"You don't know what you don't know": A qualitative study of informational needs of patients, family members, and living donors to inform transplant system metrics.

INTRODUCTION: Informational needs and potential use of transplant metrics, especially among patients, remain understudied and a critical component of the transplant community's commitment to patient-centered care. We sought to understand the perspectives and needs of patients, family members/caregivers, living donors, and deceased donor family members. METHODS: We examined decision-making experiences and perspectives on the needs of these stakeholder groups for data about the national transplant system among 58 participants of 14 focus groups and 6 interviews. RESULTS: Three major themes emerged: 1) informational priorities and unmet needs (transplantation system processes, long-term outcomes data, prelisting data, patient-centered outcomes, and ability to compare centers and regions); 2) challenges obtaining relevant and trustworthy information (patient burden and effort, challenges with medical jargon, and difficulty finding trustworthy information); and 3) burden of facing the unknown (stress and anxiety leading to difficulty processing information, challenges facing the transplant journey when you "don't know what you don't know"). CONCLUSION: Patient, family member, and living donor participation in shared decision-making has been limited by inadequate access to patient-centered information. New metrics and patient-facing data presentations should address these content gaps using best practices to improve understanding and support shared decision-making.

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.

Perceptions of Telehealth vs In-Person Visits Among Older Adults With Advanced Kidney Disease, Care Partners, and Clinicians.

Importance: Telehealth has been posited as a cost-effective means for improving access to care for persons with chronic conditions, including kidney disease. Perceptions of telehealth among older patients with chronic illness, their care partners, and clinicians are largely unknown but are critical to successful telehealth use and expansion efforts. Objective: To identify patient, care partner, and nephrologists' perceptions of the patient-centeredness, benefits, drawbacks of telehealth compared to in-person visits. Design, Setting, and Participants: This qualitative study used semistructured interviews conducted from August to December 2020 with purposively sampled patients (aged 70 years or older, chronic kidney disease stages 4 to 5), care partners, and clinicians in Boston, Massachusetts; Chicago, Illinois; Portland, Maine; and San Diego, California. Main Outcomes and Measures: Participants described telehealth experiences, including factors contributing to and impeding engagement, satisfaction, and quality of care. Thematic analysis was used to analyze data. Results: Of 60 interviews, 19 (32%) were with clinicians, 30 (50%) with patients, and 11 (18%) with care partners; 16 clinicians (84%) were nephrologists; 17 patient participants (43%) were non-Hispanic Black, and 38 (67%) were women. Four overarching themes characterized telehealth's benefits and drawbacks for patient-centered care among older, chronically ill adults: inconsistent quality of care, patient experience and engagement, loss of connection and mistrust (eg, challenges discussing bad news), and disparities with accessing telehealth. Although telehealth improved convenience and care partner engagement, participants expressed concerns about clinical effectiveness and limitations of virtual physical examinations and potentially widening disparities in access. Many participants shared concerns about harms to the patient-clinician relationship, limited ability to comfort patients in virtual settings, and reduced patient trust. Conclusions and Relevance: Older patients, care partners, and kidney clinicians (ie, nephrologists and physician assistants) shared divergent views of patient-centered telehealth care, especially its clinical effectiveness, patient experience, access to care, and clinician-patient relationship. Understanding older patients' and kidney clinicians' perceptions of telehealth elucidate barriers that should be addressed to promote high-quality care and telehealth use.