Personal legacy and treatment choices for serious illness: a scoping review.

BACKGROUND: Legacy-how one hopes to be remembered after death-is an unexplored and important dimension of decision-making for people facing serious illness. OBJECTIVES: We conducted a scoping review to answer the following research questions: (1) How do people making treatment choices conceive of legacy? and (2) What treatment choices do people make with legacy in mind? ELIGIBILITY CRITERIA: Participants included people facing serious illness who discussed how they wanted to be remembered after their own death, or how they hoped to impact others, as they made treatment choices. Studies in English published between 1990 and 2022 were included. SOURCES OF EVIDENCE: We conducted searches in electronic databases including Medline/PubMed, CINAHL, PsycInfo, SocialWork, AnthropologyPlus, Web of Science, ProQuest and EMBASE databases. DATA SYNTHESIS: We used an electronic screening tool to screen abstracts and review full-text articles suitable for inclusion. We analysed included articles using Atlas.ti. We constructed tables and narratively synthesised the findings. RESULTS: We identified three major intersecting legacy goals that influence choices people facing serious illness make about their treatment and health behaviours, and the types of choices people make with legacy in mind. The three legacy goals are: remembrance of the individual self, remembrance of the social self and impact on others' well-being. CONCLUSIONS: We identify the importance of legacy to patient treatment choices. Understanding for whom this construct is important, what types of legacy goals people hold and how those goals impact treatment choices is necessary to provide patient-centred whole-person care to people facing serious illness.

Expanding research on the impact of financial hardship on emotional well-being: guidance of diverse stakeholders to the Emotional Well-Being and Economic Burden of Disease (EMOT-ECON) Research Network.

The Emotional Well-Being and Economic Burden (EMOT-ECON) Research Network is one of six research networks funded by the National Institutes of Health (NIH) to advance research about emotional well-being (EWB), and the only one that focuses on addressing how economic burden due to disease or illness affects EWB. The network convened researchers, patients, patient advocates, health care providers and other stakeholders from across the US to discuss the significance of addressing the impact of the economic burden of disease on EWB, the complexity of this prevalent problem for patients and families, and the research gaps that still need to be studied to ultimately develop strategies to reduce the impact of economic burden of disease on EWB and health. Participants identified some important future areas of research as those investigating: (i) prevalent and relevant emotions for patients experiencing economic burden of disease and financial hardship, and how their broader outlook on life is impacted; (ii) constructs and contexts that influence whether the economic burden is stressful; (iii) strategies to deal and cope and their positive or negative effects on EWB and health; and (iv) multi-level and multi-stakeholder interventions to address economic factors (e.g., costs, ability to pay), administrative burdens, education and training, and especially patients' emotional as well as financial status.

Identifying Individual and Clinic Characteristics Associated With Primary Care Provider Turnover During Implementation of the Veterans Health Administration Patient-Centered Medical Home.

Understanding which factors predict primary care provider (PCP) turnover can help organizations prepare for PCP shortages. We conducted a retrospective cohort study of Veteran Health Administration PCPs between 2012 and 2016. We analyzed whether 7 domains of the patient centered medical home (PCMH) implementation-including access, care coordination, comprehensiveness, self-management support, communication, shared decision-making, and team-based care-were associated with PCP turnover. We found that 2 domains of PCMH (access and self-management) were associated with lower turnover, which may reflect that practice cultures that support these characteristics may lower PCP turnover.

Skin Cancer Screening: Updated Evidence Report and Systematic Review for the US Preventive Services Task Force.

Importance: Skin cancer is the most common cancer type and is a major cause of morbidity. Objective: To systematically review the benefits and harms of screening for skin cancer to inform the US Preventive Services Task Force. Data Sources: MEDLINE, Embase, and the Cochrane Central Register of Controlled Trials from June 1, 2015, through January 7, 2022; surveillance through December 16, 2022. Study Selection: English-language studies conducted in asymptomatic populations 15 years or older. Data Extraction and Synthesis: Two reviewers independently appraised the articles and extracted relevant data from fair- or good-quality studies; results were narratively summarized. Main Outcomes and Measures: Morbidity; mortality; skin cancer stage, precursor lesions, or lesion thickness at detection; harms of screening. Results: Twenty studies in 29 articles were included (N = 6 053 411). Direct evidence on screening effectiveness was from 3 nonrandomized analyses of 2 population-based skin cancer screening programs in Germany (n = 1 791 615) and suggested no melanoma mortality benefit at the population level over 4 to 10 years' follow-up. Six studies (n = 2 935 513) provided inconsistent evidence on the association between clinician skin examination and lesion thickness or stage at diagnosis. Compared with usual care, routine clinician skin examination was not associated with increased detection of skin cancer or precursor lesions (5 studies) or stage at melanoma detection (3 studies). Evidence on the association between clinician skin examination and lesion thickness at detection was inconsistent (3 studies). Nine studies (n = 1 326 051) found a consistent positive association between more advanced stage at melanoma detection and increasing risk of melanoma-associated and all-cause mortality. Two studies (n = 232) found little to no persistent cosmetic or psychosocial harms associated with screening. Conclusions and Relevance: A substantial nonrandomized evidence base suggests a clear association between earlier stage at skin cancer detection and decreased mortality risk. However, nonrandomized studies suggest little to no melanoma mortality benefit associated with skin cancer screening with visual skin examination in adolescents or adults and no association between routine clinician skin examination and earlier stage at melanoma detection. Evidence is inconsistent regarding whether clinician skin examination is associated with thinner melanoma lesions at detection.

Human-Centered Design Study to Inform Traceback Cascade Genetic Testing Programs at Three Integrated Health Systems.

INTRODUCTION: A traceback genetic testing program for ovarian cancer has the potential to identify individuals with hereditary breast and ovarian cancer and their relatives. Successful implementation depends on understanding and addressing the experiences, barriers, and preferences of the people served. METHODS: We conducted a remote, human-centered design research study of people with ovarian, fallopian tube, or peritoneal cancer (probands) and people with a family history of ovarian cancer (relatives) at three integrated health systems between May and September 2021. Participants completed activities to elicit their preferences about ovarian cancer genetic testing messaging and to design their ideal experience receiving an invitation to participate in genetic testing. Interview data were analyzed using a rapid thematic analysis approach. RESULTS: We interviewed 70 participants and identified five preferred experiences for a traceback program. Participants strongly prefer discussing genetic testing with their doctor but are comfortable discussing with other clinicians. The most highly preferred experience for both probands and relatives was to discuss with a knowledgeable clinician who could answer questions, followed by directed (sent directly to specific people) or passive (shared in a public area) communication. Repeated contact was acceptable for reminders. CONCLUSION: Participants were open to receiving information about traceback genetic testing and recognized its value. Participants preferred discussing genetic testing with a trusted clinician. Directed communication was preferable to passive communication. Other valued information included how genetic tests help their family and the cost of genetic testing. These findings are informing traceback cascade genetic testing programs at all three sites.

Feasibility of using an app-based coaching intervention to improve provider communication about HPV vaccination.

Provider communication training is effective for increasing HPV vaccination rates among U.S. adolescents. However, such trainings often rely on in-person meetings, which can be burdensome for providers and costly to implement. To evaluate the feasibility of Checkup Coach, an app-based coaching intervention, to improve provider communication about HPV vaccination. In 2021, we offered Checkup Coach to providers in 7 primary care clinics in a large integrated delivery system. Participating providers (n = 19) attended a 1-h interactive virtual workshop that taught 5 high-quality practices for recommending HPV vaccination. Providers then had 3 months of access to our mobile app, which offered ongoing communication assessments, tailored tips for addressing parents' concerns, and a dashboard of their clinic's HPV vaccination coverage. Online surveys assessed pre-/post-intervention changes in providers' perceptions and communication behaviors. Compared to baseline, more providers reported high-quality HPV vaccine recommendation practices at 3-month follow-up (47% vs. 74%, p < .05). Providers' knowledge, self-efficacy, and shared commitment to improving HPV vaccination also improved (all p < .05). Although we found improvements in several other cognitions after the workshop, these changes did not retain statistical significance at 3 months. About three-quarters (78%) of providers used the mobile app, logging 2.3 sessions on average. Most providers agreed the app was easy to use (mean = 4.7/5.0), a convenient way to get vaccination data (mean = 4.6/5.0), and a tool they would recommend (mean = 4.3/5.0). Our app-based coaching intervention demonstrated feasibility and warrants additional evaluation as a novel mode for training providers to improve their HPV vaccine communication.

The aim of this study was to evaluate the feasibility of Checkup Coach, an app-based coaching intervention to improve provider communication about HPV vaccination, by offering the app to providers in 7 primary care clinics in a large integrated delivery system. Participating providers attended a 1-h interactive virtual workshop that taught high-quality HPV vaccine recommendation practices. For the following 3 months, providers used the app for ongoing communication assessments, tailored tips for addressing parents' concerns, and a dashboard of their clinic's HPV vaccination rates. Online surveys assessed pre- and post-intervention changes in providers' perceptions and communication practices. The percentage of providers reporting high-quality HPV vaccine recommendation practices increased from baseline to follow-up. Providers also reported higher HPV vaccine-related knowledge, self-efficacy, and shared commitment at 3 months. Providers agreed that the app was easy to use, a convenient way to get vaccination data, and a tool they would recommend. Our app-based coaching intervention demonstrated feasibility and warrants additional evaluation as a novel mode for training providers to improve their HPV vaccine communication.

A synthesis of qualitative studies on patient and caregiver experiences with cognitive impairment screening and diagnosis.

OBJECTIVES: To understand patient and caregiver perspectives on the experience of being screened or diagnosed with cognitive impairment to inform preventive clinical care. METHODS: Systematic review and synthesis of qualitative studies with searches in Ovid MEDLINE ALL, EBSCOHost CINAHL, and Scopus in February 2021. Included studies were assessed for quality and coded with descriptive, deductive, and inductive codes and findings were rated using GRADE-CER-qual. RESULTS: We included 15 qualitative studies representing 153 patients and 179 caregivers. Most studies involved in-depth interviews. No studies examined screening experiences for older adults presenting without cognitive function concerns; nearly all patients received a diagnosis of cognitive impairment. Seven themes emerged with moderate to high confidence. Findings showed the role of caregivers in pursuing assessment and its benefits in validating concerns and for future planning. Patients were less inclined to be evaluated, fearing judgements or social consequences from the diagnostic label. Caregivers and patients were at times frustrated with the assessment process yet believed it might result in treatments to cure or slow disease progression. CONCLUSION: Clinicians and care systems can support caregivers and patients by providing timely and informative resources to support their shared and separate motivations, needs, and concerns.

Conceptions of Legacy Among People Making Treatment Choices for Serious Illness: Protocol for a Scoping Review.

BACKGROUND: Legacy-what one leaves behind and how one hopes to be remembered after death-is an unexplored and important dimension of decision-making for people facing serious illnesses. A preliminary literature review suggests that patients facing serious illness consider legacy when making medical decisions, for example, forgoing expensive treatment with limited or unknown clinical benefit to preserve one's inheritance for their children. To date, very little is known about the conceptual foundations of legacy. No conceptual frameworks exist that provide a comprehensive understanding of how legacy considerations relate to patient choices about their medical care. OBJECTIVE: The objective of this scoping review is to understand the extent and type of research addressing the concept of legacy by people facing serious illness to inform a conceptual framework of legacy and patient treatment choices. METHODS: This protocol follows the guidelines put forth by Levac et al, which expands the framework introduced by Arksey and O'Malley, as well as the Joanna Briggs Institute Reviewer's manual. This scoping review will explore several electronic databases including PubMed, Medline, CINAHL, Cochrane Library, PsycINFO, and others and will include legacy-specific gray literature, including dissertation research available via ProQuest. An initial search will be conducted in English-language literature from 1990 to the present with selected keywords to identify relevant articles and refine the search strategy. After the search strategy has been finalized, 2 independent reviewers will undertake a 2-part study selection process. In the first step, reviewers will screen article titles and abstracts to identify the eligibility of each article based on predetermined exclusion or inclusion criteria. A third senior reviewer will arbitrate discrepancies regarding inclusions or exclusions. During the second step, the full texts will be screened by 2 reviewers, and only relevant articles will be kept. Relevant study data will be extracted, collated, and charted to summarize the key findings related to the construct of legacy. RESULTS: This study will identify how people facing serious illness define legacy, and how their thinking about legacy impacts the choices they make about their medical treatments. We will note gaps in the literature base. The findings of this study will inform a conceptual model that outlines how ideas about legacy impact the patient's treatment choices. The results of this study will be submitted to an indexed journal. CONCLUSIONS: Very little is known about the role of legacy in the treatment decisions of patients across the continuum of serious illness. In particular, no comprehensive conceptual model exists that would provide an understanding of how legacy is considered by people making decisions about their care during serious illness. This study will be among the first to construct a conceptual model detailing how considerations of legacy impact medical decision-making for people facing or living with serious illnesses. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/40791.

Feasibility, acceptability, and limited efficacy of health system-led familial risk notification: protocol for a mixed-methods evaluation.

BACKGROUND: Genetic testing for pathogenic variants associated with hereditary breast and ovarian cancer risk can improve cancer outcomes through enhanced preventive care in both people with known variants and their biologic relatives. Cascade screening-the process of case-finding in relatives by notifying and inviting them to consider testing-currently relies on the patient to notify their own at-risk relatives. However, many of these relatives never learn they might be at risk. We developed and implemented a new health system-led familial genetic risk notification process where the care team offers to contact at-risk relatives directly. This protocol describes a study to assess the feasibility, acceptability, and limited efficacy of this intervention. METHODS: This feasibility study will use a single-arm, nonrandomized, mixed-methods prospective design. We will enroll two groups of participants: probands and relatives of probands. Eligible probands are currently enrolled Kaiser Permanente Washington (KPWA) members with an upcoming appointment for pre-test genetic counseling for hereditary Lynch syndrome, breast, or ovarian cancer. Eligible relatives, who do not have to be KPWA members, are first-and second-degree relatives of probands. During the appointment with the proband, the genetic counselor will determine whether the proband is appropriate for genetic testing and if so, which relatives might benefit from cascade testing. The genetic counselor then will offer to contact any or all identified relatives directly to discuss genetic risk and testing. The primary outcome of this study is the feasibility of the implemented familial notification process, which we will measure using quantitative and qualitative data on intervention reach, intervention acceptability, and limited efficacy. Analyses will be primarily descriptive and exploratory, with the intent of preparing for a future, larger trial of direct contact interventions. DISCUSSION: Our findings will provide new, foundational evidence for the creation of US-based familial notification systems that directly address logistical and ethical challenges while prioritizing the preferences of patients and families.

Environmental scan of family chart linking for genetic cascade screening in a U.S. integrated health system.

Background: An alternative to population-based genetic testing, automated cascade genetic testing facilitated by sharing of family health history, has been conceptualized as a more efficient and cost-effective approach to identify hereditary genetic conditions. However, existing software and applications programming interfaces (API) for the practical implementation of this approach in health care settings have not been described. Methods: We reviewed API available for facilitating cascade genetic testing in electronic health records (EHRs). We emphasize any information regarding informed consent as provided for each tool. Using semi-structured key informant interviews, we investigated uptake of and barriers to integrating automated family cascade genetic testing into the EHR. Results: We summarized the functionalities of six tools related to utilizing family health history to facilitate cascade genetic testing. No tools were explicitly capable of facilitating family cascade genetic testing, but few enterprise EHRs supported family health history linkage. We conducted five key informant interviews with four main considerations that emerged including: 1) incentives for interoperability, 2) HIPAA and regulations, 3) mobile-app and alternatives to EHR deployment, 4) fundamental changes to conceptualizing EHRs. Discussion: Despite the capabilities of existing technology, limited bioinformatic support has been developed to automate processes needed for family cascade genetic testing and the main barriers for implementation are nontechnical, including an understanding of regulations, consent, and workflow. As the trade-off between cost and efficiency for population-based and family cascade genetic testing shifts, the additional tools necessary for their implementation should be considered.

The Cancer Financial Experience (CAFÉ) study: randomized controlled trial of a financial navigation intervention to address cancer-related financial hardship.

BACKGROUND: There is an urgent need for evidence on how interventions can prevent or mitigate cancer-related financial hardship. Our objectives are to compare self-reported financial hardship, quality of life, and health services use between patients receiving a financial navigation intervention versus a comparison group at 12 months follow-up, and to assess patient-level factors associated with dose received of a financial navigation intervention. METHODS: The Cancer Financial Experience (CAFÉ) study is a multi-site randomized controlled trial (RCT) with individual-level randomization. Participants will be offered either brief (one financial navigation cycle, Arm 2) or extended (three financial navigation cycles, Arm 3) financial navigation. The intervention period for both Arms 2 and 3 is 6 months. The comparison group (Arm 1) will receive enhanced usual care. The setting for the CAFÉ study is the medical oncology and radiation oncology clinics at two integrated health systems in the Pacific Northwest. Inclusion criteria includes age 18 or older with a recent cancer diagnosis and visit to a study clinic as identified through administrative data. Outcomes will be assessed at 12-month follow-up. Primary outcomes are self-reported financial distress and health-related quality of life. Secondary outcomes are delayed or foregone care; receipt of medical financial assistance; and account delinquency. A mixed methods exploratory analysis will investigate factors associated with total intervention dose received. DISCUSSION: The CAFÉ study will provide much-needed early trial evidence on the impact of financial navigation in reducing cancer-related financial hardship. It is theory-informed, clinic-based, aligned with patient preferences, and has been developed following preliminary qualitative studies and stakeholder input. By design, it will provide prospective evidence on the potential benefits of financial navigation on patient-relevant cancer outcomes. The CAFÉ trial's strengths include its broad inclusion criteria, its equity-focused sampling plan, its novel intervention developed in partnership with clinical and operations stakeholders, and mixed methods secondary analyses related to intervention dose offered and dose received. The resulting analytic dataset will allow for rich mixed methods analysis and provide critical information related to implementation of the intervention should it prove effective. TRIAL REGISTRATION: ClinicalTrials.gov NCT05018000 . August 23, 2021.

Perspectives on Training and Working in the VHA: Implications for Primary Care Physician Recruitment and Retention.

PURPOSE: The primary care physician shortage in the United States presents significant challenges for health systems seeking to maintain a sufficient primary care workforce. Perspectives on training or working in primary care in the Veterans Health Administration (VHA) may yield insights into strategic recruitment to make the VHA and other health systems more attractive to primary care physicians. The authors sought to understand the experiences of resident and staff physicians with limited tenure within VHA primary care to identify factors to guide health systems in improving recruitment and retention. METHOD: This qualitative exploratory study was conducted from June 2018 to October 2019 with 24 internal medicine residents and 30 staff physicians in VHA primary care. Heterogeneity was ensured by sampling for geographical region, rurality, and gender within each cohort. The authors conducted semistructured interviews to ascertain perspectives on training and employment preferences at VHA and non-VHA sites. Combined content analysis was used to generate findings. RESULTS: The authors identified 4 key themes, centered around shared values and the VHA's mission-driven culture: the VHA "community" was perceived as unique and a major contributor to job satisfaction; facility-level leadership support was important to perceptions of workplace culture around harassment; the VHA primary care delivery model allowed residents and staff physicians to get patients needed care but did not always live up to its potential; and VHA employment was better than expected, but the process of getting hired was a challenge. CONCLUSIONS: Mission and workplace culture may serve important roles in the desirability of health systems for prospective physicians and the job satisfaction of physicians who work in these systems. Physician recruitment efforts based on these attributes may yield the most success in maintaining a sufficient physician workforce.

Identifying and Prioritizing Workplace Climate Predictors of Burnout Among VHA Primary Care Physicians.

OBJECTIVE: Burnout, or job-related stress, affects more than half of all US physicians, with primary care physicians (PCPs) experiencing some of the highest rates in medicine. Our study analyzes national survey data to identify and prioritize workplace climate predictors of burnout among PCPs within a large integrated health system. DESIGN: Observational study of annual survey data from the Veterans Health Administration (VHA) All Employee Survey (AES) for 2013-2017. AES response rate ranged from 56 to 60% during the study period. Independent and dependent variables were measured from separate random samples. In total, 8,456 individual-level responses among PCPs at 110 VHA practice sites were aggregated at the facility level by reporting year. We used the semi-automated LASSO procedure to identify workplace climate measures that were more influential in predicting burnout and assessed relative importance using the Shapely value decomposition. PARTICIPANTS: VHA employees that self-identify as PCPs. MAIN MEASURES: Dependent variables included two dichotomous measures of burnout: emotional exhaustion and depersonalization. Independent measures included 30 survey measures related to dimensions of workplace climate (e.g., workload, leadership, satisfaction). RESULTS: We identified seven influential workplace climate predictors of emotional exhaustion and nine predictors of depersonalization. With few exceptions, higher agreement/satisfaction scores for predictors were associated with a lower likelihood of burnout. The majority of explained variation in emotional exhaustion was attributable to perceptions of workload (32.6%), organization satisfaction (28.2%), and organization support (19.4%). The majority of explained variation in depersonalization was attributable to workload (25.3%), organization satisfaction (22.9%), and connection to VHA mission (20.7%). CONCLUSION: Identifying the relative importance of workplace climate is important for the allocation of health organization resources to mitigate and prevent burnout within the PCP workplace. In a context of limited resources, efforts to reduce perceived workload and improve organization satisfaction may represent the biggest leverage points for health organizations to address physician burnout.

An Examination of the Ethical and Legal Limits in Implementing "Traceback Testing" for Deceased Patients.

This paper examines the legal and ethical aspects of traceback testing, a process in which patients who have been previously diagnosed with ovarian cancer are identified and offered genetic testing so that their family members can be informed of their genetic risk and can also choose to undergo testing. Specifically, this analysis examines the ethical and legal limits in implementing traceback testing in cases when the patient is deceased and can no longer consent to genetic testing.

Feasibility of a Traceback Approach for Using Pathology Specimens to Facilitate Genetic Testing in the Genetic Risk Analysis in Ovarian Cancer (GRACE) Study Protocol.

Guidelines currently state that genetic testing is clinically indicated for all individuals diagnosed with ovarian cancer. Individuals with a prior diagnosis of ovarian cancer who have not received genetic testing represent missed opportunities to identify individuals with inherited high-risk cancer variants. For deceased individuals, post-mortem genetic testing of pathology specimens allows surviving family members to receive important genetic risk information. The Genetic Risk Assessment in Ovarian Cancer (GRACE) study aims to address this significant healthcare gap using a "traceback testing" approach to identify individuals with a prior diagnosis of ovarian cancer and offer genetic risk information to them and their family members. This study will assess the potential ethical and privacy concerns related to an ovarian cancer traceback testing approach in the context of patients who are deceased, followed by implementation and evaluation of the feasibility of an ovarian cancer traceback testing approach using tumor registries and archived pathology tissue. Descriptive and statistical analyses will assess health system and patient characteristics associated with the availability of pathology tissue and compare the ability to contact and uptake of genetic testing between patients who are living and deceased. The results of this study will inform the implementation of future traceback programs.

Penetrance of Breast Cancer Susceptibility Genes From the eMERGE III Network.

Background: Unbiased estimates of penetrance are challenging but critically important to make informed choices about strategies for risk management through increased surveillance and risk-reducing interventions. Methods: We studied the penetrance and clinical outcomes of 7 breast cancer susceptibility genes (BRCA1, BRCA2, TP53, CHEK2, ATM, PALB2, and PTEN) in almost 13 458 participants unselected for personal or family history of breast cancer. We identified 242 female participants with pathogenic or likely pathogenic variants in 1 of the 7 genes for penetrance analyses, and 147 women did not previously know their genetic results. Results: Out of the 147 women, 32 women were diagnosed with breast cancer at an average age of 52.8 years. Estimated penetrance by age 60 years ranged from 17.8% to 43.8%, depending on the gene. In clinical-impact analysis, 42.3% (95% confidence interval = 31.3% to 53.3%) of women had taken actions related to their genetic results, and 2 new breast cancer cases were identified within the first 12 months after genetic results disclosure. Conclusions: Our study provides population-based penetrance estimates for the understudied genes CHEK2, ATM, and PALB2 and highlights the importance of using unselected populations for penetrance studies. It also demonstrates the potential clinical impact of genetic testing to improve health care through early diagnosis and preventative screening.

Patient and Family Preferences on Health System-Led Direct Contact for Cascade Screening.

Health benefits to relatives of people at known genetic risk for hereditary cancer syndromes is key to realizing the promise of precision medicine. We conducted a qualitative study to design a patient- and family-centered program for direct contact of relatives to recommend cascade genetic testing. We conducted two rounds of data collection using focus groups followed by individual interviews with patients with HBOC or Lynch syndrome and a separate sample of people with a family history of hereditary cancers. Results indicate that U.S.-based health system-led direct contact of relatives is acceptable to patients and families, should take a programmatic approach, include consent of relatives before proband testing, complement to existing patient-mediated disclosure, and allow for relative control of information. Our findings suggest a set of requirements for U.S.-based direct contact programs that could ultimately benefit more relatives than current approaches.

Feasibility and Assessment of a Cascade Traceback Screening Program (FACTS): Protocol for a Multisite Study to Implement and Assess an Ovarian Cancer Traceback Cascade Testing Program.

Ovarian cancer (OVCA) patients may carry genes conferring cancer risk to biological family; however, fewer than one-quarter of patients receive genetic testing. "Traceback" cascade testing -outreach to potential probands and relatives-is a possible solution. This paper outlines a funded study (U01 CA240747-01A1) seeking to determine a Traceback program's feasibility, acceptability, effectiveness, and costs. This is a multisite prospective observational feasibility study across three integrated health systems. Informed by the Conceptual Model for Implementation Research, we will outline, implement, and evaluate the outcomes of an OVCA Traceback program. We will use standard legal research methodology to review genetic privacy statutes; engage key stakeholders in qualitative interviews to design communication strategies; employ descriptive statistics and regression analyses to evaluate the site differences in genetic testing and the OVCA Traceback testing; and assess program outcomes at the proband, family member, provider, system, and population levels. This study aims to determine a Traceback program's feasibility and acceptability in a real-world context. It will account for the myriad factors affecting implementation, including legal issues, organizational- and individual-level barriers and facilitators, communication issues, and program costs. Project results will inform how health care providers and systems can develop effective, practical, and sustainable Traceback programs.

Usefulness of mobile apps for communication of genetic test results to at-risk family members in a U.S. integrated health system: a qualitative approach from user-testing.

OBJECTIVE: To assess the usefulness a mobile based application to send genetic test results to at-risk family members in a U.S. integrated health system. METHODS: We conducted semi-structured in-person interviews with members of Kaiser Permanente Washington who had enrolled in a prospective study and received genetic test results. Participants were given the task to use the app and comment on the experience. The moderator asked participants to share perspectives on the usefulness of a mobile based app and their lived experiences of sharing their test results with family members. RESULTS: Fourteen study participants who had undergone genetic testing were interviewed. Four primary themes emerged as relevant to the use of mobile-based apps as a tool for communicating genetic test results to at-risk family members: (i) Participants felt a sense of obligation to share positive test results with relatives; (ii) Participants felt that the advantages of using email were similar to those of the app; (iii) Participants felt that younger individuals would be more comfortable with an app; and, (iv) Participants felt they could use the app independently and in their own time. CONCLUSION: A mobile based app could be used as a tool to improve cascade screening for pathogenic/likely pathogenic test results. The benefits of such a tool are likely greatest among relatives still at the stage of family planning, as well as among family members with strained relationships. There would be minimal burden on the system to offer a mobile based app as a tool.