"Like not having an arm": a qualitative study of the impact of visitor restrictions on cancer care during the COVID-19 pandemic.

PURPOSE: Visitor restriction policies to prevent the spread of COVID-19 among patients and clinicians were widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision-making. The aim of this study was to explore how visitor restrictions impacted cancer treatment decision-making and care from patient and physician perspectives. METHODS: Sixty-seven interviews, including 48 cancer patients and 19 cancer and palliative care physicians from four academic cancer centers in the USA between August 2020 and July 2021. RESULTS: Visitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital care created challenges in cancer care that spanned three domains: practical, social, and informational. We identified eight themes that characterized challenges within the three domains across all three groups, and that these challenges had negative emotional and psychological consequences for both groups. Physicians perceived that patients' negative experiences due to lack of support through the physical presence of caregivers may have worsened patient outcomes. CONCLUSIONS: Our data demonstrate the tripartite structure of the therapeutic relationship in cancer care with caregivers providing critical support in the decision-making and care process to both patients and physicians. Caregiver absences led to practical, psychosocial, and informational burdens on both groups, and likely increased the risk of burnout among physicians. Our findings suggest that the quality of cancer care can be enhanced by engaging caregivers and promoting their physical presence during clinical encounters.

PPE portraits: patient and clinician experiences at a COVID-19 testing site.

Context: The COVID-19 pandemic mandated personal protective equipment (PPE) in healthcare settings, obscuring clinician faces and expressions, and depersonalizing patient care experiences. PPE Portraits (affixing a clinician's photo to the front of PPE) was first introduced in 2015 during the West Africa Ebola epidemic, and has been shown to help maintain patient-provider connection at times when patients may be fearful, isolated, and unable to identify clinicians caring for them. Objective: To evaluate patient and clinician experiences with PPE Portraits. Study Design: Implementation pilot with mixed methods evaluation. Setting: A drive-thru COVID-19 testing site affiliated with a large academic medical center. Population studied: Patients (n=18) and clinicians (n=6) interviewed in March-April 2020. Clinicians were recruited through convenience sampling. Clinicians answered questions via recorded interviews or email. Patients were interviewed by phone through random sampling stratified by date of service. Patients were sent a post-visit survey. Intervention: Health workers affixed a PPE Portrait in order to connect better with individuals in their care. Outcome Measures: Patient and clinician experiences with PPE Portraits (assessed through inductive coding of qualitative data) and patient experiences with fear (assessed through survey). Results: Patient surveys indicated varying levels of fear, including mild (16%), moderate (66%), and severe (18%). Patients reported that seeing the PPE Portrait was comforting; four patients stated that it did not impact their care because they already trusted the facility. Clinicians corroborated patient sentiments, reporting that the intervention humanized both the testing experience for patients and also the interactions among patients and clinicians. They noted that patients seemed more at ease and that portraits fostered connection and trust, thereby reducing anxiety and fear and signaling to patients that they were being given holistic, optimal care. A majority of clinicians felt this intervention should be replicated, and they recommended having surplus portrait supplies on site to facilitate ad hoc portrait creation. Conclusion: PPE Portraits humanized the COVID-19 testing experiences for patients and clinicians during a time of fear. Clinicians recommended PPE Portraits for other healthcare settings that require PPE. Future research could assess how PPE Portraits promote patient-provider connection and trust.

Presence for racial justice: disrupting racism through physician-patient communication.

Context: Anti-Black racism is firmly rooted in US healthcare, but many clinicians do not have the tools and language to question their biases and address racism in clinical practice, eg biased communication practices such as "non-compliance" in medical documentation. Objective: Presence 5 for Racial Justice (P5RJ) leverages the Presence 5 patient-provider communication framework to identify anti-racism communication practices that support trusting relationships between physicians and Black patients and empower Black individuals in clinical care. Study design: For this multi-phased community-based participatory research (CBPR) overseen by an advisory board of clinicians and patients at four community clinics, we conducted a literature review, interviews with Black patients, clinician small-group discussions, and design thinking interviews with non-medical professionals. We mapped emergent communication practices to Presence 5 domains to create P5RJ. Setting: Four primary care clinics primarily serving Black patients in Oakland CA; Rochester NY; Leeds AL; Memphis TN. Population Studied: Total 113 participants (40 non-medical interviews, 37 Black patients interviewed, 12 advisory board members, 24 clinicians in discussion); 30 reviewed articles. Outcomes: Strategies on how providers, through communication and connection in the clinical visit, can navigate and address structural, institutional, and personally mediated forms of racism faced by Black patients. Results: P5RJ practices included: 1) Prepare with intention by reflecting on identity, bias, and power dynamics; and creating structures to address emergent bias and social determinants of health; 2) Listen intently and completely by using focused interpersonal listening without interruption and deep listening for racism impacts; give patients time and space to tell their story; 3) Agree on what matters most by having explicit conversations about patient goals, treatment comfort, consent, and referral planning; 4) Connect with the patient's story by acknowledging socio-political factors influencing patient health and focusing on positive efforts/events to encourage patient agency; 5) Explore emotional cues by noticing and naming patient emotions and considering how racial trauma might influence these emotions. Conclusion: P5RJ practices offer strategies to reflect on clinician biases, address racism and known gaps in care for Black patients and promote health equity in their clinical care.

Developing best practices for PPE Portraits across 25 sites: a systematic assessment of implementation and spread of adaptations using FRAME.

BACKGROUND: Adaptation, a form of modification that aims to improve an intervention's acceptability and sustainability in each context, is essential to successful implementation in some settings. Due to the COVID-19 pandemic, clinicians have rapidly adapted how they deliver patient care. PPE Portraits are a form of adaptation, whereby health workers affix a postcard size portrait of themselves to the front of their personal protective equipment (PPE) to foster human connection during COVID-19. METHODS: We used the expanded framework for reporting adaptations and modifications to evidence-based interventions (FRAME) method to better understand the reasoning behind and results of each adaptation. We hypothesized that using the FRAME in conjunction with design-thinking would lead to emerging best practices and that we would find adaptation similarities across sites. Throughout multiple implementations across 25 institutions, we piloted, tracked, and analyzed adaptations using FRAME and design thinking. For each adaptation, we assessed the stage of implementation, whether the change was planned, decision makers involved, level of delivery impacted, fidelity to original intervention, and the goal and reasoning for adaptation. We added three crucial components to the FRAME: original purpose of the adaptation, unintended consequences, and alternative adaptations. RESULTS: When implementing PPE Portraits across settings, from a local assisted living center's memory unit to a pediatric emergency department, several requests for adaptations arose during early development stages before implementation. Adaptations primarily related to (1) provider convenience and comfort, (2) patient populations, and (3) scale. Providers preferred smaller portraits and rounded (rather than square) laminated edges that could potentially injure a patient. Affixing the portrait with a magnet was rejected given the potential choking hazard the magnetic strip presented for children. Other adaptations, related to ease of dissemination, included slowing the process down during early development and providing buttons, which could be produced easily at scale. CONCLUSIONS: The FRAME was used to curate the reasoning for each adaptation and to inform future dissemination. We look forward to utilizing FRAME including our additions and design thinking, to build out a range of PPE Portrait best practices with accompanying costs and benefits.

Rapid Implementation of Video Visits in Neurology During COVID-19: Mixed Methods Evaluation.

BACKGROUND: Telemedicine has been used for decades. Despite its many advantages, its uptake and rigorous evaluation of feasibility across neurology's ambulatory subspecialties has been sparse. However, the COVID-19 pandemic prompted health care systems worldwide to reconsider traditional health care delivery. To safeguard health care workers and patients, many health care systems quickly transitioned to telemedicine, including across neurology subspecialties, providing a new opportunity to evaluate this modality of care. OBJECTIVE: To evaluate the accelerated implementation of video visits in ambulatory neurology during the COVID-19 pandemic, we used mixed methods to assess adoption, acceptability, appropriateness, and perceptions of potential sustainability. METHODS: Video visits were launched rapidly in ambulatory neurology clinics of a large academic medical center. To assess adoption, we analyzed clinician-level scheduling data collected between March 22 and May 16, 2020. We assessed acceptability, appropriateness, and sustainability via a clinician survey (n=48) and semistructured interviews with providers (n=30) completed between March and May 2020. RESULTS: Video visits were adopted rapidly; overall, 65 (98%) clinicians integrated video visits into their workflow within the first 6 implementation weeks and 92% of all visits were conducted via video. Video visits were largely considered acceptable by clinicians, although various technological issues impacted their satisfaction. Video visits were reported to be more convenient for patients, families, and caregivers than in-person visits; however, access to technology, the patient's technological capacity, and language difficulties were considered barriers. Many clinicians expressed optimism about future utilization of video visits in neurology. They believed that video visits promote continuity of care and can be incorporated into their practice long-term, although several insisted that they can never replace the in-person examination. CONCLUSIONS: Video visits are an important addition to clinical care in ambulatory neurology and are anticipated to remain a permanent supplement to in-person visits, promoting patient care continuity, and flexibility for patients and clinicians alike.

Patient Experiences of Specialty Palliative Care in the Perioperative Period for Cancer Surgery.

CONTEXT: Though patients undergoing treatment for upper gastrointestinal (GI) cancers frequently experience a range of sequelae and disease recurrence, patients often do not receive specialty palliative care soon after diagnosis and it is unknown in what ways they may benefit. OBJECTIVES: To understand patient experiences of specialty palliative care in the perioperative period for patients seeking curative intent upper GI oncologic surgery. METHODS: As part of a randomized controlled trial, we conducted in-depth interviews between November 2019 and July 2021 with 23 patients in the intervention arm who were undergoing curative intent treatment for upper GI cancers and who were also followed by the specialty palliative care team. RESULTS: We found five themes that characterized patient experiences and perceptions of specialty palliative care. Patients typically had limited prior awareness of palliative care (theme 1), but during the study, came to understand it as a "talking" intervention (theme 2). Patients whose concerns aligned with palliative care described it as being impactful on their care (theme 3). However, most patients expressed a focus on cure from their cancer and less perceived relevance for integration of palliative care (theme 4). Integrating specialist palliative care practitioners with surgical teams made it difficult for some patients to identify how palliative care practitioners differed from other members of their care team (theme 5). CONCLUSION: While receipt of specialty palliative care in the perioperative period was generally perceived positively and patients appreciated palliative care visits, they did not describe many needs typically met by palliative care practitioners. TRIAL REGISTRATION: clinicaltrials.gov registration: NCT03611309.

Analysis of FRAME data (A-FRAME): An analytic approach to assess the impact of adaptations on health services interventions and evaluations.

Introduction: Tracking adaptations during implementation can help assess and interpret outcomes. The framework for reporting adaptations and modifications-expanded (FRAME) provides a structured approach to characterize adaptations. We applied the FRAME across multiple health services projects, and developed an analytic approach to assess the impact of adaptations. Methods: Mixed methods analysis of research diaries from seven quality improvement (QI) and research projects during the early stages of the COVID-19 pandemic. Using the FRAME as a codebook, discrete adaptations were described and categorized. We then conducted a three-step analysis plan: (1) calculated the frequency of adaptations by FRAME categories across projects; (2) qualitatively assessed the impact of adaptations on project goals; and (3) qualitatively assessed relationships between adaptations within projects to thematically consolidate adaptations to generate more explanatory value on how adaptations influenced intervention progress and outcomes. Results: Between March and July 2020, 42 adaptations were identified across seven health services projects. The majority of adaptations related to training or evaluation (52.4%) with the goal of maintaining the feasibility (66.7%) of executing projects during the pandemic. Five FRAME constructs offered the most explanatory benefit to assess the impact of adaptations on program and evaluation goals, providing the basis for creating an analytic approach dubbed the "A-FRAME," analysis of FRAME data. Using the A-FRAME, the 42 adaptations were consolidated into 17 succinct adaptations. Two QI projects discontinued altogether. Intervention adaptations related to staffing, training, or delivery, while evaluation adaptations included design, recruitment, and data collection adjustments. Conclusions: By sifting qualitative data about adaptations into the A-FRAME, implementers and researchers can succinctly describe how adaptations affect interventions and their evaluations. The simple and concise presentation of information using the A-FRAME matrix can help implementers and evaluators account for the influence of adaptations on program outcomes.

Effect of Perioperative Palliative Care on Health-Related Quality of Life Among Patients Undergoing Surgery for Cancer: A Randomized Clinical Trial.

Importance: Involvement of palliative care specialists in the care of medical oncology patients has been repeatedly observed to improve patient-reported outcomes, but there is no analogous research in surgical oncology populations. Objective: To determine whether surgeon-palliative care team comanagement, compared with surgeon team alone management, improves patient-reported perioperative outcomes among patients pursuing curative-intent surgery for high morbidity and mortality upper gastrointestinal (GI) cancers. Design, Setting, and Participants: From October 20, 2018, to March 31, 2022, a patient-randomized clinical trial was conducted with patients and clinicians nonblinded but the analysis team blinded to allocation. The trial was conducted in 5 geographically diverse academic medical centers in the US. Individuals pursuing curative-intent surgery for an upper GI cancer who had received no previous specialist palliative care were eligible. Surgeons were encouraged to offer participation to all eligible patients. Intervention: Surgeon-palliative care comanagement patients met with palliative care either in person or via telephone before surgery, 1 week after surgery, and 1, 2, and 3 months after surgery. For patients in the surgeon-alone group, surgeons were encouraged to follow National Comprehensive Cancer Network-recommended triggers for palliative care consultation. Main Outcomes and Measures: The primary outcome of the trial was patient-reported health-related quality of life at 3 months following the operation. Secondary outcomes were patient-reported mental and physical distress. Intention-to-treat analysis was performed. Results: In total, 359 patients (175 [48.7%] men; mean [SD] age, 64.6 [10.7] years) were randomized to surgeon-alone (n = 177) or surgeon-palliative care comanagement (n = 182), with most patients (206 [57.4%]) undergoing pancreatic cancer surgery. No adverse events were associated with the intervention, and 11% of patients in the surgeon-alone and 90% in the surgeon-palliative care comanagement groups received palliative care consultation. There was no significant difference between study arms in outcomes at 3 months following the operation in patient-reported health-related quality of life (mean [SD], 138.54 [28.28] vs 136.90 [28.96]; P = .62), mental health (mean [SD], -0.07 [0.87] vs -0.07 [0.84]; P = .98), or overall number of deaths (6 [3.7%] vs 7 [4.1%]; P > .99). Conclusions and Relevance: To date, this is the first multisite randomized clinical trial to evaluate perioperative palliative care and the earliest integration of palliative care into cancer care. Unlike in medical oncology practice, the data from this trial do not suggest palliative care-associated improvements in patient-reported outcomes among patients pursuing curative-intent surgeries for upper GI cancers. Trial Registration: ClinicalTrials.gov Identifier: NCT03611309.

The Presence 5 for Racial Justice Framework for anti-racist communication with Black patients.

OBJECTIVE: To identify communication practices that clinicians can use to address racism faced by Black patients, build trusting relationships, and empower Black individuals in clinical care. DATA SOURCES: Qualitative data (N = 112 participants, August 2020-March 2021) collected in partnership with clinics primarily serving Black patients in Leeds, AL; Memphis, TN; Oakland, CA; and Rochester, NY. STUDY DESIGN: This multi-phased project was informed by human-centered design thinking and community-based participatory research principles. We mapped emergent communication and trust-building strategies to domains from the Presence 5 framework for fostering meaningful connection in clinical care. DATA COLLECTION METHODS: Interviews and focus group discussions explored anti-racist communication and patient-clinician trust (n = 36 Black patients; n = 40 nonmedical professionals; and n = 24 clinicians of various races and ethnicities). The Presence 5 Virtual National Community Advisory Board guided analysis interpretation. PRINCIPAL FINDINGS: The emergent Presence 5 for Racial Justice (P5RJ) practices include: (1) Prepare with intention by reflecting on identity, bias, and power dynamics; and creating structures to address bias and structural determinants of health; (2) Listen intently and completely without interruption and listen deeply for the potential impact of anti-Black racism on patient health and interactions with health care; (3) Agree on what matters most by having explicit conversations about patient goals, treatment comfort and consent, and referral planning; (4) Connect with the patient's story, acknowledging socioeconomic factors influencing patient health and focusing on positive efforts; (5) Explore emotional cues by noticing and naming patient emotions, and considering how experiences with racism might influence emotions. CONCLUSION: P5RJ provides a framework with actionable communication practices to address pervasive racism experienced by Black patients. Effective implementation necessitates clinician self-reflection, personal commitment, and institutional support that offers time and resources to elicit a patient's story and to address patient needs.