Introduction
No studies have reported mental health symptom comparisons prior to and during COVID-19 in vulnerable medical populations.
Objective
To compare anxiety and depression symptoms among people with a pre-existing medical condition and factors associated with changes.
Methods
Pre-COVID-19 Scleroderma Patient-centered Intervention Network Cohort data were linked to COVID-19 data from April 2020. Multiple linear and logistic regression were used to assess factors associated with continuous change and ≥ 1 minimal clinically important difference (MCID) change for anxiety (PROMIS Anxiety 4a v1.0; MCID = 4.0) and depression (Patient Health Questionnaire-8; MCID = 3.0) symptoms, controlling for pre-COVID-19 levels.
Results
Mean anxiety symptoms increased 4.9 points (95% confidence interval [CI] 4.0 to 5.7). Depression symptom change was negligible (0.3 points; 95% CI -0.7 to 0.2). Compared to France (
N
= 159), adjusted anxiety symptom change scores were significantly higher in the United Kingdom (
N
= 50; 3.3 points, 95% CI 0.9 to 5.6), United States (
N
= 128; 2.5 points, 95% CI 0.7 to 4.2), and Canada (
N
= 98; 1.9 points, 95% CI 0.1 to 3.8). Odds of ≥1 MCID increase were 2.6 for the United Kingdom (95% CI 1.2 to 5.7) but not significant for the United States (1.6, 95% CI 0.9 to 2.9) or Canada (1.4, 95% CI 0.7 to 2.5). Older age and adequate financial resources were associated with less continuous anxiety increase. Employment and shorter time since diagnosis were associated with lower odds of a ≥ 1 MCID increase.
Conclusions
Anxiety symptoms, but not depression symptoms, increased dramatically during COVID-19 among people with a pre-existing medical condition.
Objective
Fear associated with medical vulnerability should be considered when assessing mental health among individuals with chronic medical conditions during the COVID-19 pandemic. The objective was to develop and validate the COVID-19 Fears Questionnaire for Chronic Medical Conditions.
Methods
Fifteen initial items were generated based on suggestions from 121 people with the chronic autoimmune disease systemic sclerosis (SSc; scleroderma). Patients in a COVID-19 SSc cohort completed items between April 9 and 27, 2020. Exploratory factor analysis (EFA) and item analysis were used to select items for inclusion. Cronbach's alpha and Pearson correlations were used to evaluate internal consistency reliability and convergent validity. Factor structure was confirmed with confirmatory factor analysis (CFA) in follow-up data collection two weeks later.
Results
787 participants completed baseline measures; 563 of them completed the follow-up assessment. Ten of 15 initial items were included in the final questionnaire. EFA suggested that a single dimension explained the data reasonably well. There were no indications of floor or ceiling effects. Cronbach's alpha was 0.91. Correlations between the COVID-19 Fears Questionnaire and measures of anxiety (
r
= 0.53), depressive symptoms (
r
= 0.44), and perceived stress (
r
= 0.50) supported construct validity. CFA supported the single-factor structure (χ
2
(35) = 311.2,
p
< 0.001, Tucker-Lewis Index = 0.97, Comparative Fit Index = 0.96, Root Mean Square Error of Approximation = 0.12).
Conclusion
The COVID-19 Fears Questionnaire for Chronic Medical Conditions can be used to assess fear among people at risk due to pre-existing medical conditions during the COVID-19 pandemic.
Purpose: Many people with scleroderma rely on peer-led support groups as a coping resource. Reasons for not attending support groups in scleroderma have been investigated only in North American participants. This study assesses reasons for nonattendance in European countries and compares results with previously published North American findings. Materials and Methods: The same 21-item survey as used in the North American sample assessed possible reasons for not attending scleroderma support groups. Proportions of items rated Important or Very Important were compared between samples. Results: Consistent with the North American survey findings (N ¼ 242), the two items most commonly rated as (Very) Important reasons for nonattendance among 228 European participants were (1) already having enough support (57%), and (2) not knowing of any local scleroderma support groups (58%). Compared to North American non-attenders, European patients were significantly more likely to rate not knowing enough about what happens at support groups (46% vs 19%), not having reliable ways to get to meetings (35% vs 17%), and being uncomfortable sharing experiences with a group (22% vs 11%) as (Very) Important reasons for nonattendance. Conclusions: Improving access to European support groups, providing education about support groups and group leader training may encourage participation. ä IMPLICATIONS FOR REHABILITATION Rehabilitation professionals might help develop local support groups for people with systemic sclerosis (scleroderma) to address the lack of access to these groups for many patients. The need for transportation and limited local accessibility may also be addressed by implementing online systemic sclerosis support groups. Professionals in the field of rehabilitation may work with people with systemic sclerosis and patient organizations to provide education about support groups to improve support group attendance in Europe.
Introduction: No studies have examined factors associated with fear in any group of people vulnerable during COVID-19 due to pre-existing medical conditions. Objective: To investigate factors associated with fear of consequences of COVID-19 among people living with a pre-existing medical condition, the autoimmune disease systemic sclerosis (SSc; scleroderma), including country. Methods: Pre-COVID-19 data from the Scleroderma Patient-centered Intervention Network (SPIN) Cohort were linked to COVID-19 data collected in April 2020. Multivariable linear regression was used to assess factors associated with continuous scores of the 10-item COVID-19 Fears Questionnaire for Chronic Medical Conditions, controlling for pre-COVID-19 anxiety symptoms. Results: Compared to France (N = 156), COVID-19 Fear scores among participants from the United Kingdom (N = 50) were 0.12 SD (95% CI 0.03 to 0.21) higher; scores for Canada (N = 97) and the United States (N = 128) were higher, but not statistically significant. Greater interference of breathing problems was associated with higher fears due to COVID-19 (Standardized regression coefficient = 0.12, 95% CI 0.01 to 0.23). Participants with higher financial resources adequacy scores had lower COVID-19 Fear scores (Standardized coefficient = − 0.18, 95% CI − 0.28 to − 0.09). Conclusions: Fears due to COVID-19 were associated with clinical and functional vulnerabilities in this chronically ill population. This suggests that interventions may benefit from addressing specific clinical issues that apply to specific populations. Financial resources, health policies and political influences may also be important.
Purpose: To evaluate the importance of different challenges experienced by informal caregivers to persons with systemic sclerosis (SSc) and identify priorities for support services that could be developed. Materials and Methods: Caregivers of people with SSc from three continents completed an online questionnaire to rate the importance of possible caregiver challenges and likelihood of using different forms of support services. Importance of challenges and likelihood of using support services were rated from 1 (not important; not likely to use) to 4 (very important; very likely to use). Results: Two hundred and two informal caregivers completed the survey (79 women, 123 men). Mean age was 58 years (standard deviation ¼ 13). The most important challenges were related to supporting the care recipient with emotional difficulties and physical discomfort. Caregivers indicated that they would be more likely to use support services that involved online or hard-copy information resources, including those provided soon after diagnosis, compared to support that involved interacting with others. Conclusions: Supporting the care recipient in managing emotional difficulties and physical discomfort were important challenges among caregivers. Interventions delivered through hardcopy or online resources, including those delivered soon after the care recipient's diagnosis, were rated as being most likely to be used by caregivers.
ä IMPLICATIONS FOR REHABILITATIONMany caregivers for individuals with systemic sclerosis report struggling to support their care recipient with emotional difficulties and physical discomfort. Rehabilitation professionals can aid in the development of support services that caregivers have identified as being likely to use and can refer caregivers to resources that they have identified as being helpful, such as educational information about the disease. The development of support services should focus on aspects of caring that caregivers found most challenging and be delivered in a format that considers caregiver preferences.
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