Emotional distress predicts palliative cancer care attitudes: The unique role of anger.

OBJECTIVE: Although palliative care can mitigate emotional distress, distressed patients may be less likely to engage in timely palliative care. This study aims to investigate the role of emotional distress in palliative care avoidance by examining the associations of anger, anxiety, and depression with palliative care attitudes. METHODS: Patients (N = 454) with heterogeneous cancer diagnoses completed an online survey on emotional distress and palliative care attitudes. Emotional distress was measured using the Patient-Reported Outcomes Measurement Information System anger, anxiety, and depression scales. The Palliative Care Attitudes Scale was used to measure palliative care attitudes. Regression models tested the impact of a composite emotional distress score calculated from all three symptom measures, as well as individual anger, anxiety, and depression scores, on palliative care attitudes. All models controlled for relevant demographic and clinical covariates. RESULTS: Regression results revealed that patients who were more emotionally distressed had less favorable attitudes toward palliative care (p < 0.001). In particular, patients who were angrier had less favorable attitudes toward palliative care (p = 0.013) while accounting for depression, anxiety, and covariates. Across analyses, women had more favorable attitudes toward palliative care than men, especially with regard to beliefs about palliative care effectiveness. CONCLUSIONS: Anger is a key element of emotional distress and may lead patients to be more reluctant toward timely utilization of palliative care. Although psycho-oncology studies routinely assess depression or anxiety, more attention to anger is warranted. More research is needed on how best to address anger and increase timely utilization of palliative cancer care.

Despite popular intuition, positive world beliefs poorly reflect several objective indicators of privilege, including wealth, health, sex, and neighborhood safety.

OBJECTIVES: We tested whether generalized beliefs that the world is safe, abundant, pleasurable, and progressing (termed "primal world beliefs") are associated with several objective measures of privilege. METHODS: Three studies (N = 16,547) tested multiple relationships between indicators of privilege-including socioeconomic status, health, sex, and neighborhood safety-and relevant world beliefs, as well as researchers and laypeople's expectations of these relationships. Samples were mostly from the USA and included general population samples (Study 2) as well as focused samples of academic researchers (Study 1) and people who had experienced serious illness or trauma (Study 3). RESULTS: Studies 1-2 found mostly negligible relationships between world beliefs and indicators of privilege, which were invariably lower than researcher predictions (e.g., instead of the expected r = 0.33, neighborhood affluence correlated with Abundant world belief at r = 0.01). Study 3 found that people who had experienced serious illness (cancer, cystic fibrosis) only showed modest differences in beliefs from controls. CONCLUSIONS: While results do not preclude that some individuals' beliefs were meaningfully affected by life events, they imply that such changes are smaller or less uniform than widely believed and that knowing a person's demographic background may tell us relatively little about their beliefs (and vice versa).

Application of Terror Management Theory to End-Of-Life Care Decision-Making: A Narrative Literature Review.

Patients with serious illnesses often do not engage in discussions about end-of-life care decision-making, or do so reluctantly. These discussions can be useful in facilitating advance care planning and connecting patients to services such as palliative care that improve quality of life. Terror Management Theory, a social psychology theory stating that humans are motivated to resolve the discomfort surrounding their inevitable death, has been discussed in the psychology literature as an underlying basis of human decision-making and behavior. This paper explores how Terror Management Theory could be extended to seriously ill populations and applied to their healthcare decision-making processes and quality of care received.

Anxiety, depression, and end-of-life care utilization in adults with metastatic cancer.

OBJECTIVE: End-of-life care for patients with cancer is often overly burdensome, and palliative and hospice care are underutilized. The objective of this study was to evaluate whether the mental health diagnoses of anxiety and depression were associated with variation in end-of-life care in metastatic cancer. METHODS: This study used electronic health data from 1,333 adults with metastatic cancer who received care at two academic health centers in Louisiana, USA, and died between 1/1/2011-12/31/2017. The study used descriptive statistics to characterize the sample and logistic regression to examine whether anxiety and depression diagnoses in the six months before death were associated with utilization outcomes (chemotherapy, intensive care unit [ICU] visits, emergency department visits, mechanical ventilation, inpatient hospitalization, palliative care encounters, and hospice utilization), while controlling for key demographic and health covariates. RESULTS: Patients (56.1% male; 65.6% White, 31.1% Black) commonly experienced depression (23.9%) and anxiety (27.2%) disorders within six months of death. Anxiety was associated with an increased likelihood of chemotherapy (odds ratio [OR] = 1.42, p = 0.016), ICU visits (OR = 1.40, p = 0.013), and inpatient hospitalizations (OR = 1.85, p < 0.001) in the 30 days before death. Anxiety (OR = 1.95, p < 0.001) and depression (OR = 1.34, p = 0.038) were associated with a greater likelihood of a palliative encounter. CONCLUSIONS: Patients with metastatic cancer who had an anxiety disorder were more likely to have burdensome end-of-life care, including chemotherapy, ICU visits, and inpatient hospitalizations in the 30 days before death. Depression and anxiety both increased the odds of palliative encounters. These results emphasize the importance of mental health considerations in end-of-life care.

Changes in taste and smell of food during prostate cancer treatment.

PURPOSE: The present study examined the prevalence of changes in the taste and smell of food among men with advanced prostate cancer who were receiving hormone therapy and/or chemotherapy. METHOD: Participants were 75 men with advanced prostate cancer treated at an academic medical center. They completed a prospective survey about nausea while eating, taste and smell of food, and appetite periodically during a mean of 1.3 years of follow-up. Demographics, treatments, and weight data were extracted from electronic health records. Logistic regression analyses were used to examine the associations between the presence of the symptoms surveyed, treatments, and weight loss of ≥10%. RESULTS: Participants experienced poor taste of food (17%) and poor smell of food (8%) during the study. Nausea was associated with an increased likelihood of experiencing poor taste (50.0% v 12.3%, OR=7.13, P=.008) and smell (30.0% v 4.6%, OR=8.86, P=.016) of food. Poor taste of food was associated with an increased likelihood of experiencing poor appetite (35.0% v 10.9%, OR=12.43, P<.001). Participants were more likely to experience poor taste of food at any point in the study if they were being treated with denosumab (35.0% v 10.9%, OR=4.40, P=.020) or docetaxel (41.7% v 12.7%, OR=4.91, P=.022). Participants were more likely to experience ≥10% weight loss if experiencing poor taste of food (38.4% v 8.6%, OR=6.63, P=.010) or poor appetite (60.0% v 6.6%, OR=21.38, P<.001). CONCLUSION: Clinicians should query patients for changes in taste and smell of food, especially if they are experiencing weight loss.

Perceived importance of affective forecasting in cancer treatment decision making.

PURPOSE: To examine whether adults with cancer view affective forecasting as important for treatment decisions, and to examine these perceptions among key subgroups. DESIGN: Adults with cancer (N = 376) completed a cross-sectional survey that included demographic and clinical characteristics, the IPIP five-factor personality measure, and a rating of the perceived importance of affective forecasting for cancer treatment decisions. Descriptive statistics characterized the importance of affective forecasting. Multivariate analyses examined whether health and personality variables were associated with affective forecasting importance. FINDINGS: Most participants (89.6%) identified affective forecasting as important for treatment decisions. Affective forecasting was more likely to be rated as important among patients with prostate cancer (p < .001), patients lower in neuroticism (p = .02), and patients higher in agreeableness (p = .004). Conclusions/Implications: Patients believe it is important to understand how treatments will impact their emotional well-being. Oncology clinicians should discuss with patients these consequences during healthcare decision-making.

Distress among African American and White adults with cancer in Louisiana.

Purpose/Objectives: Screening for distress is a key priority in cancer care, and African American patients may experience increased distress compared to White patients. However, this question has not yet been addressed in Louisiana. The purpose of the present study was to examine the relationship between African American race and distress at a cancer center in Louisiana.Design/Methods: This was a retrospective study of 1,544 patients who were treated at an academic cancer center in 2015. Extracted data included patient self-reports of distress using the single-item Distress Thermometer (DT) and demographic and clinical characteristics. Hypotheses were tested using logistic regression.Findings: Distress was present in 19.7% of the sample. In univariate analyses, African American patients were more likely than White patients to experience distress (OR = 1.38, p = .013). However, race was no longer associated with distress in a multivariate analysis that adjusted for the covariates of age, gender, cancer site, presence of metastases, and number of distress screenings (OR = 1.07, p = .670). Distress was more common in patients who were younger (OR = 2.26, p < .001), diagnosed with lung/bronchus cancer (OR = 5.28, p < .001), or screened more often (OR = 5.20, p < .001). Distress was less common among patients with female breast cancer (OR = 0.39, p = .015).Conclusions/Implications: This study suggests that African American individuals with cancer in Louisiana are at increased risk for distress, but that this can be attributed to African American patients being younger, more likely to have lung cancer, and screened more frequently. Implications include careful consideration of patient race, age, and cancer site during distress management in cancer care.

A Validation Study of the Mini-IPIP Five-Factor Personality Scale in Adults With Cancer.

The Mini International Personality Item Pool (Mini-IPIP) is a brief measure of the Five-Factor Model of personality with documented validity in healthy samples of adults and could be useful for assessing personality in patient populations such as individuals with cancer. The purpose of this study was to examine the psychometric properties of the Mini-IPIP in 2 samples of adults with cancer. A sample of 369 (Sample 1) and a sample of 459 (Sample 2) adults with cancer completed an online survey including the Mini-IPIP. To assess criterion validity, Sample 2 completed measures of emotional distress. Analyses included internal consistency (Samples 1 and 2), confirmatory factor analyses (CFAs; Samples 1 and 2), and correlations and a structural regression model to examine the associations between the 5 personality factors and emotional distress (Sample 2 only). Results showed that the Mini-IPIP demonstrated levels of internal consistency and CFA model fit that were similar to previous validation studies conducted in the general population. Consistent with prior research and theory, this study also found that personality factors measured by the Mini-IPIP were associated with measures of emotional distress in Sample 2. These findings suggest the potential utility of the Mini-IPIP in both research and clinical settings involving individuals with cancer.

Impact of Interdisciplinary Outpatient Specialty Palliative Care on Survival and Quality of Life in Adults With Advanced Cancer: A Meta-Analysis of Randomized Controlled Trials.

BACKGROUND: In advanced cancer, patients want to know how their care options may affect survival and quality of life, but the impact of outpatient specialty palliative care on these outcomes in cancer is uncertain. PURPOSE: To estimate the impact of outpatient specialty palliative care programs on survival and quality of life in adults with advanced cancer. METHODS: Following PRISMA guidelines, we conducted a systematic review and meta-analysis of randomized controlled trials comparing outpatient specialty palliative care with usual care in adults with advanced cancer. Primary outcomes were 1 year survival and quality of life. Analyses were stratified to compare preliminary studies against higher-quality studies. Secondary outcomes were survival at other endpoints and physical and psychological quality-of-life measures. RESULTS: From 2,307 records, we identified nine studies for review, including five high-quality studies. In the three high-quality studies with long-term survival data (n = 646), patients randomized to outpatient specialty palliative care had a 14% absolute increase in 1 year survival relative to controls (56% vs. 42%, p < .001). The survival advantage was also observed at 6, 9, 15, and 18 months, and median survival was 4.56 months longer (14.55 vs. 9.99 months). In the five high-quality studies with quality-of-life data (n = 1,398), outpatient specialty palliative care improved quality-of-life relative to controls (g = .18, p < .001), including for physical and psychological measures. CONCLUSIONS: Patients with advanced cancer randomized to receive outpatient specialty palliative care lived longer and had better quality of life. Findings have implications for improving care in advanced cancer.

Understanding the distressed prostate cancer patient: Role of personality.

OBJECTIVE: To evaluate the relationship between personality and emotional distress in prostate cancer. Neuroticism and introversion were hypothesized to be associated with clinically significant symptoms of emotional distress, including depression, anxiety, and suicidal ideation. METHODS: Men with a history of prostate cancer (n = 212) completed an NIH-funded cross-sectional study using well-validated measures of personality, depression, anxiety, and suicidal ideation. Covariates were age, education, time since diagnosis, comorbidity, and presence of metastases. RESULTS: Emotional distress was reported by 37% of participants, including depression (23%), anxiety (15%), and suicidal ideation (10%). As hypothesized, men who were more neurotic were more likely to report emotional distress (44.5% vs 26.9%; OR = 2.78, P = .004), depression (31.9% vs 11.8%; OR = 4.23, P = .001), and suicidal ideation (29.4% vs 9.7%; OR = 4.15, P = .001). Introverts were more likely to report emotional distress (45.2% vs 28.7%; OR = 2.32, P = .012) and depression (30.8% vs 15.7%; OR = 2.57, P = .014). Men with metastases were more likely to report emotional distress (51.7% vs 31.2%; OR = 4.56, P < .001). CONCLUSIONS: Neuroticism and introversion were associated with clinically significant emotional distress in men with prostate cancer. Findings suggest that, in the context of treatment for prostate cancer, patient distress reflects disease characteristics (eg, metastases presence) as well as stable personality traits. Implications for clinical care are discussed.

Measurement of glomerular filtration rate in patients undergoing obesity surgery.

BACKGROUND: Most studies on obesity surgery have measured renal function using the estimated GFR. However, due to the reduction of muscle mass, and therefore creatinine that accompanies weight loss, such measures can falsely suggest an improvement in renal function. To balance the risks of surgery versus any potential benefits on renal function, we need to be able to determine renal function using valid and reliable methodologies. In this pilot study we aimed to measure renal function in patients with CKD undergoing obesity surgery using the gold standard 51Cr-EDTA GFR clearance methodology which is independent of measures of muscle mass. METHODS: Nine consecutive obese patients with CKD underwent obesity surgery. Their renal function was assessed using 51Cr-EDTA GFR, cystatin C and serum creatinine as well as using eGFR equations including MDRD CKD Epi, Cockcroft Gault and CKD Epi cystatin before and 12 months after surgery. RESULTS: Renal function using the 51Cr-EDTA measured GFR did not change significantly after surgery. Similar results were obtained when Cystatin C, CKD Epi cystatin, CKD Epi cystatin creatinine and adjusted Cockcroft Gault Creatinine clearance methods were used. In contrast there were either trends or significant improvements in renal function measured using the MDRD and CKD Epi equations. CONCLUSIONS: In this pilot study using the gold standard 51Cr-EDTA method we found stabilisation in renal function after obesity surgery. Until further definitive data emerge it is critical to balance the risk and benefits of surgery, especially if renal function may not improve as often as previously suggested. TRIAL REGISTRATION: ClinicalTrials.gov NCT01507350 . Registered June 2011.

Advance Care Planning Practice Patterns Before and During a Pandemic.

Introduction: The COVID-19 pandemic resulted in introspection of the United States health care infrastructure, especially with advance care planning (ACP). Methods: This is a retrospective chart review assessing the frequency of ACP discussions and formal documents reflecting ACP wishes in an outpatient palliative medicine (PM) practice. The study site was at University Medical Center New Orleans from pre-COVID-19 surge (November 2019-February 2020) to months during and post-COVID-19 surge (March-April 2020). Results: Results showed an increase in ACP discussions during the post-COVID-19 months. Patients seen during the surge and post-COVID-19 months were more likely to discuss medical power of attorney (odds ratio [OR] = 1.78, p = 0.045) and preferred code status (OR = 2.82, p < 0.001). Conclusion: Our study showed that more ACP discussions were conducted post-COVID-19 versus pre-COVID-19. However, formal documents reflecting these wishes were lacking. These results can help guide ACP use in crisis periods and improve understanding of ACP discussions in an outpatient PM clinic.

Financial burden and physical and emotional quality of life in COPD, heart failure, and kidney failure.

Patients with chronic and serious illnesses experience significant quality of life concerns. More research is needed to understand the impact of financial burden on patients with COPD, heart failure, and kidney failure. Patients with COPD, heart failure, or kidney failure completed a cross-sectional online survey using validated measures of financial burden (general financial strain as well as financial toxicity attributable to treatment), physical quality of life (symptom burden and perceived health), and emotional quality of life (anxiety, depression, and suicidal ideation). ANCOVA was used to examine whether financial strain and financial toxicity were associated with physical and emotional quality of life, while accounting for key covariates. Among 225 participants with COPD (n = 137), heart failure (n = 48), or kidney failure (n = 40), 62.2% reported general financial strain, with 34.7% experiencing financial toxicity attributable to treatments. Additionally, 68.9% rated their health as fair or poor, experiencing significant symptom burden including fatigue, dyspnea, and chest pain. Participants also reported clinically relevant levels of anxiety (55.1%), depression (52.0%), and suicidal ideation (21.8%). In the total sample, financial strain was associated with worse physical and emotional quality of life on all measures (all Ps < .001). Financial toxicity attributable to treatment was not associated with quality of life in the total sample or subsamples. Patients with COPD, heart failure, and kidney failure face significant financial, physical, and emotional burdens. Financial strain appears to undermine physical and emotional quality of life. Our study highlights the demand for interventions aimed at mitigating financial strain and toxicity experienced by individuals with chronic illnesses.

Personality and Self-efficacy for Illness Management in Cancer.

Objectives: Self-efficacy for illness management is increasingly recognized as important for outcomes in cancer. We examined whether The Big Five personality dimensions were associated with self-efficacy for illness management and hypothesized that patients who were less neurotic and more conscientious would have better self-efficacy. Methods: Adults with cancer completed a cross-sectional survey that included the Mini-International Personality Item Pool (IPIP) and three subscales of the Patient-Reported Outcomes Measurement Information System (PROMIS) Self-Efficacy for Chronic Conditions: managing emotions, managing symptoms, and managing treatment and medication. Linear regressions were used to test the hypotheses, while controlling for covariates. Results: The personality and PROMIS self-efficacy measures demonstrated good evidence of reliability (median Cronbach's alpha = .78, range of .69-.92) and validity (intercorrelations). As hypothesized, patients who were less neurotic or more conscientious had higher levels of illness self-efficacy overall and on each of the three subscales (all ps < .001). Openness was associated with better self-management of symptoms (p = .013) and emotions (p = .040). Extraversion was associated with better self-management of emotions (p = .024). Conclusions: Personality plays a vital role in illness self-efficacy for patients with cancer. Practice Implications: As a part of multidisciplinary care teams, psychosocial experts can use these findings to help patients better manage their illness.

Patient-Caregiver Dyads & End-of-Life Care: Caregiver Personality Disrupts Gender-Based Norms.

CONTEXT: Gender and personality may individually impact end-of-life care. Men often receive more aggressive treatments than women near death, and personality - particularly openness - may be associated with increased care utilization when it diverges from traditional treatment norms. However, research has not examined the interaction of these variables in a dyadic context. OBJECTIVES: This study examined the dyadic effects of patient gender and caregiver personality on end-of-life care. METHODS: Using data from the VOICE randomized clinical trial, the present sample consisted of patient-caregiver dyads receiving outpatient care for advanced cancer in Sacramento and Western New York. Analyses assessed whether caregiver personality was associated with gender-based differences in patient chemotherapy or emergency department/inpatient visits in the 30 days before death. Logistic regression examined the interaction between caregivers' Big Five personality dimensions and patient gender while accounting for patient and caregiver demographic and health characteristics. RESULTS: Of a total of 134 patient-caregiver dyads, 19.4% (n = 26) of patients received chemotherapy and 47.8% (n = 64) had an emergency department/inpatient visit in the 30 days before death. Results demonstrated a significant interaction between caregiver openness and patient gender on receipt of chemotherapy (odds ratio = 0.07, p = 0.006). When caregivers were less open, men were more likely to receive chemotherapy near death, whereas when caregivers were more open, women were more likely to receive chemotherapy near death. CONCLUSION: Results suggest caregiver personality characteristics, particularly openness, might disrupt gender-based treatment norms at end-of-life. Findings demonstrate that patient and caregiver factors can interact to explain patient healthcare utilization.

A mixed methods evaluation of patient perspectives on the implementation of an electronic health record-integrated patient-reported symptom and needs monitoring program in cancer care.

BACKGROUND: As cancer centers have increased focus on patient-centered, evidenced-based care, implementing efficient programs that facilitate effective patient-clinician communication remains critical. We implemented an electronic health record-integrated patient-reported symptom and needs monitoring program ('cPRO' for cancer patient-reported outcomes). To aid evaluation of cPRO implementation, we asked patients receiving care in one of three geographical regions of an academic healthcare system about their experiences. METHODS: Using a sequential mixed-methods approach, we collected feedback in two waves. Wave 1 included virtual focus groups and interviews with patients who had completed cPRO. In Wave 2, we administered a structured survey to systematically examine Wave 1 themes. All participants had a diagnosed malignancy and received at least 2 invitations to complete cPRO. We used rapid and traditional qualitative methods to analyze Wave 1 data and focused on identifying facilitators and barriers to cPRO implementation. Wave 2 data were analyzed descriptively. RESULTS: Participants (n = 180) were on average 62.9 years old; were majority female, White, non-Hispanic, and married; and represented various cancer types and phases of treatment. Wave 1 participants (n = 37) identified facilitators, including cPRO's perceived value and favorable usability, and barriers, including confusion about cPRO's purpose and various considerations for responding. High levels of clinician engagement with, and patient education on, cPRO were described as facilitators while low levels were described as barriers. Wave 2 (n = 143) data demonstrated high endorsement rates of cPRO's usability on domains such as navigability (91.6%), comprehensibility (98.7%), and relevance (82.4%). Wave 2 data also indicated low rates of understanding cPRO's purpose (56.7%), education from care teams about cPRO (22.5%), and discussing results of cPRO with care teams (16.3%). CONCLUSIONS: While patients reported high value and ease of use when completing cPRO, they also reported areas of confusion, emphasizing the importance of patient education on the purpose and use of cPRO and clinician engagement to sustain participation. These results guided successful implementation changes and will inform future improvements.

Exploring the Relationship Among Financial Hardship, Anxiety, and Depression in Patients With Cancer: A Longitudinal Study.

PURPOSE: Financial hardship (FH) is a complex issue in cancer care, affecting material conditions, well-being, and coping behaviors. This study aimed to longitudinally examine FH, anxiety, depressive symptoms, and their associations while incorporating social determinants of health and health care cost covariates in a sample of patients diagnosed with cancer. METHODS: This prospective, longitudinal cohort study analyzed data from 2,305 participants from the Northwestern University Improving the Management of Symptoms during and following Cancer Treatment trial. Outcomes assessed at baseline and at 3, 6, 9, and 12 months postbaseline included depressive symptoms, anxiety, and FH. Analysis involved random intercept cross-lagged panel models to explore between- and within-person effects, incorporating factors such as age, sex, insurance status, neighborhood area deprivation, health care charges, out-of-pocket costs, and health literacy. RESULTS: The cohort had a mean age of 60.7 (standard deviation [SD] = 12.7) years and was mostly female (64.9%) and White (86.2%). Correlations were found between FH and depressive symptoms (r = 0.310) and anxiety (r = 0.289). A predictive relationship was observed between FH and depressive symptoms, with baseline and 6-month depressive symptom levels predicting later FH (baseline ß = .079, P = .070; 6-month ß = .072, P = .081) and 9-month FH significantly predicting 12-month depressive symptoms (ß = .083, P = .025), even after accounting for health care charges and out-of-pocket costs. Baseline and 9-month anxiety showed a predictive relationship with subsequent FH (baseline ß = .097, P = .023; 9-month ß = .071, P = .068). CONCLUSION: FH emerged as a prominent issue, with nearly half of participants experiencing some level of FH. Depressive symptoms and anxiety were related to FH. These findings underscore the need for a comprehensive approach in cancer care that concurrently addresses anxiety, depressive symptoms, and FH, recognizing their interconnected impact.

Development of an electronic health record-integrated patient-reported outcome-based shared decision-making dashboard in oncology.

Objectives: Patient-reported outcomes (PROs) describe a patient's unique experiences with disease or treatment, yet effective use of this information during clinical encounters remains challenging. This project sought to build a PRO based dashboard within the electronic health record (EHR), prioritizing interpretability and utility of PROs for clinical decision-making. Materials and Methods: Codesign principles were used to define the goal, features, and visualization of the data elements on the dashboard. Codesign sessions occurred between February 2019 and May 2020 and involved a diverse group of stakeholders. Pilot evaluation of dashboard usability was performed with patients and clinicians not involved in the codesign process through qualitative interviews and the Systems Usability Scale. Results: The dashboard was placed into a single tab in the EHR and included select PROM scores, clinical data elements, and goals of care questions. Real-time data analytics and enhanced visualization of data was necessary for the dashboard to provide meaningful feedback to clinicians and patients for decision-making during clinic visits. During soft launch, the dashboard demonstrated "good" usability in patients and clinicians at 3 and 6 months (mean total SUS score >70). Discussion: The current dashboard had good usability and made PRO scores more clinically understandable to patients and clinicians. This paper highlights the development, necessary data elements, and workflow considerations to implement this dashboard at an academic cancer center. Conclusion: As the use of PROs in clinical care is increasing, patient- and clinician-centered tools are needed to ensure that this information is used in meaningful ways.

Implementation of a Co-Design Strategy to Develop a Dashboard to Support Shared Decision Making in Advanced Cancer and Chronic Kidney Disease.

Background: Shared decision making (SDM) is the process by which patients and clinicians exchange information and preferences to come to joint healthcare decisions. Clinical dashboards can support SDM by collecting, distilling, and presenting critical information, such as patient-reported outcomes (PROs), to be shared at points of care and in between appointments. We describe the implementation strategies and outcomes of a multistakeholder collaborative process known as "co-design" to develop a PRO-informed clinical dashboard to support SDM for patients with advanced cancer or chronic kidney disease (CKD). Methods: Across 14 sessions, two multidisciplinary teams comprising patients, care partners, clinicians, and other stakeholders iteratively co-designed an SDM dashboard for either advanced cancer (N = 25) or CKD (N = 24). Eligible patients, care partners, and frontline clinicians were identified by six physician champions. The co-design process included four key steps: (1) define "the problem", (2) establish context of use, (3) build a consensus on design, and (4) define and test specifications. We also evaluated our success in implementing the co-design strategy using measures of fidelity, acceptability, adoption, feasibility, and effectiveness which were collected throughout the process. Results: Mean (M) scores across implementation measures of the co-design process were high, including observer-rated fidelity and adoption of co-design practices (M = 19.1 on a 7-21 scale, N = 36 ratings across 9 sessions), as well as acceptability based on the perceived degree of SDM that occurred during the co-design process (M = 10.4 on a 0 to 12 adapted collaboRATE scale). Capturing the feasibility and adoption of convening multistakeholder co-design teams, min-max normalized scores (ranging from 0 to 1) of stakeholder representation demonstrated that, on average, 95% of stakeholder types were represented for cancer sessions (M = 0.95) and 85% for CKD sessions (M = 0.85). The co-design process was rated as either "fully" or "partially" effective by 100% of respondents, in creating a dashboard that met its intended objective. Conclusions: A co-design process was successfully implemented to develop SDM clinical dashboards for advanced cancer and CKD care. We discuss key strategies and learnings from this process that may aid others in the development and uptake of patient-centered healthcare innovations.

Adverse COVID-19 experiences and health-related quality of life in cancer survivors: indirect effects of COVID-19-related depression and financial burden.

BACKGROUND: Cancer survivors are at greater risk for poor health outcomes due to COVID-19. However, the pandemic's impact on patients' health-related quality of life (HRQoL) is not well known. This study hypothesized that cancer survivors' adverse COVID-19 experiences would be associated with worse HRQoL. Further, this association would be moderated by psychosocial resiliency factors (perceived social support, benefits, and ability to manage stress) and mediated by psychosocial risk factors (anxiety, depression; health, financial and social concerns). METHODS: 1,043 cancer survivors receiving care at Northwestern Medicine completed a cross-sectional survey on COVID-19 practical and psychosocial concerns from 6/2021 to 3/2022. Participants reported on 21 adverse COVID-19 experiences (e.g., COVID-19 hospitalization, death of family/friends, loss of income, medical delays). The survey assessed 9 psychosocial factors related to COVID-19: anxiety, depression; health care, financial, and social disruptions; health care satisfaction; social support, perceived benefits, and stress management skills. The FACT-G7 assessed HRQoL. Hypotheses were tested in a structural equation model. The number of reported adverse COVID-19 experiences was the primary (observed) independent variable. The dependent variable of HRQoL, and the proposed mediating and moderating factors, were entered as latent variables indicated by their respective survey items. Latent interaction terms between the independent variable and each resiliency factor tested moderation effects. Analyses were adjusted for demographic and COVID-specific variables. RESULTS: Participants were, on average, aged 58 years and diagnosed with cancer 4.9 years prior. They were majority female (73.3%), White (89.6%), non-Hispanic/Latino (94.5%), college-educated (81.7%), and vaccinated for COVID-19 (95.5%). An average of 3.8 adverse COVID-19 experiences were reported. Results of structural equation modeling demonstrated that the association between adverse COVID-19 experiences and HRQoL was explained by indirect effects through COVID-19-related depression (ß = - 0.10, percentile bootstrap 95% CI - 0.15 to - 0.07) and financial concerns (ß = - 0.04, percentile bootstrap 95% CI - 0.07 to - 0.01). Hypotheses testing moderation by resiliency factors were not significant. CONCLUSIONS: Adverse COVID-19 experiences were associated with higher depression symptoms and financial concerns about COVID-19, and in turn, worse HRQoL. Oncology clinics should be cognizant of the experience of adverse COVID-19 events when allocating depression and financial support resources.

We conducted an online survey of cancer survivors receiving treatment at Northwestern Medicine in Chicago, Illinois. Participants responded to a list of 21 adverse experiences related to the pandemic, such as COVID-19 hospitalization, death of family/friends, loss of income, and medical delays. They also responded to questionnaires measuring their degree of anxiety, depression, daily disruptions, health disruptions, financial disruptions, social support, perceived benefits, and ability to manage stress during the pandemic. Lastly, they responded to a questionnaire on health-related quality of life, capturing their physical symptoms, emotional symptoms, and satisfaction with life. Our survey found that people who had a greater number of adverse COVID-19 experiences had higher levels of depression and financial burden, which in turn was associated with worse health-related quality of life.