Emerging priorities and concerns in the wake of the COVID-19 pandemic: qualitative and quantitative findings from a United States national survey.

Purpose: The present study examines how the coronavirus disease 2019 (COVID-19) experience affected values and priorities. Methods: This cross-sectional study collected data between January and April 2023, from 1,197 individuals who are chronically ill or part of a general population sample. Using open-ended prompts and closed-ended questions, we investigated individuals' perceptions about COVID-19-induced changes in what quality of life means to them, what and who are important, life focus, and changes in norms and stressors. Data analyses included content and psychometric analysis, leading to latent profile analysis (LPA) to characterize distinct groups, and analysis of variance and chi-squared to compare profile groups' demographic characteristics. Results: About 75% of the study sample noted changes in values and/or priorities, particularly in the greater prominence of family and friends. LPA yielded a four-profile model that fit the data well. Profile 1 (Index group; 64% of the sample) had relatively average scores on all indicators. Profile 2 (COVID-Specific Health & Resignation to Isolation Attributable to COVID-19; 5%) represented COVID-19-specific preventive health behaviors along with noting the requisite isolation and disengagement entailed in the social distancing necessary for COVID-19 prevention. Profile 3 (High Stress, Low Trust; 25%) represented high multi-domain stress, with the most elevated scores both on focusing on being true to themselves and perceiving people to be increasingly uncivil. Profile 4 (Active in the World, Low Trust; 6%) was focused on returning to work and finding greater meaning in their activities. These groups differed on race, marital status, difficulty paying bills, employment status, number of times they reported having had COVID-19, number of COVID-19 boosters received, whether they had Long COVID, age, BMI, and number of comorbidities. Conclusion: Three years after the beginning of the worldwide COVID-19 pandemic, its subjective impact is notable on most study participants' conceptualization of quality of life, priorities, perspectives on social norms, and perceived stressors. The four profile groups reflected distinct ways of dealing with the long-term effects of COVID-19.

A new framework for understanding stress and disease: the developmental model of stress as applied to multiple sclerosis.

This paper proposes a new model of stress that integrates earlier models and adds insights from developmental psychology. Previous models describe the behavioral and physical effects of stress events, but have not explained the translation of experiences into stress itself. The Developmental Model of Stress shows how psychosocial developmental challenges in childhood create persistent negative beliefs and behaviors that increase threat perception and maladaptive stress responses. These developmental challenges produce early psychological and physiological predispositions for increased stress responses over time. Ongoing stress leads to dysregulation of physical stress-response systems (allostatic load), which is associated with multiple diseases. High allostatic load provides the necessary preconditions for the diathesis-stress model, which says the addition of an acute stressor to a weakened or predisposed system can lead to disease development. The paper also documents the evolving measurement of stress to better understand the stress-disease relationship, helping to resolve conflicting results between studies. The Developmental Model of Stress was combined with clinician insight and patient reports to build an integrative framework for understanding the role of stress in the development and progression of multiple sclerosis (MS). It includes the first mapping of maladaptive beliefs and behaviors arising from developmental challenges that are common to people with MS. An initial comparison shows these may be distinct from those of people with other chronic diseases. These beliefs and behaviors form the predisposing factors and contribute to the triggering factors, which are the acute stressors triggering disease onset. These often took two forms, a prolonged incident experienced as feeling trapped or stuck, and threat of a breach in a relationship. The reinforcing factors add the stress of a chronic disease with a poor prognosis and seemingly random symptom fluctuation, still managed with the same beliefs and behaviors developed in childhood, increasing physiological dysregulation and symptom severity. A pilot study is described in which these three categories of stress factors in MS were explicitly addressed. This study noted clinically important improvements in physical and mental well-being, providing preliminary support for the Developmental Model. Future research might expand on the pilot using a more robust sample and design.

Disabled from work and depressed: cognitive factors associated with exacerbated or attenuated depression over the COVID-19 pandemic.

BACKGROUND: People who were disabled from working reported substantially worse depression in recent research [1] despite adjustment for demographic covariates, cognitive-appraisal processes, and COVID-specific stressors, thus motivating the present work. OBJECTIVE: This study sought to "drill down" to understand employment-group differences (employed, retired, unemployed, disabled) in cognitive factors, and how these factors played into paths to depression during COVID early in the pandemic and depression trajectories over 15.5 months of follow-up. METHODS: This longitudinal cohort study (n = 771) included chronically ill and general-population samples in the United States, characterized into the same depression-trajectory groups as the earlier study [1]. The Quality-of-Life Appraisal Profilev2 Short-Form assessed cognitive-appraisal processes. COVID-specific scales assessed hardship, worry, and social support. Chi-square, Analysis of Variance, classification and regression tree, and random effects modeling investigated factors associated with reported depression over time specifically by employment group, rather than in the whole sample which was the focus of the earlier study. RESULTS: Disabled participants were disproportionately represented in the stably depressed trajectory group, reporting more hardship and worry, and lower social support than employed and retired participants (p < 0.0001). They were more likely to focus on health goals, problem goals, and emphasizing the negative (p < 0.001). They had different paths and cut-points to depression than employed/unemployed/retired participants. Even mild endorsement of emphasizing the negative and recent changes predicted higher depression. COVID-specific stressors and cognitive-appraisal processes were less implicated in depression among disabled participants compared to others. CONCLUSIONS: Disabled participants were at greater risk of stable depression during the COVID pandemic. Small increases in emphasizing the negative were a path to worse depression, and disabled participants' depression may be less reactive to external circumstances or ways of thinking.

Associations of cognitive appraisal and patient activation on disability and mental health outcomes: a prospective cohort study of patients undergoing spine surgery.

BACKGROUND: With the increased use of patient-reported outcomes measures (PROMs) to assess spine surgery outcomes, it is important to understand how patients interpret their health changes over time. The measurement of cognitive-appraisal processes enables the quantification of how individuals think about quality of life (QOL). This study examined how appraisal processes were associated with patients' views of their role in managing their health-patient activation. METHODS: This longitudinal cohort study from August 2019 to January 2022 included 222 adults undergoing spine surgery for cervical (n = 107) and/or lumbar (n = 148) pathology at an academic medical center. PROMs assessed disability (Neck Disability Index for cervical or Oswestry Disability Index for lumbar) and mental health (PROMIS-29 v2.0), cognitive-appraisal processes (QOLAPv2-SF), and patient activation (Patient Activation Measure). ANOVA models were used to examine the relationships between QOL and cognitive appraisal processes before and after surgery, overall and stratified by patient-activation stage. Effect sizes facilitated interpretation. RESULTS: There were significant improvements in pain-related disability and mental health following surgery. Cognitive appraisal processes explained substantial amounts of variance, particularly with changes in mental health (45% before surgery, 75% at three months, and 63%, at 12-months after surgery). With respect to physical disability, less disability was associated with a lesser focus on negative aspects of QOL. Appraisal explained the most variance before surgery for high-activation patients. At 12-months post-surgery, however, appraisal explained the most variance for the low-activation patients. Appraisal explained similar amounts of variance in mental health at baseline and three-months post-surgery for all activation groups, but substantially more variance in the low-activation group at 12-months post-surgery. There were differences in the direction of appraisal-outcome associations by activation group in selected appraisal items/domains. CONCLUSIONS: Cognitive-appraisal processes demonstrate a significant relationship with QOL among spine surgery patients. These processes explain substantial variance in pain-related disability and mental health, especially among those high in activation before surgery and those low in activation at 12-months post-surgery. Our findings suggest that patients' ways of thinking about their health may be effective targets of motivational coaching, to help them become more engaged over the recovery trajectory.

The faces of Long-COVID: interplay of symptom burden with socioeconomic, behavioral and healthcare factors.

AIMS: The long-term effects of COVID-19 (Long COVID) include 19 symptoms ranging from mild to debilitating. We examined multidimensional correlates of Long COVID symptom burden. METHODS: This study focused on participants who reported having had COVID in Spring 2023 (n = 656; 85% female, mean age = 55, 59% college). Participants were categorized into symptom-burden groups using Latent Profile Analysis of 19 Long-COVID symptoms. Measures included demographics; quality of life and well-being (QOL); and COVID-specific stressors. Bivariate and multivariate associations of symptom burden were examined. RESULTS: A three-profile solution reflected low, medium, and high symptom burden, aligning with diagnosis confirmation and treatment by a healthcare provider. Higher symptom burden was associated with reporting more comorbidities; being unmarried, difficulty paying bills, being disabled from work, not having a college degree, younger age, higher body mass index, having had COVID multiple times, worse reported QOL, greater reported financial hardship and worry; maladaptive coping, and worse healthcare disruption, health/healthcare stress, racial-inequity stress, family-relationship problems, and social support. Multivariate modeling revealed that financial hardship, worry, risk-taking, comorbidities, health/healthcare stress, and younger age were risk factors for higher symptom burden, whereas social support and reducing substance use were protective factors. CONCLUSIONS: Long-COVID symptom burden is associated with substantial, modifiable social and behavioral factors. Most notably, financial hardship was associated with more than three times the risk of high versus low Long-COVID symptom burden. These findings suggest the need for multi-pronged support in the absence of a cure, such as symptom palliation, telehealth, social services, and psychosocial support.

Functional Status Correlates of Change and Stability in Appraisal after Spine Surgery: Earlier versus Later Effects.

Spine surgery generally yields a notable improvement in patients' health state, and there is variability in measured patient outcomes after spine surgery. The present work aimed to describe for clinicians how appraisal underlies their patients' experience of healthcare interventions. This prospective longitudinal cohort study (n = 156) included adults undergoing spine surgery for degenerative spinal conditions. The analysis was a descriptive illustration of the relationship between change in the spine-related disability using the Oswestry Disability Index and change in cognitive-appraisal processes using the Quality-of-Life Appraisal Profilev2-Short Form, early versus later during the recovery trajectory (i.e., between baseline and 3 months post-surgery; and between 3 and 12 months post-surgery). Cognitive-appraisal processes related to Sampling of Experience showed greater change soon after surgery, whereas Standards of Comparison appraisals changed more later in the recovery trajectory. Different appraisal processes were emphasized by patients who reported worsening of the spine-related disability, as compared to those who reported no change or improvement. These findings suggest that changes in appraisal differ depending on the individual's experience of the impact of spine surgery. Appraisal processes thus reflect an ongoing dynamic in adaptation to changing function.

Fatigue Item Response among Hemoglobin-Normalized Patients with Paroxysmal Nocturnal Hemoglobinuria: PEGASUS Trial Results at 16 and 48 Weeks.

Background. A common symptom of paroxysmal nocturnal hemoglobinuria (PNH) is fatigue, which in some patients can be severe. Eculizumab (Ecu) has proven efficacy in controlling intravascular hemolysis, but commonly results in persistent anemia and fatigue. Pegcetacoplan's (Peg) efficacy was documented in the PEGASUS phase III clinical trial, showing improved hemoglobin (Hb) and patient-reported fatigue. This post-hoc analysis sought to describe this fatigue improvement related to Hb normalization using the Functional Assessment of Chronic Illness Therapy-Fatigue subscale (FACIT-F)'s individual questions to speak more directly to patients' experience and clinicians' day-to-day practice. Methods. The PEGASUS trial compared Peg with Ecu in patients who remained anemic on Ecu over 16 weeks (n = 41 and 39, for Peg and Ecu, respectively), after which all patients received Peg open label for 32 weeks ("Peg" vs. "Ecu-to-Peg" at Week 48). Hb normalization was defined as ≥12-16 g/dL for females and ≥13.6-18 g/dL for males. The FACIT-F assessed fatigue. Using the complete-case data set, Cohen's d summarized the effect sizes of the mean FACIT-F item change for both study arms from the baseline to week 16 (n = 36 and 37, for Peg and Ecu, respectively) and from the baseline to week 48 (n = 30 and 29, for Peg and Ecu-to-Peg, respectively), and for Hb-normalized patients in each study arm from the baseline to week 16 (n = 14 and 0, for Peg and Ecu, respectively) and from the baseline to week 48 (n = 10 and 12, for Peg and Ecu-to-Peg, respectively). Results. The FACIT-F scores for both arms were worse at the baseline compared to later in the trial. Peg patients reported improvements on all fatigue items at Week 16, but Ecu patients reported improvement in only one item. At Week 48, the improvement in fatigue was maintained in Peg patients, and Ecu-to-Peg patients' fatigue improved on all FACIT-F items. Hb normalization was achieved in 14 Peg patients but no Ecu patients at Week 16, and in 10 Peg and 12 Ecu-to-Peg patients, respectively, at week 48. The FACIT-F single items showing the largest change overall, and particularly in Hb-normalized patients across the study arms, were related to symptoms and social limitations. Conclusions. Peg patients reported lasting improvements in fatigue. Patients who were anemic on Ecu reported sustained improvements in fatigue with Peg treatment. Patients who had Hb normalization generally had large, clinically important improvements in fatigue items.

Reserve-building as a buffer for depression among individuals living with disability: a longitudinal study of current activities related to brain health.

Aims: This study examined whether reserve-building activities are associated with attenuated reported depression among people who were disabled from work due to a medical condition as compared to employed, retired, and unemployed participants. Methods: This secondary analysis included 771 individuals who provided data at three time points: baseline (late Spring 2020), follow-up 1 (Spring 2021), and follow-up 2 (Fall 2021). The DeltaQuest Reserve-Building Measure assessed current activities related to brain health. An analysis of variance and Pearson correlation coefficients assessed group differences in reserve-building activity scores. Classification and regression tree (CART) modeling investigated factors associated with higher and lower reported depression by employment group. The random effects (RE) models tested two buffering hypotheses: (1) comparing all groups to the employed group and (2) examining within-group effects. Results: Engaging in outdoor activities, exercise, and religious/spiritual activities was associated with reduced depression over time in the overall sample. While disabled participants endorsed lower levels of being Active in the World, Outdoor activities, and Exercise and higher levels of Inner Life and Passive Media Consumption than the other employment groups, more reserve-building activities distinguished depression levels in the disabled group's CART models compared to the others. Among the disabled, unemployed, and retired participants, engaging in any reserve-building activities was also associated with lower depression scores, which was distinct from the employed participants. In the RE models that used the employed group as the reference category, only the disabled group's level of depression was buffered by engaging in creative activities. In the within-group RE models, the disabled group's engagement in Religious/Spiritual, Outdoors, and Games was associated with substantially reduced within-group depression, which was different from the other employment groups. In contrast, reserve-building activities were not implicated at all as buffers for employed participants. Conclusion: This study revealed a beneficial effect of reserve-building activities on buffering depression over time during the COVID-19 pandemic, particularly for disabled people. It documented that even if such individuals engaged in lesser amounts of such activities as compared to other employment groups, the buffering effect was substantial. Given the low-cost and accessible nature of reserve-building activities, it would be worthwhile to encourage such activities for disabled individuals.

When better is the enemy of good: two cautionary tales of conceptual validity versus parsimony in clinical psychometric research.

This paper presents an empirical challenge to the assumption that an item-response theory analysis always yields a better measure of a clinical construct. We summarize results from two measurement development studies that showed that such an analysis lost important content reflecting the conceptual model ("conceptual validity"). The cost of parsimony may thus be too high. Conceptual models that form the foundation of QOL measurement reflect the patient's experience. This experience may include concepts and items that are psychometrically "redundant" but capture distinct features of the concept. Good measurement is likely a balance between relying on IRT's quantitative metrics and recognizing the importance of conceptual validity and clinical utility.

Development and validation of the HDSIM™ assessment system: a measure of hemorrhoid disease symptom impact.

BACKGROUND: Hemorrhoid disease (HD) affects 10 million people in the US at any given time, and 50% of the US population will develop symptomatic hemorrhoids during their lifetime. Approximately 60% of people with hemorrhoids experience symptoms. Despite its prevalence and impact on quality of life, the existing patient-reported outcome measures of HD have not been validated using standard psychometric methods. The present study thus aimed to develop the Hemorrhoid Disease Symptom Impact Measure™ (HDSIM™) assessment system, a patient-reported measure of HD symptoms and impact for use in HD clinical research. METHODS: On the basis of results from qualitative cognitive interviews, we generated the conceptual model and item pool. A cross-sectional web-based survey (n = 1066) was done, including a randomly selected retest subsample (n = 100) 1-2 weeks later. The survey sample was selected to be evenly distributed across mild, moderate, and severe levels of disease and to be nationally representative of the general United States population in terms of race, gender, and region. Existing disease-specific measures of symptoms and generic measures of quality of life and well-being were compared to the new tool for construct validation. RESULTS: The HDSIM system includes 38 items representing six conceptual-model-driven subscales, aligning with the conceptual model: Symptoms at Worst, Symptoms at Best, Bowel Health Impact, Life Impact, Mental Health Impact, and Manageability. Psychometric analyses documented that the subscales had excellent internal consistency reliability, cross-sectional construct validity (i.e., convergent and divergent validity, known groups validity), test-retest stability, and longitudinal construct validity (i.e., responsiveness). CONCLUSION: The HDSIM system is fit for purpose in hemorrhoid disease clinical trials research. Since measures are validated in an iterative manner over many studies and over time, the present study results should be considered preliminary.

Mental health after lumbar spine surgery: cognitive appraisal processes and outcome in a longitudinal cohort study.

BACKGROUND CONTEXT: A not uncommon finding following spine surgery is that many patients do not achieve mental health improvement up to population norms for their age cohort, despite improvement in pain and functioning. PURPOSE: This study examined how patients who were categorized as depressed versus not depressed think about health-related quality of life as assessed by cognitive-appraisal processes. It examined cross-sectional and longitudinal differences over 12 months postsurgery. DESIGN: Prospective longitudinal cohort study with data collected at presurgery and at ∼3- and ∼12-months postsurgery from August 2013 to August 2023. PATIENT SAMPLE: We included 173 adults undergoing lumbar spine surgery for degenerative spinal conditions at an academic medical center. The study sample was 47% female, with a mean age of 61 (SD=15.0), and a median level of education of college graduate. OUTCOME MEASURES: Depression was defined as a Mental Component Score (MCS)≤38 on the Rand-36, building on studies that equated MCS scores with significant depression as assessed by clinically validated depression scales. The Quality-of-Life Appraisal Profile assessed the cognitive-appraisal domains of Experience Sampling and Standards of Comparison. METHODS: The analysis focused on two comparisons: cross-sectionally comparing those who were not depressed (n=82) to those who were depressed (n=77) at baseline; and comparing longitudinal trajectories among those depressed before surgery and improved (n=54) versus did not improve (n=23). T-tests characterized group differences in appraisal endorsement; analysis of variance evaluated appraisal items in terms of explained variance; and Pearson correlation coefficients assessed direction of association in predicting mental health. RESULTS: There were presurgical and longitudinal differences in both cognitive appraisal domains. Before surgery, depressed patients were less likely than nondepressed patients to endorse emphasizing the positive; more likely to focus on worst moments, recent flare-ups, their spinal condition, and the future; and more likely to compare themselves to high aspirations (eg, perfect health). Over time, among those who were depressed before surgery, those who improved focused decreasingly on worst moments and on the time before their spinal condition, and increasingly on emphasizing the positive and balancing the positives/negatives. Appraisal explained more variance in mental health among those who did not improve as compared to those who did, at all timepoints. All appraisal items were more highly correlated with mental health among those who remained depressed as compared to those who improved, particularly over time. CONCLUSIONS: Endorsement of cognitive appraisal processes was different for depressed versus nondepressed spine-surgery patients before surgery and distinguished those who were depressed before surgery and improved versus those who did not improve. These findings suggest that targeted interventions could be beneficial for addressing mental health concerns during the spine surgery recovery trajectory. These interventions might use appraisal measures to identify patients likely to remain depressed after surgery, and then focus on helping these patients shift their focus and standards of comparison.

Individual differences in the long-term impact of the pandemic: moderators of COVID-related hardship, worry, and social support.

PURPOSE: Understanding people's response to the pandemic needs to consider individual differences in priorities and concerns. The present study sought to understand how individual differences in cognitive-appraisal processes might moderate the impact of three COVID-specific factors-hardship, worry, and social support-on reported depression. METHODS: This longitudinal study of the psychosocial impact of the COVID-19 pandemic included 771 people with data at three timepoints over 15.5 months. Participants were recruited from panels of chronically ill or general population samples. Depression was measured by an item response theory validated depression index created using items from existing measures that reflected similar content to the Patient Health Questionnaire-8. COVID-specific factors of hardship, worry, and social support were assessed with items compiled by the National Institutes of Health. The Quality of Life Appraisal Profilev2 Short-Form assessed cognitive appraisal processes. A series of random effects models examined whether appraisal moderated the effects of hardship, worry, and social support on depression over time. RESULTS: Over time the association between low social support and depression was greater (p = 0.0181). Emphasizing the negative was associated with exacerbated depression, in particular for those with low social support (p = 0.0007). Focusing on demands and habituation was associated with exacerbated depression unless one experienced greater hardship (p = 0.0074). There was a stronger positive connection between recent changes and depression for those people with higher worry scores early in the pandemic as compared to later, but a stronger positive correlation for those with lower worry scores later in the pandemic (p = 0.0015). Increased endorsement of standards of comparison, emphasizing the negative, problem goals, and health goals was associated with worse depression scores (all p < 0.0001). People who were younger, disabled, or had greater difficulty paying bills also reported worse depression (p < 0.0001, 0.0001, and 0.002, respectively). CONCLUSION: At the aggregate level, COVID-specific stressors changed over the course of the pandemic, whereas depression and social-support resources seemed stable. However, deeper analysis revealed substantial individual differences. Cognitive-appraisal processes showed considerable variability across individuals and moderated the impact of COVID-specific stressors and resources over time. Future work is needed to investigate whether coaching individuals away from maladaptive cognitive-appraisal processes can reduce depression and lead to better overall well-being.