Development and Initial Pilot Evaluation of a Psychoeducational Intervention for Individuals at High Risk for Pancreatic Cancer.

Objectives: To develop and determine the acceptability of a group-based digital health psychoeducational intervention aimed at reducing cancer worry based on acceptance and commitment therapy for individuals at high risk for pancreatic cancer.

Sample & Setting: 13 individuals at high risk for pancreatic cancer with a genetic variant or family history.

Methods & Variables: Three groups met virtually for one hour each week for four weeks.

A Randomized Trial of Two Remote Health Care Delivery Models on the Uptake of Genetic Testing and Impact on Patient-Reported Psychological Outcomes in Families With Pancreatic Cancer: The Genetic Education, Risk Assessment, and Testing (GENERATE) Study.

Background & Aims: Genetic testing uptake for cancer susceptibility in family members of patients with cancer is suboptimal. Among relatives of patients with pancreatic ductal adenocarcinoma (PDAC), The GENetic Education, Risk Assessment, and TEsting (GENERATE) study evaluated 2 online genetic education/testing delivery models and their impact on patient-reported psychological outcomes.

Methods: Eligible participants had ≥1 first-degree relative with PDAC, or ≥1 first-/second-degree relative with PDAC with a known pathogenic germline variant in 1 of 13 PDAC predisposition genes.

Digital Health Psychosocial Intervention in Adult Patients With Cancer and Their Families: Systematic Review and Meta-Analysis.

Background: Patients with cancer and their families often experience significant distress and deterioration in their quality of life. Psychosocial interventions were used to address patients' and families' psychosocial needs. Digital technology is increasingly being used to deliver psychosocial interventions to patients with cancer and their families.

ACCESS: an empirically-based framework developed by the International Nursing CASCADE Consortium to address genomic disparities through the nursing workforce.

Efforts are needed across disciplines to close disparities in genomic healthcare. Nurses are the most numerous trained healthcare professionals worldwide and can play a key role in addressing disparities across the continuum of care. ACCESS is an empirically-based theoretical framework to guide clinical practice in order to ameliorate genomic disparities.

Pretest Video Education Versus Genetic Counseling for Patients With Prostate Cancer: ProGen, A Multisite Randomized Controlled Trial.

Purpose: Germline genetic testing (GT) is recommended for men with prostate cancer (PC), but testing through traditional models is limited. The ProGen study examined a novel model aimed at providing access to GT while promoting education and informed consent.

Methods: Men with potentially lethal PC (metastatic, localized with a Gleason score of ≥8, persistent prostate-specific antigen after local therapy), diagnosis age ≤55 years, previous malignancy, and family history suggestive of a pathogenic variant (PV) and/or at oncologist's discretion were randomly assigned 3:1 to video education (VE) or in-person genetic counseling (GC).

MyLynch: A Patient-Facing Clinical Decision Support Tool for Genetically-Guided Personalized Medicine in Lynch Syndrome.

Lynch syndrome (LS) is a hereditary cancer susceptibility condition associated with varying cancer risks depending on which of the five causative genes harbors a pathogenic variant; however, lifestyle and medical interventions provide options to lower those risks. We developed MyLynch, a patient-facing clinical decision support (CDS) web application that applies genetically-guided personalized medicine (GPM) for individuals with LS. The tool was developed in R Shiny through a patient-focused iterative design process.

The Experience of Uncertainty in Individuals With High Risk for Pancreatic Cancer.

Background: Individuals with a strong family history of pancreatic cancer or a known hereditary cancer syndrome that is associated with pancreatic cancer are considered at high risk for developing pancreatic cancer. Living with a high risk for often fatal cancer is accompanied by high levels of uncertainty. Uncertainty is also independently associated with negative health outcomes.

Protocol for a randomized controlled trial of the Enhanced Smoking Cessation Approach to Promote Empowerment (ESCAPE) digitalized intervention to promote lung health in high-risk individuals who smoke.

Low dose computed tomography (LDCT) is an effective screening test to decrease lung cancer deaths. Lung cancer screening may be a teachable moment helping people who smoke to quit, which may result in increased benefit of screening. Innovative strategies are needed to engage high-risk individuals in learning about LDCT screening.

How does patient-centered communication in ovarian cancer care enhance patient well-being? A mixed methods study.

Objective: Greater perceived patient-centered communication (PCC) is associated with better health-related quality of life (HRQoL) in patients with ovarian cancer. Quantitative measures of PCC and HRQoL do little to explain this association. We interviewed patients with high and low ratings of PCC to understand how it is associated with HRQoL.

Scoping Review of Nonsurgical, Nonpharmacologic Interventions After Risk Reduction: Improving Quality of Life for Patients With Inherited Cancer Risk.

Purpose: Although risk-reduction interventions for inherited cancer can significantly reduce cancer risk, they may also lead to distressing symptoms. It is not well understood how clinicians support patients in managing such concerns. This scoping review describes nonsurgical, nonpharmacologic interventions for adults with inherited cancer risk who have completed risk reduction.

Novel Models of Genetic Education and Testing for Pancreatic Cancer Interception: Preliminary Results from the GENERATE Study.

Up to 10% of patients with pancreatic ductal adenocarcinoma (PDAC) carry underlying germline pathogenic variants in cancer susceptibility genes. The GENetic Education Risk Assessment and TEsting (GENERATE) study aimed to evaluate novel methods of genetic education and testing in relatives of patients with PDAC. Eligible individuals had a family history of PDAC and a relative with a germline pathogenic variant in , or genes.

Perceived patient-centered communication, quality of life, and symptom burden in individuals with ovarian cancer.

Objective: To describe perceptions of patient-centered communication (PCC); assess whether physician specialty, patient characteristics, or health system characteristics are associated with PCC; and identify associations between PCC, health-related quality of life (HRQoL), and symptom burden among individuals with ovarian cancer.

Methods: Cross-sectional, descriptive survey of English-speaking adults with ovarian cancer. PCC, HRQoL, and ovarian cancer symptom burden were assessed with the PCC-Ca-36, the FACT-G, and the FOSI-18, respectively.

Knowledge and psychosocial impact of genetic counseling and multigene panel testing among individuals with ovarian cancer.

In a sample of individuals with ovarian cancer, we aimed to (a) identify factors associated with the psychosocial impact of genetic counseling and multigene panel testing, (b) identify factors associated with cancer genetics knowledge, and (c) summarize patient-reported recommendations to improve the genetic counseling and multigene panel testing process. Eligible participants in this secondary analysis of quantitative and qualitative survey data were English-speaking adults with ovarian cancer. Psychosocial impact was assessed using the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire.

Interventions Facilitating Family Communication of Genetic Testing Results and Cascade Screening in Hereditary Breast/Ovarian Cancer or Lynch Syndrome: A Systematic Review and Meta-Analysis.

Evidence-based guidelines recommend cascade genetic testing of blood relatives of known Hereditary Breast and Ovarian Cancer (HBOC) or Lynch Syndrome (LS) cases, to inform individualized cancer screening and prevention plans. The study identified interventions designed to facilitate family communication of genetic testing results and/or cancer predisposition cascade genetic testing for HBOC and LS. We conducted a systematic review and meta-analysis of randomized trials that assessed intervention efficacy for these two outcomes.

Knowledge and perceptions of BRCA1/2 genetic testing and needs of diverse women with a personal or family history of breast cancer in South Florida.

The vast majority of (BRCA1/2) genetic testing has been conducted in White women, in particular Ashkenazi Jewish women, with limited information available for Black and Hispanic women. Understanding perspectives of those who are underserved is critical to developing interventions to support inclusive approaches to genetic testing. This qualitative study explored knowledge and perceptions of BRCA1/2 genetic testing among diverse women in South Florida.

Creative Art Expression: Using Hand-Lettering Techniques to Reduce Stress and Anxiety in Patients With Cancer.

A creative art expression intervention using hand lettering was implemented on an outpatient oncology unit and evaluated for feasibility and its relationship with stress and anxiety in patients with cancer. Results suggest that a hand lettering intervention is feasible in this type of setting and may benefit patients experiencing stress and anxiety during outpatient treatment.

Implementing Systematic Genetic Counseling and Multigene Germline Testing for Individuals With Pancreatic Cancer.

Purpose: National guidelines recommend genetic counseling and multigene germline testing (GC/MGT) for all patients with pancreatic ductal adenocarcinoma (PDAC). This study's aim was to assess real-world effectiveness of implementing systematic GC/MGT for all patients with PDAC at a high-volume academic institution.

Methods: An iterative process for systematizing GC/MGT was developed in which gastrointestinal oncology providers at the Dana-Farber Cancer Institute were recommended to refer all patients with PDAC for GC/MGT (clinician-directed referral).

Threats of Bots and Other Bad Actors to Data Quality Following Research Participant Recruitment Through Social Media: Cross-Sectional Questionnaire.

Background: Recruitment of health research participants through social media is becoming more common. In the United States, 80% of adults use at least one social media platform. Social media platforms may allow researchers to reach potential participants efficiently.

Informing models of cancer genetics care in the era of multigene panel testing with patient-led recommendations.

The study describes patient-reported experiences and recommendations to improve the genetic counseling and multigene panel testing (MGPT) process. A descriptive mixed-method study with concurrently collected and integrated qualitative and quantitative data was conducted. Eligible participants were English-speaking adults with a breast or gynecologic cancer diagnosis who had received genetic counseling and testing with a MGPT from one Comprehensive Cancer Center.

Chemotherapy Education and Support: A Model for Use in the Ambulatory Care Setting.

Background: Oncology nurses are challenged to coordinate an effective, evidence-based approach to comprehensive patient education, symptom management, and psychosocial support for patients with pancreatic and colorectal cancers during chemotherapy.

Objectives: The purpose of the study was to develop and evaluate a nurse-led psychoeducational intervention using a multimedia tool.

Methods: Development and testing of the intervention was grounded in the Science and Practice Aligned Within Nursing model for evidence-based practice implementation.

Hodgkin Lymphoma Survivor Wellness: Development of a Web-Based Intervention.

Background: Informational and supportive care resources are needed for Hodgkin lymphoma (HL) survivors.

Objectives: The aim of this article is to adapt and evaluate a previously developed survivorship care website for HL survivors.

Methods: A mixed-methods, user-centered design, including one-time focus groups, was followed by iterative web design and user testing.

Genetic Discrimination: The Genetic Information Nondiscrimination Act's Impact on Practice and Research.

The Genetic Information Nondiscrimination Act of 2008 (GINA) provides federal safeguards to prohibit employer or insurance discrimination based on personal or familial genetic information or conditions. Awareness of the implications of genetic testing in individuals and families and of state and federal legislation in place for their protection is an essential component of oncology nursing practice. This article discusses the critical role of the oncology nurse in interacting with and providing information about GINA to patients in a cancer care setting engaged in genetic assessment.

Health behaviours and beliefs in individuals with familial pancreatic cancer.

Individuals at high risk for pancreatic cancer are recommended surveillance and healthy lifestyle behaviours and patient experience with recommendations are understudied. To describe engagement and experience with surveillance, tobacco and alcohol use, health beliefs and motivation (Champion Health Belief Measure) and the relationship with personal, psychosocial (Impact of Event Scale), and familial characteristics. Interest in integrative therapies (complementary therapies) are described.

Development and testing of the KnowGene scale to assess general cancer genetic knowledge related to multigene panel testing.

Purpose: To develop and evaluate a measure of cancer genetics knowledge relevant to multigene panel testing.

Methods: The instrument was developed using systematic input from a national panel of genetics experts, acceptability evaluation by patient advocates, and cognitive testing. Twenty-four candidate items were completed by 591 breast or gynecological patients who had undergone genetic counseling and multigene panel testing in the past 18 months.

Development and Testing of a Decision Aid for Unaffected Women with a BRCA1 or BRCA2 Mutation.

For women who are unaffected carriers of a pathogenic BRCA mutation, cancer risk management requires ongoing education, counseling, and support from an interdisciplinary team of medical specialists, genetic counselors, and nurses specializing in genomics. The purpose of this study was to develop and pilot test an educational, patient-focused decision aid to facilitate shared decision making. A steering committee developed the prototype aid after an extensive review of the literature.