ABSTRACT
Background: Patient's (pts) adherence is a EULAR important recommendation for an optimal disease course and outcome. COVID-19 pandemic has globally challenged the issue of adherence. As relevant Greek data are lacking, the Pan-Hellenic Federation 'Rheumazein' (i.e., co-living with a Rheumatic Disease) conducted a survey among their members to assess adherence and a possible COVID-related negative impact. Objectives: The main endpoint of the study aimed to capture the degree of pt adherence to treatment, either with conventional synthetic or/and biologic DMARDS (csDMARDS, bDMARDS). The secondary endpoints were: a. To record pts'-physicians' interactive communication to assess the level of shared disease making (SDM). b. The emerged barriers to medication access during the pandemic and consequent restrictive measures. c. To record pt perceptions on the usefulness of mobile reminder applications towards an uninterrupted regimen. Methods: A 29-item quantitative questionnaire was uploaded in the social media of the Federation and its associations, in order to register pts' responses on the aforementioned sections. The questionnaire was accessible for a 58-day period (21/09/2021-17/11/2021). Results: Participants' characteristics: The responses of 303 adults with RD (M:F 63:240), aged (in yrs) 18-44: 35%, 45-54: 26%, >55: 38% respectively, were available for analysis. The RD types were RA 33%, AS 18%, PsA 13%, SLE 18%, Juvenile Arthritis 5% and Other RD 13%, respectively. Τhe education level was low/moderate 39%, high 30%, post-graduate 31%, respectively. Receivers of a monotherapy with either cs-or bDMARDS were 93(31%) and 83(27%), of a combined regimen cs+bDMARDs 114(38%) and off treatment 13 (4%). BDMARD receivers were mostly AS pts (93%) while the least, SLE pts (48%). The route of bDMARD administration (sc vs iv did not signifcantly differ (57% vs. 43%). Since diagnosis, the mean disease trajectory was 7. 6 yrs, the mean time on medication 6.9 yrs, while the mean duration on the current regimen 3 yrs, respectively. Adherence: At least one skipped dose during the last trimester was reported, signifcantly more often by pts under csDMARDs than by those under bDMARDs, (60% vs. 40%, p<0.001) with a mean number of 2.7 vs. 1. 8 skipped doses, respectively. Additionally, the main reasons of non-adherence under csDMARDs and bDMARDs signifcantly differed only in respect to pt responsibility (56% vs.19% p<0.001), but not for COVID-related reasons, namely fear either of getting infected, or due to a performed COVID vaccination (35% vs 42%), or due to physician recommendations (22% vs. 32%). Regarding the pt-physician interactive discussions on emerging new treatments, 90% of the pts reported this policy, but only 40% of them in a rather frequent to more frequent rate. In respect to satisfaction, 67% expressed a moderate to high satisfaction regarding the level of provided information, while the degree of their satisfaction was positively related with the frequency of these discussions. The main topics focused on the route and frequency of the medication, especially with bDMARD receivers. Of note, 80% of the bDMARD group participated in the SDM before commencing this therapy, but just 20% in the selection of the brand name. Only a minority of pts (17%) were aware of the existence of mobile applications, reminding the scheduled drug administration;however, they rated these programs as very useful (4.3 according to a 0-5 scale). Despite the difference source of supply of cs and bDMARDs on pt access to treatment, the impact of COVID-19 and consequent restrictive measures had not impaired it (1.5/5 and 1.7/5 by the above scale, respectively). Conclusion: A signifcant percentage of pts skip scheduled DMARD administrations, especially those (60%) under csDMARDs. The relationship with the physician was considered relatively satisfactory. Most of the pts did not have any mobile phone reminder application regarding their dose. Finally, the COVID-19 pandemic appeared to have had little effect on pts' access to both cs-and bDMARDs and co sequently, adherence to their treatments.
ABSTRACT
Background: EULAR recommendations emphasize the importance of suitable working conditions for people with Rheumatic diseases (RD). Thus, opportunities and choices at work need to be increased for people with rheumatic diseases. Conversely, the COVID-19 pandemic has challenged the working population and particularly those with chronic conditions, such as those with RD. However, there is still a lack of reliable data. Objectives: To depict contemporary real-life data regarding the work-related burden of disease among Greek patients with RD. To develop a White Paper with proposals to the State in order to facilitate people with rheumatic diseases to rejoin or be retained in the work force. Methods: A 24-item quantitative questionnaire was uploaded in the website and social media of REUMAZEIN to capture patients' responses in respect to work life. The questionnaire was online accessible for a 45-day period (15/8-30/9/2020). Results: The responses of 503 adult people with RD (M/F/NA 94/408/1), were available for analysis. Their age was stratified in decades (18-20 0.6%,21-30 5.99%, 31-40 22.36%, 41-50 38.92%, 51-60 22.16% and over 60 9.58%);totally, 83.44% were in the "work-reproductive" period. The predominant RD types were RA 30.3%, SLE 22.8%, AS 20.2% and PsA 20.2%, respectively. Nearly 90% were on medication, namely 40% on biologics, 33% on methotrexate (as a monotherapy or combined therapy), 16.2% on steroids. A minority were either on alternative therapies (2.8%) or off medication (7.5%), respectively. Most of the people were still employed (72.9%) on a full-time schedule (57.7%) and 4.8% on a part-time one, due to their RD. The rest of them (27.1%) were out of work either due to RD (17%) or retirement (1.7%) or for unrelated to the RD reasons (8.4%). The main source of financial income was personal work (52.4%), followed by a family member support (31.1%), while 11% had either a state pension (8%) or a subsidy (3.2%). In respect to the daily house-keeping, half of them (59.3%) had a varying difficulty (mild 36.3%, severe 23%) and 0.8% considered themselves as "unable". The diagnosis was mostly established (81%) prior to the work onset. Post-diagnosis, RD had not affected their working schedule in 47.2%, 17% continued to work with respective adaptations but 30% had quitted or resigned from their work 1-7 years later. RD was notified to the work environment by 85%. As for a compassionate work management, 46% reported no change, 28% an improved policy but 28% a worse one. The development of relative adaptations in the work setting (as chairs, devices, flexible schedule) were considered as favorite factors easing the work by 85%. 17% reported an employer's knowledge on RD related working legislation, 43% the contrary and another 38.7% wished for a future employer's awareness. Most of the participants (58.9%) had no personal information on this field but were eager to get it. The uneventful impact of RD on finding or keeping a job was registered by 77.4% and 66.9%, respectively. During COVID, most of the participants (53%) have not asked for an RD-related leave and only 24.2% chose to telework, a policy that raised mutual satisfaction in 19%. Of note, the working conditions have not mainly been altered (67%) after the end of the 1st quarantine. Conclusion: This study highlighted that although RD predominate in females, women are more willing to participate in such projects (F 90%). The financial income was mainly based on a personal or a family member work reimbursement (83%), while 11% depended on a state pension or subsidy. The majority has notified the RD to their work environment (85%) while another 85% considered as favorite factors easing the work, several adaptations in the work setting such as chairs, devices, flexible schedule etc. Interestingly, 60% of the participants were unaware of the beneficial legal work rights and nearly 70% of them believe that RD is an obstacle for employment or working maintenance. COVID has not dramatically impaired their work life although the use of teleworking should be streng hened.