379 Background: Within remote symptom monitoring (RSM) programs, nurses may respond to many symptom alerts in a given day. The shift to standard-of-care delivery necessitates adding this responsibility to an already strained nursing workforce. Thus, selecting the right symptoms to alert is critical and requires care to minimize non-actionable alerts. Little is known about strategies to reduce alert burden on nursing. Methods: In this quality improvement initiative, we aimed to improve the nurse’s perception of alert utility and minimize “noise” or alerts that were not actionable. A continuous quality improvement approach, with multiple Plan Do Study Act (PDSA) cycles, was conducted based on nursing feedback. Modifications were captured, described, and categorized. Alert details prior to and after changes are described. Descriptive statistics were calculated using frequencies and percentages for categorical variables. Results: In PDSA cycle 1, we allowed nurses to set an expected level for specific symptoms to “snooze” alerts for up to 1 month in June 2021. Snoozed alerts did not trigger to nurses. Overall, 5.8% (405/7029) of symptom alerts were snoozed from late June 2021-May 2023 (Alert Redundancy Change). In PDSA cycle 2, an option “I don’t want a call back” was added for patients in late January 2022; 42.8% (2394/5595) of subsequent symptom alert surveys requested no call back from the nurse (Survey Response Threshold Change). In PDSA cycle 3, nurses reported that “insomnia” was not actionable weekly. This was encountered in 7.2% (170/2368) of surveys prior to removal at the end of June 2022. “Insomnia” was replaced with “rash”, which generated alerts in 6.5% (295/4549) of surveys (Survey Content Change). In PDSA cycle 4, nurses identified that hospitalized patients generated alerts that were not appropriate for outpatient action. The system was modified to add a banner bar highlighting to the nurse that the patient was hospitalized and alert could be closed with a response of “patient hospitalized” late February 2023. Following implementation, a total of 9.1% (35/384) enrolled patients either self-selected or a navigator marked them as hospitalized and therefore their surveys were paused and/or the nurse was able to close the alert selecting “patient hospitalized”. (Survey Location Change). With these changes, there were 9.9% (97/975) surveys in May 2023 with at least one actionable alert. Conclusions: Modifications to alert systems can reduce the number of non-actionable alerts that nursing must address in real-world settings, thus minimizing burden on staff.
270 Background: Patients now have the ability to utilize electronic patient reported outcomes (ePROs) for remote symptom monitoring (RSM). This analysis seeks to better understand trajectory of reported symptoms during treatment for patients with gynecologic cancer participating in RSM. Methods: We approached patients with gynecological cancer initiating treatment at the Mitchell Cancer Institute (MCI) between 7/1/21-4/30/2022. Patients were eligible if they were starting chemotherapy, targeted therapy, or immunotherapy for a new cancer. Patients seeking a second opinion were excluded. Enrolled patients received symptom survey (PRO-CTCAE questions) via text or email once per week. Initially, only severe alerts were forwarded to the clinical care team; moderate alerts were forwarded to clinical teams once they were comfortable with alert management. Patients completed symptom assessments for 24 weeks or until withdrawal. Patient age at enrollment, race, sex, cancer type, cancer stage, and PROs were abstracted from electronic health records and the PRO platform (Carevive). Descriptive statistics were calculated using frequencies and percentages for categorical variables and median and interquartile ranges (IQR) for continuous variables. Results: A total of 60 female patients with gynecological cancer were enrolled; 33% were Black or African American and 67% were White; median age was 61 years (IQR 53-68). Seventy-eight percent (47/60) of patients reported 379 symptoms with at least one moderate or severe alert during this time period; 32% considered moderate and 68% considered severe. Overall, the most frequently reported symptom was pain (29%). At baseline (week 0), 14% and 41% of 56 patients reported moderate symptoms and severe symptoms, respectively. Symptom burden decreased over time with 4% and 7% of 27 patients who completed a survey at 12 weeks reporting moderate and severe symptoms. Specific symptom trajectories followed similar patterns. Conclusions: In our sample, patients reported the majority of symptoms during the first three months of treatment. Symptom trajectory decreased with time, suggesting symptoms are being effectively monitored and addressed by the clinical teams engaging in RSM. Future research is needed to understand if symptom improvement translates to increased quality of life, decreased hospitalizations, and increased survival for patients, as well as lessen the burden of call volume on the clinical team.
Remote symptom monitoring (RSM) using electronic patient-reported outcomes (ePROS) connects patients and health care teams between appointments. Patient-perceived benefits and drawbacks of RSM are well-known, but health care team members' perceptions are less clear.
This exploratory study examined the context and consequences of custodial grandparenting, along with attitudes and preferences regarding future planning among 22 African-American custodial grandmothers.A mixed-method research design was employed. Based on our integration of two theories regarding future planning and health behavior change, caregiving, emotional distress, religiosity and spirituality, and future planning were assessed using questionnaires along with semi-structured interviews.African-American custodial grandmothers (mean age M = 53.64, SD = 9.58) perceived their caregiving role as rewarding (72%) yet challenging (86%). More than 40% reported significant emotional distress (CES-D ≥ 16) that warrants clinical attention. Findings showed that while 64% of study participants had future plans regarding who will substitute in their caregiving role if they become incapacitated, only 9% had completed a living will. Three major themes emerged regarding custodial grandmothers' caregiving role which includes: (1) rewards; (2) challenges including feeling overwhelmed and health concerns; and (3) caregiving decisions including conflicts between 'My plan was…/put self on-hold' for grandchildren and difficulty with future planning. These themes highlighted the dynamics of caregiving across time, including current context and the ongoing process of decision-making.Findings suggest that while African-American custodial grandmothers find caregiving rewarding, they face unique challenges in contemplating and developing future plans. Custodial grandmothers think about substitute caregivers for their grandchildren but need assistance communicating a plan focused on their own needs for future care. Culturally sensitive interventions designed to facilitate effective utilization of future plans within this caregiver population are needed.
Background: Nearly 3 million U.S. family caregivers support someone with cancer. However, oncology clinic-based service lines that proactively screen, assess, and support cancer caregivers are nearly nonexistent. Objective: To examine first-year experiences of a nurse-led clinic-based telehealth support service (FamilyStrong) for family caregivers of patients with recently diagnosed grade IV brain tumors. Methods: This is a retrospective evaluation of operational outcomes from initial implementation of the FamilyStrong Service, developed in partnership with Caregiver and Bereavement Support Services at the University of Alabama at Birmingham (UAB) and the UAB Center for Palliative and Supportive Care. From August 2018 to December 2019, 53 family caregivers were proactively identified and enrolled by a palliative care nurse, working approximately one day/week, who performed monthly caregiver distress thermometer screenings by phone and provided emotional, educational, problem-solving, and referral support. Results: Enrolled family caregivers were a mean age of 53.5 years and mostly female (62.3%), full- or part-time employed (67.9%), and the patient's spouse/partner (79.3%). Caregivers provided support 6.7 days/week for 11.2 hours/day. The palliative care nurse performed 235 distress screenings and provided support that included 68 documented instances of emotional, problem-solving, and educational support, 41 nurse-facilitated communications with the neuro-oncology team about patient issues, and 24 referrals to UAB and community services (e.g., counseling). The most common problems caregivers wanted assistance with included: managing their relative's health condition and symptoms (51%), coordinating care/services (21%), and planning for the future/advance care planning (17%). Discussion: The FamilyStrong Program is among the first "real world" oncology clinic-based formal support services for advance cancer family caregivers.
152 Background: Given the high risk of COVID-19 mortality, patients with cancer are not only vulnerable to physical consequences of COVID-19 infection, but also to adverse psychological outcomes, including fear of COVID-19. Without intervention, psychological distress in patients with cancer can lead to worsening symptoms, poor quality of life, and lower survival. We sought to evaluate the association between fear of COVID-19 and psychological distress for under-resourced patients with cancer during the pandemic. Methods: This observational, longitudinal survey study, fielded during early (May 20- July 11, 2020) and later pandemic (December 2-December 23, 2020), evaluated the pandemic’s impact on patients with cancer receiving Patient Advocate Foundation (PAF) services from July 2019 – April 2020. Questions focused on individual experiences with COVID-19 and psychological, emotional, physical, and material effects from the pandemic. The validated Fear of COVID-19 Scale was used to determine fear of COVID-19. Psychological distress was determined using a four-item questionnaire by Holingue et al. (score range 4 – 16). Means and 95% confidence intervals (CI) were estimated using generalized estimating equation modeling with repeated measures to assess the effect of fear of COVID-19 on psychological distress early and later in the pandemic. Models adjusted for age, sex, race/ethnicity, region, annual household income, household size, marital status, employment status, Area Deprivation Index category, Rural-Urban Commuting Code category, cases per 100,000 in county of residence, cancer type, and number of comorbidities. Results: Amongst 1199 survey respondents, 94% considered themselves high risk for COVID-19. 448 respondents completed both the first and second survey. The majority of respondents were female (72%) and age 56-75 (55%); 40% were Black, Indigenous, or Persons of Color. In adjusted models of respondents who completed the early pandemic survey, respondents with more fear of COVID-19 had a higher mean psychological distress score (10.21; 95% CI 9.38-11.03) compared to respondents with less fear (7.55; 95% CI 6.75-8.36). Among those who completed the later pandemic survey, median fear of COVID-19 decreased (20 vs 19)median distress scores remained the same (8); respondents with more fear of COVID-19 had a higher mean psychological distress score (9.98; 95%CI 9.04-10.92) compared to respondents with less fear (7.87; 95%CI 6.98-8.76). Conclusions: Fear of COVID-19 was linked to psychological distress and persisted throughout the pandemic among under-resourced patients with cancer. Timely psychosocial support is critical to meet increased care needs experienced by patients with cancer during the COVID-19 pandemic. Given these results, fear of COVID-19 could be considered as a trigger to integrate psychological interventions in patients with cancer to treat psychological distress.
Abstract Background Symptoms in patients with advanced cancer are often inadequately captured during encounters with the healthcare team. Emerging evidence demonstrates that weekly electronic home-based patient-reported symptom monitoring with automated alerts to clinicians reduces healthcare utilization, improves health-related quality of life, and lengthens survival. However, oncology practices have lagged in adopting remote symptom monitoring into routine practice, where specific patient populations may have unique barriers. One approach to overcoming barriers is utilizing resources from value-based payment models, such as patient navigators who are ideally positioned to assume a leadership role in remote symptom monitoring implementation. This implementation approach has not been tested in standard of care, and thus optimal implementation strategies are needed for large-scale roll-out. Methods This hybrid type 2 study design evaluates the implementation and effectiveness of remote symptom monitoring for all patients and for diverse populations in two Southern academic medical centers from 2021 to 2026. This study will utilize a pragmatic approach, evaluating real-world data collected during routine care for quantitative implementation and patient outcomes. The Consolidated Framework for Implementation Research (CFIR) will be used to conduct a qualitative evaluation at key time points to assess barriers and facilitators, implementation strategies, fidelity to implementation strategies, and perceived utility of these strategies. We will use a mixed-methods approach for data interpretation to finalize a formal implementation blueprint. Discussion This pragmatic evaluation of real-world implementation of remote symptom monitoring will generate a blueprint for future efforts to scale interventions across health systems with diverse patient populations within value-based healthcare models. Trial registration NCT04809740 ; date of registration 3/22/2021.
Context: Respecting Choices is an evidence-based model of facilitating advance care planning (ACP) conversations between health-care professionals and patients. However, the effectiveness of whether lay patient navigators can successfully initiate Respecting Choices ACP conversations is unknown. As part of a large demonstration project (Patient Care Connect [PCC]), a cohort of lay patient navigators underwent Respecting Choices training and were tasked to initiate ACP conversations with Medicare beneficiaries diagnosed with cancer. Objectives: This article explores PCC lay navigators’ perceived barriers and facilitators in initiating Respecting Choices ACP conversations with older patients with cancer in order to inform implementation enhancements to lay navigator-facilitated ACP. Methods: Twenty-six lay navigators from 11 PCC cancer centers in 4 states (Alabama, George, Tennessee, and Florida) completed in-depth, one-on-one semistructured interviews between June 2015 and August 2015. Data were analyzed using a thematic analysis approach. Results: This evaluation identifies 3 levels—patient, lay navigator, and organizational factors in addition to training needs that influence ACP implementation. Key facilitators included physician buy-in, patient readiness, and navigators’ prior experience with end-of-life decision-making. Lay navigators’ perceived challenges to initiating ACP conversations included timing of the conversation and social and personal taboos about discussing dying. Conclusion: Our results suggest that further training and health system support are needed for lay navigators playing a vital role in improving the implementation of ACP among older patients with cancer. The lived expertise of lay navigators along with flexible longitudinal relationships with patients and caregivers may uniquely position this workforce to promote ACP.
