key: cord-0956710-uzitql1f
authors: Wu, Yin; Kwakkenbos, Linda; Henry, Richard S.; Carrier, Marie-Eve; Gagarine, Maria; Harb, Sami; Bourgeault, Angelica; Tao, Lydia; Carboni-Jiménez, Andrea; Negeri, Zelalem; Patten, Scott; Bartlett, Susan J.; Mouthon, Luc; Varga, John; Benedetti, Andrea; Thombs, Brett D.; Fortuné, Catherine; Gietzen, Amy; Guillot, Geneviève; Lewis, Nancy; Richard, Michelle; Sauvé, Maureen; Welling, Joep; Fligelstone, Kim; Gottesman, Karen; Leite, Catarina; Pérez, Elisabet; Baron, Murray; Malcarne, Vanessa; Mayes, Maureen D.; Nielson, Warren R.; Riggs, Robert; Assassi, Shervin; Ells, Carolyn; van den Ende, Cornelia; Frech, Tracy; Harel, Daphna; Hinchcliff, Monique; Hudson, Marie; Johnson, Sindhu R.; Larche, Maggie; Nguyen, Christelle; Pope, Janet; Rannou, François; Reyna, Tatiana Sofia Rodriguez; Schouffoer, Anne A.; Suarez-Almazor, Maria E.; Agard, Christian; Albert, Alexandra; Bernstein, Elana J.; Berthier, Sabine; Bissonnette, Lyne; Bruns, Alessandra; Carreira, Patricia; Chaigne, Benjamin; Chung, Lorinda; Correia, Chase; Denton, Christopher; Domsic, Robyn; Dunne, James V.; Dunogue, Bertrand; Farge-Bancel, Dominique; Fortin, Paul R.; Gordon, Jessica; Granel-Rey, Brigitte; Hatron, Pierre-Yves; Herrick, Ariane L.; Hoa, Sabrina; Jones, Niall; Fernandes, Artur Jose de B.; Kafaja, Suzanne; Khalidi, Nader; Launay, David; Manning, Joanne; Marie, Isabelle; Martin, Maria; Mekinian, Arsene; Melchor, Sheila; Nikpour, Mandana; Olagne, Louis; Proudman, Susanna; Régent, Alexis; Rivière, Sébastien; Robinson, David; Rodriguez, Esther; Roux, Sophie; Sobanski, Vincent; Steen, Virginia; Sutton, Evelyn; Thorne, Carter; Wilcox, Pearce; Ayala, Mara Cañedo; Nordlund, Julia; Østbø, Nora; Rice, Danielle B.; Turner, Kimberly A.; Culos-Reed, Nicole; Dyas, Laura; El-Baalbaki, Ghassan; Hebblethwaite, Shannon; Bustamante, Laura; Duchek, Delaney; Ellis, Kelsey
title: Factors associated with fears due to COVID-19: A scleroderma patient-centered intervention network (SPIN) COVID-19 cohort study
date: 2020-11-25
journal: J Psychosom Res
DOI: 10.1016/j.jpsychores.2020.110314
sha: a734f70288788119fd8c6d707183a682a9a0b607
doc_id: 956710
cord_uid: uzitql1f

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. The needs of people living with chronic illness during a pandemic may differ depending on the social and political context in which they live.

The SARS-CoV-2 coronavirus disease (COVID- 19) pandemic has caused over one million deaths worldwide 1 and led to widespread political, economic, and social disruptions. In addition to fear of being infected or that family or friends will be infected, there has been a steady stream of images and news headlines underlining the fragility of health care systems and raising questions about the ability of health care systems to provide necessary medical care to people infected with COVID-19. 2, 3 There are also fears that social isolation may be long lasting and that post-pandemic recovery of individual and public economic resources may be slow or incomplete. [4] [5] [6] [7] Individuals who are vulnerable to COVID-19 due to pre-existing medical conditions likely experience high levels of fear, which could lead to acute and ongoing anxiety. [4] [5] [6] [7] Based on a living systematic review on mental health in COVID-19, 8, 9 as of , no studies have reported sociodemographic and COVID-19 factors associated with levels of fear.

People with systemic sclerosis (SSc; scleroderma), a rare, chronic autoimmune disease, are representative of groups with medical conditions that put them at high risk for COVID -19 complications. Many people with SSc have interstitial lung disease, can be frail, and many use immunosuppressant drugs. 10, 11 The course of SSc is unpredictable and, even prior to COVID-19, SPIN COVID-19 Cohort found that mean anxiety symptoms increased substantially during COVID-19 compared to pre-COVID-19 levels, but depressive symptoms changed minimally. 16 The study found that people from the United Kingdom and the United States reported the largest increase in anxiety symptom scores and that people who used mental health services pre-COVID-19 had substantially lower increases in anxiety symptoms than others.

Factors associated with fear have not been investigated in any group of people vulnerable during COVID-19 due to pre-existing medical illness. Our objective was to investigate factors associated with fear of consequences of COVID-19, including country, comparing results from Canada, France, the United Kingdom, and the United States, controlling for pre-COVID-19 anxiety symptoms.

This was a longitudinal study that linked pre-COVID-19 data from the SPIN Cohort 11, 14, 15 to data collected during the baseline assessment of the separate SPIN COVID-19 Cohort between April 9, 2020 and April 27, 2020. Person-level, deterministic linking was used with participant email addresses as the identifier. The protocols for the SPIN COVID-19 Cohort and for the present study are available online (https://osf.io/62vut/). 18, 19 in English or French Descriptive statistics are presented as mean (standard deviation) for continuous variables and frequencies (percentages) for categorical variables. We evaluated the association of sociodemographic characteristics, medical characteristics, and COVID-19 variables with continuous scores of fears due to COVID-19 via multivariable linear regression (see Appendix Table 1 ). All variables were selected a priori and were entered simultaneously. Variables that were entered in models include male sex (reference female), age (continuous), non-White race or 

The SPIN Patient Advisory Board (https://spinsclero.com) reviews all SPIN research, including the present study, and advises the SPIN Steering Committee to ensure that SPIN research addresses the needs of people with SSc. Additionally, members of the study-specific SPIN COVID-19 Patient Advisory Team were involved in each stage of the present study, including designing the SPIN COVID-19 Cohort, selecting outcomes for assessment, interpreting results, and providing comments on the present manuscript. 

J o u r n a l P r e -p r o o f Journal Pre-proof As shown in Table 2 , in the multivariable model, compared to France, continuous scores of fears due to COVID-19 for participants from the United Kingdom were significantly higher; scores for Canada and the United States were also higher but not statistically significant. The 

Fears due to COVID-19 among people with SSc, in addition to pre-COVID-19 anxiety, were almost half a standard deviation higher among participants from the United Kingdom compared to those from France, which had the lowest levels, and this was statistically significant in multivariable analysis. Scores among Canadian participants were almost one-third of a standard deviation higher, but this was not statistically significant in multivariable analysis.

Scores among respondents from the United States were minimally and not statistically significantly higher. Other variables that were associated with greater fear included interference of breathing problems in daily activities and financial resource inadequacy, which was associated J o u r n a l P r e -p r o o f at almost the same level as pre-COVID-19 anxiety based on standardized multivariable regression coefficients.

Our study was the first to explore factors associated with fears due to COVID-19 in a vulnerable population due to a pre-existing medical condition. Findings on fear during COVID-19 in the present study differed from results from a study with the same participant sample that focused on anxiety, more generally, measured with the PROMIS Anxiety 4a v1.0. 16 In that study, anxiety symptoms were significantly and substantively higher in the United States and United Kingdom (highest in the United States), compared to France with symptoms in Canada only moderately and non-significantly higher. In the present study, fear was highest in the United Kingdom, but was not substantively or significantly higher among participants from the United States compared to France. Since fear is highly associated with anxiety conceptually, the divergence in findings on the United States was not expected. 16 Reasons for these discrepancies are likely complex, but it is possible that they could be associated with policy responses to COVID-19 in each country during the period of data collection. The UK's national response has been generally criticized and was described, for instance, as "astonishingly haphazard" in an editorial in the Lancet; both stress and anxiety, which may be a product of fear were high. 27 In the United States, fear was relatively low, but anxiety was higher than in any of the other countries. It is possible that the presence of such high levels of anxiety without accompanying high-level COVID-19 fears may be related to what has been seen as a lack of coherence of government actions in the response to the spread of the virus, as well as general turbulence in governance in the United States. Despite its long-standing reputation as a world leader, the United States Centers for Disease Control and Prevention has seen its role minimized and been J o u r n a l P r e -p r o o f relegated to what has been described as a status of an "ineffective and nominal adviser". 28 There has also been much greater public polarization about the severity of the pandemic in the United States compared to other countries included in our study. 29 Comparatively, more people from the United States may undermine compliance with social distancing and underestimate the threat of COVID-19 because of this polarization. 30 Thus, it is possible that inconsistent and incoherent government involvement and the chaotic political and social media environments may be factors, although it is not known to what degree this may be the case. Among the four countries, the French government undertook the strictest policies internationally to contain the spread of the virus, 31 which may be related to relatively lower level of insecurity among people with SSc, in terms of both fear and anxiety. In Canada, there has generally been a cross-partisan consensus on national response with less controversy about the pandemic severity or how to respond compared to the United States, for instance. 32 There were minor differences, depending whether bivariable or multivariable analyses are considered, but generally, findings on the severity of pre-pandemic breathing problems and financial resource adequacy were similar. In terms of magnitude of association, financial resources appear to be an important factor in fear and, possibly, more general anxiety. There have been no previous studies that focused on factors associated with fears due to COVID-19 so far, but some recent studies have investigated factors related with other conceptually relevant mental health outcomes, including anxiety and stress. [33] [34] [35] [36] [37] [38] These studies reported mostly similar findings. For example, lower monthly income was associated with a higher level of anxiety symptoms among the spouses of first-line medical staff in China 33 and with greater perceived stress in the Italian general population. 34 Among the general population of China, one study found participants with income below the median income were more likely to report moderate or J o u r n a l P r e -p r o o f severe anxiety symptoms; 35 another found participants with lower monthly family income levels, compared to the highest level, were more likely to report symptoms of anxiety and acute stress. 36 Higher income levels were associated with better general mental health in the Spanish population, 37 but one study found people from high income families, compared to lower income families, were at higher risk of developing anxiety and stress in Bangladesh. 38

Our finding that participants with greater interference from breathing problems are more vulnerable and may be at higher risk of mental health problems, including fears, suggests that the specific needs of this population should be considered in supporting mental health in COVID-19.

Pre-existing medical characteristics were taken into account in the design of the SPIN COVID-19 Home-Isolation Activities Together (SPIN-CHAT) Program, a group-based multifaceted intervention delivered by videoconference and intended to reduce anxiety among at-risk people with SSc. 39 Results are pending. Additionally, our findings underline that financial implications of the pandemic may have an important role in mental health outcomes. All of the countries with participants in our study have provided aid packages, [40] [41] [42] [43] and the findings of the study emphasize the importance of economic supports for those in need. Social workers and other qualified personnel may be able to help patients with chronic diseases who have financial constraints identify and access financial support resources, if available.

Our study is the first to explore the factors associated with fears during COVID-19 in a vulnerable population with a pre-existing medical condition and the first study that applied the validated COVID-19 Fears Questionnaire for Chronic Medical Conditions, which was specifically designed for people with chronic diseases. The SPIN Cohort is a well-described, J o u r n a l P r e -p r o o f ongoing cohort that allowed us to examine pre-COVID-19 factors. There are also limitations to consider. First, the SPIN Cohort is a convenience sample, although the demographic and medical characteristics of the SPIN Cohort participants are similar to other large SSc cohorts. 11, 14 Second, evidence only from people with SSc may reduce generalizability. Based on the current study, ideally other studies will evaluate factors associated with fear during COVID-19 in other groups of people vulnerable due to medical conditions. Third, people in local communities may have relevant lived experiences, but it was not possible to capture and include community-level variables, such as level of community prevention and control. Although there were differences between countries, these may not have reflected the different experiences of people within countries. We also were not able to consider the organization and coherence of care during the pandemic, which may have differed at the national, regional, or local levels

In sum, this was the first study to investigate factors associated with fears due to COVID-19 among participants with a chronic medical condition using a validated measure. Fears due to COVID-19 among people with SSc were greatest among participants from the United Kingdom, followed by Canada, the United States, and France. Greater interference of breathing problems in daily activities and lower financial resource adequacy were associated with fear levels, as well.

There is a need for considering the specific needs of people with medical conditions in designing mental health interventions, and these might include steps to help them access available resources if they are facing financial constraints. 

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PROMIS Anxiety 4a v1.0 pre-COVID (continuous) 0. 34  People with chronic diseases may experience high levels of fear due to COVID-19  We examined factors associated with fears due to COVID-19 in an at-risk population  We used the validated COVID-19 Fears Questionnaire for Chronic Medical Conditions  Fears due to COVID-19 among people with SSc differed substantially by country  Interference of breathing problems and financial adequacy were related to fears J o u r n a l P r e -p r o o f