Publications

CONTEXT: Documented goals of care conversations (GOCC) are associated with positive outcomes. Little is known about how specific content documented within GOCC notes may be associated with patient care plan decisions.

OBJECTIVES: To assess the content of documented GOCC notes and identify how this content is associated with care plan decisions following the GOCC.

METHODS: This cross-sectional, multi-hospital study assessed GOCC notes documented for seriously ill hospitalized patients between 2021 through 2023. We quantitatively assessed completion of check boxes in a standardized GOCC note template to identify content within GOCC notes. We used multivariable logistic regression to assess how content within GOCC notes was associated with patient care plan decisions.

RESULTS: 5475 patients across twenty-one hospitals had a documented GOCC during the study period. These patients had median age 76, were 48% female, and were 11% Black, 2% Other and 87% White. About half (55%) of GOCC notes documented a surrogate decision-maker. Two-thirds documented patient prognosis (66%) or patient values (68%). Documentation of patient prognosis or patient values was associated with a change in code status (aOR 2.2 95% CI 1.9-2.5; aOR 2.2, 95% CI 1.9-2.5), transition to comfort measures only status (aOR 2.8, 95% CI 2.4-3.4; aOR 2.0, 95% CI 1.6-2.4), and discharge with hospice (aOR 1.9, 95% CI 1.6-2.2; aOR 1.4, 95% CI 1.2-1.6).

CONCLUSIONS: This multicenter study identified that documentation of patient prognosis or patient values in GOCC notes was often associated with comfort focused care decisions. Future research should explore the reasons for these findings.

BACKGROUND: Advanced cancer can disrupt participation in meaningful daily activities. Sustaining or increasing these activities through behavioral activation may improve mood and quality of life for the growing population of people living with advanced cancer.

PURPOSE: The goal of this study was to develop and evaluate the preliminary usability, feasibility, and acceptability of BALANCE (Behavioral Activation-Led Activity eNgagement for Cancer Empowerment), an 8-week smartphone-based intervention aimed at increasing engagement in meaningful daily activities in the context of advanced cancer.

METHODS: We first developed BALANCE in collaboration with a Community Patient Advisory Board. Second, we conducted usability testing of BALANCE with patients with advanced cancer. Finally, we conducted a single-arm pilot trial to evaluate the feasibility and acceptability of BALANCE. We also examined the preliminary effects of the intervention on patient-reported outcomes.

RESULTS: Usability testing participants (n = 7) rated the BALANCE app as easy (7.9/10), pleasant (8.6/10), and not burdensome to use (1.8/10). Results of the single-arm trial (n = 22) also suggest good usability (System Usability Scale score of 79.3/100), feasibility (indicated by 100% participant retention, average engagement with the application on 82% of days, and completion of 81% of planned meaningful activities), and acceptability (based on high [8.1/10] likelihood of recommending BALANCE to a friend with cancer). While the primary goal of this work was to assess feasibility and acceptability, we also observed a statistically significant decrease in patient-reported anxiety (F(2, 40) = 3.52, P = .039, ηg2 = 0.017).

CONCLUSIONS: BALANCE is a feasible and acceptable smartphone-based intervention that may help patients with advanced cancer maintain and increase valued daily activities.

INTRODUCTION: Cancer survivors endure unique immune system suppression as a result of their cancer treatment, potentially making them susceptible to long COVID in ways that differ from the general population. The purpose of this study is to assess what factors are associated with long COVID among cancer survivors.

METHODS: Observational, cross-sectional data from the 2023 Behavioral Risk Factor Surveillance System (BRFSS) survey were analyzed. The main outcome of interest was the prevalence of long COVID among cancer survivors who had tested positive for COVID-19. Bivariate analyses were conducted comparing those who did and did not have long COVID, and logistic regression models were used to determine the sociodemographic variables and individual health factors associated with long COVID among cancer survivors.

RESULTS: In this sample, 15.2 % of cancer survivors who had tested positive for COVID-19 indicated they had long COVID. Cancer survivors who were male, older, received flu and COVID-19 vaccinations, and did not have diabetes or asthma had significantly lower odds of having long COVID.

CONCLUSION: This study provides insight into what sociodemographic and health-related factors are associated with the presence of long COVID, including age, sex, vaccination status, and comorbid conditions. Future longitudinal studies are warranted to establish causal patterns.

BACKGROUND & OBJECTIVE: Parent caregivers of children with medical complexity (CMC) provide continuous, multidimensional care over decades. Given that the growing CMC population now comprises most of pediatric palliative care (PPC) patients, palliative care clinicians are positioned to support parents in discipline- and expertise-specific ways distinct from pediatric complex care and other subspecialties. This study aimed to identify CMC parent caregiver challenges that can be optimally addressed using PPC expertise in communication.

METHODS: This secondary qualitative analysis of semi-structured interviews with CMC parents explored caregiving challenges, using thematic analysis to identify themes. Themes were synthesized to identify potential levers for subspecialty palliative care-specific interventions and drive design of a conceptual framework to inform the ongoing development and implementation of PPC services for CMC parent caregivers.

RESULTS: Nineteen CMC parent caregivers participated in interviews, most of whose children had chronic health conditions affecting primarily the neurologic/neuromuscular, gastrointestinal, and respiratory systems. Almost all represented children were supported by medical technology and relied on Medicaid for primary insurance coverage. Parent report of challenges that may be addressed by PPC highlighted three themes: being unseen in their care work, tackling unrelenting caregiving responsibilities, and facing uncertainty - henceforth referred to as "the 3U's." Each of these themes presented at three levels - the personal, the healthcare system, and the community.

CONCLUSION: CMC parents' distressing caregiving challenges fall into three themes, which suggest key levers for clinicians aiming to support parent caregivers. This qualitative analysis offers guidance on how to optimally use a PPC-specific skillset for parent caregiver support.

Experts conducted a free statewide series on antibiotic stewardship for hospital, outpatient, and long-term care settings. In total, 366 participants from 244 sites represented 66% of counties in the state. Furthermore, 62% worked in nonmetropolitan counties, and 55% were from counties with medium-to-high social vulnerability, demonstrating reach into diverse sites.

BACKGROUND: Nephrologists do not routinely discuss conservative kidney management (CKM) with their patients, hindering informed decision-making about kidney failure treatments. Nudges are interventions that facilitate behavior change and may assist nephrologists with discussing CKM.

METHODS: We designed a behavioral nudge, called CKM Jumpstart, to assist nephrologists with discussing CKM with their patients. CKM Jumpstart was developed using human-centered design principles in 3 phases: 1) Discovery (March-June 2022): literature review and deliberation about the challenges to discussing CKM with an advisory panel; 2) Design (June-December 2022): multiple cycles of prototyping of CKM Jumpstart with input from the advisory panel and 10 nephrologists across the US; and, 3) Implementation (April 2023-July 2025): testing a final version of CKM Jumpstart in 36 clinic visits with 19 nephrologists recruited from the greater Seattle area and conducting qualitative interviews with nephrologists about their experiences using CKM Jumpstart.

RESULTS: In the Discovery phase, we identified 4 major challenges to discussing CKM: 1) attitudes favoring dialysis as the norm; 2) lack of clarity about patients' healthcare values; 3) difficulty describing CKM; and, 4) fear of upsetting patients. The Design phase produced a prototype of CKM Jumpstart that addressed these challenges by providing a communication framework and example language that nephrologists could try to discuss patients' healthcare values and CKM. During the Implementation phase, all the nephrologists tried CKM Jumpstart at least once and were nudged to have conversations about values, CKM and/or kidney failure treatment options more broadly. Nephrologists selectively used parts of CKM Jumpstart that suited their communication style. Some felt conversations occurred too early in patients' disease course and were uncertain about how to address conflicting values and treatment preferences.

CONCLUSIONS: Behavioral nudging assists nephrologists with discussing healthcare values and CKM with patients. It can also reveal persistent challenges with having these discussions among nephrologists.

Narrative-based serious games are accessible, engaging technologies that connect users' lived experiences to pedagogy. Despite having patient-centered goals, most narrative-based serious games are not designed alongside patients and communities, limiting their likelihood of acceptance, uptake, and impact. Literature reveals that many serious games intended for patients merely evaluate efficacy with end-users after game deployment and with a lack of consistent participatory design. This work aims to describe a patient-centered participatory approach to game development to teach self-advocacy skills to patients newly diagnosed with cancer. First, characters were developed based on panels that included patient advocates, cancer survivors, clinicians, and researchers. Second, storyline development created realistic story arcs, decision-points, and consequences based on qualitative interviews with patients, patient advocates, and cancer survivors. Third, game evaluation metrics (e.g., 1st vs. 3rd person perspective, game fail states that incentivize replaying the game, and provision of implicit or explicit feedback) were developed based on accessibility, usability, and patient preferences. Based on patients' insights, we implemented changes accordingly to maximize the game's efficacy and collected qualitative data on patients' assessment of the game's accessibility, relevance, and impact. During initial game development, patient and advocate feedback built relatable characters with a particular focus on providing sensitive information (e.g., palliative care) and inclusive storylines (e.g., diverse family situations). Following a prototype, patients and advocates suggested refinements to characters and additional storylines, including common and/or distressing experiences related to pain management, family dynamics, financial struggles, and disrespect from healthcare providers. Participants in a randomized trial of the game (N=34) found the scenarios relevant and realistic. Patients reported increased comfort speaking up, seeking support, and interacting with their families and healthcare team after playing the game. Our process demonstrates the essential role patients can inhabit in the development of narrative serious games, particularly in how patient input permeated every aspect of Strong Together's development, from initial design to evaluation. Such integration allows for adjustments to address patient concerns and refine patient-relevant metrics.

While the use and benefits of serious games in health care are increasingly recognized, the impact of individuals' game engagement remains understudied, limiting the potential for impact. This pilot study aims to describe game engagement and its associations with learning outcomes, sociodemographics, and health factors in women with advanced cancer receiving a 12-week self-advocacy serious game intervention. Game engagement was collected from study tablets and weekly self-reported surveys. Participants' game engagement was overall high but with large amounts of variation and did not differ by their sociodemographics and health factors. Participants with lower baseline symptom severity were more likely to repeat game scenarios, and those who engaged in all scenarios had higher connected strength post-intervention. Knowing what prevents patients with advanced cancer from engaging in the serious game enlightens ways to refine the gamified interventions. Future research is suggested to evaluate patients' engagement to deepen understanding of its impacts on learning outcomes.