Rachel A Pozzar

Usability, Acceptability, and Barriers to Implementation of a Collaborative Agenda-Setting Intervention (CASI) to Promote Person-Centered Ovarian Cancer Care: Development Study

Abstract Background People with advanced ovarian cancer and their caregivers report unmet supportive care needs. We developed a Collaborative Agenda-Setting Intervention (CASI) to elicit patients’ and caregivers’ needs through the patient portal before a clinic visit and to communicate these needs to clinicians using the electronic health record. Objective We aimed to assess the usability and acceptability of the CASI and identify barriers to and facilitators of its implementation. Methods We recruited English- and Spanish-speaking patients, caregivers, and clinicians from the gynecologic oncology program at a comprehensive cancer center. Participants used the CASI prototype and then completed individual cognitive interviews and surveys. We assessed usability with the System Usability Scale (scores range 0‐100, scores ≥70 indicate acceptable usability) and acceptability with the Acceptability of Intervention Measure and Intervention Appropriateness Measure (scores for both measures range from 1 to 5, higher scores indicate greater acceptability). Interviews were audio recorded, transcribed, and analyzed using directed content analysis. Domains and constructs from the Consolidated Framework for Implementation Research comprised the initial codebook. We analyzed survey data using descriptive statistics and compared usability and acceptability scores across patients, caregivers, and clinicians using analyses of variance. Results We enrolled 15 participants (5 patients, 5 caregivers, and 5 clinicians). The mean System Usability Scale score was 72 (SD 16). The mean Acceptability of Intervention Measure and Intervention Appropriateness Measure scores were 3.9 (SD 1.0) and 4.1 (SD 0.8), respectively. Participants viewed the CASI content and format positively overall. Several participants appreciated the CASI’s integration into the clinical workflow and its potential to increase attention to psychosocial concerns. Suggestions to refine the CASI included removing redundant items, simplifying item language, and adding options to request a conversation or opt out of supportive care referrals. Key barriers to implementing the CASI include its complexity and limited resources available to address patients’ and caregivers’ needs. Conclusions The CASI is usable and acceptable to patients with advanced ovarian cancer, caregivers, and clinicians. We identified several barriers to and facilitators of implementing the CASI. In future research, we will apply these insights to a pilot randomized controlled trial to assess the feasibility of comparing the CASI to usual care in a parallel group-randomized efficacy trial.

Interventions to support decision making in people considering germline genetic testing for BRCA 1/2 pathogenic and likely pathogenic variants: A scoping review

AbstractPathogenic and likely pathogenic variants in BRCA1 and BRCA2 (BRCA1/2) are medically actionable and may inform hereditary breast and ovarian cancer (HBOC) treatment and prevention. However, rates of germline genetic testing (GT) in people with and without cancer are suboptimal. Individuals' knowledge, attitudes, and beliefs may influence GT decisions. While genetic counseling (GC) provides decision support, the supply of genetic counselors is insufficient to meet demand. Accordingly, there is a need to explore the evidence on interventions that aim to support BRCA1/2 testing decisions. We conducted a scoping review of PubMed, CINAHL, Web of Science, and PsycINFO using search terms related to HBOC, GT, and decision making. First, we screened records to identify peer‐reviewed reports that described interventions to support BRCA1/2 testing decisions. Next, we reviewed full‐text reports and excluded studies that lacked statistical comparisons or enrolled previously tested individuals. Finally, we extracted study characteristics and findings into a table. All records and reports were reviewed independently by two authors; decisions were tracked in Rayyan, and discrepancies were resolved through discussion. Of 2116 unique citations, 25 met the eligibility criteria. Articles were published between 1997 and 2021 and described randomized trials and nonrandomized, quasi‐experimental studies. Most studies tested technology‐based (12/25, 48%) or written (9/25, 36%) interventions. Nearly half (12/25, 48%) of interventions were designed to complement traditional GC. Of the interventions compared to GC, 75% (6/8) increased or had a noninferior effect on knowledge, and 67% (4/6) decreased or had a noninferior effect on decisional conflict. Intervention effects on GT uptake were mixed, which may reflect evolving eligibility criteria for GT. Our findings suggest novel interventions may promote informed GT decision making, but many were developed to complement traditional GC. Trials that assess the effects of decision support interventions in diverse samples and evaluate implementation strategies for efficacious interventions are warranted.

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.