Since the beginning of the COVID-19 pandemic, social distancing had a major impact on the mental health of the general population,1,2 with an increase in symptoms related to anxiety, depression, and post-traumatic stress disease (PTSD) compared with before the pandemic outbreak.3–5 Such was associated primarily with young age, female gender, and previous psychiatric illness,6 but also with loneliness, COVID-19-specific worry, and low distress tolerance.7 Other studies on the Chinese population showed how the prevalence of acute stress symptoms gradually declined with the progression of the epidemic, although that of anxiety and depression symptoms still stayed at high levels.8
Systemic sclerosis (SSc) is a chronic autoimmune disease characterized by fibrosis of skin and internal organs and vasculopathy, leading to severe physical impairment.9
A state of psychological fragility was notably found in people with chronic conditions during COVID-19 pandemic,10 including SSc patients. In such a population, a substantial increase in anxiety, but not depression symptoms compared to before the COVID-19 pandemic emerged, inversely related to adequacy of financial resources.11
Another crucial element for this population is fear due to COVID-19, as reported in a cohort of SSc patients from the United States, Canada, France, and the United Kingdom (UK) by a validated questionnaire.12 Higher levels of COVID-19-related fear were found in UK SSc patients and were associated with low economic intake and with a previous anxiety condition.13
Pandemic fear was described by patients as a major cause of missed outpatient visits, as emerged from a tele-survey of Indian Progressive Systemic Sclerosis Registry.14
For SSc patients, assiduous follow-up is essential to prevent or limit disease multi-organ involvement through appropriate diagnostic and therapeutic tools to achieve a better disease outcome.15
Anxiety and fear due to COVID-19 thus emerged as marking psychological fragility in SSc patients in the course of the current pandemic. Therefore, the aim of the present work is to assess their prevalence among SSc patients during the second and third waves of the SARS-CoV-2 pandemic in Italy using validated questionnaires, and to investigate possible associated factors.
Materials and Methods
We performed a cohort study on 114 consecutive patients with SSc referring to the Scleroderma Clinic of Policlinico Umberto I in Rome, Italy. During the period from October 2020 to March 2021, a new rise in the RT index (the average number of new infections caused by a single infected individual at time t in the susceptible population16) was registered and stricter lockdown measures have been applied.17 We selected 28 patients who had not attended the scheduled examination and 86 subjects who had performed regular outpatient visits during the same period, matched for sex and age. Both groups were administered (respectively by telephone or in-person) the Generalized Anxiety Disorder Scale-7 (GAD-7) questionnaire, used in patients with pre-existing medical conditions during the COVID-19 pandemic, and the COVID-19 Fears Questionnaire for Chronic Medical Conditions (COVID-19 Fears), developed and validated on SSc patients of Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 cohort study.12,18,19 The GAD-7 is a 7-item scale reporting score from 0 to 3 on all the questions. It investigates how often the patient has been bothered by seven different symptoms of anxiety during the last 2 weeks with response options such as “not at all”, “several days ‘, “more than half the days”, and “nearly daily” scored as 0, 1, 2, and 3, respectively. The scores of 5, 10, and 15 are taken as cut-off points for mild, moderate, and severe anxiety, respectively. A score of 8 points or more is a reasonable cut-off for needing further evaluation to determine the presence and type of anxiety disorder.18 The GAD-7 has been found to have great psychometric properties and is short and easy to administer19 (Table 1). The COVID-19 fears is a 10-item scale measure assessing pandemic-related fears among vulnerable patients due to pre-existing illnesses. It evaluates fears of social isolation, adequate care of chronic conditions during the pandemic, greater risk of the COVID-19 complications due to medical conditions and fear of COVID-19 infection (Table 2).12 Finally, an analysis of possible factors associated with higher questionnaire scores in patients who did not have outpatient follow-up was conducted, such as age, disease activity reported by patients, ongoing therapy for anxiety/depression, current work status, and living alone.12 This study complies with the Declaration of Helsinki. The Sapienza University of Rome – Policlinico Umberto I ethic committee has approved (institutional review board approval n° 6364) the study, and informed consent has been obtained from the subjects.
Table 2 10-Item COVID-19 Fears Questionnaire for Chronic Medical Conditions (COVID-19 Fears), Validated on Population of Patients with Systemic Sclerosis
Statistical Analysis
Statistical analysis of the result was performed using GraphPad Prism 8 for Windows. Qualitative variables were described as frequencies and percentages, continuous variables as medians and interquartile ranges, and assessed by chi-square test (χ2 test) and Fisher’s exact test, as appropriate. For the comparison of ordinal values between independent sample Mann–Whitney test for paired or unpaired samples was used. Multivariate linear regression analysis was used to adjust the association between a continuous dependent variable and independent variables for potential confounders.
Results
The study population consisted of 114 consecutive SSc patients. Of the 28 patients who did not perform outpatient visits during the selected period, 27 were female and the median age [quartiles] was 64 [55.25;70] years. Among 86 patients who performed regular follow-up, 78 were female and the median age [quartiles] was 60 [61.5;67] years. The first group had statistically significant more patients scoring ≥8 on the GAD-7 questionnaire (22/78.6% vs 16/18.6%, p<0.0001) and recorded higher scores both on GAD-7 (median [quartiles] 10.5 [8.25;14] vs 4 [0;7], p<0.0001) and COVID-19 Fears (median [quartiles] 31.5 [26.25;37.25] vs 20 [13.75;28], p<0.0001) than the second group. More attending group patients self-reported a worsening of SSc symptoms than missing group ones (26/30.3% vs 3/10.7, p=0.0039) (Table 3). On multivariate analysis performed on missing group patients, lack of work and ongoing therapy for anxiety/depression showed a significant association with GAD-7 (p=0.0275 and p=0.0188) and COVID-19 Fears score (p=0.0016 and p=0.0099) (Tables 4 and 5). The multivariate analysis performed on all the 114 patients, considering GAD-7 and COVID-19 Fear scores as dependent variables, showed statistically significant associations with anxiety/depression therapy assumption (p=0.0010 and p=0.0137, respectively).
Table 3 Characteristics of Study Population
Table 4 Multivariate Analysis Performed on 28 Patients Who Missed Scheduled Appointments Considering GAD-7 Score as the Dependent Variable
Table 5 Multivariate Analysis Performed on 28 Patients Who Missed Scheduled Appointments Considering COVID-19 Fears Score as the Dependent Variable
Discussion
Patients with SSc represent a high-risk population for complications related to COVID-19 due to the presence of fragility and immunosuppressant drug use,20,21 where a higher prevalence of SARS-CoV-2 infection related to lung involvement resulted.22 The presence of interstitial lung disease and ongoing immunosuppressive treatment may place patients with SSc at risk of developing more severe disease and higher mortality when infected with SARS-CoV-2.23,24 Since the beginning of the pandemic, the need to balance patients’ safety with the necessity for frequent medical check-ups became apparent, as well as a growing interest in the psychological fragility of SSc patients emerged.25 In Italy, during the pandemic progression, additional waves of the epidemic occurred, making it necessary the reintroduction of stricter restrictive measures. Of note, psychological consequences showed a correlation with the length of isolation time.26
Our study shows that anxiety disorder and fear related to COVID outbreak are greater in patients with SSc who have not attended scheduled appointments, and they are associated with lack of work activity and ongoing therapy for anxiety/depression. Our results are in line with the multicentric Scleroderma Patient-centred Intervention Network (SPIN) COVID-19 cohort study, in which SSc patients presented a rise in anxiety symptoms compared to pre-COVID-19 era, with no significant increase in depression symptoms and with the adequacy of financial resources associated with a better outcome.11 Similar results emerged from Indian Progressive Systemic Sclerosis Registry, where the pandemic fear was a cause of missed outpatients visits and job loss was found associated to a self-reported worsening of disease.14 Another work from the SPIN COVID-19 cohort showed that variables associated with COVID-19 fear were interference of breathing problems in daily activities, financial resources inadequacy, and high levels of previous anxiety.13
Our study identifies for the first-time higher amounts of COVID-19-related fear and generalized anxiety disorder symptoms in the subgroup of SSc patients who missed regular visits, evidenced by validated questionnaires. These patients deserve attention regarding the presence of risk factors for missed periodic check-ups, whose regularity should be ensured as recommended by the World Scleroderma Foundation.27 As emerged in the Taiwan population, high anxiety and COVID-19 worry resulted associated with non-attendance to the scheduled appointment.28 Such result stressed the need for intervention strategies regarding the mental health of this patient’s group. An example in this way is the SPIN COVID-19 Home-Isolation Activities Together (SPINCHAT) Program, a group-based intervention delivered by video conference and intended to reduce anxiety among at-risk people with SSc, whose results are in progress.29 Other strategies to address patient concerns were and still are applied, such as telemedicine or home delivery drugs.30
A partially encouraging finding is that more regular attendees reported a worsening of SSc symptoms, and this gives hope that, at least for this group of at-risk patients, regular check-ups will be guaranteed. Maybe patients who are worse off are keener to comply than controls and more worried about their current autoimmune disease than about the risk of viral infection.31 Besides, the reason for this behaviour can be also due to the more difficult management of their clinical state remotely.
Conclusion
A limitation of the present work is the small size of the cohort of missing patients, with the impossibility to make a further stratification. On the other hand, strengths are the choice of a homogeneous population and the application of a questionnaire validated for SSc patients.
On that note, what we learned from our present study is that the possible arising of psychosocial disabilities and deterioration in the quality of life should be taken into account. We expect that the results obtained so far will allow focusing on the psychological fragility of SSc patients, to provide the necessary follow-up and treatment, thus preventing their disease from worsening during such a particular long-lasting historical period.
Data Sharing Statement
The datasets generated during and/or analysed during the current study are available from the corresponding author on reasonable request.
Ethics Statement
This study complies with the Declaration of Helsinki. The Sapienza University of Rome – Policlinico Umberto I ethic committee has approved (institutional review board approval n° 6364) the study and written (or oral for patients reached by telephone) informed consent has been obtained from the subjects.
Acknowledgment
Data of the present manuscript were presented at 58° Italian Rheumatology Congress, PO:09:163, Reumatismo 2021, Vol. 73, N° 4 (Special number 2).
Author Contributions
All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work.
Disclosure
The authors declare they have no conflicts of interest.
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14. Kavadichanda C, Shobha V, Ghosh P, et al. Clinical and psychosocioeconomic impact of COVID-19 pandemic on patients of the Indian Progressive Systemic Sclerosis Registry (IPSSR). Rheumatol Adv Pract. 2021;5(2):rkab027. PMID: 34095747; PMCID: PMC8135468. doi:10.1093/rap/rkab027
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Skinstitut Holiday Gift Kits take the stress out of gifting
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LONDON (AP) — Most people have accumulated a pile of data — selfies, emails, videos and more — on their social media and digital accounts over their lifetimes. What happens to it when we die?
It’s wise to draft a will spelling out who inherits your physical assets after you’re gone, but don’t forget to take care of your digital estate too. Friends and family might treasure files and posts you’ve left behind, but they could get lost in digital purgatory after you pass away unless you take some simple steps.
Here’s how you can prepare your digital life for your survivors:
Apple
The iPhone maker lets you nominate a “ legacy contact ” who can access your Apple account’s data after you die. The company says it’s a secure way to give trusted people access to photos, files and messages. To set it up you’ll need an Apple device with a fairly recent operating system — iPhones and iPads need iOS or iPadOS 15.2 and MacBooks needs macOS Monterey 12.1.
For iPhones, go to settings, tap Sign-in & Security and then Legacy Contact. You can name one or more people, and they don’t need an Apple ID or device.
You’ll have to share an access key with your contact. It can be a digital version sent electronically, or you can print a copy or save it as a screenshot or PDF.
Take note that there are some types of files you won’t be able to pass on — including digital rights-protected music, movies and passwords stored in Apple’s password manager. Legacy contacts can only access a deceased user’s account for three years before Apple deletes the account.
Google
Google takes a different approach with its Inactive Account Manager, which allows you to share your data with someone if it notices that you’ve stopped using your account.
When setting it up, you need to decide how long Google should wait — from three to 18 months — before considering your account inactive. Once that time is up, Google can notify up to 10 people.
You can write a message informing them you’ve stopped using the account, and, optionally, include a link to download your data. You can choose what types of data they can access — including emails, photos, calendar entries and YouTube videos.
There’s also an option to automatically delete your account after three months of inactivity, so your contacts will have to download any data before that deadline.
Facebook and Instagram
Some social media platforms can preserve accounts for people who have died so that friends and family can honor their memories.
When users of Facebook or Instagram die, parent company Meta says it can memorialize the account if it gets a “valid request” from a friend or family member. Requests can be submitted through an online form.
The social media company strongly recommends Facebook users add a legacy contact to look after their memorial accounts. Legacy contacts can do things like respond to new friend requests and update pinned posts, but they can’t read private messages or remove or alter previous posts. You can only choose one person, who also has to have a Facebook account.
You can also ask Facebook or Instagram to delete a deceased user’s account if you’re a close family member or an executor. You’ll need to send in documents like a death certificate.
TikTok
The video-sharing platform says that if a user has died, people can submit a request to memorialize the account through the settings menu. Go to the Report a Problem section, then Account and profile, then Manage account, where you can report a deceased user.
Once an account has been memorialized, it will be labeled “Remembering.” No one will be able to log into the account, which prevents anyone from editing the profile or using the account to post new content or send messages.
X
It’s not possible to nominate a legacy contact on Elon Musk’s social media site. But family members or an authorized person can submit a request to deactivate a deceased user’s account.
Passwords
Besides the major online services, you’ll probably have dozens if not hundreds of other digital accounts that your survivors might need to access. You could just write all your login credentials down in a notebook and put it somewhere safe. But making a physical copy presents its own vulnerabilities. What if you lose track of it? What if someone finds it?
Instead, consider a password manager that has an emergency access feature. Password managers are digital vaults that you can use to store all your credentials. Some, like Keeper,Bitwarden and NordPass, allow users to nominate one or more trusted contacts who can access their keys in case of an emergency such as a death.
But there are a few catches: Those contacts also need to use the same password manager and you might have to pay for the service.
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Is there a tech challenge you need help figuring out? Write to us at onetechtip@ap.org with your questions.
The Canadian Paediatric Society says doctors should regularly screen children for reading difficulties and dyslexia, calling low literacy a “serious public health concern” that can increase the risk of other problems including anxiety, low self-esteem and behavioural issues, with lifelong consequences.
New guidance issued Wednesday says family doctors, nurses, pediatricians and other medical professionals who care for school-aged kids are in a unique position to help struggling readers access educational and specialty supports, noting that identifying problems early couldhelp kids sooner — when it’s more effective — as well as reveal other possible learning or developmental issues.
The 10 recommendations include regular screening for kids aged four to seven, especially if they belong to groups at higher risk of low literacy, including newcomers to Canada, racialized Canadians and Indigenous Peoples. The society says this can be done in a two-to-three-minute office-based assessment.
Other tips encourage doctors to look for conditions often seen among poor readers such as attention-deficit hyperactivity disorder; to advocate for early literacy training for pediatric and family medicine residents; to liaise with schools on behalf of families seeking help; and to push provincial and territorial education ministries to integrate evidence-based phonics instruction into curriculums, starting in kindergarten.
Dr. Scott McLeod, one of the authors and chair of the society’s mental health and developmental disabilities committee, said a key goal is to catch kids who may be falling through the cracks and to better connect families to resources, including quicker targeted help from schools.
“Collaboration in this area is so key because we need to move away from the silos of: everything educational must exist within the educational portfolio,” McLeod said in an interview from Calgary, where he is a developmental pediatrician at Alberta Children’s Hospital.
“Reading, yes, it’s education, but it’s also health because we know that literacy impacts health. So I think that a statement like this opens the window to say: Yes, parents can come to their health-care provider to get advice, get recommendations, hopefully start a collaboration with school teachers.”
McLeod noted that pediatricians already look for signs of low literacy in young children by way of a commonly used tool known as the Rourke Baby Record, which offers a checklist of key topics, such as nutrition and developmental benchmarks, to cover in a well-child appointment.
But he said questions about reading could be “a standing item” in checkups and he hoped the society’s statement to medical professionals who care for children “enhances their confidence in being a strong advocate for the child” while spurring partnerships with others involved in a child’s life such as teachers and psychologists.
The guidance said pediatricians also play a key role in detecting and monitoring conditions that often coexist with difficulty reading such as attention-deficit hyperactivity disorder, but McLeod noted that getting such specific diagnoses typically involves a referral to a specialist, during which time a child continues to struggle.
He also acknowledged that some schools can be slow to act without a specific diagnosis from a specialist, and even then a child may end up on a wait list for school interventions.
“Evidence-based reading instruction shouldn’t have to wait for some of that access to specialized assessments to occur,” he said.
“My hope is that (by) having an existing statement or document written by the Canadian Paediatric Society … we’re able to skip a few steps or have some of the early interventions present,” he said.
McLeod added that obtaining specific assessments from medical specialists is “definitely beneficial and advantageous” to know where a child is at, “but having that sort of clear, thorough assessment shouldn’t be a barrier to intervention starting.”
McLeod said the society was partly spurred to act by 2022’s “Right to Read Inquiry Report” from the Ontario Human Rights Commission, which made 157 recommendations to address inequities related to reading instruction in that province.
He called the new guidelines “a big reminder” to pediatric providers, family doctors, school teachers and psychologists of the importance of literacy.
“Early identification of reading difficulty can truly change the trajectory of a child’s life.”
This report by The Canadian Press was first published Oct. 23, 2024.
