Exploring the role of rheumatic and musculoskeletal disease patient organisations during the COVID-19 pandemic: results from the REUMAVID study (phase 1)

Marco Garrido-Cumbrera, Helena Marzo-Ortega, Laura Christen, José Correa-Fernández, Sergio Sanz-Gómez, Victoria Navarro-Compán, REUMAVID Working Group

Clin Exp Rheumatol. 2022

Objective

This study aims to assess the role of RMD POs during the COVID-19 pandemic.

Methods

REUMAVID  is  an  international  collabo-ration led by Health & Territory Research (HTR) from the University of Seville, together  with  a  multidisciplinary  working group  comprising  rheumatologists,  health  care   professionals   and   researchers,   and   PO  representatives  from  seven  European countries:  Cyprus,  France,  Greece,  Italy, Portugal, Spain, and the United Kingdom. Further details about the study design and overall results  can  be  found  in  REUMA-VID’s seminal article.

Results

The first phase of the REUMAVID survey involved  1,800  RMD  patients,  of  whom 41.6%  (748/1,798)  were  member  of  POs (Fig. 1). During the first wave of the pandemic, among PO members, the proportion of  those  who  reported  receiving  information  on  how  COVID-19  might  affect  their  disease was high (73.1% vs. 40.5% of non-members), with POs being credited as the most  common  source  of  information  for  members (54.8%), followed by rheumatologists (28.8%), and GPs (14.3%). By contrast,  among  non-members,  the  most  com-mon source of COVID-19 related information  were  rheumatologists  (21.1%),  followed by GPs (15.4%), and their Rheumatology Society (9.1%), and only 7.6% from POs. Compared to non-members, a higher proportion  of  members  received  disease-related  information  from  POs  (58.7% vs. 19.0% of non-member), help with managing their disease or lifestyle through advice or digital approaches (25.5% vs. 23.8% of non-member), as well as emotional or psychological support (21.6% vs. 9.5% of non-member; p=0.003). A higher proportion of PO members were able  to  consult  with  their  rheumatologist  on  the  possible  effects  that  their  medication could have on COVID-19 (70.9% vs. 58.5%  of  non-members, p=0.009). Compared  to  non-members,  members  reported  slightly  better  (from  good  to  very  good) self-perceived  health  (40.2% vs.  33.0% of   non-members,   p=0.017), lower disease activity (5.0 vs. 5.4 of non-members, p=0.005) measured by a Visual Analogue Scale (VAS), better well-being (42.5% vs. 53.7% of non-members, p<0.001) measured by The WHO Five Well-Being Index (WHO-5), and lower risk of anxiety (54.5% vs. 59.2% of non-members, p=0.047) measured by the Hospital Anxiety and Depression Scale (HADs). Furthermore, a higher proportion of non-members gained weight (43.6% vs.  37.0%, p=0.010).  27.1% of members smoked more than before the COVID-19 pandemic (vs. 23.3% of non-members, p=0.305), while a higher proportion   of   non-members   increased   their   alcohol consumption (19.8% vs. 15.8% of members, p=0.246).

Conclusion

In conclusion, POs have played an important role in the healthcare ecosystem, filling the gap caused by the COVID-19 pandemic and related lockdowns. Members were better  informed  about  the  SARS-CoV-2  and the  possible  effects  on  their  disease,  while  more  often  receiving  emotional  support,  reporting better connection with healthcare professionals,  and  better  health  status  and  outcomes  during  these  difficult  moments. As  members  of  the  extended  healthcare team,  POs  provided  critical  information and  access  to  supportive  resources  to  all  RMD patients. Efforts should be made to better foster, formalise, and institutionalise collaboration between POs and healthcare systems, to improve patient care and quality of life for those affected with RMDs.

Enlace al artículo: https://pubmed.ncbi.nlm.nih.gov/35084328/