The EULAR 2021 congress, also this year taking place in virtual mode, opens with good news for the rheumatological community of patients in our country: Serena Mingolla, scientific journalist in force at APMARR APS (National Association of People with Rheumatological and Rare Diseases ), was awarded, in the “Abstract patients” section, as the first author of a survey that the Italian patient association carried out to study the effects that the Covid-19 pandemic had on the mental health of rheumatological patients and on the initiatives implemented act to deal with the problems that emerged.
The award-winning research was presented on the opening day of the Congress, as part of the PARE session entitled: “The challenges of patients and patient organizations in the time of the pandemic”.
The assumptions and objectives of the survey
The Covid-19 pandemic has had a major impact on the mental health conditions of nearly 5 million Italians suffering from one of the 150 known rheumatological conditions.
In order to better understand the psychological impact of the emergency linked to the virus and the restrictions imposed to contain its spread, APMARR APS launched the project “Living with a rheumatological pathology” which included, among the various initiatives, the execution of a survey to determine which interventions could be most effective in helping these patients during the pandemic.
Going into the details, the survey involved 1,001 individuals resident in our country, interviewed in August last year (7-14 August) using the computer-supported web-interview methodology (CAWI).
The sample of people interviewed was made up of 55.9% of women and 44.1% of men, aged between 18 and 85 years.
All the people interviewed in this survey were affected by at least one pathology of rheumatological relevance.
The survey consisted of 29 closed-ended and 10 open-ended questions, with the aim of detecting the “all-round” situation experienced by people with rheumatological conditions in the Covid era, allowing them, at the same time, to give them the possibility of express their perceptions and moods experienced in this unprecedented period.
The picture that emerged from the survey of the perception of patients interviewed in the Covid era was cause for concern: almost 44.2% of the survey participants, in fact, reported a perceived worsening of their general health conditions following the Covid emergency. -19.
The area of greatest suffering turned out to be the psychological one: depression and high levels of anxiety, deriving from the emotional stress of the moment, dominated by the responses detected by the survey.
Not only that: patients also experienced deterioration in rheumatology symptoms as a direct result of the decline in mental health conditions experienced during the pandemic.
Worsening mental health conditions relevant to one’s underlying rheumatological condition, in turn, have exacerbated other symptoms commonly related to rheumatological diseases per se, such as insomnia.
Some patients have also reported that they are no longer able to perform physiotherapy and other motor activities due to the lockdown imposed by the Covid-19 pandemic.
The lack of social support linked to compulsory isolation has further aggravated these effects, particularly “experienced” negatively by chronic patients in general and experienced by remote workers.
The anti-social nature of the pandemic has also highlighted the emergence of some communication problems with their doctors: almost 41.3% of the patients interviewed in the survey, in need of rheumatological treatment, reported having had problems in the reach the treating rheumatologists, while 5.1% said they were unable to do so.
The pandemic had, as a consequence of indirect consequences, that of inducing the postponement of medical treatments and checkups that had been planned for some time, according to the responses of some patients interviewed during the survey.
Not only that: some patients have not been able to get in touch with their doctors or have had to postpone scheduled check-ups due to the pandemic.
The telephone consultation was not an easy test bench for patients: despite the “instructions” and training in the use of this communication system done by the doctors, this training work by the doctors did not guarantee often the resolution of the patient’s problems, being the dedicated telephone lines almost always busy and the attempts of telephone contact by the patients without answer.
One patient interviewed even reported that he felt abandoned by his doctor.
The response initiatives implemented by APMARR APS in the light of the survey results
Immediately after collecting the results of the survey, APMARR APS took action to study and develop ad hoc solutions capable of allowing the association to offer accessible and practical services for patients.
The patient association has therefore implemented a platform created by an Italian “start-up” capable of allowing psychologists and patients to communicate with each other safely and digitally.
The platform in question, which is still active, includes special solutions that allow patients to have access to psychological support through a completely virtual format that uses live video and chat.
In addition, each patient who accesses it has a page dedicated to him / her that he / she can share with the psychotherapist, complete with all the ad hoc tools to respond to the individual needs of the individual patient.
Mingolla S et al. The effect COVID-19 has on the mental health of people living with rheumatic diseases. From data to interventions. EULAR2021; Abs. OP0082-PARE