Nora Beidler Henrikson

Kaiser Permanente Washington Health Research Institute · Group Health Research Institute

Introduction Implementation science frameworks with a focus on health equity have emerged to help guide the introduction of new interventions into healthcare and community settings while limiting health disparities. The purpose of this research was to explore the applicability of such frameworks to guide the equitable implementation of population g...

172 Background: Cancer Financial Experience (CAFÉ) is a multi-site, three-arm randomized controlled trial to test the impact of a novel financial navigation intervention on financial distress among cancer patients. We compared the baseline prevalence of financial distress among CAFÉ trial participants, using two instruments (InCharge and COST), and...

348 Background: There is great variation in how post-treatment financial consequences have been conceptualized and measured. This scoping review characterized the terms and measures used to capture the financial experiences of post-treatment cancer survivors. Methods: Reported according to PRISMA-ScR, electronic searches for published literature we...

Purpose: Cancer-related financial hardship is prevalent and associated with poor health outcomes. CAFÉ is a multi-site randomized control trial (RCT) testing a financial navigation intervention to reduce financial hardship for people newly diagnosed with cancer. Methods: The CAFÉ trial randomized participants to usual care or one of two interventio...

Clinical trials continue to struggle with recruiting diverse participants that include historically underrepresented and minoritized patients, who are typically patients in non-white racial and ethnic groups and have low income (Medicaid). Enrolling diverse participants will benefit the health sciences by providing more generalizable findings. The...

Simple Summary The improvement in genetic testing uptake for ovarian cancer faces barriers, such as deficiency in access to genetic testing and counseling, lack of referral, and poor follow-up to completion. Genetic risk information can be utilized to guide risk reduction strategies and management during ovarian cancer treatment. The Genetic Risk A...

Aim: This qualitative study refined a conceptual model of financial hardship and developed measures corresponding to model constructs. Methods: Eighteen women with breast cancer recruited through a comprehensive cancer center completed interviews. A qualitative framework analysis was conducted of the interviews. Results: Participants experienced va...

Implementation science frameworks with a focus on health equity have emerged to help guide the introduction of new interventions into healthcare and community settings while limiting health disparities. The purpose of this research was to explore the applicability of such frameworks to guide the equitable implementation of population genetic screen...

Current guidelines state that genetic testing is clinically indicated for all individuals diagnosed with ovarian cancer (OC). Individuals with a prior diagnosis of OC who have not received genetic testing represent missed opportunities to identify individuals and their families with inherited variants that put them at a higher risk for cancer. The...

Objective Data from DNA genotyping via a 96-SNP panel in a study of 25,015 clinical samples were utilized for quality control and tracking of sample identity in a clinical sequencing network. The study aimed to demonstrate the value of both the precise SNP tracking and the utility of the panel for predicting the sex-by-genotype of the participants,...

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...

283 Background: Legacy—how one hopes to be remembered and how one impacts others after death—is an unexplored and important dimension of care decision-making for people facing serious illness. This study examined 1) how people with cancer facing serious illness conceive of legacy, 2) the types of treatment choices people make with legacy in mind an...

279 Background: Cancer-related financial hardship is prevalent and associated with poor health outcomes. CAFÉ is a multi-site randomized control trial (RCT) testing a financial navigation intervention to reduce financial hardship for people newly diagnosed with cancer. Methods: The CAFÉ trial randomized participants (n=371) to usual care or one of...

198 Background: Financial hardship after cancer diagnosis is common and leads to earlier mortality and worse quality of life. This qualitative study sought to identify causal and protective factors for financial hardship as part of a larger study to refine a theoretical model and measure of financial hardship. Methods: We recruited female breast ca...

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, pat...

6646 Background: Patients with cancer face potentially high out-of-pocket costs associated with their medical care, which may lead to adverse medical and financial outcomes. Depending on their health insurance plan, patients may have to pay several thousands for medical care costs until they reach the annual maximum out-of-pocket [MOOP] spending li...

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,...

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 H...

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 ethi...

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-cent...

People choose how and if to generate and disclose not just personal genomic data, but also multiple other types of personal health and non-health related data. To contextualize choices about genetic testing and genetic data disclosure, we explored perspectives of genomic data privacy and disclosure compared to other types of data. We conducted a qu...

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 fo...

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 practic...

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—curre...

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 treatm...

Current guidelines 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. The Genetic Risk Assessment in Ovarian Ca...

e13527 Background: As efforts to reduce financial hardship within oncology settings increase, development of multidisciplinary approaches based on principles of care coordination – effective communication, shared goals, role clarity, handoff – are essential. Cancer Financial Experiences (CAFÉ) is a randomized controlled trial [NCT05018000] of a fin...

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...

Precision medicine presents challenges for effective return of results (ROR) to patients, particularly for variants of uncertain significance (VUS) where the need for genetic counseling and the impact of results are underexplored. We investigated patients' experiences with VUS ROR. Through interviews we compared experiences of patients who were ref...

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 g...

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 pro...

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 f...

Importance Colorectal cancer (CRC) remains a significant cause of morbidity and mortality in the US. Objective To systematically review the effectiveness, test accuracy, and harms of screening for CRC to inform the US Preventive Services Task Force. Data Sources MEDLINE, PubMed, and the Cochrane Central Register of Controlled Trials for relevant...

Background Unbiased estimates of penetrance are challenging, but are 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 seven breast cancer susceptibility genes (BRCA1, BRCA2, TP53, CHEK2, ATM,...

We studied the penetrance and clinical outcomes of seven breast cancer susceptibility genes ( BRCA1, BRCA2, TP53, CHEK2, ATM, PALB2 and PTEN ) in almost 25,000 participants unselected for personal or family history of breast cancer. We identified 420 participants with pathogenic or likely pathogenic variants, and 147 were women who did not previous...

Background: Evidence-based interventions (EBIs) could reduce cervical cancer deaths by 90%, colorectal cancer deaths by 70%, and lung cancer deaths by 95% if widely and effectively implemented in the USA. Yet, EBI implementation, when it occurs, is often suboptimal. This manuscript outlines the protocol for Optimizing Implementation in Cancer Cont...

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 w...

Purpose: We sought to determine preferences of biobank participants whose samples were tested for clinically actionable variants but did not respond to an initial invitation to receive results. Methods: We recontacted a subsample of participants in the Kaiser Permanente Washington/University of Washington site of the Electronic Medical Records a...

Background Genetic testing allows patients and clinicians to understand the risk of hereditary diseases. By testing early, individuals can make informed medical decisions about management which may minimize the risk of developing certain diseases. Importantly, genetic test results may also be applicable to patients’ biological relatives; thus, thes...

Current models of financial burden after cancer do not adequately define types of financial burden, moderators or causes. We propose a new theoretical model to address these gaps. This model delineates the components of financial burden as material and psychological as well as healthcare-specific (affording treatment) versus general (affording nece...

PURPOSE Cost of care (CoC) conversations should occur routinely in oncology practice. However, patient preferences about with whom, when, and how to have these conversations are missing and preferences may vary across patient populations. METHODS We performed a secondary qualitative analysis of quotes from interviews with 28 cancer survivors from...

Context: Health systems increasingly are exploring implementation of standardized social risk assessments. Implementation requires screening tools both with evidence of validity and reliability (psychometric properties) and that are low cost, easy to administer, readable, and brief (pragmatic properties). These properties for social risk assessmen...

This study adapted a measure on worry about affording healthcare. The financial costs of healthcare are increasingly being shifted to patients. Financial burden from healthcare costs can be material (such as bankruptcy) or psychological. Psychological distress can be either worry about affording future care or distress due to material consequences...

Background Although uniform colonoscopy screening reduces colorectal cancer (CRC) mortality, risk-based screening may be more efficient. We investigated whether CRC screening based on polygenic risk is a cost-effective alternative to current uniform screening, and if not, under what conditions it would be. Methods The MISCAN-Colon model was used t...

Assess the feasibility and acceptability of health system-led genetic risk notification in a US integrated health system. We conducted semi-structured phone interviews with individuals age 40–64 years who had undergone genetic sequencing, but had not yet received their results, assessing attitudes to direct outreach to relatives. During each interv...

Importance Pancreatic adenocarcinoma is the third most common cause of cancer death among men and women in the United States. Objective To systematically review benefits and harms of screening for pancreatic adenocarcinoma to inform the US Preventive Services Task Force. Data Sources MEDLINE, PubMed, and the Cochrane Collaboration Registry of Con...

In 2016, the U.S. National Institutes of Health (NIH) announced a new policy requiring single institutional review board (sIRB) review for multisite studies. However, adherence to the new policy requires the separation of regulatory institutional review board (IRB) work per Federal guidance from site-specific local compliance concerns. In particula...

Background: Patients prefer to discuss costs in the clinical setting, but physicians and teams may be unprepared to incorporate cost discussions into existing workflows. Objective: To understand and improve clinical workflows related to cost-of-care conversations. Design: Qualitative human-centered design study. Setting: 2 integrated health...

Background: Parental trust in their child's health care provider and the number and type of vaccine information sources are important dimensions of vaccine hesitancy and may suggest intervention components for future research. Method: We conducted secondary analysis of survey data from mothers of healthy newborns in Washington State, and examine...

168 Background: Patients prefer to discuss costs in the clinical setting, but current workflows are not designed to support cost-of-care conversations. Methods: We conducted a human centered design study to identify clinical workflows that optimize cost of care conversations. We conducted ethnographic observations at primary care departments or onc...

BACKGROUND Cancer costs should be discussed by patients and providers, but information is not readily available. Results from recently published studies (in the last 5 years) on direct and indirect cancer costs may help guide these discussions. METHODS The authors reviewed studies published between 2013 and 2017 that reported direct health care co...

This study evaluated the impact of health system–based outreach and reminders on human papillomavirus (HPV) vaccine series initiation and completion. Parents of 10 to 12 year olds (n = 1805) were randomized to receive either (1) an outreach letter and brochure recommending HPV vaccination followed by automated HPV vaccine reminders or (2) usual car...

Importance Exposure to UV radiation, especially in childhood, increases skin cancer risk. Objective To systematically review the evidence on the benefits and harms of behavioral counseling for skin cancer prevention to inform the US Preventive Services Task Force (USPSTF). Data Sources Cochrane Central Register of Controlled Trials, MEDLINE, and...

Importance Adolescent idiopathic scoliosis (AIS), a spinal curvature of 10° or more, is the most common form of scoliosis, with a prevalence of 1% to 3%. Curves progress in approximately two-thirds of patients with AIS before skeletal maturity, and large curves (>50°) may be associated with adverse health outcomes. Objective To systematically revi...

Background & aims: Relative risk of colorectal cancer (CRC) decreases with age among individuals with a family history of CRC. However, no screening recommendations specify less frequent screening with increasing age. We aimed to determine whether such a refinement would be cost effective. Methods: We determined the relative risk for CRC for ind...

Parents who refuse or delay vaccines because of vaccine hesitancy place children at increased risk for vaccine-preventable disease. How parental vaccine hesitancy changes as their children age is not known. In 2015, we conducted a follow-up survey of 237 mothers enrolled in a 2-arm clinic-level cluster randomized trial (n = 488) in Washington State...

Background: Unnecessary care contributes to high costs and places patients at risk of harm. While most providers support reducing low-value care, changing established practice patterns is difficult and requires active engagement in sustained behavioral, organizational, and cultural change. Here we describe an action-planning framework to engage pr...

Purpose: Patients with cancer increasingly wish to discuss cancer care costs with clinicians. We aimed to improve clinician access to treatment prices. Methods: We developed a pilot tool and accompanying workflow for four oncology clinics in an integrated care system. The online tool included 50 printable worksheets for cancer treatment protocols...

Importance: Multifactorial dyslipidemia, characterized by elevated total cholesterol (TC) or low-density lipoprotein cholesterol (LDL-C), is associated with dyslipidemia and markers of atherosclerosis in young adulthood. Screening for dyslipidemia in childhood could delay or reduce cardiovascular events in adulthood. Objective: To systematically...

Importance Familial hypercholesterolemia (FH) is characterized by elevated cholesterol concentrations early in life. Untreated FH is associated with premature cardiovascular disease in adulthood. Objective To systematically review the evidence on benefits and harms of screening adolescents and children for heterozygous FH for the US Preventive Ser...

Importance Skin cancer, primarily melanoma, is a leading cause of morbidity and mortality in the United States. Objective To provide an updated systematic review for the US Preventive Services Task Force regarding clinical skin cancer screening among adults. Data Sources MEDLINE, PubMed, and the Cochrane Central Register of Controlled Trials were...

Persons with a family history (FH) of colorectal cancer (CRC) or adenomas that are not due to known hereditary syndromes have an increased risk for CRC. An understanding of these risks, screening recommendations, and screening behaviors can inform strategies for reducing the CRC burden in these families. A comprehensive review of the literature pub...

Transparency document.

Healthcare providers have a strong influence on human papillomavirus (HPV) vaccination decisions, yet they often fail to recommend the vaccine to the 11- and 12-year-olds who are targeted by practice guidelines. We sought to understand how providers interpret and value age-based guidelines. We conducted a secondary analysis of data from two qualita...

Human papillomavirus (HPV) vaccination rates are significantly lower than recommended targets. Public awareness campaigns can raise awareness of the severity and prevalence of HPV infection and the cancer prevention benefits of the vaccine. We conducted an environmental scan of HPV vaccine public awareness campaigns during the summer of 2014. We us...

Physicians have a major influence on parental vaccine decisions. We tested a physician-targeted communication intervention designed to (1) reduce vaccine hesitancy in mothers of infants seen by trained physicians and (2) increase physician confidence in communicating about vaccines. We conducted a community-based, clinic-level, 2-arm cluster random...

Purpose: Family history of colorectal cancer (CRC) is a known risk factor for CRC and encompasses both genetic and shared environmental risks. Methods: We conducted a systematic review to estimate the impact of family history on the natural history of CRC and adherence to screening. Results: We found high heterogeneity in family-history defini...

Background: Value-based insurance designs (VBD) incorporate evidence-based medicine into health benefit design. Consumer knowledge of new VBD benefits is important to assessing their impact on health care use. Purpose: To assess knowledge of features of a VBD. Methods: The eligible study population was employees receiving healthcare benefits i...

Immunization information systems (IISs) are powerful public health tools for vaccination activities. To date, however, their use for public health research has been limited, in part as a result of insufficient understanding on accuracy and quality of IIS data. We evaluated the completeness and accuracy of Washington State IIS (WAIIS) data, with par...

Patient out-of-pocket costs are higher for cancer care than for any other health-care sector. Oncologist-patient discussions of costs are not well understood. We conducted an exploratory interview study to examine the frequency, patterns, attitudes, and preferences of both patients and providers on discussion of treatment costs. We conducted semi-s...

The Control Preferences Scale is widely used in decision research to measure patient preferences for participation in treatment decision making with health care providers. Following anecdotal reports of confusion with the scale the authors conducted an exploratory interview study to examine perceptions of the meaning and applicability of the Contro...

Background/Aims Value-based health insurance products are rapidly gaining popularity and interest among large employers. To date, few data exist to inform policymakers regarding the impact of these plans on health, productivity and costs. The aims of this study are to determine the impact of a novel value-based health plan on employee worksite prod...

Systematic review. We sought to answer the following clinical questions: (1) Is structured exercise more effective in the treatment of chronic low back pain (LBP) than spinal manipulative therapy (SMT)? (2) Is structured exercise more effective in the treatment of chronic LBP than acupuncture? (3) Is SMT more effective in the treatment of chronic L...

ABSTRACT : The recent flood of information about new gene variants associated with chronic disease risk from genome-wide association studies has understandably led to enthusiasm that genetic discoveries could reduce disease burdens and increase the availability of direct-to-consumer tests offering risk information. However, we suggest caution: if i...

To explore whether reversibility, decision timing, and uncertainty are relevant to men deciding on treatment for localized prostate cancer (LPC). Secondary qualitative data analysis of unstructured interviews. Content analysis of previously collected qualitative data (31 individual interviews, 5 focus groups). We identified the frequency of referen...

Some pharmacogenetic tests may provide ancillary disease risk information. To evaluate evidence and assess the social and policy implications of ancillary disease risk information associated with candidate pharmacogenetic variants, We conducted a literature search and abstract review of disease susceptibility studies for each of 42 gene variants po...

The Cancer Genetics Network (CGN) is one of a growing number of large-scale registries designed to facilitate investigation of genetic and environmental contributions to health and disease. Despite compelling scientific and social justice arguments that recommend diverse participation in biomedical research, members of ethnic minority groups contin...

Recruitment is a challenging part of developing and maintaining any population-based disease registry and different methods are used to increase enrollment. However, recruitment methods may attract different subgroups of individuals, so examining characteristics of samples recruited using different methods can help detect threats to the external va...

The study's purpose was to conduct a structured review of economic analyses of genetic services. These will be increasingly valuable tools for assessing the clinical and economic outcomes of new medical technologies. We searched for economic studies published between January 1990 and August 2004 from a variety of publicly available databases. Artic...