collected data through social network interviews (n = 58), cultural conversations (n = 88), and photovoice (n = 9). In the second phase we performed five charrette planning meetings. Data were synthesized by the planning team. LESSONS LEARNED: The issue centered focus facilitated trust among partners. The holistic, iterative process to planning and interpreting preliminary data provided a deeper understanding of the issues under investigation. Community partners at the table held us accountable to the communities we were studying and infused an undercurrent of social justice in our work. CONCLUSIONS: There are advantages in employing a community engaged transdisciplinary team-based approach to the study of transnationalism, culture and health.

Disparities in Travel-Related Barriers to Accessing Health Care From the 2017 National Household Travel Survey.

Importance: Geographic access, including mode of transportation, to health care facilities remains understudied. Objective: To identify sociodemographic factors associated with public vs private transportation use to access health care and identify the respondent, trip, and community factors associated with longer distance and time traveled for health care visits. Design, Setting, and Participants: This cross-sectional study used data from the 2017 National Household Travel Survey, including 16 760 trips or a nationally weighted estimate of 5 550 527 364 trips to seek care in the United States. Households that completed the recruitment and retrieval survey for all members aged 5 years and older were included. Data were analyzed between June and August 2022. Exposures: Mode of transportation (private vs public transportation) used to seek care. Main Outcomes and Measures: Survey-weighted multivariable logistic regression models were used to identify factors associated with public vs private transportation and self-reported distance and travel time. Then, for each income category, an interaction term of race and ethnicity with type of transportation was used to estimate the specific increase in travel burden associated with using public transportation compared a private vehicle for each race category. Results: The sample included 12 092 households and 15 063 respondents (8500 respondents [56.4%] aged 51-75 years; 8930 [59.3%] females) who had trips for medical care, of whom 1028 respondents (6.9%) were Hispanic, 1164 respondents (7.8%) were non-Hispanic Black, and 11 957 respondents (79.7%) were non-Hispanic White. Factors associated with public transportation use included non-Hispanic Black race (compared with non-Hispanic White: adjusted odds ratio [aOR], 3.54 [95% CI, 1.90-6.61]; P < .001) and household income less than $25 000 (compared with ≥$100 000: aOR, 7.16 [95% CI, 3.50-14.68]; P < .001). The additional travel time associated with use of public transportation compared with private vehicle use varied by race and household income, with non-Hispanic Black respondents with income of $25 000 to $49 999 experiencing higher burden associated with public transportation (mean difference, 81.9 [95% CI, 48.5-115.3] minutes) than non-Hispanic White respondents with similar income (mean difference, 25.5 [95% CI, 17.5-33.5] minutes; P < .001). Conclusions and Relevance: These findings suggest that certain racial, ethnic, and socioeconomically disadvantaged populations rely on public transportation to seek health care and that reducing delays associated with public transportation could improve care for these patients.

Conservative Kidney Management in Kidney Transplant Populations.

Conservative kidney management (CKM) has been increasingly accepted as a therapeutic option for seriously ill patients with advanced chronic kidney disease. CKM is active medical management of advanced chronic kidney disease without dialysis, with a focus on delaying the worsening of kidney disease and minimizing symptom burden. CKM may be considered a suitable option for kidney transplant recipients with poorly functioning and declining allografts, defined as patients with low estimated glomerular filtration rate (<20 mL/min per 1.73 m2) who are approaching allograft failure. CKM may be a fitting option for transplant patients facing high morbidity and mortality with or without dialysis resumption, and it should be offered as a choice for this patient population. In this review, we describe clinical considerations in caring for patients with poorly functioning and declining kidney allografts, especially the unique decision-making process around kidney replacement therapies. We discuss ways to incorporate CKM as an option for these patients. We also discuss financial and policy considerations in providing CKM for this population. Patients with poorly functioning and declining kidney allografts should be supported throughout transitions of care by an interprofessional and multidisciplinary team attuned to their unique challenges. Further research on when, who, and how to integrate CKM into existing care structures for patients with poorly functioning and declining kidney allografts is needed.

Prevalence of unpaid caregiving, pain, and depression in older seriously ill patients undergoing elective surgery.

INTRODUCTION: Serious illness is a life-limiting condition negatively impacting daily function, quality of life, or excessively straining caregivers. Over 1 million older seriously ill adults undergo major surgery annually, and national guidelines recommend that palliative care be available to all seriously ill patients. However, the palliative care needs of elective surgical patients are incompletely described. Understanding baseline caregiving needs and symptom burden among seriously ill older surgical patients could inform interventions to improve outcomes. METHODS: Using Health and Retirement Study data (2008-2018) linked to Medicare claims, we identified patients ≥66 years who met an established serious illness definition from administrative data and underwent major elective surgery using Agency for Healthcare Research and Quality (AHRQ) criteria. Descriptive analyses were performed for preoperative patient characteristics, including: unpaid caregiving (no or yes); pain (none/mild or moderate/severe); and depression (no, CES-D < 3, or yes, CES-D ≥ 3). Multivariable regression was performed to examine the association between unpaid caregiving, pain, depression, and in-hospital outcomes, including hospital days (days admitted between discharge date and one-year post-discharge), in-hospital complications (no or yes), and discharge destination (home or non-home). RESULTS: Of the 1343 patients, 55.0% were female and 81.6% were non-Hispanic White. Mean age was 78.0 (SD 6.8); 86.9% had ≥2 comorbidities. Before admission, 27.3% of patients received unpaid caregiving. Pre-admission pain and depression were 42.6% and 32.8%, respectively. Baseline depression was significantly associated with non-home discharge (OR 1.6, 95% CI 1.2-2.1, p = 0.003), while baseline pain and unpaid caregiving needs were not associated with in-hospital or post-acute outcomes in multivariable analysis. CONCLUSIONS: Prior to elective surgery, older adults with serious illnesses have high unpaid caregiving needs and a prevalence of pain and depression. Baseline depression alone was associated with discharge destinations. These findings highlight opportunities for targeted palliative care interventions throughout the surgical encounter.

Use of Advance Care Planning Codes Among Transgender Medicare Beneficiaries.

Purpose: We examined the use of advance care planning (ACP) among Medicare beneficiaries who were identified as transgender. Methods: This study is a cross-sectional analysis of Medicare claims from 2016 to 2018, comparing ACP visits between transgender and other beneficiaries. Results: Beneficiaries identified as transgender were slightly more likely than those who were dual eligible for Medicaid and Medicare, and the remaining fee-for-service Medicare population, to have received a claim for ACP. However, racial and ethnic differences exist and transgender beneficiaries were more likely to receive an ACP claim from hospice/palliative care clinicians compared with primary care clinicians relative to other beneficiaries. Conclusions: Differences in ACP provision may exacerbate disparities in access to ACP benefits faced by transgender patients.

Lost in translation: A qualitative analysis of facilitators and barriers to collecting patient reported outcome measures for surgical patients with limited English proficiency.

BACKGROUND: Patient-reported outcome measures (PROMs) are increasingly being used throughout surgical disciplines, but their use is limited in multilingual patient populations. We aimed to investigate facilitators and barriers to PROMs collection for patients with limited English proficiency (LEP). METHODS: Semi-structured interviews were performed with providers from multiple surgical disciplines across six academic medical centers until thematic saturation was achieved. RESULTS: Among 24 interviews, respondents noted either systematic exclusion of patients with LEP or significant barriers to implementation. Barriers included lack of valid and translated PROMs, lack of multi-lingual electronic medical record integration, and insufficient time and resources to accommodate patients with LEP. Facilitators to collection included institutional leadership and funding support for validating translations. CONCLUSION: These barriers may result in inadvertent but systematic exclusion of patients with LEP from outcomes datasets as well as clinical decision making. Future implementation projects should consider these themes when developing initiatives for more equitable PROMs collection and utilization.

Is This ACP? A Focus Group Study of Patient Experiences of Advance Care Planning.

BACKGROUND: To date, most research on patients' experiences with advance care planning (ACP) focuses on motivations to engage in discussions and how patients prepare. Gaps remain in understanding how non-critically ill Medicare patients perceive ACP encounters, including how they characterize positive and negative experiences with ACP. OBJECTIVES: Understanding these patients' perceptions is imperative as Medicare has sought to incentivize provision of ACP services via two billing codes in 2016. DESIGN: Qualitative focus group study. Thematic analysis was performed to assess participants ACP experience. PARTICIPANTS: Medicare beneficiaries who had engaged in or were billed for ACP. KEY RESULTS: Seven focus groups were conducted with 34 Medicare beneficiaries who had engaged in ACP across 5 US health systems. Participants described a spectrum of perceptions regarding ACP, and a range of delivery approaches, including group ACP, discussions with specialists during serious illness, and ACP in primary care settings during wellness visits. Despite being billed for ACP or having ACP services noted in their medical record, many did not recognize that they had engaged in ACP, expressed lack of clarity over the term "ACP," and were unaware of the Medicare billing codes. Among participants who described quality patient-centered ACP experiences, three additional themes were identified: trusted and established patient/clinician relationships, transparent communication and documentation, and an understanding that ACP is revisable. Participants offered recommendations for clinicians and health systems to improve the patient ACP experience. CONCLUSIONS: Findings include actionable steps to promote patient-centered ACP experiences, including clinician training to support improved communication and facilitating shared decision-making, allocating sufficient clinical time for discussions, and ensuring that documentation of preferences is clear and accessible. Other approaches such as group ACP and ACP navigators may help to support patient interests within clinical constraints and need to be further explored.

Understanding The Use Of Medicare Procedure Codes For Advance Care Planning: A National Qualitative Study.

In 2016 Medicare introduced advance care planning Current Procedural Terminology (CPT) codes to reimburse clinicians for time spent providing the service. Despite recent increases, use of these codes remains low for reasons incompletely captured by quantitative research. To further identify barriers and facilitators to code use for Medicare fee-for-service enrollees, we conducted case studies at eleven health systems, including 272 interviews with clinicians, administrators, and key leadership. Five themes related to use of the new codes emerged: code-based constraints to billing, burdening patients with unexpected charges, ethical concerns with billing for discussion of advance care plans, incentives to signal the importance of their use in billing, and increasing both workflow burden and the need for institutional supports and training. Respondents also observed that use was facilitated by health systems' investment in clinician training and in processes to audit the codes' use. Our findings suggest that increased reimbursement, strong institutional commitment and support, and streamlined workflow could improve the use of the new CPT codes to document receipt of and ensure access to Medicare advance care planning.

"Don't Talk to Them About Goals of Care": Understanding Disparities in Advance Care Planning.

BACKGROUND: Structurally marginalized groups experience disproportionately low rates of advance care planning (ACP). To improve equitable patient-centered end-of-life care, we examine barriers and facilitators to ACP among clinicians as they are central participants in these discussions. METHOD: In this national study, we conducted semi-structured interviews with purposively selected clinicians from 6 diverse health systems between August 2018 and June 2019. Thematic analysis yielded themes characterizing clinicians' perceptions of barriers and facilitators to ACP among patients, and patient-centered ways of overcoming them. RESULTS: Among 74 participants, 49 (66.2%) were physicians, 16.2% were nurses, and 13.5% were social workers. Most worked in primary care (35.1%), geriatrics (21.1%), and palliative care (19.3%) settings. Clinicians most frequently expressed difficulty discussing ACP with certain racial and ethnic groups (African American, Hispanic, Asian, and Native American) (31.1%), non-native English speakers (24.3%), and those with certain religious beliefs (Catholic, Orthodox Jewish, and Muslim) (13.5%). Clinicians were more likely to attribute barriers to ACP completion to patients (62.2%), than to clinicians (35.1%) or health systems (37.8%). Three themes characterized clinicians' difficulty approaching ACP (preconceived views of patients' preferences, narrow definitions of successful ACP, and lack of institutional resources), while the final theme illustrated facilitators to ACP (acknowledging bias and rejecting stereotypes, mission-driven focus on ACP, and acceptance of all preferences). CONCLUSIONS: Most clinicians avoided ACP with certain racial and ethnic groups, those with limited English fluency, and persons with certain religious beliefs. Our findings provide evidence to support development of clinician-level and institutional-level interventions and to reduce disparities in ACP.

Advance care planning among Medicare beneficiaries with dementia undergoing surgery.

IMPORTANCE: Advance care planning (ACP), in which patients or their surrogates discuss goals and preferences for care with physicians, attorneys, friends, and family, is an important approach to help align goals with actual treatment. ACP may be particularly valuable in patients with advanced serious illnesses such as Alzheimer's disease and related dementias (ADRDs) for whom surgery carries significant risks. OBJECTIVE: To determine the frequency, timing, and factors associated with ACP billing in Medicare beneficiaries with ADRD undergoing nontrauma inpatient surgery. DESIGN: This national cohort study analyzes Medicare fee-for-service claims data from 2016 to 2017. All patients had a 6-month lookback and follow-up period. SETTING: National Medicare fee-for-service data. PARTICIPANTS: All patients with ADRD, defined according to the Chronic Conditions Warehouse, undergoing inpatient surgery from July 1, 2016 to June 30, 2017. EXPOSURES: Patient demographics, medical history, and procedural outcomes. MAIN OUTCOME: ACP billing codes from 6 months before to 6 months after admission for inpatient surgery. RESULTS: This study included 289,428 patients with ADRD undergoing surgery, of whom 21,754 (7.5%) had billed ACP within the 6 months before and after surgical admission. In a multivariable analysis, patients of white race, male sex, and residence in the Southern and Midwestern United States were at the highest risk of not receiving ACP. Of all patients who received ACP, 5960 (27.4%) did so before surgery while 12,658 (52.8%) received ACP after surgery. Timing of ACP after surgery was associated with an Elixhauser comorbidity index of 3 or higher (1.23, p = 0.045) and major postoperative complication or death (odds ratio 1.52, p < 0.0001). CONCLUSIONS AND RELEVANCE: Overall ACP billing code use is low among Medicare patients with ADRD undergoing surgery. Billed ACP appears to have a reactive pattern, occurring most commonly after surgery and in association with postoperative mortality and complications. Additional study is warranted to understand barriers to use.

Patient perspectives on the need for implanted device information: Implications for a post-procedural communication framework.

BACKGROUND: Shared decision making and patient-centred communication have become part of pre-procedural decisions and perioperative care across medical specialties. However, gaps exist in patient communication about the implanted device received and the benefits in sharing information about their procedure and device. OBJECTIVE: To understand the patients' knowledge of identifying information for their implanted devices and perspectives on sharing their implanted device information. METHODS: Four focus groups were conducted with patients who had received a cardiac or vascular implanted device from one of the study sites within the previous 6 months. Data were transcribed and thematically analysed. RESULTS: Five themes emerged: lack of awareness of identifying information on implanted devices; value of information on implanted devices; varying trust with sharing device information; perceived risk with sharing device information; and lack of consensus on a systematic process for tracking implanted devices. DISCUSSION: Patients desire post-procedural information on their implanted device and a designated plan for longitudinal follow-up, but lack trust and perceive risk with broadly sharing their implanted device information. CONCLUSION: After receiving an implanted device, post-procedural patient communication needs to be expanded to include identifying information on the device including the unique device identifier, how long-term tracking will be supported and the process for notification in case of a problem with the device. This communication should also include education on how sharing device information supports patients' long-term health care, post-market safety surveillance and research. PATIENT OR PUBLIC CONTRIBUTION: The research team included members who were also patients with implanted devices.

Transmitting Device Identifiers of Implants From the Point of Care to Insurers: A Demonstration Project.

BACKGROUND: For implanted devices, an effective postmarket surveillance system does not exist. For medications, the Food and Drug Administration's Sentinel Initiative plays that role, relying mainly on drug codes in insurance claims. Unique device identifiers (UDIs) could play an analogous role for implants, but there is no mandate for providers to include UDIs in claims or for payers to record them. Objections have been raised to incorporating UDIs into claims based on a potential burden on providers. METHODS: To assess this purported barrier, we modified information systems at 2 provider-payer dyads to allow for the transmission of UDI data from provider to payer. In addition, to illustrate the potential benefit of including device data in claims, we used our data to compare rates of 90-day adverse events after implantation using the electronic health record (EHR) alone with the EHR plus claims. RESULTS: The software system modifications were modest and performed as designed. Moreover, the level of difficulty of their development and implementation was comparable to that associated with a typical new release of an existing system. In addition, our data demonstrated the ability of claims-based data plus EHR data to reveal a larger percentage of postprocedure adverse events than data from EHRs alone. CONCLUSIONS: Modifying information systems to allow for the transmission of UDI data from providers to payers should not impose a substantial burden on either. Implementation of a postmarket surveillance system based on such data in claims will require, however, the development of a system analogous to Sentinel.