"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.

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.

Associations among living alone, social support and social activity in older adults.

OBJECTIVES: We examined cross-sectional associations of living alone with social isolation among community-dwelling older adults in Worcester County, Massachusetts, USA. METHODS: Four hundred participants 65 years old and older were recruited in community group settings or by direct mail. Participants were queried for living status, social support, frequency of social activity, sociodemographic and lifestyle factors, and health conditions. Social isolation was assessed by lack of social support and decreased frequency of social activity. Physical activity (PA) was measured via an accelerometer and global positioning system (GPS), which was worn by the participant, for at least 7 consecutive days. RESULTS: Participants living alone (N = 110) had less social support than those living with others (N = 290) (p < 0.001) but did not differ significantly in the frequency of their social activities. Group-setting recruitment was strongly associated with greater social activity (p < 0.001). Less social support was independently associated with a less-than-high-school education (p = 0.001), higher CES-D depression score (p < 0.001) and lower PA (p = 0.003). Less social activity was independently associated with a less-than-high-school education (p = 0.007) and annual income less than $50,000 (p = 0.01). DISCUSSION: Older adults who are socioeconomically disadvantaged, have less social support, and who live alone are more likely to be socially isolated and may benefit from continuation of low-cost social activities and increased social support inside the home. Identifying correlates of social isolation may inform future interventions.