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The Association of Proxy Care Engagement with Proxy Reports of Patient Experience and Quality of Life.

ABSTRACT: OBJECTIVE:To assess the association of proxy-specific covariates with proxy-reported patient cancer care experience, quality rating, and quality of life. DATA SOURCES/STUDY SETTING:Secondary analysis of data from the Cancer Care Outcomes Research and Surveillance (CanCORS) study. STUDY DESIGN:Cross-sectional observational study. The respondents were proxies for patients with incident colorectal or lung cancer. DATA COLLECTION/EXTRACTION METHODS:Analyses used linear regression models and adjusted for patient sociodemographic and clinical characteristics. Outcomes included patients' experiences with medical care, nursing care, and care coordination, overall quality ratings, and physical and mental health, all scored on 0-100 scales (0 = worst, 100 = best). Independent variables included the proxy's relationship with the patient and engagement in patient care. PRINCIPAL FINDINGS:Of 1,011 proxies, most were the patient's spouse (50 percent) or child (36 percent). Although most proxies (66 percent) always attended medical visits, 3 percent reported never attending. After adjustment, on average children reported worse experiences and poorer quality care than spouses (4-9 points lower across outcomes). Proxies who never attended medical visits reported significantly worse medical care (-11 points, 95 percent CI = -18 to -3) and care coordination (-13 points, 95 percent CI = -20 to -6). CONCLUSIONS:Collecting data on proxy engagement in care is warranted if proxy responses are used.

SUBMITTER: Roydhouse JK

PROVIDER: S-EPMC6153170 | biostudies-literature | 2018 Oct

REPOSITORIES: biostudies-literature

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The Association of Proxy Care Engagement with Proxy Reports of Patient Experience and Quality of Life.

Roydhouse Jessica K JK Gutman Roee R Keating Nancy L NL Mor Vincent V Wilson Ira B IB

Health services research 20180527 5

<h4>Objective</h4>To assess the association of proxy-specific covariates with proxy-reported patient cancer care experience, quality rating, and quality of life.<h4>Data sources/study setting</h4>Secondary analysis of data from the Cancer Care Outcomes Research and Surveillance (CanCORS) study.<h4>Study design</h4>Cross-sectional observational study. The respondents were proxies for patients with incident colorectal or lung cancer.<h4>Data collection/extraction methods</h4>Analyses used linear r ...[more]

PMID: 29806212

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Project description:BackgroundDiscrepancy between self-reports and parent-proxy reports of adolescent health-related quality of life (HRQoL) has been repeatedly acknowledged in the literature as the proxy problem. However, little is known about the extent and direction of this discrepancy. The purpose of this study is to explore to what extent and in what direction HRQoL self-reports of adolescents with chronic conditions and those of their parents differ.MethodsA cross-sectional survey was conducted among adolescents suffering from chronic conditions and their parents. Socio-demographic and disease-related characteristics were collected and information about consequences of the chronic condition was assessed. HRQoL was measured with KIDSCREEN-10 and DISABKIDS condition generic measure (DCGM-10). Agreement was analysed through defining a threshold of agreement based on half of the standard deviation of the HRQoL score with the highest variance. Agreement occurred if the difference between adolescent and parent scores was less than or equal to half of the standard deviation. Intra-class correlation coefficients and Bland-Altman plots were also computed. The characteristics associated with direction of disagreement were statistically tested with one-way ANOVA and Chi-square tests.Results584 paired HRQoL scores were obtained. Ratings from both adolescents and parents were high, compared to European norm data. Differences between adolescents and parents were statistically significant, yet relatively small. Disagreement existed in both directions: in 24.5% (KIDSCREEN-10) and 16.8% (DCGM-10) of the cases adolescents rated their HRQoL lower than did their parent, while in 32.2% (KIDSCREEN-10) and 31.7% (DCGM-10) of the cases the opposite was true. Adolescent's age, educational level and type of education, parent's educational level, number of hospital admissions and several other disease-related factors influenced direction of disagreement.ConclusionsIn a reasonable proportion of cases the adolescent and parent agreed on the adolescent's HRQoL (43-51% of the cases) and most disagreement tended to be minor. Thus, the proxy problem may be smaller than presented in the literature and its extent may differ per population. As adolescents are expected to become partners in their own health care, it is recommended to focus on adolescents' own perceptions of HRQoL.

Project description:ImportanceThe Patient Protection and Affordable Care Act (ACA) expanded Medicaid eligibility at the discretion of states to US individuals earning up to 138% of the federal poverty level (FPL) and made private insurance subsidies available to most individuals earning up to 400% of the FPL. Its national impact remains debated.ObjectiveTo determine the association of the ACA with ambulatory quality, patient experience, utilization, and cost.Design, setting, and participantsThis cross-sectional study used difference-in-differences (DiD) analyses comparing outcomes before (2011-2013) and after (2014-2016) ACA implementation for US adults aged 18 to 64 years with income below and greater than or equal to 400% of the FPL. Participants were respondents to the Medical Expenditure Panel Survey, a nationally representative annual survey. Data analysis was performed from January 2021 to March 2022.ExposuresACA implementation.Main outcomes and measuresFor quality and experience, this study examined previously published composites based on individual measures, including high-value care composites (eg, preventive testing) and low-value care composites (eg, inappropriate imaging), an overall patient experience rating, a physician communication composite, and an access-to-care composite. For utilization, outpatient, emergency, and inpatient encounters and prescribed medicines were examined. Overall and out-of-pocket expenditures were analyzed for cost.ResultsThe total sample included 123 171 individuals (mean [SD] age, 39.9 [13.4] years; 65 034 women [52.8%]). After ACA implementation, adults with income less than 400% of the FPL received increased high-value care (diagnostic and preventive testing) compared with adults with income 400% or higher of the FPL (change from 70% to 72% vs change from 84% to 84%; adjusted DiD, 1.20%; 95% CI, 0.18% to 2.21%; P = .02) with no difference in any other quality composites. Individuals with income less than 400% of the FPL had larger improvements in experience, communication, and access composites compared with those with income greater than or equal to 400% of the FPL (global rating of health, change from 69% to 73% vs change from 79% to 81%; adjusted DiD, 2.12%; 95% CI, 0.18% to 4.05%; P = .03). There were no differences in utilization or cost, except that receipt of primary care increased for those with lower income vs those with higher income (change from 65% to 66% vs change from 80% to 77%; adjusted DiD, 2.97%; 95% CI, 1.18% to 4.77%; P = .001) and total out-of-pocket expenditures decreased for those with lower income vs those with higher income (change from $504 to $439 vs from $757 to $769; adjusted DiD, -$105.50; 95% CI, -$167.80 to -$43.20; P = .001).Conclusions and relevanceIn this cross-sectional national study, the ACA was associated with improved patient experience, communication, and access and decreased out-of-pocket expenditures, but little or no change in quality, utilization, and total cost.

Project description:Importance:Quality of life (QoL) is an important consideration in cancer medicine, especially because drugs are becoming more costly and may only result in modest gains in overall survival. However, there has been no descriptive analysis for the points at which QoL is measured in cancer trials. Objective:To estimate the prevalence of studies that measure QoL at different points and see how many studies measure QoL for the entirety of a patient's life. Design, Setting, and Participants:This cross-sectional analysis includes all articles on oncology clinical trials in the 3 highest-impact oncology journals, published between July 2015 and June 2018, that reported QoL outcomes. Main Outcomes and Measures:Data were abstracted on when QoL was assessed and the characteristics of these studies. Results:For all 149 studies that met inclusion criteria, QoL assessment was high during treatment (104 articles [69.8%]), during follow-up (81 articles [54.4%]), and after the end of the intervention (68 articles [45.6%]). In 5 of the 149 studies (3.4%), QoL was assessed until death, including in only 1 of the 74 studies on metastatic or incurable cancers. Among these 5 studies, only 1 (20%) used a drug intervention, 1 (20%) used a behavioral intervention, and 2 (40%) used a radiation intervention; only 1 of 5 was in the metastatic setting. The number of studies that reported a positive QoL outcome (ie, QoL outcome was more favorable in the intervention group than in the control group) was between 42 of 81 articles (51.9%) and 16 of 28 articles (57.1%) for most QoL assessment points but only 1 of 5 articles (20%) for studies measuring QoL until death. Conclusions and Relevance:This study found that most clinical trials assessed QoL during the treatment or intervention and often during a given amount of follow-up but infrequently assessed QoL on disease progression and rarely followed QoL until the end of the patient's life. Most studies reporting QoL until the end of life reported worse QoL outcomes for the intervention group than the control group. Future research and policy recommendations should consider not just short-term QoL outcomes but QoL outcomes throughout the patient's cancer care.

Dataset Information

The Association of Proxy Care Engagement with Proxy Reports of Patient Experience and Quality of Life.

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The Association of Proxy Care Engagement with Proxy Reports of Patient Experience and Quality of Life.

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