Development of a novel measure of advanced cancer patients' perceived utility of secondary germline findings from tumor genomic profiling.

Objective: Tumor genomic profiling (TGP) can inform advanced cancer patients' treatment decisions, and also reveal secondary germline findings-information about inherited risks for cancer and other disorders. We sought to develop a measure of patient perceptions of the clinical and personal utility of secondary germline findings. Methods: We developed a draft survey based on literature and patient interview data (n=40). We evaluated and refined the survey through cognitive interviews with advanced cancer patients who received secondary germline findings from TGP (n=10). The survey was psychometrically validated with data from two independent samples of advanced cancer patients undergoing TGP (total n=349). Results: Cognitive interviews offered opportunities for survey refinement and confirmation of its comprehensible nature. Exploratory and confirmatory factor analysis of the survey identified 16 items across three subscales with strong internal consistency (Cronbach's alpha ≥0.79): perceived utility for others, perceived utility for self and health, and confidence in secondary findings. Conclusion: We developed a novel valid scale with promise for measuring advanced cancer patients' perceptions of the utility of secondary germline findings. Innovation: We offer a new patient-derived measure of perceived utility of and confidence in secondary germline findings with potential applications for precision oncology research and clinical communication.

Exploring the caregiver's experience in an innovative homebound hematopoietic stem cell transplantation program.

OBJECTIVE: Home care for hematopoietic stem cell transplants (HSCTs), an alternative to traditional inpatient or outpatient recovery programs, is safe and feasible but may place greater demand on full-time caregivers. The goal of this study was to characterize the experiences of caregivers in a newly piloted homebound HSCT program as a means of identifying unmet needs and ensuring adequate support. METHOD: A qualitative approach was utilized. Participants created self-recorded video diaries guided by open-ended prompts at designated time points throughout recovery and participated in a single follow-up interview within four weeks post-discharge. Diaries and interviews were transcribed, analyzed, and coded to identify recurrent ideas and themes. RESULTS: Data were collected from 12 caregivers of homebound HSCT patients. Thematic content analysis yielded four themes: facilitators (external support, sense of normalcy, and patient wellness), challenges (difficulties with transplant care instructions, managing the patient's physical and emotional health, and caregiver psychological distress), roles in recovery (caregiving responsibilities), and analysis of homebound experience (positive outcomes and suggestions for improvement). SIGNIFICANCE OF RESULTS: Caregivers perceived the homebound program as offering high-quality medical care in a setting that provided a sense of normalcy, privacy, and greater level of oversight. Unmet needs included lacking preparedness in completing nursing responsibilities and handling caregiver and patient distress. While the homebound program was preferred to routine hospital care, psychotherapeutic support and programming to improve caregiver preparedness in a homebound HSCT recovery program is indicated.

Supply and Demand: Association Between Non-English Language-Speaking First Year Resident Physicians and Areas of Need in the USA.

BACKGROUND: Over 25 million US inhabitants are limited English proficient (LEP). It is unknown whether physicians fluent in non-English languages are training in geographic areas with the highest proportion of LEP people. Diversity of language ability in the physician workforce is an important complement to language assistance services for providing quality care to LEP patients. OBJECTIVE: To determine whether non-English language-speaking resident physicians matched in the geographic areas where language skills are needed. DESIGN: Cross-sectional study. PARTICIPANTS: Postgraduate medical training applicants to the Association of American Medical College's Electronic Residency Application Service in 2013-2014 (n = 50,766). We included data from the Graduate Medical Education Track database, mapped against American Community Survey data. INTERVENTIONS: N/A. MAIN MEASURES: We assessed the geographic alignment of non-English language-speaking resident physicians relative to the distribution of the LEP-speaking population. KEY RESULTS: While 37% of resident physicians spoke at least one non-English language, in most cases the languages they spoke were not those in greatest need by the US LEP population. LEP speakers' potential exposure to non-English language-speaking residents varied. For Spanish, the language with the lowest national resident physician to Spanish LEP patient ratio, the ratio was most favorable in New York at 23.7/100,000 LEP population versus 5.1 in Los Angeles. For Tagalog, the group with the highest geographic mismatch, the ratio was 70.4 in New York but 0 in San Diego, San Jose, and Seattle. Among the top five LEP languages in the USA, Chinese-speaking resident physicians were the most geographically matched. CONCLUSIONS: We found considerable misalignment of the geographic distribution of non-English language-speaking resident physicians relative to the distribution of the LEP-speaking population. Residency programs in areas of high need could consider better matching the non-English language needs of their community with the language abilities of the resident physicians they are recruiting.

Decision-Making Preferences About Secondary Germline Findings That Arise From Tumor Genomic Profiling Among Patients With Advanced Cancers.

PURPOSE: In patients with advanced cancers, tumor genomic profiling (TGP) can reveal secondary germline findings (SGFs) regarding inherited disease risks. This study examines the process by which patients with advanced cancers would make the decision about whether or not to learn these SGFs, and their preferences regarding specific challenging decision scenarios including whether patients should be required to receive SGFs and whether SGFs should be returned to family after a patient's death. PATIENTS AND METHODS: We conducted qualitative semi-structured interviews with 40 patients with advanced breast, bladder, colorectal, or lung cancer who had TGP. Data were collected regarding participants' perspectives about the hypothetical decision to learn their SGFs including their anticipated approach to the decision-making process, as well as their preferences about challenging decision scenarios. Data were evaluated using thematic content analysis. RESULTS: We identified themes regarding participants' preferred degree of decisional autonomy, perceived vital role of doctors, information needs, and anticipated process of deliberation. Although participants reported that this decision was ultimately their own, many wanted input from family and trusted others. Oncologists were expected to provide decision guidance and key clarifying information. Most participants stated that patients should be able to make a choice about receiving actionable SGFs, and a majority stated that SGFs should be available to family after a patient's death. CONCLUSION: These results provide insight into SGFs decision-making processes of patients with advanced cancers, which can allow clinicians to provide patients optimal decision support in this context. Patients with advanced cancers have specific information needs and decision-making preferences that educational and communication interventions should address to ensure that patients make informed choices about learning SGFs.