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. OBJECTIVE: A systematic review and meta-analysis were conducted to review the characteristics and effectiveness of digital health interventions on psychosocial outcomes in adult patients with cancer and their family members. METHODS: Databases (PubMed, Cochrane Library, Web of Science, Embase, CINAHL, PsycINFO, ProQuest Dissertations and Theses Global, and ClinicalTrials.gov) were searched for randomized controlled trials (RCTs) or quasi-experimental studies that tested the effects of a digital intervention on psychosocial outcomes. The Joanna Briggs Institute's critical appraisal checklists for RCTs and quasi-experimental studies were used to assess quality. Standardized mean differences (ie, Hedges g) were calculated to compare intervention effectiveness. Subgroup analysis was planned to examine the effect of delivery mode, duration of the intervention, type of control, and dosage on outcomes using a random-effects modeling approach. RESULTS: A total of 65 studies involving 10,361 patients (mean 159, SD 166; range 9-803 patients per study) and 1045 caregivers or partners (mean 16, SD 54; range 9-244 caregivers or partners per study) were included in the systematic review. Of these, 32 studies were included in a meta-analysis of the effects of digital health interventions on quality of life, anxiety, depression, distress, and self-efficacy. Overall, the RCT studies' general quality was mixed (applicable scores: mean 0.61, SD 0.12; range 0.38-0.91). Quasi-experimental studies were generally of moderate to high quality (applicable scores: mean 0.75, SD 0.08; range 0.63-0.89). Psychoeducation and cognitive-behavioral strategies were commonly used. More than half (n=38, 59%) did not identify a conceptual or theoretical framework. Most interventions were delivered through the internet (n=40, 62%). The median number of intervention sessions was 6 (range 1-56). The frequency of the intervention was highly variable, with self-paced (n=26, 40%) being the most common. The median duration was 8 weeks. The meta-analysis results showed that digital psychosocial interventions were effective in improving patients' quality of life with a small effect size (Hedges g=0.05, 95% CI -0.01 to 0.10; I2=42.7%; P=.01). The interventions effectively reduced anxiety and depression symptoms in patients, as shown by moderate effect sizes on Hospital Anxiety and Depression Scale total scores (Hedges g=-0.72, 95% CI -1.89 to 0.46; I2=97.6%; P<.001). CONCLUSIONS: This study demonstrated the effectiveness of digital health interventions on quality of life, anxiety, and depression in patients. Future research with a clear description of the methodology to enhance the ability to perform meta-analysis is needed. Moreover, this study provides preliminary evidence to support the integration of existing digital health psychosocial interventions in clinical practice. TRIAL REGISTRATION: PROSPERO CRD42020189698; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=189698.

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. Participants were randomized by family, between May 8, 2019, and June 1, 2021. Arm 1 participants underwent a remote interactive telemedicine session and online genetic education. Arm 2 participants were offered online genetic education only. All participants were offered germline testing. The primary outcome was genetic testing uptake, compared by permutation tests and mixed-effects logistic regression models. We hypothesized that Arm 1 participants would have a higher genetic testing uptake than Arm 2. Validated surveys were administered to assess patient-reported anxiety, depression, and cancer worry at baseline and 3 months postintervention. RESULTS: A total of 424 families were randomized, including 601 participants (n = 296 Arm 1; n = 305 Arm 2), 90% of whom completed genetic testing (Arm 1 [87%]; Arm 2 [93%], P = .014). Arm 1 participants were significantly less likely to complete genetic testing compared with Arm 2 participants (adjusted ratio [Arm1/Arm2] 0.90, 95% confidence interval 0.78-0.98). Among participants who completed patient-reported psychological outcomes questionnaires (Arm 1 [n = 194]; Arm 2 [n = 206]), the intervention did not affect mean anxiety, depression, or cancer worry scores. CONCLUSIONS: Remote genetic education and testing can be a successful and complementary option for delivering genetics care. (Clinicaltrials.gov, number NCT03762590).

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. By understanding issues, sources, and responses to uncertainty, targeted supportive care strategies can be provided. OBJECTIVES: This study aimed to examine how uncertainty manifests in the experience of being at high risk to develop pancreatic cancer and to describe issues, sources of, and responses to uncertainty. METHODS: In this secondary qualitative descriptive study, we analyzed 19 interviews with persons living with inherited pancreatic cancer risk. Analysis was guided by a conceptual framework of uncertainty and responses to uncertainty. RESULTS: Participants described multiple personal, practical, and scientific issues of uncertainty, centering on what to expect for their future health. Participants also expressed positive and negative cognitive, emotional, and behavioral responses to uncertainty, including engaging in surveillance. Uncertainty sources were both individual experiences as well as perceptions of healthcare provider uncertainty with managing pancreatic cancer risk. CONCLUSION: Pancreatic cancer risk includes issues of uncertainty related to personal mortality, defining and managing risk, and experiencing surveillance. Positive and negative responses to this uncertainty could be targeted through interventions. IMPLICATION FOR PRACTICE: The oncology nurse should assess for sources of and responses to uncertainty in persons at risk for pancreatic cancer and offer psychosocial and educational support.

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). Participants had 67 genes analyzed (Ambry), with results disclosed via telephone by a genetic counselor. Outcomes included GT consent, GT completion, PV prevalence, and survey measures of satisfaction, psychological impact, genetics knowledge, and family communication. Two-sided Fisher's exact tests were used for between-arm comparisons. RESULTS: Over a 2-year period, 662 participants at three sites were randomly assigned and pretest VE (n = 498) or GC (n = 164) was completed by 604 participants (VE, 93.1%; GC, 88.8%), of whom 596 participants (VE, 98.9%; GC, 97.9%) consented to GT and 591 participants completed GT (VE, 99.3%; GC, 98.6%). These differences were not statistically significant although subtle differences in satisfaction and psychological impact were. Notably, 84 PVs were identified in 78 participants (13.2%), with BRCA1/2 PV comprising 32% of participants with a positive result (BRCA2 n = 21, BRCA1 n = 4). CONCLUSION: Both VE and traditional GC yielded high GT uptake without significant differences in outcome measures of completion, GT uptake, genetics knowledge, and family communication. The increased demand for GT with limited genetics resources supports consideration of pretest VE for patients with PC.

Designing a Dyad-Based Digital Health Intervention to Reduce Sedentary Time in Black Breast Cancer Survivors and Their First-degree Relatives: Human-Centered Design Study.

BACKGROUND: Breast cancer, the most commonly diagnosed cancer and second leading cause of cancer-related death in women in the United States, disproportionately affects women from minoritized or low socioeconomic backgrounds. The average woman has an approximately 12% lifetime risk of developing breast cancer. Lifetime risk nearly doubles if a woman has a first-degree relative with breast cancer, and the risk increases as multiple family members are affected. Decreasing sedentary behaviors through moving more and sitting less reduces breast cancer risk and improves outcomes for cancer survivors and healthy adults. Digital health solutions, such as mobile apps that are culturally appropriate, designed with input from the target audience, and include social support, are effective at improving health behaviors. OBJECTIVE: This study aimed to develop and evaluate the usability and acceptability of a prototype app designed with a human-centered approach to promote moving more and sitting less in Black breast cancer survivors and their first-degree relatives (parent, child, or sibling). METHODS: This 3-phase study consisted of app development, user testing, and evaluation of user engagement and usability. Key community stakeholders were engaged in the first 2 (qualitative) phases to provide input into developing the prototype app (MoveTogether). After development and user testing, a usability pilot was conducted. Participants were adult breast cancer survivors who identified as Black and agreed to participate with a relative. Participants used the app and a step-tracking watch for 4 weeks. App components included goal setting and reporting, reminders, dyad messaging, and educational resources. Usability and acceptability were assessed with a questionnaire that included the System Usability Scale (SUS) and semistructured interviews. Data were analyzed with descriptive statistics and content analysis. RESULTS: Participants in the usability pilot (n=10) were aged 30 to 50 years (6/10, 60%), not married (8/10, 80%), and college graduates (5/10, 50%). The app was used on average 20.2 (SD 8.9) out of 28 days-SUS score of 72 (range 55-95)-and 70% (7/10) agreed that the app was acceptable, helpful, and gave them new ideas. Additionally, 90% (9/10) found the dyad component helpful and would recommend the app to friends. Qualitative findings suggest that the goal-setting feature was helpful and that the dyad partner (buddy) provided accountability. Participants were neutral regarding the cultural appropriateness of the app. CONCLUSIONS: The MoveTogether app and related components were acceptable for promoting moving more in dyads of breast cancer survivors and their first-degree relatives. The human-centered approach, which involved engaging community members in the development, is a model for future technology development work. Future work should be done to further develop the intervention based on the findings and then test its efficacy to improve sedentary behavior while considering culturally informed strategies for adoption and implementation within the community. TRIAL REGISTRATION: ClinicalTrials.gov NCT05011279; https://clinicaltrials.gov/ct2/show/NCT05011279.

Clinical research nurses' perceptions of the unique needs of people of color for successful recruitment to cancer clinical trials.

BACKGROUND: Clinical trials (CTs) test new medical products for safety and effectiveness. Despite federal policy aimed at generating greater inclusivity of people of color (POC) in CTs, disparity in (CT) enrollment persists. Non-Hispanic White patients comprise the majority of CT participants while Black and Hispanic patient participation has declined over the past decade. The scope of Clinical Research Nurses (CRNs) includes recruitment of participants for CTs. The aim of this phenomenological study was to describe adult oncology CRNs' lived experiences of recruiting POC cancer patients to participate in CTs. The first paper for this study identified three major themes regarding how CRNs view their role in caring for POC considering or enrolling onto cancer clinical trials (CCTs): CRNs act as advocates, care coordinators and educators. This paper focuses on two additional major themes regarding how CRNs view the unique needs of POC in clinical research: establishing and maintaining trusting relationships and recruitment infrastructure. METHODS: Nineteen nurses participated in semi-structured one-to-one interviews and data analysis was based on Colaizzi's method. RESULTS: CRNs described a history of past research injustices, disparate access to care, inadequate cultural training, a physician-driven recruitment structure and provider-based implicit biases that hinder POC enrollment in CTs. CONCLUSION: Diversity in CCT enrollment requires CRNs to establish trust with POC, advocate for POC when implicit biases are observed and become competent practitioners of culturally sensitive care. Further, meaningful policy change at both federal and organizational levels must occur to ensure equitable access to novel cancer therapies.

A scoping review on the nurse scientist role within healthcare systems.

BACKGROUND: The role of the nurse scientist in the clinical setting is not well defined, which contributes to variability in role implementation, scope, administration, funding, and affiliation across healthcare sites. AIMS: The aim of this scoping review was to identify attributes of the clinical nurse scientist role and its operationalization in the clinical setting through available evidence. METHODS: A comprehensive, computerized search of the literature in PubMed, Medline, and CINAHL was conducted in early May 2020 by a medical research librarian and repeated in July 2021 and April 2022. The 5-step framework described by Arskey and O'Malley guided the review methodology. Two reviewers conducted an independent screen of all articles, followed by a full-text review of eligible articles by two independent reviewers each using a standardized data extraction template. Themes were then organized and synthesized using descriptive content analysis from the included articles. RESULTS: A final sample of 55 full-text articles were included in the review. Overall, the findings suggest that the nurse scientist role in a clinical setting can be challenging to implement in complex healthcare environments. Successful models include the nurse scientist in a leadership role, alignment of research with institutional priorities, and strong support from senior leadership. LINKING EVIDENCE TO ACTION: Findings suggest that standardized guidelines are lacking to govern the implementation of the nurse scientist role in the clinical setting. To succeed, the nurse scientist role must be valued and supported by organizational leaders. Further, access to resources to build infrastructure must be provided. The magnitude and scope of individual organizational support can be tailored based on the resources of the institution; however, the foundation of having institutional leadership support is critical to role success of the clinical nurse researcher.

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 knowledge base used to estimate patient-specific risk leveraged a rigorously curated literature review. MyLynch informs LS patients of their personal cancer risks, educates patients on relevant interventions, and provides patients with adjusted risk estimates, depending on the interventions they choose to pursue. MyLynch can improve risk communication between patients and providers while also encouraging communication among relatives with the goal of increasing cascade testing. As genetic panel testing becomes more widely available, GPM will play an increasingly important role in patient care, and CDS tools offer patients and providers tailored information to inform decision-making. MyLynch provides personalized cancer risk estimates and interventions to lower these risks for patients with LS.

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. More precise methods such as polygenic risk scores quantify genetic predisposition to tobacco use, and optimize lung health interventions. We present the ESCAPE (Enhanced Smoking Cessation Approach to Promote Empowerment) protocol. This study will test a smoking cessation intervention using personal stories and a lung cancer screening decision-aide compared to standard care (brief advice, referral to a quit line, and a lung cancer screening decision-aide), examine the relationship between a polygenic risk score and smoking abstinence, and describe perceptions about integration of genomic information into smoking cessation treatment. A randomized controlled trial followed by a sequential explanatory mixed methods approach will compare the efficacy of the interventions. Interviews will add insight into the use of genomic information and risk perceptions to tailor smoking cessation treatment. Two-hundred and fifty individuals will be recruited from primary care, community-based organizations, mailing lists and through social media. Data will be collected at baseline, 1, 3 and 6-months. The primary outcomes are 7-day point prevalence smoking abstinence and stage of lung cancer screening at 6-months. The results from this study will provide information to refine the ESCAPE intervention and facilitate integration of precision health into future lung health interventions. Clinical trial registration number: NCT0469129T.

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

Introduction: 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. Methods: The framework was developed by the International Nursing CASCADE Consortium based on evidence collected between 2005 and 2023 from individuals and families of various ethnic backgrounds, with diverse hereditary conditions, and in different healthcare systems, i.e., Israel, Korea, Switzerland, and several U.S. States. The components of the framework were validated against published scientific literature. Results: ACCESS stands for Advocating, Coping, Communication, cascadE Screening, and Surveillance. Each component is demonstrated in concrete examples of clinical practice within the scope of the nursing profession related to genomic healthcare. Key outcomes include advocacy, active coping, intrafamilial communication, cascade screening, and lifelong surveillance. Advocacy entails timely identification of at-risk individuals, facilitating referrals to specialized services, and informed decision-making for testing. Active coping enhances lifelong adaptation and management of disease risk. Effective intrafamilial communication of predisposition to hereditary disease supports cascade testing of unaffected at-risk relatives. Lifelong surveillance is essential for identifying recurrence, changes in health status, and disease trajectory for life-threatening and for life-altering conditions. Discussion: ACCESS provides a standardized, systematic, situational, and unifying guide to practice and is applicable for nursing and for other healthcare professions. When appropriately enacted it will contribute towards equitable access to genomic resources and services.

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. METHODS: Explanatory sequential mixed methods study. Participants were English-speaking U.S. adults with ovarian cancer. We assessed PCC with the Patient-Centered Communication - Cancer (PCC-Ca)-36 (possible score range 1-5; higher scores represent greater patient-centeredness), and purposively sampled 14 participants with total scores in the top and bottom quartiles. Participants completed individual, semi-structured interviews about their communication experiences. Guided by the National Cancer Institute Framework for PCC in Cancer Care, we analyzed interview transcripts using directed content analysis. We integrated survey and interview findings in a joint display. RESULTS: Among 176 survey respondents, PCC-Ca-36 total scores ranged from 1.7 to 5.0. Participants with scores in the top quartile (4.8-5.0) perceived clinicians as proactive and attentive to psychosocial concerns. Those with scores in the bottom quartile (1.7-3.5) described not feeling known as an individual and receiving limited support for self-management. CONCLUSIONS: The association between PCC and QoL may be partially explained by differences in perceived support for psychosocial concerns and self-management. PCC may facilitate receipt of proactive, personalized care.

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. LITERATURE SEARCH: Five publications were identified following a database review for English-language articles published from 2015 to 2020. DATA EVALUATION: Sample, content, methods, and outcomes of included interventions are summarized. RESULTS: The study identified five interventions. IMPLICATIONS FOR NURSING: Future research should target a broader variety of heritable cancers to identify effective strategies for addressing challenges with risk-reduction interventions for inherited cancer.

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. Knowledge of cancer genetics was assessed using the KnowGene scale. Significant predictors of MICRA and KnowGene scores were identified using multiple regression. Open-ended survey item responses were analyzed using conventional content analysis. Eighty-seven participants met eligibility criteria. A positive genetic test result was associated with greater adverse psychosocial impact (B = 1.13, p = 0.002). Older age (B = - 0.07, p = 0.044) and being a member of a minority racial or ethnic group (B = - 3.075, p = 0.033) were associated with lower knowledge, while a personal history of at least one other type of cancer (B = 1.975, p = 0.015) was associated with higher knowledge. In open-ended item responses, participants wanted clinicians to assist with family communication, improve result disclosure, and enhance patient and family understanding of results. A subset of individuals with ovarian cancer who receive a positive genetic test result may be at risk for adverse psychosocial outcomes. Tailored cancer genetics education is necessary to promote the equitable uptake of targeted ovarian cancer treatment and risk-reducing therapies. Interventions to enhance patient-clinician communication in this setting are a research priority.

The role of clinical research nurses in minority recruitment to cancer clinical trials.

Clinical trials (CTs) are the established research mechanism designed to examine how new medical therapies are tested for safety and effectiveness. Specifically, non-Hispanic White patients still account for most CT participants and Black patient participation has declined over the past decade. Clinical Research Nurses (CRNs) whose scope of practice includes the recruitment of participants for CTs, have the potential to significantly increase minority patients participation in cancer clinical trials (CCTs). The aim of this phenomenological study was to describe adult oncology CRNs' lived experiences of recruiting minority cancer patients to participate in CTs. A total of 19 nurses participated in semi-structured one-to-one interviews and data analysis was based on Colaizzi's method. The role of CRNs was described as advocates who coordinate care, establish trust, and provide education for CT patients within physician-driven recruitment structures. The CRN's role was also described as self-taught or learn on the go with no formalized recruitment training and lack of robust cultural training. To achieve diverse patient enrollment in CCTs, CRNs and study staff need to receive training on culturally competent clinical research care and the diversity of CRNs and study teams must be increased. Further, meaningful federal and hospital policy change must occur so that minority patients have equitable access to novel cancer therapies and the role of the CRN is delineated from other healthcare staff to optimize research patient care.

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 APC, ATM, BRCA1, BRCA2, CDKN2A, EPCAM, MLH1, MSH2, MSH6, PALB2, PMS2, STK11, or TP53 genes. Participants were recruited at six academic cancer centers and through social media campaigns and patient advocacy efforts. Enrollment occurred via the study website (https://GENERATEstudy.org) and all participation, including collecting a saliva sample for genetic testing, could be done from home. Participants were randomized to one of two remote methods that delivered genetic education about the risks of inherited PDAC and strategies for surveillance. The primary outcome of the study was uptake of genetic testing. From 5/8/2019 to 5/6/2020, 49 participants were randomized to each of the intervention arms. Overall, 90 of 98 (92%) of randomized participants completed genetic testing. The most frequently detected pathogenic variants included those in BRCA2 (N = 15, 17%), ATM (N = 11, 12%), and CDKN2A (N = 4, 4%). Participation in the study remained steady throughout the onset of the Coronavirus disease (COVID-19) pandemic. Preliminary data from the GENERATE study indicate success of remote alternatives to traditional cascade testing, with genetic testing rates over 90% and a high rate of identification of germline pathogenic variant carriers who would be ideal candidates for PDAC interception approaches. PREVENTION RELEVANCE: Preliminary data from the GENERATE study indicate success of remote alternatives for pancreatic cancer genetic testing and education, with genetic testing uptake rates over 90% and a high rate of identification of germline pathogenic variant carriers who would be ideal candidates for pancreatic cancer interception.

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. PCC-Ca-36 scores were summarized using descriptive statistics. Predictors of PCC-Ca-36, FACT-G, and FOSI-18 scores were identified using multiple linear regression. RESULTS: Participants (n = 176) had a mean age of 59.4 years (SD = 12.1). The majority (65.9%) had advanced-stage disease, while 42.0% were receiving treatment. The mean PCC-Ca-36 total score was 4.09 (SD = 0.78) out of a possible 5, indicating participants often perceived that clinicians engaged in PCC. Among the PCC functions, participants reported that clinicians least often enabled patient self-management (M = 3.65, SD = 0.99), responded to emotions (M = 3.84, SD = 1.04), and managed uncertainty (M = 3.91, SD = 0.93). In multivariable analyses, neither physician specialty nor patient and health system characteristics were significantly associated with overall PCC. Greater overall PCC predicted better overall HRQoL; better social/family, emotional, and functional well-being; and lower overall and physical symptom burden (all p ≤ 0.05). CONCLUSION: Greater PCC is significantly associated with better HRQoL and lower symptom burden among individuals with ovarian cancer. PRACTICE IMPLICATIONS: Promotion of PCC is a promising strategy to improve patient-reported outcomes in the ovarian cancer care setting.

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. Additional outcomes were also recorded and synthesized when possible. Fourteen articles met the inclusion criteria and were included in the narrative synthesis and 13 in the meta-analysis. Lack of participant blinding was the most common risk of bias. Interventions targeted HBOC (n = 5); both HBOC and LS (n = 4); LS (n = 3); or ovarian cancer (n = 2). All protocols (n = 14) included a psychoeducational and/or counseling component. Additional components were decision aids (n = 4), building communication skills (n = 4), or motivational interviewing (n = 1). The overall effect size for family communication was small (g = 0.085) and not significant (p = 0.344), while for cascade testing, it was small (g = 0.169) but significant (p = 0.014). Interventions show promise for improving cancer predisposition cascade genetic testing for HBOC and LS. Future studies should employ family-based approaches and include racially diverse samples.

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. We also explored participants' information needs. Convenience sampling was used to recruit a diverse group of 15 women with a personal or family history of breast cancer. We conducted semi-structured interviews and used grounded theory method to analyze the data. Five themes were identified: (1) lacking awareness and knowledge of BRCA1/2 genetic testing and results among Black women, (2) perceiving BRCA1/2 genetic testing as beneficial to themselves and a way to be proactive about cancer risk, (3) perceiving BRCA1/2 genetic testing as beneficial to family members, (4) interactions with healthcare providers and the healthcare system that shape genetic testing experiences, and (5) information needs for reducing cancer risk and promoting health. Our findings suggest that diverse underserved women perceived genetic testing as beneficial to themselves and family members. Women needed more information about the BRCA genes and genetic testing, prevention strategies, and the latest breast cancer research. Healthcare providers, particularly nurse practitioners, need to engage diverse high-risk women in discussions about their cancer risk, address unmet information needs, and, in particular, educate Black women about the benefits of pursuing genetic testing.

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). Workflows were subsequently changed such that patients with PDAC were automatically offered GC/MGT when scheduling their initial oncology consultation (automated referral). Clinical and germline data were collected on a consecutive cohort of patients with PDAC undergoing GC/MGT during a 25-month enrollment period (19-month clinician-directed referrals; 6-month automated referrals). RESULTS: One thousand two hundred fourteen patients with PDAC were seen for initial oncologic evaluation, 266 (21.9%) of whom underwent GC/MGT. Compared with baseline clinician-directed referrals, implementation of automated referrals led to a significant increase in patients with PDAC undergoing GC/MGT (16.5% v 38.0%, P < .001), including those undergoing multigene germline testing (MGT) ≤ 7 days of initial oncology evaluation (14.7% v 60.3%, P < .001), with preserved pathogenic variant detection rates (10.0% v 11.2%, P = 0.84). 16 of 28 (57.1%) pathogenic variant carriers had relatives who pursued cascade germline testing, and 13 of 26 (50.0%) carriers with incurable disease received targeted therapy based on MGT results. CONCLUSION: Implementation of systematic GC/MGT in patients with PDAC is feasible and leads to management changes for patients with PDAC and their families. GC/MGT workflows that bypass the need for clinician referral result in superior uptake and time to testing. Further investigation is needed to identify other barriers and facilitators of universal GC/MGT.