"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.

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.

A Nurse-Led Care Delivery App and Telehealth System for Patients Requiring Wound Care: Mixed Methods Implementation and Evaluation Study.

BACKGROUND: Innovative solutions to nursing care are needed to address nurse, health system, patient, and caregiver concerns related to nursing wellness, work flexibility and control, workforce retention and pipeline, and access to patient care. One innovative approach includes a novel health care delivery model enabling nurse-led, off-hours wound care (PocketRN) to triage emergent concerns and provide additional patient health education via telehealth. OBJECTIVE: This pilot study aimed to evaluate the implementation of PocketRN from the perspective of nurses and patients. METHODS: Patients and part-time or per-diem, wound care-certified and generalist nurses were recruited through the Stanford Medicine Advanced Wound Care Center in 2021 and 2022. Qualitative data included semistructured interviews with nurses and patients and clinical documentation review. Quantitative data included app use and brief end-of-interaction in-app satisfaction surveys. RESULTS: This pilot study suggests that an app-based nursing care delivery model is acceptable, clinically appropriate, and feasible. Low technology literacy had a modest effect on initial patient adoption; this barrier was addressed with built-in outreach and by simplifying the patient experience (eg, via phone instead of video calls). This approach was acceptable for users, despite total patient enrollment and use numbers being lower than anticipated (N=49; 17/49, 35% of patients used the app at least once beyond the orientation call). We interviewed 10 patients: 7 who had used the app were satisfied with it and reported that real-time advice after hours reduced anxiety, and 3 who had not used the app after enrollment reported having other resources for health care advice and noted their perception that this tool was meant for urgent issues, which did not occur for them. Interviewed nurses (n=10) appreciated working from home, and they reported comfort with the scope of practice and added quality of care facilitated by video capabilities; there was interest in additional wound care-specific training for nonspecialized nurses. Nurses were able to provide direct patient care over the web, including the few participating nurses who were unable to perform in-person care (n=2). CONCLUSIONS: This evaluation provides insights into the integration of technology into standard health care services, such as in-clinic wound care. Using in-system nurses with access to electronic medical records and specialized knowledge facilitated app integration and continuity of care. This care delivery model satisfied nurse desires for flexible and remote work and reduced patient anxiety, potentially reducing postoperative wound care complications. Feasibility was negatively impacted by patients' technology literacy and few language options; additional patient training, education, and language support are needed to support equitable access. Adoption was impacted by a lack of perceived need for additional care; lower-touch or higher-acuity settings with a longer wait between visits could be a better fit for this type of nurse-led care.

Caregiver Experiences Participating in a Home-Based Primary Care Program: A Pragmatic Evaluation Including Qualitative Interviews and Quantitative Surveys.

The aim of this evaluation was to assess caregiver experience and burden during their first year in a geriatric home-based primary care (HBPC) program with qualitative interviews and surveys. HBPC included in-home visits for homebound, older adult patients. Seventeen caregivers, with varied amount of experience with HBPC, participated in semi-structured interviews. Change in caregiver burden from baseline was captured for 44 caregivers at 3 months post-enrollment, 27 caregivers at 6 months, and 22 caregivers at 12 months. Satisfaction survey was administered at these timepoints, but the last response of 48 caregivers was analyzed. Caregiver interviews revealed three themes: caregiving stressors, reliance on HBPC in relation to other medical care, and healthcare in the home. Surveyed caregivers were highly satisfied, but burden did not change substantially over the 1 year intervention. Caregivers appreciated HBPC reduced patient transportation and provided satisfactory primary care, but additional research is needed to tailor this care to reduce caregiver burden.

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.

"It Isn't the Same": Experiences of Informal Caregivers of Older Adults Enrolled in a Home-Based Senior Care Program During COVID-19.

The coronavirus disease 2019 (COVID-19) pandemic placed new strains on informal caregivers, who are already vulnerable to negative psychosocial effects due to demands of the caregiving role. The current study aimed to explore the early impact of COVID-19 on caregivers living with and apart from care recipients. Semi-structured qualitative interviews with seven cohabitating and 10 distanced caregivers of patients in a home-based primary care program were conducted from April to November 2020. A framework matrix was used to identify patterns in caregiver experiences. Cohabitating and distanced caregivers reported shared concerns about COVID-19 and unique concerns dependent on cohabitation status. Cohabitating caregivers reported financial worries, care recipients with dementia being unable to understand restrictions, and concerns about community business changes. Distanced caregivers reported communication challenges with cognitively impaired care recipients and challenges with visitation policies. During pandemics, caregivers' clinical and policy support needs may differ depending on their place of residence relative to care recipients. [Journal of Gerontological Nursing, 49(3), 19-26.].

The costs and benefits of reducing racial-ethnic disparities in mental health care.

OBJECTIVE: Previous studies have found that timely mental health treatment can result in savings in both mental health and general medical care expenditures. This study examined whether reducing racial-ethnic disparities in mental health care offsets costs of care. METHODS: Data were from a subsample of 6,206 individuals with probable mental illness from the 2004-2010 Medical Expenditure Panel Survey (MEPS). First, disparities in mental health treatment were analyzed. Second, two-year panel data were used to determine the offset of year 1 mental health outpatient and pharmacy treatment on year 2 mental and general medical expenditures. Third, savings were estimated by combining results from steps 1 and 2. RESULTS: Compared with whites, blacks and Latinos with year 1 outpatient mental health care spent less on inpatient and emergency general medical care in year 2. Latinos receiving mental health care in year 1 spent less than others on inpatient general medical care in year 2. Latinos taking psychotropic drugs in year 1 showed reductions in inpatient general medical care. Reducing racial-ethnic disparities in mental health care and in psychotropic drug use led to savings in acute medical care expenditures. CONCLUSIONS: Savings in acute care expenditures resulting from eliminating disparities in racial-ethnic mental health care access were greater than costs in some but not all areas of acute mental health and general medical care. For blacks and Latinos, the potential savings from eliminating disparities in inpatient general medical expenditures are substantial (as much as $1 billion nationwide), suggesting that financial and equity considerations can be aligned when planning disparity reduction programs.

Activation, self-management, engagement, and retention in behavioral health care: a randomized clinical trial of the DECIDE intervention.

IMPORTANCE: Given minority patients' unequal access to quality care, patient activation and self-management strategies have been suggested as a promising approach to improving mental health care. OBJECTIVE: To determine whether the DECIDE (Decide the problem; Explore the questions; Closed or open-ended questions; Identify the who, why, or how of the problem; Direct questions to your health care professional; Enjoy a shared solution) intervention, an educational strategy that teaches patients to ask questions and make collaborative decisions with their health care professional, improves patient activation and self-management, as well as engagement and retention in behavioral health care. DESIGN, SETTING, AND PATIENTS: In this multisite randomized clinical trial performed from February 1, 2009, through October 9, 2011 (date of last follow-up interview), we recruited 647 English- or Spanish-speaking patients 18 to 70 years old from 13 outpatient community mental health clinics across 5 states and 1 US territory. A total of 722 patients were included in analyses of secondary outcomes. INTERVENTIONS: Three DECIDE training sessions delivered by a care manager vs giving patients a brochure on management of behavioral health. MAIN OUTCOMES AND MEASURES: Primary outcomes were patient assessment of activation (Patient Activation Scale) and self-management (Perceived Efficacy in Patient-Physician Interactions). Secondary outcomes included patient engagement (proportion of visits attended of those scheduled) and retention (attending at least 4 visits in the 6 months after the baseline research assessment), collected through medical record review or electronic records. RESULTS: Patients assigned to DECIDE reported significant increases in activation (mean ß = 1.74, SD = 0.58; P = .003) and self-management (mean ß = 2.42, SD = 0.90; P = .008) relative to control patients, but there was no evidence of an effect on engagement or retention in care. CONCLUSIONS AND RELEVANCE: The DECIDE intervention appears to help patients learn to effectively ask questions and participate in decisions about their behavioral health care, but a health care professional component might be needed to augment engagement in care. DECIDE appears to have promise as a strategy for changing the role of minority patients in behavioral health care. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01226329