A home-based exercise program during COVID-19 pandemic: Perceptions and acceptability of juvenile systemic lupus erythematosus and juvenile idiopathic arthritis adolescents.

Abstract

Objectives To investigate the perceptions and acceptability of a home-based exercise intervention in systemic lupus erythematosus (JSLE) and juvenile idiopathic arthritis (JIA) adolescent patients during the COVID-19 pandemic, and to explore the effects of the intervention on health-related quality of life (HRQoL), sleep quality, and mental health conditions parameters. Methods This was a randomized controlled trial of a 12-week, home-based exercise training program conducted between October and December 2020. During this period, social distancing measures were in place in Brazil to contain the spread of COVID-19. Adolescent patients diagnosed with JSLE and JIA participated in the study. Health-related qualitative and quantitative data were collected before and after the follow-up. Results 21 JSLE patients and 30 JIA patients were analyzed. Six themes emerged from patients’ feedback: 1) Suitability of the home-based format; 2) Appropriate trainer supervision, 3) Motivators and facilitators for the program; 4) Barriers to the program; 5) Health benefits; 6) Patients’ suggestions to improve the program. Overall, data indicated that the intervention showed good acceptability and elicited improvements in the perceived HRQoL and fatigue in JIA and JSLE patients during the pandemic. However, further quantitative analyses with validated HRQoL, sleep quality, and mental health conditions instruments did not capture these benefits (p>0.05). Conclusion Our main findings based on in-depth qualitative assessments suggest that a home-based exercise training program was suitable and well-accepted by adolescents with JSLE and JIA during the COVID-19 pandemic. Nonetheless, adherence was not high, particularly among JIA patients, suggesting that facilitators and barriers identified in the current study should be explored to improve the quality of new home-based exercise programs implementation, particularly in a future emerging crisis.

Investigating the role of health information technology in the control and management of Systemic Lupus Erythematosus (SLE): a systematic review

“…Figure 2 shows the most widely used health information technologies used in the control, management, and monitoring of lupus. About 75 percent of the studies used web-based technologies (n = 13) [ 22 , 24 , 25 , 28 , 29 , 32 , 33 , 35 , 37 – 39 , 41 , 42 ] and telephones (n = 5) [ 20 , 26 , 27 , 30 , 31 ] to control and manage lupus. The rest of the studies used mobile-based App (n = 3) [ 21 , 34 , 36 ] and wearable devices (n = 2) [ 23 , 40 ] to control and manage the disease.…”

“…As it is shown in Tables 1 and 2 , most of these technologies were conducted in the United States (n = 18) [ 20 – 37 ]. UK [ 38 , 39 ], Canada [ 40 ], Thailand [ 41 ], and Brazil [ 42 ] were other countries that focused on technologies related to lupus control and management. The United States was the largest producer of web-based technologies (n = 9) [ 22 , 24 , 25 , 28 , 29 , 32 , 33 , 37 , 41 ], telephones (n = 5) [ 20 , 26 , 27 , 30 , 31 ], and mobile-based Apps (n = 3) [ 21 , 34 , 36 ].…”

Psychological Implications to the Therapy of Systemic Lupus Erythematosus

“…Fifty-nine of these articles were sought for retrieval whilst only 35 articles that complied with the inclusion criteria were included. Twenty-six studies focusing on the psychological outcomes of lupus involved 7302 subjects with lupus [ 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 ] while nine interventional studies involved 431 subjects with SLE [ 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 ]. Because of a diverse nature of retrieved investigations and the heterogeneity of data in terms of the type of intervention technique, research procedures, and outcome evaluation measures, a meta-analysis could not be performed.…”

“…The proportion of women in each study ranged from 84–100%. The interventions addressed a plethora of aspects of psychosocial adjustment with the illness, such as: health locus of control [ 45 ], improving positive health behaviors [ 49 , 51 ], medical adherence [ 46 , 49 , 50 , 52 ], patients’ needs for social support [ 49 ], and self-efficacy [ 49 , 51 ]. The interventions employed digital adherence technologies [ 46 , 48 , 51 ], CBT intervention [ 45 ], stationary and social-media-based patient education [ 48 , 49 , 50 , 51 ], focus groups, and support groups with various meeting cadences and duration [ 49 ].…”

Addressing mental health issues in immunocompromised adolescents with chronic diseases during the COVID-19 pandemic

“…There are only a few reports addressing the impacts of the COVID-19 pandemic on mental health in adolescents with chronic immunosuppressive diseases, [ 8 , 10 , 11 ] and the study by Lindoso and colleagues [9] provides the first systematic assessment of this problem. Despite convincing results, there are important considerations when translating these findings into clinical practice.…”