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.

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 post-surgery. DESIGN: Prospective longitudinal cohort study with data collected at pre-surgery and at ∼3- and ∼12-months post-surgery 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 pre-surgical and longitudinal differences in both cognitive appraisal domains. Before surgery, depressed patients were less likely than non-depressed 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 non-depressed 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.

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.

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.

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.

Depression trajectories during the COVID-19 pandemic: a secondary analysis of the impact of cognitive-appraisal processes.

PURPOSE: This study characterized depression trajectories during the COVID pandemic and investigated how appraisal and changes in appraisal over time related to these depression trajectories. 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. The depression index was validated using item-response-theory methods and receiver-operating-characteristic curve analysis. The Quality of Life (QOL) Appraisal Profilev2 Short-Form assessed cognitive-appraisal processes. Sequence analysis characterized depression-trajectory groups, and random effects models examined appraisal main effects, appraisal-by-group, and appraisal-by-group-by-time interactions. RESULTS: Sequence analysis generated six trajectory groups: Stably Well (n = 241), Stably Depressed (n = 299), Worsening (n = 79), Improving (n = 83), Fluctuating Pattern 1 (No-Yes-No; n = 41), and Fluctuating Pattern 2 (Yes-No-Yes; n = 28). While all groups engaged in negative appraisal processes when they were depressed, the Stably Depressed group consistently focused on negative aspects of their life. Response-shift effects were revealed such that there were differences in the appraisal-depression relationship over time for standards of comparison and recent changes for the Stably Depressed, and in health goals for those Getting Better. CONCLUSION: The present work is, to our knowledge, the first study of response-shift effects in depression. During these first 15.5 pandemic months, group differences highlighted the connection between negative appraisals and depression, and response-shift effects in these relationships over time. Egregious life circumstances may play a lesser role for the Stably Depressed but a greater role for people who have transient periods of depression as well as for those with improving trajectories (i.e., endogenous vs. reactive depression). How one thinks about QOL is intrinsically linked to mental health, with clear clinical implications.

Impact of comorbidities on people with and without cancer early in the COVID-19 pandemic: An observational study.

BACKGROUND: The present study sought to investigate how comorbidity burden influences cancer survivors' quality of life (QoL) and the challenges/adaptations during the coronavirus disease 2019 (COVID) pandemic, and to examine how appraisal processes are related to this impact. METHODS: This cross-sectional study, administered in spring/summer 2020, compared cancer survivors to a general-population comparison sample. QoL was assessed with standardized tools. COVID-specific questions included selected items compiled by the US National Institutes of Health, and cognitive appraisal processes were assessed using the QoL Appraisal Profilev2 Short-Form. Principal components analysis reduced the number of comparisons. Multivariate analysis of covariance investigated group differences in QoL, COVID-specific variables, and cognitive-appraisal processes. Linear regression investigated group differences in COVID-specific variables as a function of cognitive-appraisal processes, QoL, demographic covariates, and their interactions. RESULTS: Cancer survivors fared substantially better than non-cancer participants in QoL and cognitive functioning when they had no other comorbidities, but substantially worse on QoL when they had three or more comorbidities. Cancer survivors with no comorbidities were less likely to feel worried about COVID, less likely to engage in self-protection, and prioritized engaging in problem-focused and prosocial actions compared to non-cancer participants. Conversely, cancer survivors confronted with multiple comorbidities exhibited more proactive self-protection and experienced more anxiety about the pandemic. CONCLUSION: The impact of having multiple comorbidities in the context of cancer is associated with notable differences in social determinants of health, QoL outcomes, COVID-specific challenges/adaptations, and appraisal of QoL. These findings provide an empirical basis for implementing appraisal-based coping interventions.

Cancer beliefs and screening behaviors: The impact of neighborhood and other social determinants of health.

Background: Beliefs about cancer influence breast and colorectal cancer (CRC) screening behavior. Screening rates for these cancers differ in the contiguous neighborhoods of East Harlem (EH), Central Harlem (CH), and the Upper East Side (UES), which have distinct socio-demographic compositions. We assessed the belief-screening behavior relationship in these neighborhoods. Methods: The 2019 Community Cancer Needs Survey included adults eligible for breast and/or colorectal cancer screening. Raking was used to generate neighborhood-specific distribution estimates. Categorical variables were compared using Chi-square tests. Stepwise logistic regression models were used to estimate odds ratios (OR) and 95% confidence intervals (CI) for the association between cancer beliefs and screening. Results: Our weighted sample included 147,726 respondents. Screening was 75% in CH, 81% in EH, and 90% in the UES for breast cancer, and 71%, 76%, and 92% for CRC, respectively. The fatalistic belief "There's not much you can do to lower your chances of getting cancer" differed by neighborhood with screening more likely in CH respondents (breast OR =1.45 and colorectal OR =1.11), but less likely in EH (OR= 0.77 and 0.37, respectively). UES ORs were not generated due to too few unscreened respondents. Conclusions: Cancer beliefs were inconsistently associated with breast and CRC screening across three NYC neighborhoods. This suggests that a given belief may either motivate or deter screening, depending upon context or interpretation. Once access is addressed, efforts seeking to enhance screening rates should consider implications of communities' varying beliefs.

Health-related Quality of Life After Robotic-assisted vs Open Radical Cystectomy: Analysis of a Randomized Trial.

PURPOSE: We compare health-related quality of life using a broad range of validated measures in patients randomized to robotic-assisted radical cystectomy vs open radical cystectomy. METHODS: We retrospectively analyzed patients that had enrolled in both a randomized controlled trial comparing robotic-assisted laparoscopic radical cystectomy vs open radical cystectomy and a separate prospective study of health-related quality of life. The prospective health-related quality of life study collected 14 patient-reported outcomes measures preoperatively and at 3, 6, 12, 18, and 24 months postoperatively. Linear mixed-effects models with an interaction term (study arm×time) were used to test for differences in mean domain scores and differing effects of approach over time, adjusting for baseline scores. RESULTS: A total of 72 patients were analyzed (n=32 robotic-assisted radical cystectomy, n=40 open radical cystectomy). From 3-24 months post-radical cystectomy, no significant differences in mean scores were detected. Mean differences were small in the following European Organization for Research and Treatment of Cancer QLQ-C30 (Core Quality of Life Questionnaire) domains: Global Quality of Life (-1.1; 95% CI -8.4, 6.2), Physical Functioning (-0.4; 95% CI -5.8, 5.0), Role Functioning (0.7; 95% CI -8.6, 10.0). Mean differences were also small in bladder cancer-specific domains (European Organization for Research and Treatment of Cancer QLQ-BLM30 [Muscle Invasive Bladder Cancer Quality of Life Questionnaire]): Body Image (2.9; 95% CI -7.2, 13.1), Urinary Symptoms (8.0; 95% CI -3.0, 19.0). In Urostomy Symptoms, there was a significant interaction term (P < .001) due to lower open radical cystectomy scores at 3 and 24 months. Other domains evaluating urinary, bowel, sexual, and psychosocial health-related quality of life were similar. CONCLUSIONS: Over a broad range of health-related quality of life domains comparing robotic-assisted radical cystectomy and open radical cystectomy, there are unlikely to be clinically relevant differences in the medium to long term, and therefore health-related quality of life over this time period should not be a consideration in choosing between approaches.

Association of smoking history on health-related quality of life in patients undergoing radical cystecomy.

PURPOSE: Radical cystectomy (RC) has the potential to impact health-related quality of life (HRQOL). Many patients who undergo RC are current or former smokers. To better inform preoperative patient counseling, we examined the association between smoking status and HRQOL after RC. MATERIALS AND METHODS: A secondary analysis was performed on a prospective, longitudinal study (2008-2014) examining HRQOL in patients undergoing RC for bladder cancer. We analyzed 12 validated patient-reported outcome measures that focused on functional, symptomatic, psychosocial, and global HRQOL domains. Measures were collected pre-operatively and 3-, 6-, 12-, 18-, and 24-months postoperatively. For each HRQOL domain, we estimated the mean domain scores using a generalized estimation equation linear regression model. Each model included survey time, smoking status, and time-smoking interaction as covariates. Pairwise comparisons of current, former, and never smokers were estimated from the models. RESULTS: Of the 411 patients available for analysis, 29% (n = 119) never smoked, 59% (n = 244) were former smokers, and 12% (n = 48) were current smokers. Over the follow-up period, never smokers compared to current smokers had better global QOL scores (mean difference = +8.9; 95% CI 1.3-16; p = 0.023) and lower pain levels (mean difference = -10; 95% CI -19 to -0.54; p = 0.036). Compared to current smokers, former smokers had marginal improvements in global QOL (+6.9 points) and pain (-7.5 points) during the follow-up period. CONCLUSIONS: Current smokers reported worse HRQOL recovery in the 24-months after RC. These findings can be used to counsel patients who smoke on recovery expectations.

Cognitive Processes during Recovery: Moving toward Personalized Spine Surgery Outcomes.

This paper focuses on a novel application of personalized medicine: the ways one thinks about health (i.e., appraisal processes) as relevant predictors of spine-surgery response. This prospective longitudinal cohort study (n = 235) investigated how appraisal processes relate to outcomes of spinal decompression and/or fusion surgery, from pre-surgery through one-year post-surgery. Patient-reported outcomes assessed spine-specific disability (Oswestry Disability Index (ODI)), mental health functioning (Rand-36 Mental Component Score (MCS)), and cognitive appraisal processes (how people recall past experiences and to whom they compare themselves). Analysis of Variance examined the appraisal-outcomes association in separate models at pre-surgery, 3 months, and 12 months. We found that appraisal processes explained less variance at pre-surgery than later and were differentially relevant to health outcomes at different times in the spine-surgery recovery trajectory. For the ODI, recall of the seriousness of their condition was most prominent early in recovery, and comparing themselves to positive standards was most prominent later. For the MCS, not focusing on the negative aspects of their condition and/or on how others see them was associated with steady improvement and higher scores at 12 months. Appraisal processes are relevant to both spine-specific disability and mental-health functioning. Such processes are modifiable objects of attention for personalizing spine-surgery outcomes.

Race-related differences in the economic, healthcare-access, and psychological impact of COVID-19: personal resources associated with resilience.

BACKGROUND: The impact of the coronavirus disease 2019 (COVID) is worse among those with fewer financial resources, in jobs not amenable to remote work, and in denser living conditions. People of color are more likely to be among these vulnerable groups. Although race itself is a social construction and not based on underlying genetic/biological differences, this study investigated race/ethnicity differences in the negative repercussions of COVID and in the benefits of psychological and social resources. METHODS: This cross-sectional, web-based study (n = 4817) was administered to a heterogeneous United States sample in Spring/Summer 2020. Information was gathered on the following COVID-specific variables: Infection Status, Coping with Lockdown, Social Support, Post-traumatic Growth, Interpersonal Conflict, Worry about Self, Financial Impact on Family, Lack of Money, Inadequate Access to Healthcare, and Housing Instability. Resilience was operationalized as the ability to maintain a sense of wellness in the face of the pandemic, using the DeltaQuest Wellness measure. Multivariate linear regression (adjusting for demographics) and propensity-matched cohort analysis (matched on demographics) evaluated the impact of COVID-specific variables on Wellness in separate models for Whites and Non-Whites. FINDINGS: Both sets of models retained the same COVID-specific variables and explained about half of the variance in wellness. Coping with Lockdown, Social Support, and Post-traumatic Growth were associated with higher levels of Wellness in both Whites and Non-Whites, while Interpersonal Conflict and Worry about Self were associated with lower levels of Wellness. While these associations are similar, Non-Whites reported worse levels of some positive resources (e.g., social support) and more challenging levels of negative stressors (e.g., interpersonal, worry, financial). Non-Whites also reported much higher levels of post-traumatic growth. CONCLUSION: COVID was a source of worry and even conflict, but also unlocked people's resources in use of health-enhancing behavioral strategies, social support, and renewed gratitude for sources of personal meaning and value. The similar relationships between Whites and Non-Whites on wellness and COVID-specific stressors across racial groups underscore that race is a social construction, not a biological fact. Focusing on a renewed appreciation for sources of personal meaning, and particularly faith, seemed to buffer much of the COVID-related stress for Non-Whites.

Appraisal and patient-reported outcomes following total hip arthroplasty: a longitudinal cohort study.

BACKGROUND: Total hip arthroplasty (THA) is a successful procedure that provides pain relief, restores function, and improves quality of life (QOL) for patients with advanced arthritis in their hip joint. To date, little research has examined the role of cognitive appraisal processes in THA outcomes. This study examined the role of cognitive appraisal processes in THA outcomes in the first year post-surgery. METHODS: This longitudinal cohort study collected data at pre-surgery, 6 weeks post-surgery, 3 months post-surgery, and 12 months post-surgery. Adults (n = 189) with a primary diagnosis of osteoarthritis were consecutively recruited from an active THA practice at a Canadian academic teaching hospital. Measures included the Hip Disability and Osteoarthritis Outcome Score (HOOS), the Mental Component Score (MCS) of the Rand-36, and the Brief Appraisal Inventory (BAI). Analysis of Variance examined the association between BAI items and the HOOS or MCS scores. Random effects models investigated appraisal main effects and appraisal-by-time interactions for selected BAI items. RESULTS: HOOS showed great improvement over the first 12 months after THA, and was mitigated by three appraisal processes in particular: focusing on problems with healthcare or living situation, and preparing one's family for health changes. MCS was stable and low over time, and the following appraisal processes were implicated by very large effect sizes: not comparing themselves to healthier people, focusing on money problems, preparing their family for their health changes, or trying to shed responsibilities. CONCLUSIONS: Appraisal processes are relevant to health outcomes after THA, with different processes coming into play at different points in the recovery trajectory.

Siblings' life aspirations in the context of Duchenne muscular dystrophy: a mixed-methods case-control study.

BACKGROUND: The inevitable and progressive loss of independence in Duchenne Muscular Dystrophy (DMD) patients may have an impact on their siblings' life aspirations. The present cross-sectional case-control study investigated how aspirations differed between brothers and sisters of people with DMD and a stratified comparison group of nationally representative children/adults. METHODS: A web-based survey was administered October through December 2020. Aspirations were measured using qualitative (open-ended) and quantitative (closed-ended) questions. Qualitative prompts asked participants about wishes, goals, and how they define quality of life (QOL) and were coded by six trained raters. Quantitative questions included 29 closed-ended goal-delineation items from the QOL Appraisal Profilev2. These data were analyzed using multivariate models adjusting for propensity scores (demographic differences) and testing for the effects of role (sibling or comparison), age, and role-by-age interactions. RESULTS: The study sample of DMD sibling (n = 349) and comparison (n = 619) participants provided open-ended data on 968 wishes statements, 390 QOL-definition statements, and 328 goals statements. Inter-rater reliability (kappa = 0.77) reflected good agreement between raters. Results of both open-ended and closed-ended data, and of both unadjusted and adjusted analyses suggested that DMD siblings, with age, were more focused on DMD-related, family/community, intimacy, and work concerns than their peers. They were less focused on improving mood, independence, pragmatics, or subtle fine-tuning of problem-solving in life. In contrast, the comparison group was more focused on goals related to growth, purpose, and reflection. Some group differences were amplified amongst older siblings. CONCLUSION: This is the first study to evaluate DMD siblings' aspirations in comparison to their peers. While there were many similarities between groups, the differences in aspirations between DMD siblings and their peers encompassed not just DMD, family/community, and intimacy, but also more work concerns. Directions for future quantitative and qualitative research are discussed.

Patient life aspirations in the context of Duchenne Muscular Dystrophy: a mixed-methods case-control study.

BACKGROUND: Aspirations refer to wishes, ways of defining quality of life (QOL), and life goals. Living with chronic illness likely impacts a person's life aspirations. Duchenne Muscular Dystrophy (DMD) is an inherited disorder characterized by the inevitable and progressive loss of ambulation and independence. The present cross-sectional case-control study investigated how aspirations differed between people with DMD and a stratified comparison group of nationally representative children/adults. METHODS: A web-based survey was administered October through December 2020. Recruitment was stratified by age group: 8-12, 13-17, and > = 18, reflecting the DMD disability trajectory. Aspirations were measured using qualitative (open-ended) and quantitative (closed-ended) questions. Qualitative prompts asked participants about wishes, how they would define "QOL"; and goals; answers to the prompts were then coded by six trained raters. Quantitative questions included 29 closed-ended goal-delineation items from the QOL Appraisal Profilev2. These data were analyzed using multivariate models adjusting for propensity scores (demographic differences), and testing for the effects of role (patient or comparison), age, and role-by-age interactions. RESULTS: The study sample of DMD (n = 285) and comparison (n = 292) participants provided open-text data: 577 wishes statements, 283 QOL-definition statements, and 149 goals statements. Inter-rater reliability (kappa = 0.77) reflected good agreement between different raters' codes. Results suggested that people with DMD have aspirations that differ from their peers in several important ways. Both open-text and closed-ended data in both unadjusted and adjusted analyses generally showed that people with DMD were more focused on intrinsic aspirations such as health, healthcare, and independence than their peers. Compared to non-DMD persons, DMD individuals were much less focused on financial or housing concerns, community contributions, or spiritual growth. With age, patients' aspirations focused less on extrinsic aspirations such as careers and work and increasingly emphasized emotion-oriented goals. Patients were markedly less likely to give a direct answer to the open-ended goals question. CONCLUSION: There were important differences in aspirations between people with DMD and their peers. These findings may be helpful for developing psychosocial interventions.

The impact of COVID-19 on people with multiple sclerosis: A comparison of Italian and United States cohorts.

BACKGROUND/OBJECTIVES: The present cross-national study addressed the relationship among three pandemic-related variables and multiple sclerosis (MS) disability outcomes among people with MS in Italy and the United States (US). METHODS: This cross-sectional web-based study was administered to 708 patients with MS from the US and Italy in late Spring through mid-Summer of 2020. Pandemic-related variables assessed worry, self-protection, and post-traumatic growth. The Performance Scales© assessed MS disability. Multivariate multiple regression models addressed, separately by country, the relationship among worry, protection, and post-traumatic growth with MS disability, after covariate adjustment. RESULTS: The Italian sample (n = 292) was younger and less disabled than the US group (n = 416). After covariate adjustment, all three pandemic-related variables were associated with MS disability outcomes in the US sample, but only worry and post-traumatic growth were associated in the Italian sample. Worse cognitive and depression symptoms were associated with worry, and lesser mobility disability was associated with endorsed growth in both countries. More disability variables were associated with worry and growth in the Italian sample. CONCLUSIONS: The pandemic's negative aspects were associated with worse disability in both countries, and reported post-traumatic growth was associated with lesser disability. These findings may suggest directions for clinical intervention.