ABSTRACT
Background: The Cystic Fibrosis Foundation (CFF) advises that all persons with cystic fibrosis (PwCF) visit a cystic fibrosis (CF) care center every 3 months for evaluation, treatment, surveillance, counseling, and education [1]. In March 2020, our clinic went into modified operations in response to the COVID-19 pandemic, necessitating a temporary change in our ability to conduct routine face-to-face visits. Within 1 month, we operationalized virtual visits in addition to face-to-face visits. During the pandemic, staff noticed a drop in clinic attendance, and we implemented a quality improvement (QI) plan to study and address this trend. Method(s): Our QI team is a multidisciplinary group that is part of the Cystic Fibrosis Learning Network (CFLN). We defined the clinic fill rate (CFR) as the number of people seen over the number of available clinic slots. Each week, we determined the number of PwCF scheduled the following week and compared that number with no-shows and cancellations that occurred during that 7-day period. We also determined the number of PwCF scheduled 1 month ahead to compare it with weekly data. We used a key driver diagram to help focus our interventions (change ideas). Using run charts, we analyzed data each week to identify trends and variances. We used plan-do-study-act cycles and implemented initial interventions centered on publicizing CFF follow-up guidelines in town hall meetings, emails, and newsletters. We later identified PwCF who had a no-show history, and before clinics, our social worker communicated with each family (telephone or text) to remind them of the upcoming visit and identify any barriers to attending. During our study, Oregon experienced a surge in COVID-19 cases from the omicron variant, andwe overlaid our data with a graph of cases. Result(s): CFR was measured in 598 encounters over 28 weeks. CFR 1 month in advancewas 79%. In theweek before clinic, CFRwas 84%. After theweek, overall CFR was 66% (68% for face-to-face visits, 58% for virtual visits). Fifteen percent of our cancellations were COVID-related (increasing to 21% during the surge), but CFR did not change during the surge. After our intervention, those contacted in advance came to clinic 93% of the time, and our CFR improved to 74.8%. Conclusion(s): An 84% CFR, measured 1 week ahead of clinic, was dropping to an average of 66% because of late cancellations and no-shows, and widespread education about clinic attendance guidelines did not increase the rate. Having our social worker communicate directly with PwCF increased the overall CFR closer to our advance numbers, and 93% came to clinic. These communications also served as an additional patient interaction during which other social work needs were identified. Overall reduced clinic attendance may be related to the indirect impact of the pandemic and benefits of modulator therapy.We need to gather more postimplementation data and to consider different approaches to partnering with PwCF to achieve ideal follow-up.Copyright © 2022, European Cystic Fibrosis Society. All rights reserved
ABSTRACT
Background: Currently, Black patients make up 20% of people living with multiple myeloma, yet they represent only 6% of participants in clinical trials.1 The underrepresentation of Black patients in clinical trials can contribute to outcome disparities thereby negatively impacting health equity in cancer treatment and outcomes.2 This project examined attitudes towards clinical trials among Black multiple myeloma patients and caregivers. Findings will inform the development of programs aimed at increasing clinical trial participation in this population. Methods: In 2021, the Cancer Support Community conducted an online survey to gain insights on barriers, facilitators, and perceptions of clinical trials among Black multiple myeloma patients and caregivers/care partners. Survey questions were informed by insights from prior focus groups. 94 patients and 101 caregivers were surveyed. Results: Most participants were male (62%) and African American (90%). 5% identified as African Caribbean and 5% as Black and Hispanic. The average age was 46 years. Just over half (51%) currently or previously participated in clinical trials. Of those who chose not to participate in a trial, the most common reasons were fear of side effects (46%) and fear of receiving a placebo (38%). Another barrier to participation reported was discomfort with being randomly assigned to a treatment (56%). Participants reported a significant level of distrust in medical research and doctors, saying that it was “very or somewhat likely” that doctors provide treatment as part of an experiment without patient consent (41%) and that they might be used as a “guinea pig” (25%). Of note, 57% of respondents said COVID had changed their attitude towards participating in clinical trials. 14 of 16 factors mentioned in our focus groups were affirmed by more than half of respondents as facilitating participation in a clinical trial. The top factors were: Understanding potential side effects (66%) My health care team speaks to me about trials (65%) Compensation offered for transportation, childcare, or time off work (62%) My family/community support my decision (61%). Conclusions: These findings are consistent with previous research which found that cancer patients reported the biggest attitudinal barriers to clinical trial participation were fear of side effects, distrust in medical research, and random assignment to clinical trial groups.3 Our study highlights that Blacks and African Americans living with multiple myeloma value multifactorial efforts to increase clinical trial participation: logistical and financial interventions, patient/provider communication, and culturally sensitive support and education programs. These programs can also work to improve health equity by reducing barriers to overall care and encouraging Blacks and African Americans living with multiple myeloma to be active members of their health care team.
ABSTRACT
Introduction A nurse navigator is a registered nurse who serves as a patient advocate, educator, and coordinatorfor newly referred cancer patients. Nurse navigators assist with the coordination of care before a patient's firstappointment with their provider. In some healthcare centers, they are also the point-person throughout a patient'sentire treatment process. The nurse navigator role is designed to promote cancer patient empowerment throughadvocacy, educational support, resource navigation, and psychosocial care. Our study attempted to assess theimpact of a newly implemented nurse navigator program, in an academic setting, and measure the effect on patientknowledge, care coordination, and emotional well-being before their breast oncology appointment. Methods A mixed-methods approach was implemented. We provided an Institutional Review Board-approved 9-question survey created from items adapted from Patient Satisfaction with Interpersonal Relationship withNavigators (PSN-I) to UCSF Breast Care Center patients before their first appointments with a breast oncologyprovider. After survey completion, patients were asked to participate in an open-ended interview about their patientexperience with a member of the study team. Results 50 patients were surveyed. 22 (44%) patients surveyed had nurse contact and 28 (56%) did not have priornurse contact before their appointment. With regards to patient knowledge prior to the oncology appointment, 16 out of 22 (73%) of patients with nurse contact felt informed compared to 16 out of 28 (57%) of patients without nurse contact. With regards to having initial questions ans wered before their visit, 11 out of 22 (50%) of patients with nursecontact strongly agreed compared to 4 out of 28 (14.3%) of patients without nurse contact. In response to thestatement, “my care is coordinated effectively in the Breast Care Center,” 15 out of 22 (68%) of patients with nursecontact strongly agreed compared to 12 out of 28 (43%) of patients without nurse contact. Patients with nurse contact were asked whether speaking with a nurse did 1) improve their patient experience and2) better deal with stressful emotions. Among 22 patients with nurse contact, 16 (73%) of patients with nurse contactstrongly agreed to statement 1, and 20 (91%) agreed with statement 2. Patients without nurse contact were asked topredict whether nurse contact would 1) improve their patient experience and 2) better deal with stressful emotions.Out of 28 patients, 14 (50%) strongly agreed to both statements. From our open-ended interviews, we found the following themes: appreciation for preliminary knowledge,identification of knowledge gaps, appointment scheduling, and insurance coverage barriers, and humanistic carefrom nurse navigators. Patients reported that they appreciate not only a nurse navigator's facilitation in coordinationand education but also their companionship during their cancer journey. Conclusions Nurse navigators can play a vital role in improving patient knowledge, workflow/care coordination, andemotional well-being at cancer centers. A greater proportion of patients with initial nurse contact felt informed beforetheir appointment and believed their care was effectively coordinated than those without nurse contact. The majority of patients with nurse contact believed their nurses improved their patient experience and relieved anxiety andstress. Based on this study, we will fully implement initial contact with patients to provide information and coordinateservices for in-person visits. Given the changes brought by COVID, that first contact could also be with a nurse orphysician via video consult prior to an in-person appointment. Future studies should investigate the impact of alongitudinal nurse navigator in providing continuity of care beyond the first referral.