Introduction:In the USA, patients who undergo genetictesting for hereditary cancer risk are responsible for informingrelatives about their genetic test results, but many relativesneverfind out they might be at risk. A health system-mediatedrelative notification program might helpfill this gap, butquestions remain about the acceptability of this approach.Methods:We analyzed qualitative data from a single-arm,nonrandomized, mixed-methods study to understand howpatients and families experienced a new health system-mediated relative notification program. We invited all studyparticipants to participate in semi-structured telephone in-terviews at 6-8 weeks after return of genetic test results. Weused a template analysis approach to thematically analyzeinterview transcripts.Results:We interviewed 32 participants,including 17 probands and 15 relatives. Relatives reportedpositive experiences with the notification program, notingthey felt in control of decisions and appreciated geneticcounselor involvement in communicating the proband'stestresults. Benefits of direct contact included reduced burden forprobands, increased family discussions about health, andnotification of relatives who otherwise would not have learnedresults. No participants reported adverse effects from theprogram.Conclusion:Overall, the relative notification programwas acceptable to participants and supported probands inreaching at-risk relatives who otherwise might not have beennotified. Thesefindings could inform the implementation offuture genetic risk family notification programs with the po-tential to improve uptake of cascade testing and advancecancer prevention and early detection efforts.(c) 2024 The Author(s).Published by S. Karger AG, Basel
Evidence suggests fetal risks are associated with cannabis use during pregnancy. Yet, insights into women's decision-making and cannabis use during pregnancy are limited. This study explored these concepts with postpartum women who used cannabis during and after pregnancy. We conducted interviews with 15 women (4 self-identifying a race other than White and 4 self-identifying Hispanic ethnicity) who: 1) lived in the Puget Sound region of Washington State, 2) reported past-year cannabis use on a routine screen, and 3) had documented pregnancy and delivery March 2015-May 2017. Semi-structured interviews asked about decision-making and cannabis use during pregnancy and postpartum. We used template analysis for coding and analysis. The key findings included that women: 1) gathered information about cannabis use during pregnancy primarily through internet searches and discussions with peers; 2) were reluctant to talk with health care providers about cannabis; 3) used cannabis while pregnant to treat health issues, including morning sickness, pain, and mental health conditions; 4) were comfortable with their decision to use cannabis while pregnant, but had questions about long-term effects; and 5) tried to mitigate transmission through breastmilk. Women decided about cannabis during pregnancy based on their experience, health symptoms, and information gathered from the internet and peers, often without guidance from their health care provider. Results point to opportunities for providers to become informed about and engage in discussion with patients about cannabis use during preconception, pregnancy, and postpartum.
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.
172 Background: CAFÉ is a three-arm randomized controlled trial testing whether financial navigation for people with cancer improves quality of life and financial distress compared to enhanced usual care at two integrated health systems (Kaiser Permanente Washington, KPWA; and Kaiser Permanente Northwest, KPNW). Our current objective was to describe financial concerns reported by a subset of participants enrolled and receiving financial navigation in the trial. Methods: We descriptively summarized the financial concerns in participants randomized to receive financial navigation between August 2021 and May 2022 (Total n = 135; KPWA = 75 and KPNW = 60). Participants received either one or three proactive outreach with financial concerns assessment plus any participant-initiated assessment. Navigators followed up with personalized liaison and warm handoff to resources and coordinated with oncology care team and organizational partners about participant cost concerns. We used the study’s bespoke REDCap database, including participant sociodemographic and clinical characteristics and discrete notes entered by CAFE financial navigators. During financial concerns assessments, CAFE navigators recorded the type of each concern: planning and budgeting; care decision-making; or acute financial needs; resource referrals provided; and time to concern resolution. Results: The sample was 36% male; mean age 61 years; and 62% married or living with a partner. Self-reported race/ethnicity was 9% Black, 15% other, and 76% White; 6% reported Hispanic/Latino ethnicity. 43% reported less than four-year college education. Cancer types were 38% breast; 16% prostate; 6% colorectal; 4% lung; and 36% other types. 5% had Medicaid and 44% Medicare. 58% reported < $75,000 total family income in 2021. 16% were enrolled in the KP medical financial assistance (MFA) program. Navigators documented 179 assessments. Number of concerns/participant ranged from zero to 5 (mean = 1.3 concerns/participant). Participants reported a financial concern at 61% of assessments. The most common concern was planning/budgeting (68%), followed by acute financial needs (28%) and care decision-making (3%). Mean time-to-resolution was 22 days (planning/budgeting); 27 days (acute needs) and 33 days (clinical decision-making). The most common resource referrals included the KP MFA (77 times); coordination with KP member services (73 times) (e.g., for cost estimates), community resource navigators (35 times) and nurse navigators (25), and patient financial services (i.e. billing, 10). Conclusions: Proactive assessment by oncology financial navigators identifies financial concerns related to planning for cancer care expenses and acute financial needs. Concerns related to financial hardship as a factor in clinical decision-making were rare. Resource referrals varied by concern type, with time-to-resolution ranging from 22-33 days. Clinical trial information: NCT05018000.
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.
Purpose Missing data is common in electronic health records (EHR)-based obesity research. To avoid bias, it is critical to understand mechanisms that underpin missingness. We conducted a survey among bariatric surgery patients in three integrated health systems to (i) investigate predictors of disenrollment and (ii) examine differences in weight between disenrollees and enrollees at 5 years. Materials and Methods We identified 2883 patients who had bariatric surgery between 11/2013 and 08/2014. Patients who disenrolled before their 5-year anniversary were invited to participate in a survey to ascertain reasons for disenrollment and current weight. Logistic regression was used to investigate predictors of disenrollment. Five-year percent weight change distributions were estimated using inverse-probability weighting to adjust for (un)availability of EHR weight data at 5 years among enrollees and survey (non-)response among disenrollees. Results Among 536 disenrolled patients, 104 (19%) completed the survey. Among 2347 patients who maintained enrollment, 384 (16%) had no weight measurement in the EHR near 5 years. Insurance, age, Hispanic ethnicity, and site predicted disenrollment. Disenrollees had slightly greater weight loss than enrollees. Conclusion We found little evidence of weight loss differences by enrollment status. Collecting information through surveys can be an effective tool to investigate and adjust for missingness in EHR-based studies.