Impact of COVID-19 on disease (self) management and well-being in people with Rheumatic or Musculoskeletal diseases across four European countries: a mixed methods study

TY - JOUR

T1 - Impact of COVID-19 on disease (self) management and well-being in people with Rheumatic or Musculoskeletal diseases across four European countries

T2 - a mixed methods study

AU - Matos, Cristinano

AU - Ferreira, Ricardo J O

AU - Pinho, Ana Maria

AU - Costa, Cristina

AU - Fragoulis, George E

AU - Psarelis, Savvas

AU - Parperis, Konstantinos

AU - Makri, Souzi

AU - Williams, Ruth

AU - Barata, A

AU - Marques, Andréa

AU - Lempp, Heidi

AU - Nikiphorou, Elena

N1 - Funding Information: Research grant from Lilly (UK) without influence in the scientific work. Publisher Copyright: © 2023, Sociedade Portuguesa de Reumatologia. All rights reserved.

PY - 2023/8

Y1 - 2023/8

N2 - BACKGROUND: Qualitative data on how the COVID-19 pandemic has affected the lives of people with rheumatic and musculoskeletal diseases (RMDs) in different European countries are lacking.OBJECTIVES: To describe the impact of the first two waves of the COVID-19 pandemic on people with inflammatory RMDs concerning (self)management of their disease, interaction with the health care team, emotional well-being and overall health.METHODS: A mixed-methods study of adults (>18 years) with RMDs on immunosuppression from Cyprus, England, Greece, and Portugal took part on online focus groups (FG) after the first wave (July-August, 2020). The data was transcribed verbatim and thematically analyzed. Informed by the qualitative findings, a follow-up survey was developed for the same participants after the second wave, allowing to compare the perceived impact.RESULTS: Twenty-four patients (6 from each country; 21 women; 33-74 years range) participated. Three key themes were identified (with 3-7 subthemes each), focusing on the impact of COVID-19 on the: (i) individual, (ii) health settings, and (iii) work and community. Overall, qualitative results were similar across countries. The follow-up survey during the second wave highlighted a worsening of psychosocial aspects, e.g. sleep problems, stress, and isolation.CONCLUSIONS: People with RMDs felt vulnerable and anxious, specifically about how to cope with isolation and difficulties in communicating with healthcare providers. The second wave had a more significant impact on patients. Healthcare providers and policymakers need to consider measures to ameliorate the longer-term impact that many may still face.

AB - BACKGROUND: Qualitative data on how the COVID-19 pandemic has affected the lives of people with rheumatic and musculoskeletal diseases (RMDs) in different European countries are lacking.OBJECTIVES: To describe the impact of the first two waves of the COVID-19 pandemic on people with inflammatory RMDs concerning (self)management of their disease, interaction with the health care team, emotional well-being and overall health.METHODS: A mixed-methods study of adults (>18 years) with RMDs on immunosuppression from Cyprus, England, Greece, and Portugal took part on online focus groups (FG) after the first wave (July-August, 2020). The data was transcribed verbatim and thematically analyzed. Informed by the qualitative findings, a follow-up survey was developed for the same participants after the second wave, allowing to compare the perceived impact.RESULTS: Twenty-four patients (6 from each country; 21 women; 33-74 years range) participated. Three key themes were identified (with 3-7 subthemes each), focusing on the impact of COVID-19 on the: (i) individual, (ii) health settings, and (iii) work and community. Overall, qualitative results were similar across countries. The follow-up survey during the second wave highlighted a worsening of psychosocial aspects, e.g. sleep problems, stress, and isolation.CONCLUSIONS: People with RMDs felt vulnerable and anxious, specifically about how to cope with isolation and difficulties in communicating with healthcare providers. The second wave had a more significant impact on patients. Healthcare providers and policymakers need to consider measures to ameliorate the longer-term impact that many may still face.

KW - Adult

KW - Humans

KW - Female

KW - COVID-19/epidemiology

KW - Pandemics

KW - Musculoskeletal Diseases/epidemiology

KW - Portugal

KW - Cyprus

UR - http://www.scopus.com/inward/record.url?scp=85173855910&partnerID=8YFLogxK

M3 - Article

C2 - 37839032

SN - 2795-4552

VL - 2

SP - 237

EP - 246

JO - ARP rheumatology

JF - ARP rheumatology

IS - 3

ER -