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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.

Background: Palliative care is a specialized approach to symptom management that focuses on supporting patients’ physical and psychological quality of life throughout the disease course. In oncology, palliative care has been increasing in utilization. The evidence base for such care is also growing through the use of randomized controlled trials (RCTs). In this review, we aim to integrate the findings from 4 meta-analyses of palliative oncology care RCTs to examine the impact of palliative care on physical and psychological quality of life and survival. Method: We considered 4 meta-analyses of palliative oncology care RCTs, which each used slightly different methodologies and analyses. Two of the meta-analyses included both outpatient and inpatient populations, whereas the remaining meta-analyses focused specifically on outpatient palliative oncology care. Results: All 4 meta-analyses reported a robust quality of life advantage for patients randomized to receive palliative care. Two meta-analyses identified a survival advantage, whereas the other 2 detected no survival differences. In 1 meta-analysis that examined high-quality RCTs of outpatient palliative oncology care, it was found that an increased survival probability for palliative care, compared with standard of care, was confined to 6- to 18-month follow-up. Conclusions: There is a growing evidence base for palliative oncology care, as highlighted by the 4 meta-analyses considered. Such care successfully improves both physical and psychological quality of life for patients with serious illnesses, especially cancer. Clinicians should educate patients and their caregivers about the findings of these meta-analyses. Finally, governmental policies should focus on increasing palliative care access.

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 c ancer p atient- r eported o utcomes). 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.

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 (β = − 0.10 , percentile bootstrap 95% CI − 0.15 to − 0.07) and financial concerns (β = − 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. Plain English summary 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.

BackgroundAttending to patient-reported outcomes (PROs) using data visualisation dashboards could enhance shared decision-making (SDM) and care delivery for serious chronic illnesses. However, few studies have evaluated real-world strategies and resulting implementation outcomes of PRO dashboards.MethodFrom June 2020 to January 2022, we implemented an electronic health record (EHR)-integrated PRO dashboard for advanced cancer and chronic kidney disease. Based on implementation science guidelines (eg, Framework for Reporting Adaptations and Modifications to Evidence-based Implementation Strategies, Reach, Effectiveness, Adoption, Implementation, Maintenance), we monitored use and captured adaptations in implementation strategies. Clinicians (n=7) and patients (n=30) responded to a 6-month survey that included appropriateness, acceptability, adoption and sustainability.ResultsOut of 1450 eligible patients, 748 (52%) completed at least one PRO invitation (reach). 37% of PRO questionnaire invitations (1421/3882) were completed (fidelity to PRO completion), with higher rates occurring when more implementation strategies were adopted. Among completed postvisit surveys from patients, 57% indicated that the dashboard was discussed at an eligible visit (fidelity to dashboard use). In the 6-month survey, patients endorsed the dashboard’s acceptability and appropriateness: 77% felt it frequently provided clear information and 63% felt it frequently met their needs. Most patients (77%) and clinicians (86%) valued the dashboard for increasing SDM, and 57% of clinicians endorsed the dashboard’s clinical sustainability.DiscussionThis pilot study demonstrated the clinical appropriateness, acceptability and feasibility of implementing an EHR-integrated PRO dashboard for advanced cancer and chronic kidney disease. Results also point to areas for improvement, including strategies to further support patient and clinician engagement, PRO completion and sustainability in real-world implementation.

Patient-reported outcomes-symptoms, treatment side effects, and health-related quality of life-are important to consider in chronic illness care. The increasing availability of health IT to collect patient-reported outcomes and integrate results within the electronic health record provides an unprecedented opportunity to support patients' symptom monitoring, shared decision-making, and effective use of the health care system. The objectives of this study are to co-design a dashboard that displays patient-reported outcomes along with other clinical data (eg, laboratory tests, medications, and appointments) within an electronic health record and conduct a longitudinal demonstration trial to evaluate whether the dashboard is associated with improved shared decision-making and disease management outcomes. Co-design teams comprising study investigators, patients with advanced cancer or chronic kidney disease, their care partners, and their clinicians will collaborate to develop the dashboard. Investigators will work with clinic staff to implement the co-designed dashboard for clinical testing during a demonstration trial. The primary outcome of the demonstration trial is whether the quality of shared decision-making increases from baseline to the 3-month follow-up. Secondary outcomes include longitudinal changes in satisfaction with care, self-efficacy in managing treatments and symptoms, health-related quality of life, and use of costly and potentially avoidable health care services. Implementation outcomes (ie, fidelity, appropriateness, acceptability, feasibility, reach, adoption, and sustainability) during the co-design process and demonstration trial will also be collected and summarized. The dashboard co-design process was completed in May 2020, and data collection for the demonstration trial is anticipated to be completed by the end of July 2022. The results will be disseminated in at least one manuscript per study objective. This protocol combines stakeholder engagement, health care coproduction frameworks, and health IT to develop a clinically feasible model of person-centered care delivery. The results will inform our current understanding of how best to integrate patient-reported outcome measures into clinical workflows to improve outcomes and reduce the burden of chronic disease on patients and health care systems. DERR1-10.2196/38461.

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 51 Cr-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 51 Cr-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 51 Cr-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 51 Cr-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.

PurposeThe 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.MethodParticipants 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%.ResultsParticipants 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).ConclusionClinicians should query patients for changes in taste and smell of food, especially if they are experiencing weight loss.

[...]preferences for using palliative care vary considerably, resulting in patients missing out on care that could improve quality of life. Adding any of the many demographic or individual difference predictors measured—including age, sex, income, relationship status, parenthood status, time since diagnosis and validated measures of anxiety, depression, quality of life, extraversion, emotional stability, agreeableness, conscientiousness, meaning in life, life satisfaction and any of the other world beliefs that were measured, that is, safe, alive, just, regenerative and funny—invariably resulted in a non-significant coefficient for the added variable. [...]adding measures of enticing and improvable world beliefs to surveys could help identify patients having difficulty with palliative care decision-making and inform appropriate support strategies.

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. Lay Summary Decisions related to cancer care include multiple considerations, such as a patient’s current clinical status and goals of care. Patient-reported outcomes (PROs) reflect the patient’s unique experience of disease and treatment effects. However, there still exists considerable uncertainty regarding how to effectively use patient-reported information during clinical encounters. Here, we describe the development of a shared decision-making oncology dashboard, centered around the interpretability and use of PRO measures (PROMs) by both patients and clinicians in clinical decision-making. Codesign principles were utilized to define the goal, relevant features, and visualization of the data elements on the dashboard. Patients, care partners, clinicians, social workers, palliative care specialists, psychologists, and experts in health information systems were involved in the codesign process. One key feature of the dashboard is that real-time data analytics and visualization of data can be performed on PROMs and clinical inputs (labs, vitals, medications) and that these data elements can be trended over time to provide feedback to clinicians and patients about effectiveness of their shared-decisions, enabling a patient-centered learning health system. This paper describes the development process for the dashboard, results from early usability testing, and operational changes that were needed to launch this tool in oncology care.