Experiences of the National Post-Exposure Prophylaxis Hotline (PEPline): Occupational PEP consultation needs and trends, 2014 to 2022.

BACKGROUND: The National Clinician Consultation Center operates the Post-Exposure Prophylaxis Hotline (PEPline), a federally-funded educational resource providing bloodborne pathogen exposure management teleconsultation to US clinicians. METHODS: Sixty-seven thousand one hundred nine occupational post-exposure prophylaxis (PEP) consultations (January 2014 to December 2022) were retrospectively analyzed to describe PEPline utilization and common inquiries addressed by National Clinician Consultation Center consultants. RESULTS: Most calls involved percutaneous incidents (70%); blood was the most common body fluid discussed (60%). Inpatient units were the most common exposure setting (35%) and licensed nursing professionals were the most common category of exposed workers (28%). Of 2,295 calls where workers had already initiated PEP for human immunodeficiency virus (HIV) prevention and time to first dose was known, 9% had initiated HIV PEP within 2 hours of exposure; almost 80% had initiated HIV PEP between 2 and 24 hours; 3% after 24 to 36 hours; 5% after 36 to 72 hours; and 2% after 72 hours. Calls from urgent care providers increased by 10% over time. Overall, more than 90% of callers requested support on risk assessment, including source person testing; other common questions involved PEP side effects and follow-up care. CONCLUSIONS: PEPline consultations can help raise awareness about PEP availability and timely initiation, and reduce stigma by addressing common misperceptions about bloodborne pathogen transmission mechanisms and likelihood, particularly regarding HIV.

Development and pilot evaluation of a personalized decision support intervention for low risk prostate cancer patients.

OBJECTIVES: Development and pilot evaluation of a personalized decision support intervention to help men with early-stage prostate cancer choose among active surveillance, surgery, and radiation. METHODS: We developed a decision aid featuring long-term survival and side effects data, based on focus group input and stakeholder endorsement. We trained premedical students to administer the intervention to newly diagnosed men with low-risk prostate cancer seen at the University of California, San Francisco. Before the intervention, and after the consultation with a urologist, we administered the Decision Quality Instrument for Prostate Cancer (DQI-PC). We hypothesized increases in two knowledge items from the DQI-PC: How many men diagnosed with early-stage prostate cancer will eventually die of prostate cancer? How much would waiting 3 months to make a treatment decision affect chances of survival? Correct answers were: "Most will die of something else" and "A little or not at all." RESULTS: The development phase involved 6 patients, 1 family member, 2 physicians, and 5 other health care providers. In our pilot test, 57 men consented, and 44 received the decision support intervention and completed knowledge surveys at both timepoints. Regarding the two knowledge items of interest, before the intervention, 35/56 (63%) answered both correctly, compared to 36/44 (82%) after the medical consultation (P = .04 by chi-square test). CONCLUSIONS: The intervention was associated with increased patient knowledge. Data from this pilot have guided the development of a larger scale randomized clinical trial to improve decision quality in men with prostate cancer being treated in community settings.

The Effects of Coaching Patients to List Questions Before Visiting Cancer Specialists: Retrospective Evaluation of Visit Preparation in a Rural, Underserved Setting.

BACKGROUND: A community-based organization implemented an evidence-based intervention to help rural cancer patients list questions before oncology visits. OBJECTIVE: Was the question-listing intervention effective in reducing anxiety and increasing decision self-efficacy? METHODS: The organization surveyed patients on decision self-efficacy (273 respondents, 99% response rate) and anxiety (190, 68%) before and after question-listing interventions delivered from 2006 - 2011. We analyzed responses using two-sided paired t-tests at 5% significance and conducted linear regression to identify significant predictors of change. We examined predictors related to the patient (location, demographics, disease status and baseline decision self-efficacy and anxiety); the intervention (including interventionist case volume); and the visit (including type of doctor seen). RESULTS: Question-listing was associated with higher mean decision self-efficacy (2.70/3.43 pre/post, 1-4 min-max, P<.001) and lower mean anxiety (7.26/5.87, 1-10 min-max, P<.001). Significant predictors of change in decision self-efficacy included: patient location; interventionist case volume; baseline decision self-efficacy and anxiety. Higher baseline anxiety was also associated with reductions in anxiety. CONCLUSIONS: In a sustained community-based implementation, the intervention helped patients prepare for oncology visits. Patients reported higher self-efficacy and lower anxiety.

Decision support by telephone: randomized controlled trial in a rural community setting.

OBJECTIVE: Our community-based participatory research partnership previously evaluated Consultation Planning (CP), a question-listing intervention delivered in-person. We now report on effectiveness, cost, and value of delivering CP by telephone (Tele-CP). METHODS: Between 2007 and 2010, we randomly assigned rural women with a diagnosis of breast cancer to receive Tele-CP or In-Person CP. We compared ratings of decision self-efficacy (0 minimum to 4 maximum) with a pre-specified non-inferiority margin of 15%. We also explored psychosocial and economic outcomes. RESULTS: Tele-CP (n=35) recipients reported mean decision self-efficacy ratings of 3.53 versus 3.44 for in-person (n=32). Under intent-to-treat analysis, we rejected the null hypothesis of greater than 0.52 inferiority for Tele-CP (95% CI for difference: -0.44 to 0.13, p=0.006). The intervention costs averaged $48 for Tele-CP versus $78 in-person (95% CI for difference: -$63 to $2). Mean willingness-to-pay was $154 for Tele-CP and $144 for in-person (95% CI for difference: -$88 to $108). CONCLUSION: Tele-CP was non-inferior to In-Person CP, cost no more, and was equally valued by patients. PRACTICE IMPLICATIONS: Telephone delivery of Consultation Planning can achieve comparable quality, cost, and value as in-person. Organizations offering Consultation Planning or similar question-listing interventions should consider adopting telephone delivery.

Using the critical incident technique in community-based participatory research: a case study.

BACKGROUND: Successful community-based participatory research involves the community partner in every step of the research process. The primary study for this paper took place in rural, Northern California. Collaborative partners included an academic researcher and two community based resource centers that provide supportive services to people diagnosed with cancer. OBJECTIVES: This paper describes our use of the Critical Incident Technique (CIT) to conduct Community-based Participatory Research. We ask: Did the CIT facilitate or impede the active engagement of the community in all steps of the study process? METHODS: We identified factors about the Critical Incident Technique that were either barriers or facilitators to involving the community partner in every step of the research process. CONCLUSIONS: Facilitators included the CIT's ability to accommodate involvement from a large spectrum of the community, its flexible design, and its personal approach. Barriers to community engagement included training required to conduct interviews, depth of interview probes, and time required. Overall, our academic-community partners felt that our use of the CIT facilitated community involvement in our Community-Based Participatory Research Project, where we used it to formally document the forces promoting and inhibiting successful achievement of community aims.