Browsing by Author "McCabe, Sean"

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    Parenting through grief: A cross-sectional study of recently bereaved adults with minor children
    (Sage, 2021) Park, Eliza M.; Deal, Allison M.; Yopp, Justin M.; Chien, Stephanie A.; McCabe, Sean; Hirsch, Ariella; Bowers, Savannah M.; Edwards, Teresa; Rosenstein, Donald L.; Biostatistics and Health Data Science, Richard M. Fairbanks School of Public Health
    Background: Grieving adults raising parentally-bereaved minor children experience persistently elevated symptoms of depression and grief. However, the factors associated with their mental health outcomes are not well understood. Aim: To investigate the psychosocial and demographic characteristics associated with grief distress and depressive symptom severity in bereaved adults with minor children. Design: Cross-sectional, web-based survey. Setting/participants: Eight hundred forty-five bereaved adults raising minor (age <18 years) children who had experienced the death of a co-parent. Primary outcomes were grief distress (Prolonged Grief Disorder-13), depressive symptoms (Patient-Reported Outcomes Measurement Information System-Depression), and widowed parenting self-efficacy (WPSES). Results: Mean grief scores were 33.5; mean depression scores were 58.3. Among the 690 individuals more than 6 months bereaved, 132 (19.3%) met criteria for prolonged grief disorder. In adjusted models, participants reporting higher grief scores were more recently bereaved, identified as mothers, non-Caucasian, had lower education and income, and had not anticipated their co-parent's death. The statistical modeling results for depression scores were similar to grief scores except that depression was not associated with anticipation of co-parent death. Parents reporting lower WPSES scores had higher grief and depression scores. Retrospective assessments of more intense parenting worries at the time of co-parent death were also associated with higher grief and depression scores. Conclusions: For bereaved adults with minor children, unanticipated co-parent death was linked with higher grief distress but not symptoms of depression. Addressing parenting concerns may represent a common pathway for improving the mental health of parentally-bereaved families.
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    Quality of Life and Health State Utilities in Bladder Cancer
    (IOS Press, 2022-03-11) Smith, Angela B.; McCabe, Sean; Deal, Allison M.; Guo, Amy; Gessner, Kathryn H.; Lipman, Robert; Chisolm, Stephanie; Ahlschlager, Lauren; Gore, John L.; Urology, School of Medicine
    Background: Bladder cancer treatments may variably impact health-related quality of life (QOL). Objective: To characterize the quality of life of patients with bladder cancer at various time points across the continuum of bladder cancer care from non-muscle-invasive disease to metastatic bladder cancer and develop utility scores to inform cost-effective analyses. Methods: We performed a cross-sectional survey of bladder cancer patients in the Bladder Cancer Advocacy Network Patient Survey Network. Participants were classified into mutually exclusive health states based upon non-muscle invasive (NMIBC), muscle-invasive (MIBC), or metastatic bladder cancer and completed surveys of generic cancer and bladder cancer-specific quality of life, financial toxicity, and work impairment. We constructed generalized linear mixed models to identify patient, clinical, and treatment factors associated with quality of life over time and derived health state utilities. Results: Among 911 self-identified patients with bladder cancer, overall QOL scores and function domains were worse among those with advanced cancer. Financial toxicity was similar among non-metastatic disease states. Work and activity impairment increased with advancing disease (13%and 12%among non-recurrent NMIBC to 63%and 31%for metastatic disease respectively; p < 0.01). On multivariable analysis, bowel-related QOL was diminished among patients with MIBC, with urinary symptoms and physical function most diminished among patients with metastatic disease. Patients with metastatic and MIBC experienced worse emotional functioning (p = 0.04; p = 0.048). Health state utilities were calculated, highest among those with non-recurrent NMIBC and lowest among those with metastatic disease. Conclusion: Generic and bladder cancer-specific QOL diminishes with advancing disease. Health state utility estimates derived from this study can inform shared decision making with patients and may be used to inform future cost-effective analyses.
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    Techniques for Improving the Robustness of Visual Analytics
    (2024-08) Koonchanok, Ratanond; Reda, Khairi; Chakraborty, Sunandan; Cafaro, Francesco; McCabe, Sean
    Interactive visualization systems, such as Tableau, are integral parts of the data analysis workflow. While such tools were built to help analysts perform exploratory data analysis with minimal effort, analysts have also been using them to make statistical inferences (e.g., predicting future trends) based on patterns revealed by the dataset. However, in addition to revealing true patterns, visualizations can also surface noise and other random fluctuations in data, which could lead to spurious discoveries. The latter poses a threat to the trustworthiness of analyses, especially given the increased reliance on visualizations across various domains. My central thesis is that it is possible to reduce the incidence of false discovery by introducing lightweight user interface elements in visualization tools. In particular, I propose eliciting and incorporating analyst beliefs into visualizations as an approach for guarding against spurious patterns and reducing the risk of analysts “overfitting” the data. To study how analysts would respond to such intervention, I first designed an interactive tool that combined visual belief elicitation with traditional visualization functionalities. In a qualitative study with data analysts, the tool appeared to allow users to operationalize their working knowledge into analyses, nudging them to adopt normative analysis practices (e.g., specifying hypotheses before peeking at data). I then conducted a crowdsourced experiment to investigate if this design could indeed help reduce the incidence of false discovery. Compared to a control condition, participants who used our intervention made significantly more accurate inferences and reported fewer false discoveries. Lastly, I investigated the capability of human intuition by comparing inferences from participants against those generated by statistical machines to understand the advantages and limitations of each. Overall, my thesis paves the way toward the development of a robust visual analytics system that facilitates collaborative decision-making processes, leveraging the complementary abilities of humans and machines.
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    They’ve been BITTEN: reports of institutional and provider betrayal and links with Ehlers-Danlos Syndrome patients’ current symptoms, unmet needs and healthcare expectations
    (Sage, 2021-06-14) Langhinrichsen-Rohling, Jennifer; Lewis, Chrystal L.; McCabe, Sean; Lathan, Emma C.; Agnew, Gabrielle A.; Selwyn, Candice N.; Gigler, Margaret E.; Biostatistics and Health Data Science, Richard M. Fairbanks School of Public Health
    Introduction: Patients with rare and/or care-intensive conditions, such as Ehlers-Danlos Syndrome (EDS), can pose challenges to their healthcare providers (HCPs). The current study used the BITTEN framework1 to code EDS patients' open-ended written responses to a needs survey to determine their self-reported prevalence of healthcare institutional betrayal and its link with their expressed symptoms, provider perceptions, unmet needs, and on-going healthcare-related expectations. Methods: Patients with EDS (n = 234) were recruited via a rare disease electronic mailing list and snowball sampling. A total of one-hundred and six respondents (45.3%) endorsed having unmet healthcare-related needs; of these, 104 (99%) completed an open-ended prompt about these needs. Responses were coded for components of BITTEN, a framework designed to link patients' past, current, and future healthcare-related experiences in a trauma informed manner. Results: Many respondents with ongoing needs endorsed experiencing past institutional and provider betrayal (43%; n = 45), current mental health symptoms (91.4%; n = 95), negative expectations for future healthcare (40.4%; n = 62), and a lack of trust in their healthcare provider (22.1%; n = 23). There were no significant differences in post-traumatic stress disorder (PTSD)/anxiety, depression/sadness, or isolative symptoms between respondents coded for institutional betrayal (n = 45) compared with those not (n = 59). However, EDS respondents reporting institutional betrayal were significantly more likely to self-report anger and irritability symptoms, a lack of trust in their HCPs, and more negative expectations for future healthcare than those not reporting institutional betrayal. Discussion/conclusions: The frequent spontaneous reporting of past healthcare betrayals among patients with EDS implies the need for trauma-informed care and provider education. Given that experiences of institutional betrayal are associated with increased anger and irritability, as well as with negative expectations for future healthcare interactions, efforts to repair healthcare provider and system-wide relationship ruptures might have positive healthcare consequences. Plain language summary: Reports of Institutional and Provider Betrayal and Links with Ehlers-Danlos Syndrome Patients' Current Symptoms, Unmet Needs and Future Healthcare Expectations What is EDS? Ehlers-Danlos Syndrome (EDS) refers to a group of rare genetic connective tissue disorders that are primarily characterized by skin hyperelasticity, joint hypermobility, and tissue fragility. Connective tissue is largely responsible for the structural integrity of our bodies, and there are several EDS subtypes which each describe a specific connective tissue problem. In addition, there is significant overlap between EDS types and other kinds of connective tissue disorders. As a result, recognizing, diagnosing, and treating EDS is often challenging. What is Institutional betrayal? Institutional Betrayal here refers to a harmful action (i.e. commission) or lack of action (i.e. omission) on the part of a healthcare institution, individual provider/healthcare team, or insurance company. When a patient trusts that the healthcare system will act in their best interest, and trust is violated, institutional betrayal occurs. What is BITTEN? BITTEN is an acronym for Betrayal, Indicator, Trauma symptoms, Trust, Expectations, and Needs. It is a framework meant to capture previous problematic healthcare-related experiences in EDS patients, then to consider how those experiences influence a patient's current symptoms, provider trust, future expectations in healthcare encounters, and on-going needs. Why was this done? EDS, like many rare diseases, is hard to recognize and manage. We aim to: Give voice to EDS patients and their common unmet needs and healthcare-related expectations. Highlight how healthcare providers can apply BITTEN to improve care practices in rare disease patient encounters. What did we do? Using a newly articulated applied model of healthcare, BITTEN, we analyzed the open-ended responses of EDS patients describing their unmet emotional and mental health needs. What did we find? Nearly half of EDS patients who indicated they had unmet needs reported experiencing institutional betrayal. EDS patients who reported institutional betrayal also expressed anger, a lack of trust in healthcare providers, negative expectations for future healthcare, and more unmet needs more frequently than EDS patients who did not report institutional betrayal. What does this mean? The EDS patients in this sample were not directly asked if they had experienced institutional betrayal, so the exact prevalence is not known. Furthermore, responses were obtained voluntarily via the internet, so caution should be taken when generalizing these findings. However, results indicate that too many patients with EDS have experienced healthcare betrayals; these experiences are associated with current anger and negative expectations for future healthcare interactions .The prevalence of past negative healthcare experiences, along with current unmet needs and future negative healthcare expectations in EDS patients who have experienced institutional betrayal, highlights the need for healthcare providers to tend to these experiences, mend patient-provider barriers, and provide higher quality healthcare.