key: cord-0702761-qyy2eybm authors: Mikocka‐Walus, Antonina; Skvarc, David; van Tilburg, Miranda A. L.; Barreiro‐de Acosta, Manuel; Bennebroek Evertsz, Floor; Bernstein, Charles N.; Burisch, Johan; Ferreira, Nuno; Gearry, Richard B.; Graff, Lesley A.; Jedel, Sharon; Mokrowiecka, Anna; Stengel, Andreas; Knowles, Simon title: COVID‐19–related personal product shortages are associated with psychological distress in people living with gastrointestinal disorders: A cross‐sectional survey date: 2021-06-18 journal: Neurogastroenterol Motil DOI: 10.1111/nmo.14198 sha: ff317aa49ff85c133eda6a7810bed02c467d446c doc_id: 702761 cord_uid: qyy2eybm BACKGROUND: The mental health response to the coronavirus (COVID‐19) pandemic–related product shortages in those living with chronic gastrointestinal (GI) disorders has received little attention. We aimed to explore the association between the pandemic‐related product shortages and psychological distress in people with GI disorders. METHODS: This online cross‐sectional survey was nested within an ongoing, international, prospective study of well‐being in people with GI disorders. The study was advertised in multiple countries in May‐September 2020 via patient organizations and social media. The primary outcome measure was distress, evaluated by the Depression Anxiety Stress Scale. We utilized linear regressions, adjusting for covariates and testing individual moderation effects. KEY RESULTS: Overall, 831 people completed the survey from 27 countries, of whom 82% were female (mean age = 49 years). The most common disorders included inflammatory bowel disease (n = 322), celiac disease (n = 273), and irritable bowel syndrome (n = 260). Significant problems accessing food were reported by 19.8%, non‐medical therapies by 16%, toilet paper by 10.8%, and essential medication by 8.9% of the sample (>5% pain medication). There was a positive association between toilet paper and pain medication shortages and distress, and a negative association between food shortages and distress. Significant moderation effects were identified for COVID‐19 prevalence and toilet paper and food shortages, and between COVID‐19 fear and pain medication shortages. CONCLUSIONS AND INFERENCES: The study documented a significant relationship between product shortages and psychological distress, which were associated with COVID‐19 prevalence and fear. Strategies addressing COVID‐19 fear could potentially modify the relationship between shortages and distress. the product shortages. We hypothesized that there is a positive relationship between the COVID-19 pandemic-related product shortages and psychological distress in people with GI disorders. This online cross-sectional survey was nested within an ongoing, international, prospective study of well-being in people with GI disorders during the COVID-19 pandemic. The study was advertised to potential participants in multiple countries around the world in May-September 2020 via gastrointestinalspecific patient organizations and associated social media. Participants needed to meet the following eligibility criteria: (a) ≥18 years of age, (b) diagnosed (self-reported) by a physician with a GI disorder, and (c) able to provide informed consent. While the study was advertised broadly, it required understanding English as the questionnaire was provided in this language only. Consent was obtained by the participant's decision to complete the questionnaire. This study was approved by the Swinburne University of Patient demographics and health characteristics were collected with a questionnaire developed by the investigators. Income data were provided in the local currency and converted to US dollars using an approximate average conversion rate for the study period. 25 Income was ranked into percentiles: 5th, 10th, 25th, 50th, 75th, 90th, and 95th. GI disorders were self-reported. The DASS is a 21-item self-report scale that measures symptoms of distress (ie, stress, anxiety, and depression) over the past week. Each question is rated on a 4-point Likert scale from 0 (did not apply to me at all) to 3 (applied to me very much or most of the time). The DASS-21 has been shown to possess adequate construct validity and reliability for measuring the dimensions of depression, anxiety, and stress. 26 The 15-item GSRS is a widely used and reliable self-report measure that captures the severity of GI symptoms across a range of GI conditions. 27 Respondents rate their level of discomfort for a range of GI symptoms over the past week, using a 7-point Likert scale with anchor points of "no discomfort at all" to "very severe discomfort." The total score ranges from 15 to 105, with higher scores reflecting more severe symptoms. Average COVID cases per million between March and November 2020 were estimated using the online coronavirus pandemic data explorer. 28 Participant nations were then ranked according to lowest prevalence in that time frame (New Zealand, Australia, Canada) to highest (Belgium, United States, Switzerland). England, Northern Ireland, Scotland, and Wales were pooled to align with estimates from the data explorer. Participants reported whether they or someone from their household had been diagnosed with COVID-19, and responses were dichotomized to reflect participants who reported self/familial infection and those who did not. Brief IPQ is a widely used and reliable measure of illness perception. 29 This 8-item measure asks the respondents to rate their views regarding their level of concern in living with their illness (eg, controllability, impact, severity, duration) on a scale from 0 to 10, with 0 = no concern and 10 = extremely concerned. The authors of the scale encourage its adaptation to other illness settings. 30 Therefore, in the present study, we adapted the Brief IPQ to the COVID context, utilizing two IPQ subscales: GI-specific (IPQ-GI, 8 items) and COVID-19-specific (IPQ-COVID, five items). In the first subscale (IPQ-GI), to ensure that the scale assessed GI-specific perceptions, the word "illness" was replaced with "gastrointestinal condition," for example, "How much control do you feel you have over your illness?" became "How much control do you feel you have over your gastrointestinal condition?" The 8-item scale has a strong reliability (α = .83). A second version of this scale (IPQ-COVID) was used to assess perceptions relating to COVID-19. For each of the original items, the word "your illness" was replaced with "COVID-19," for example "How much control do you feel you have over your illness?" became "How much control do you feel you have over COVID-19?". After three items (4, 5, and 7) were discarded based on Cronbach's alpha, the reliability was good (α = .75). IPQ-GI and IPQ-COVID totals were created by averaging items, with higher scores indicating poorer GI illness perceptions or poorer perceptions relating to COVID-19 respectively. Participants were asked to give their perception of the current state of coronavirus in their state or province ("What is your sense of the The Fear Relating to COVID-19 Scale is derived from the Fear of AIDS Scale, 31 has been validated in the IBD population, and showed excellent psychometric properties. 32 This 14-item scale asks respondents to indicate the level of fear/concern they are experiencing regarding different situations, such as contracting COVID-19 or having contact with health professionals. For the present study, five GI-amplified items were added regarding (a) whether COVID will worsen the GI disorder; (b) whether COVID will affect access to medical care; (c) whether COVID will affect the management of the GI disorder; (d) whether the GI disorder will increase the risk of contracting COVID; and (e) whether having a GI disorder will increase the risk of death from COVID. All items are rated on a 5-point scale from 1 (no fear) to 5 (very much fear). Scale scores ranged from 14 to 70, and higher scores indicated greater fear/concern about COVID-19. The scale presents two factors: General Fear of COVID and GI-amplified Fear of COVID, both with acceptable internal reliability (α = .93 and α = .88, respectively). Product shortages were evaluated with a series of 4-point Likert scales ranging from "no problem at all" to "serious problem." This measure was developed by the investigators, utilizing multi-country experiences to date and the unique context of a global pandemic. Items included shortages of medications, pain medications, food, toilet paper, and non-medical therapies. Scores ranged from 1 to 4, with higher scores reflecting greater difficulties with product shortages. Missing data were deemed to be missing at random with no evi- To explore whether specific vulnerable populations would experience stronger associations between COVID shortages and psychological distress, we performed a series of linear regressions, adjusting for the presence of other variables and testing individual moderation effects. The total distress score was the dependent variable in all models, and we examined five specific shortages common to gastrointestinal patients. The moderator variables entered into the models were as follows: parent/caregiver status, chronic condition, employed, COVID prevalence, perception of COVID spread, COVID fear, income, diarrhea severity, COVID infection, IPQ-COVID, IPQ-GI, GSRS, and age. To accommodate the number of model effects and control the type I error rate, we developed our final model by running individual moderator-specific models that contained all univariate main effects, and the interactions of a single moderator variable with each of the shortage variables. All analyses were performed in R 31 and Jamovi, 33 using the car 34 Variable is ranked 1 to 20, with higher values indicative of greater COVID prevalence among the countries reported in the sample. Overall, 831 people completed the survey, of whom 82% were female and were, on average, 49 years old (SD = 16.5). The majority were married (56%), had a university degree (60%), and came from the United Kingdom (n = 365); see Tables 1 and 2 . The most common GI disorder types included IBD (n = 322), celiac disease (n = 273), and IBS (n = 260), with 448 (53.9%) identifying living with a co-morbid chronic illness (see Table 2 ). The mean scores for distress symptoms were within the normal range, and the severity of GI symptoms was also low (M = 36.2, SD = 16.6). Product shortages data are presented in Table 3 . Moderate serious problems accessing food were reported by almost one in five of the sample, with 16% affected by shortages of non-medical therapies and 10.8% by toilet paper shortages, while essential medication shortages affected 8.9% of the sample. The univariate correlations between the variables of interest are presented in Table 4 . Diarrhea severity, illness perceptions of COVID and gastrointestinal illness, total gastrointestinal symptom severity, and shortages of medications, toilet paper, special diet food, pain medication, and non-medication therapies were each significantly and positively correlated with distress, with the strongest association observed for fear of COVID. Interestingly, we observed a weak negative association between current employment status and annual pre-tax household income, suggesting that a not-insubstantial number of participants had lost employment during the COVID crisis. Each of the five shortage variables was positively correlated with the others, generally with small but robust associations. The strongest associations were between toilet paper and special food shortages (r = .505), and between general medications and pain medications (r = .517). The COVID-19 pandemic-related product shortages of toilet paper, pain medication, and food were significantly associated with distress. In particular, there was a positive association between toilet paper and pain medication shortages and distress, and there was a negative association between food shortages and distress ( Table 5 , the final regression model). In comparing geographic regions, we observed that the most variation in serious shortages was reported by participants for special diet food products and toilet paper. Participants from North America reported the highest proportion of food shortages (10.9%), followed by Australia and New Zealand (4.2%). Reports of serious toilet paper shortages were highest in North America, Australia, and New Zealand (between 6% and 7%). In a comparative examination of specific gastrointestinal diagnoses, we also observed that participants with a diagnosis of celiac disease were more likely to report moderate or serious food shortages (24% and 5.5%, respectively) compared to those with other GI diagnoses (13% and 1.7%). Participants with a celiac diagnosis were also more likely to report moderate, but not serious, shortages of toilet paper (10.1%) compared to those without a diagnosis (6.7%). Participants with celiac disease in all regions were more likely to report serious shortages of any type, though some variation was identified. Australia and New Zealand with a diagnosis of celiac disease were less likely to report shortages of pain medication and non-medication therapies (2.3% to 9.52%; 13.8% to 17.2%, respectively). Simple effects for moderations with distress did not retain significance within the IBS sample, but a positive association between fears of non-medication therapy shortages and distress emerged (b = 13.44, t = 2.21, p = 0.034). The interaction effect between age and medication was also not retained with the IBS sample. Analysis of the participants reporting a diagnosis of IBD revealed several differences from the overall sample. The associations between distress and employment, IPQ-COVID, pain medication shortages, and toilet paper shortages were not retained, nor the interaction effects between COVID fear and pain medications, and COVID prevalence and toilet paper shortages. In contrast, we ob- We also examined mean differences between these three diagnostic subgroups across all variables entered into the model (See Supplementary Table S4 reported the highest fear of food shortages, but was only statistically distinct from the IBD group, which reported the lowest. Significant moderation effects were identified for COVID-19 prevalence and toilet paper and food shortages, and between COVID-19 fear and pain medication shortages (Table 6) . Interestingly, as COVID-19 prevalence per 1 million population increased (average since March 2020), the association between toilet paper shortages and distress became negative. Participants from nations with the highest COVID-19 prevalence (Belgium, United States, Switzerland) did not achieve statistically significant associations between distress and toilet paper shortages, while nations with low prevalence (New Zealand, Australia, Canada) had strong positive associations. An almost symmetrical moderation effect was detected for the association between food shortages and distress, where nations with lower COVID-19 prevalence reported negative associations, while no associations were observed for nations with average or higher COVID-19 prevalence (Figure 1 ). Regarding the moderation of the association between distress and pain medication shortages by COVID-19 fear, where COVID-19 fear is highest, the association between pain medication shortages and distress is negative, and where COVID fear is low, the association between distress and pain medication shortages is positive. This international survey is the first to explore the relationship between product shortages and distress among adults living with GI disorders during the COVID-19 pandemic. The study documented a significant relationship between personal product shortages, specifically toilet paper, pain medication, and food shortages, and psychological distress. This relationship was significantly moderated by People living with GI disorders have a higher risk of distress, compared with healthy controls 36 ; however, given the anxiety surrounding it, the COVID-19 pandemic is likely to exacerbate this risk. Impaired psychological functioning in the general population has been reported during this pandemic. 7 This worsening well-being has been hypothesized to stem from prolonged isolation, as people in self-isolation or under quarantine appear to have a higher risk of developing anxiety and/or depression, 37 or the loss of employment/ income and rising rates of domestic violence. 38 In addition, parents have been shown to be under particular distress as they struggle combining at home work with at home schooling of their children. 39 However, ours is the first study documenting the role of product shortages in this context. Availability of products, such as toilet paper and pain medication, is essential to well-being, particularly for this population, whose symptoms often include pain, diarrhea, and/or frequent trips to the bathroom. Interestingly, we did not find F I G U R E 1 Distress and moderation simple slopes a relationship between other medications and non-medical treatments and distress despite these shortages being more commonly reported than pain medication. This might be due to immediate sense of control provided by pain medication not offered by other treatments, which usually require time to work. Paradoxically, we documented a negative association between food shortages and distress, where nations with lower COVID-19 prevalence reported negative associations. Nearly 20% of this study's respondents experienced moderate serious food shortages due to the COVID-19 pandemic, but it seems that those most affected by the food shortages tended not to be reporting current distress. It is possible that these participants were able to adapt, eating a more monotonous diet or simply reducing their food intake, which provided some sense of control and reduced distress. Previous studies have documented higher external locus of control in people with GI disorders such as IBD and functional gut disorders than in the healthy controls. 40 It could also be that those living in the countries with high COVID-19 prevalence such as the United States could be more focused on the virus itself, and its impact on their health, than on food shortages. Food is also a more generic category of item, and supermarkets were not completely sold out of food; responses may have been elevated if preferred foods were not able to be obtained. However, a complete lack of toilet paper for periods of time has been a feature of this pandemic. Further, the timing of the present study may also explain that, because distress due to food shortages was likely higher during the first wave of COVID-19 earlier in the year than during the second wave which is documented in the present study. Moreover, in a comparative examination of specific gastrointestinal diagnoses, we observed that participants with a diagnosis of celiac disease were more likely to report moderate or serious food shortages compared to those without those diagnoses. Due to the necessity of a specialized diet requiring strict avoidance of food with gluten, people with celiac disease would arguably be most affected by shortages of gluten-free products. Further, our study demonstrated that participants from nations with highest prevalence of COVID-19 reported negative associations between distress and toilet paper shortages, while nations with low In addition, analysis of the diagnostic subgroups revealed some distinctive patterns of distress between the largest diagnoses. Interestingly, our attempts to predict distress within the celiac sample were largely unsuccessful compared with IBS or IBD, though our analyses suggest that reported distress within this group was significantly lower than the other groups with less than half the variance present. Our lack of an overall significant model predicting distress within this diagnostic subgroup may also suggest that the experience of distress is experientially distinct from those with IBS or IBD. The presence of significant models for IBS and IBD, as well as the individually predictive variables, in contrast, allows exploration of key features of distress within each group. For example, we see that the IBS group was uniquely distressed by concerns related to non-medication therapies. Within the IBD group, we observed that younger age and lower diarrhea severity predicted fewer distress symptoms and that with increasing age came increased distress associated with fears of medication shortage. Curiously, the negative interaction effect between diarrhea severity and pain medication suggests that each of these variables had an inverse effect upon the association of the other with distress-that is, those with higher levels of diarrhea severity reported negative associations between distress and fears of pain medication shortages, and vice versa. One explanation for this interaction effect could be immediacy, where the more proximal concern to a participant (diarrhea symptoms) reduces concern about the more distal. Finally, we showed that those with a higher level of concern about their GI illness or about COVID-19 and with higher levels of COVID-19-related fear reported higher distress. However, when COVID-19 fear is highest, the association between pain medication shortages and distress is negative, whereas when COVID fear is low, more pain medication shortages are associated with higher distress. Therefore, strategies addressing COVID-19 fear, such as educational campaigns or psychological interventions improving coping strategies and fostering a greater sense of self-efficacy, could potentially modify the relationship between shortages and distress. This survey used a convenience and un-controlled sample recruited online, and therefore, participant demographics may not correspond to those seen in clinical populations. However, since recruitment for research studies at health clinics has become impractical (due to lockdown of clinics/research labs), given the risk of the virus for researchers, and also due to the burden of the pandemic on health practitioners, we opted to conduct the study online and recruit via GI-related groups and social media. Arguably, this sample might be more representative of the general population. This is supported by the sample's reported low levels of GI symptoms and good mental health. On the other hand, our sample had a high proportion of persons with university education, which makes it more educated than the general population. In addition, the participants were predominantly female, which limits the generalizability of its findings to males with GI disorders. Nevertheless, for many of these conditions (eg, IBS), the prevalence is much higher among females. For practical reasons, we relied on self-report measures. We relied on a selfreported diagnosis, which was not confirmed by a physician since this was most practical during the pandemic. In addition, while some of the scales we used are well-standardized (eg, DASS-21), others have not yet undergone a proper psychometric evaluation. For ex- Pty Ltd and Janssen-Cilag Pty Ltd. The authors have no conflict of interests in relation to this study. The other authors have nothing to report. AMW conceived and drafted the manuscript and is the guarantor of the article. DS analyzed and interpreted all data. All authors contributed to study design, promotion, and data collection, commented on drafts of the paper, and approved the final draft of the manuscript. SK ran the final check of the data accuracy and manuscript and provided final approval for the study. The data that support the findings of this study are available on a reasonable request from the senior author, SK. The data are not publicly available due to restrictions. Antonina Mikocka-Walus https://orcid. Johan Burisch https://orcid.org/0000-0002-3312-5139 Simon Knowles https://orcid.org/0000-0001-8000-1000 Download today's data on the geographic distribution of COVID-19 cases worldwide Stockholm European centre for disease prevention and control Shoppers urged to be patient as Victorian coronavirus restrictions impact food supply. ABC Rural Half of Australian women were impacted by period product shortages during coronavirus Coronavirus COVID-19: why is everyone buying toilet paper? 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