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Item Exploratory Factor Analysis of the Comfort Assessment in Dying With Dementia Scale(Oxford University Press, 2023-12-21) Zhang, Peiyuan; Stump, Timothy; Tu, Wanzhu; Becker, Todd; Orth, Jessica; Floyd, Alexander; Unroe, Kathleen; Cagle, John; Biostatistics and Health Data Science, School of MedicineThe 14-item Comfort Assessment in Dying with Dementia (CAD-EOLD) scale is a widely used instrument measuring end-of-life care for people with dementia (PWD). The instrument has been used to evaluate symptom burden among PWD in nursing homes, but the measurement properties are less studied for symptoms reported by family and staff caregivers. We conducted an exploratory factor analysis to evaluate the psychometric properties of the scale using staff and family (N=476) responses to CAD-EOLD at the baseline of an NIH-funded clinical trial. Subjects were long-stay nursing home residents with moderate-to-severe cognitive impairment in Indiana and Maryland. Staff (n=368) and family members (n=108) completed the CAD-EOLD, describing participating residents. We performed separate exploratory factor analyses on family and staff responses. Family and staff data showed similar clustering patterns. Restlessness, anxiety, fear, crying, and moaning had high factor loadings in the first cluster, interpreted as “Physical and Psychological Distress” (loading range = 0.47–0.91). Choking, gurgling, and difficulty swallowing had high loadings in the second cluster that depicted “Dying Symptoms” (loading range = 0.62–1.15). Serenity, calm, and peace had high loadings in the third factor on “Well-Being” (loading range = 0.72–0.93). Three “Physical Distress” items (i.e., discomfort, pain, and shortness of breath) cross-loaded with “Dying Symptoms.” Accordingly, “Physical and Psychological Distress,” “Dying Symptoms,” and “Well-Being” represented important but separate dimensions for measuring end-of-life experiences of PWD. Findings demonstrated favorable construct validity of CAD-EOLD in PWD with moderate-to-severe cognitive impairment in nursing homes, as reported by staff and family caregivers.Item Symptom burden among older breast cancer survivors: The Thinking and Living With Cancer (TLC) study(Wiley, 2020-03-15) Mandelblatt, Jeanne S.; Zhai, Wanting; Ahn, Jaeil; Small, Brent J.; Ahles, Tim A.; Carroll, Judith E.; Denduluri, Neelima; Dilawari, Asma; Extermann, Martine; Graham, Deena; Hurria, Arti; Isaacs, Claudine; Jacobsen, Paul B.; Jim, Heather S. L.; Luta, George; McDonald, Brenna C.; Patel, Sunita K.; Root, James C.; Saykin, Andrew J.; Tometich, Danielle B.; Zhou, Xingtao; Cohen, Harvey J.; Radiology and Imaging Sciences, School of MedicineBackground: Little is known about longitudinal symptom burden and its consequences for well-being, and if lifestyle moderates burden in older survivors. Methods: We report on 36-month data from survivors 60+ with newly diagnosed non-metastatic breast cancer and non-cancer controls recruited August 2010-June 2016. Symptom burden was a sum of self-reported symptoms/diseases: pain (yes/no), fatigue (FACT-fatigue), cognitive (FACT-cog), sleep problems (yes/no), depression (CES-D), anxiety (STAI), and cardiac problems and neuropathy (yes/no). Well-being was measured using the FACT-G, scaled from 0–100. Lifestyle included smoking, alcohol use, BMI, physical activity, and leisure activities. Mixed models assessed relationships between treatment group (chemotherapy +/− hormonal, hormonal only, control) and symptom burden, lifestyle, and covariates. Separate models tested the effects of fluctuations in symptom burden and lifestyle on function. Results: All groups reported high baseline symptoms, and levels remained high over time; survivor-control differences were most notable for cognitive and sleep problems, anxiety, and neuropathy. The adjusted burden score was highest among chemotherapy-exposed survivors, followed by hormonal therapy vs. controls (p<.001). Burden score was related to physical, emotional, and functional well-being (e.g., survivors with lower vs. higher burden scores had 12.4-point higher physical well-being score). The composite lifestyle score was not related to symptom burden or well-being, but physical activity was significantly associated with each outcome (<.005). Conclusions: Cancer and its treatments are associated with a higher level of actionable symptoms and greater loss of well-being over time in older breast cancer survivors than comparable non-cancer populations, suggesting the need for surveillance and opportunities for intervention.Item The other COVID-19 survivors: Timing, duration, and health impact of post-acute sequelae of SARS-CoV-2 infection(Wiley, 2022) Lambert, Natalie; Survivor Corps; El-Azab, Sarah A.; Ramrakhiani, Nathan S.; Barisano, Anthony; Yu, Lu; Taylor, Kaitlyn; Esperança, Álvaro; Mendiola, Christian; Downs, Charles A.; Abrahim, Heather L.; Hughes, Thomas; Rahmani, Amir M.; Borelli, Jessica L.; Rana; Chakraborty, Rana; Pinto, Melissa D.; Biostatistics, School of Public HealthAims and objectives: To determine the frequency, timing, and duration of post-acute sequelae of SARS-CoV-2 infection (PASC) and their impact on health and function. Background: Post-acute sequelae of SARS-CoV-2 infection is an emerging major public health problem that is poorly understood and has no current treatment or cure. PASC is a new syndrome that has yet to be fully clinically characterised. Design: Descriptive cross-sectional survey (n = 5163) was conducted from online COVID-19 survivor support groups who reported symptoms for more than 21 days following SARS-CoV-2 infection. Methods: Participants reported background demographics and the date and method of their covid diagnosis, as well as all symptoms experienced since onset of covid in terms of the symptom start date, duration, and Likert scales measuring three symptom-specific health impacts: pain and discomfort, work impairment, and social impairment. Descriptive statistics and measures of central tendencies were computed for participant demographics and symptom data. Results: Participants reported experiencing a mean of 21 symptoms (range 1-93); fatigue (79.0%), headache (55.3%), shortness of breath (55.3%) and difficulty concentrating (53.6%) were the most common. Symptoms often remitted and relapsed for extended periods of time (duration M = 112 days), longest lasting symptoms included the inability to exercise (M = 106.5 days), fatigue (M = 101.7 days) and difficulty concentrating, associated with memory impairment (M = 101.1 days). Participants reported extreme pressure at the base of the head, syncope, sharp or sudden chest pain, and "brain pressure" among the most distressing and impacting daily life. Conclusions: Post-acute sequelae of SARS-CoV-2 infection can be characterised by a wide range of symptoms, many of which cause moderate-to-severe distress and can hinder survivors' overall well-being. Relevance to clinical practice: This study advances our understanding of the symptoms of PASC and their health impacts.