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.
Objectives
To assess mental health and life conditions in adolescents with autoimmune rheumatic diseases (ARDs) and healthy controls quarantined during COVID-19 pandemic.
Method
A cross-sectional ...study included 155 ARD adolescents and 105 healthy controls. Online survey included self-reported strengths and difficulties questionnaire (SDQ), and a semi-structured questionnaire with demographic data, daily home and school routine, physical activities, and COVID-19 information during the pandemic.
Results
Among patients, 56% had juvenile idiopathic arthritis (JIA), 29% juvenile systemic lupus erythematosus (JSLE), and 15% juvenile dermatomyositis (JDM). No differences were found regarding sex, ethnicity, and current age between ARD patients and controls (
p
> 0.05). Abnormal emotional SDQ (38% vs. 35%,
p
= 0.653) were similar in both groups. Logistic regression analyses in ARD patients demonstrated that female (OR = 2.4; 95%CI 1.0–6.0;
p
= 0.044) was associated with severe emotional SDQ dysfunction, whereas sleep problems were considered as a risk factor for both worse total SDQ (OR = 2.6; 95%CI 1.2–5.5;
p
= 0.009) and emotional SDQ scores (OR = 4.6; 95%CI 2.2–9.7;
p
< 0.001). Comparisons between ARD patients with and without current prednisone use showed higher median scores of peer problems in the first group 3 (0–10) vs. 2 (0–7),
p
= 0.049, whereas similar median and frequencies between JIA, JSLE, and JDM (
p
> 0.05).
Conclusions
Approximately one third of JIA, JSLE, and JDM patients presented abnormal total and emotional scores of SDQ during COVID-19 quarantine. Sleep problems were the main factor associated with emotional difficulties in these ARD adolescents. The knowledge of mental health issues rates in adolescents with ARD supports the development of prevention strategies, like sleep hygiene counseling, as well as the references of the affected patients to specialized mental health services, as necessary.
Key Points
• One third of ARD patients presented mental health issues during COVID-19 quarantine
• Sleep problems were associated with emotional difficulties.
• It is necessary to warn pediatric rheumatologists about the importance of sleep hygiene counseling.
To evaluate physical and mental health indicators in adolescents with preexisting chronic immunocompromised conditions during coronavirus disease 2019 (COVID-19) quarantine.
A cross-sectional study ...included 355 adolescents with chronic conditions and 111 healthy adolescents. An online self-rated survey was used to investigate socio-demographic features, healthcare routine, and the quarantine impact on physical and mental health. The validated self-reported version of the Strengths and Difficulties Questionnaire (SDQ) was also applied.
The median of age 14 (10–18) vs. 15 (10–18) years, p = 0.733 and frequencies of female (61% vs. 60%, p = 0.970) were similar between adolescents with preexisting chronic conditions and healthy adolescents during quarantine of COVID-19 pandemic. The frequencies of abnormal total difficulties score of SDQ were similar in patients and controls (30% vs. 31%, p = 0.775). Logistic regression analysis showed that being female (OR = 1.965; 95% CI = 1.091–3.541, p = 0.024), fear of underlying disease activity/complication (OR = 1.009; 95%CI = 1.001–1.018, p = 0.030) were associated with severe psychosocial dysfunction in adolescents with chronic conditions, whereas school homework (OR = 0.449; 95% CI = 0.206–0.981, p = 0.045) and physical activity (OR = 0.990; 95% CI = 0.981–0.999, p = 0.030) were protective factors. Further analysis of patients with chronic immunocompromised conditions and previous diagnosis of mental disorders (9%) compared with patients without diagnosis showed higher median of total difficulties score (p = 0.001), emotional (p = 0.005), conduct (p = 0.007), peer problems (p = 0.001) and hyperactivity (p = 0.034) in the former group.
Adolescents with preexisting chronic immunocompromised conditions during COVID-19 quarantine were not at higher risk of adverse health indicators. Being female, fear of underlying disease activity/complication, and household members working outside of the home were relevant issues for adolescents with preexisting chronic conditions. This study reinforces the need to establish mental health strategies for teens with chronic conditions, particularly during the pandemic.
Among healthy adolescents, school closures and home confinement were shown to increase unhealthier eating habits and sedentary behavior. It remains unknown to which extent the pandemic has impacted ...the lifestyle of adolescents with chronic conditions. Thus, the aim of this study is to report on the impact of the COVID-19 outbreak on eating habits and sedentary behavior among adolescents with multiple chronic conditions (
= 347) from a tertiary, referral hospital vs. healthy peers.
This observational study was conducted in São Paulo (Brazil) between July and October 2020, period in which a set of social distancing measures to contain the pandemic.
The main findings of this study were that adolescents with chronic conditions and health peers showed important changes in eating habits (e.g., more often cooking and eating in front of television than before quarantine). Also, 86.8% of adolescents with chronic conditions and 91.6% of healthy adolescents reported increasing screen time during pandemic. No major differences were observed between patients and controls.
Adolescents with chronic conditions and healthy peers exposed to pandemic showed substantial changes in lifestyle, stressing the need for specific care to mitigate poor eating habits and excessive sedentary behavior for patients and healthy adolescents.
We assessed PET‐CT myocardial blood flow (MBF) using N‐13 ammonia, brachial flow‐mediated dilation, and cardiopulmonary exercise test in five post‐discarged MIS‐C survivors. None of the patients ...(median age: 9, range: 7‐18 years; 3 females; 2 males) had preexisting pediatric chronic conditions. At the follow‐up visit, two patients exhibited severe perfusion defect developed in the left ventricular cavity, suggesting extensive myocardial ischemia (MBF <2.0) and one patient showed persistent mild pericardial effusion. Others two patients demonstrated endothelial dysfunction. Nevertheless, all patients had lower predicted values in the VO2peak, VO2VAT, OUES, and O2 Pulse (range: 35.2%–64.5%; 15.6%–38.2%; 1.0–1.3 L/min; 4–7 ml/beat), respectively. Our d suggested that previously health MIS‐C patients had impaired MBF, endothelial dysfunction and lower cardiopulmonary capacity at follow‐up analysis. Multidisciplinary further investigations should be conducted to reinforce these findings.
Previously health multisystem inflammatory syndrome in children (MIS‐C) patients showed impaired myocardial flow reserve, endothelial dysfunction, and lower cardiopulmonary capacity after 1.9 months of infection. Our findings reveal novel pathophysiological findings in MIS‐C patients, which advances the knowledge on this newly described condition and may help tailor better treatments for these patients.
Exercise has been suggested to prevent deterioration of health-related quality of life (HRQL) and overall health in pediatric rheumatologic diseases during the COVID-19 pandemic. Herein we describe ...the effects of a 12-week, home-based, exercise program on overall health and quality of life among quarantined patients with juvenile dermatomyositis (JDM).
This prospective, quasi-experimental, mixed methods (qualitative and quantitative) study was conducted between July and December 2020, during the most restricted period of COVID-19 pandemic in Brazil. The home-based exercise program consisted of a 12-week, three-times-a-week, aerobic and strengthening (bodyweight) training program. Qualitative data were systematically evaluated. Strengths and Difficulties Questionnaire (SDQ), Pediatric Quality of Life Inventory (PedsQOL) and Pittsburgh Sleep Quality Index (PSQI) evaluate symptoms of mental health disorder, HRQL, and quality of sleep.
11 patients (out of 27) met the inclusion criteria (91% female; mean ± SD age: 13.5 ± 3.2 years). Adherence to the intervention was 72.6%. Barriers to exercise involved poor internet connectivity, excessive weekly sessions, and other commitments. Even though not statistically significant, Self-report SDQ subscales Total Difficulties Score, Emotional Problems Score, and PedsQOL School Functioning Score improved after intervention (- 2.4; 95%confidence interval CI -5.1; 0.2, p = 0.06; - 1.0; 95%CI -2.2; 0.2, p = 0.09 and; 11.7; 95%CI -2.5; 25.8, p = 0.09, respectively). Remaining SDQ subscales were not altered. Six themes emerged from patients' and parents' comments (qualitative results). Patients engaged in exercise reported other health-related benefits including increased motivation, concentration and strength.
A home-based exercise program was associated with qualitative perceptions of improvements in overall health and HRQL by quarantined adolescents with JDM during COVID-19 pandemic. Lessons from this trial may help developing interventions focused on tackling physical inactivity in JDM.
Abstract Objective: This study aimed to assess physical and mental health, and health-related quality of life (HRQL) parameters in adolescents with physical disabilities enrolled in a sports ...nongovernmental organization (NGO) versus adolescents without disabilities during coronavirus disease 2019 (COVID-19) pandemic. Methods: This cross-sectional study included 30 adolescents with disabilities and 86 adolescents without disabilities who responded to an online questionnaire with sociodemographic data and self-rated healthcare routine information during the COVID-19 quarantine. Validated self-report versions of the Strengths and Difficulties Questionnaire (SDQ), Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0), Pittsburgh Sleep Quality Index (PSQI), and Pediatric Outcome Data Collection Instrument (PODCI) were also applied. Results: The median of emotional 4 (0–10) vs. 5 (0–10), p=0.018 and prosocial 7 (0–10) vs. 9 (3–10), p=0.006 problems was lower in adolescents with disabilities versus adolescents without disabilities. Adolescents with disabilities had significantly lower global function 68 (21–99) vs. 94 (67–100), p<0.001 and higher happiness scores in the PODCI scale 90 (65–100) vs. 80 (0–100), p=0.016 compared to controls. Logistic regression analysis demonstrated that physical activity/week (OR=1.03; 95%CI 1.01–1.05, p=0.002) was higher in adolescents with disabilities compared to adolescents without disabilities. However, housework activities (OR=0.14; 95%CI 0.04–0.43, p=0.001) and screen time ≥3 h/day (OR=0.09; 95%CI 0.02–0.38, p=0.001) were lower in adolescents with disabilities compared to adolescents without disabilities. Conclusion: Adolescents with disabilities attending a sports NGO were not at higher risk of adverse health-related indicators; despite showing reduced physical function, they reported more physical activity, higher happiness, and less screen time compared to adolescents without disabilities during the COVID-19 pandemic.
Resumo Objetivo: Avaliar os parâmetros de saúde física e mental, de qualidade de vida relacionada à saúde (QVRS), em adolescentes com deficiência física matriculados em organização não governamental (ONG) esportiva vs. em adolescentes sem deficiência, durante a pandemia da doença do coronavírus 2019 (COVID-19). Métodos: Este estudo transversal incluiu 30 adolescentes com deficiência e 86 adolescentes sem deficiência que responderam a questionário online com dados sociodemográficos e informações de rotina de saúde autoavaliadas durante a quarentena da COVID-19. Versões validadas de autorrelato do Strengths and Difficulties Questionnaire (SDQ), Pediatric Quality of Life Inventory 4.0 (PedsQL4.0), Pittsburgh Sleep Quality Index (PSQI) e Pediatric Outcome Data Collection Instrument (PODCI) também foram aplicadas. Resultados: A mediana de problemas emocionais 4(0–10) vs. 5(0–10),p=0,018 e pró-social 7(0–10) vs. 9(3–10),p=0,006 foi menor em adolescentes com deficiência vs. adolescentes sem deficiência. Adolescentes com deficiência tiveram função global significantemente inferior 68(21–99) vs. 94(67–100),p <0,001 e pontuações de felicidade mais altas do PODCI 90(65–100) vs. 80(0–100),p=0,016 em comparação com o grupo sem deficiências. A análise de regressão logística demonstrou que a atividade física/semana (odds ratio — OR=1,03; intervalo de confiança — IC95%=1,01–1,05,p=0,002) foi maior nos adolescentes com deficiência. No entanto, atividades domésticas (OR=0,14; IC95%=0,04–0,43,p=0,001) e tempo de tela ≥3 horas/dia (OR=0,09; IC95%=0,02–0,38,p=0,001) foram menores nos adolescentes com deficiência. Conclusões: Os adolescentes com deficiência que frequentam uma organização não governamental (ONG) esportiva não tiveram maior risco de apresentar indicadores adversos à saúde; apesar de apresentarem função física reduzida, relataram mais atividade física, maior felicidade e menos tempo de tela em comparação com adolescentes sem deficiência durante a pandemia da COVID-19.
BackgroundThe SLICC, ACR and LFA embarked on a data- and expert-driven project to develop a revised systemic lupus erythematosus (SLE) organ damage index (SDI). The methodological approach includes 5 ...phases: updating the construct of damage (I), item generation (II), item reduction (III), item weighting and threshold determination (IV), and the assessment of validation and reliability (V). In phase I, a consensus statement was developed to define the construct of damage in SLE1. In the Item Generation phase, we aimed to develop and agree on a candidate list of items that reflect the construct of damage in SLE and are appropriate to be included in a new damage index including consideration of relevant items from adult, paediatric and young adult SLE. In this analysis, we compare the two approaches to initial item generation that were employed in a parallel process, namely a literature review and a Delphi exercise.MethodsItem generation included a literature review and 3-part Delphi exercise. A group of lupus experts conducted a literature review to identify items that reflect the construct of damage in SLE and grouped the items into organ domains. Each domain was reviewed by paediatric rheumatologists.Snow-ball sampling was used among SLICC members, asking them to nominate 3-4 SLE experts considering a range of clinical expertise, equality, diversity and inclusiveness factors, and the global nature of SLE research. The LFA, Lupus UK, Lupus Europe and Lupus Canada were also asked to nominate 4-6 patient/carer representatives to participate in the Delphi exercise. Participants were asked to nominate items that should be included in a revised damage index based on the updated construct definition1 using a free-text option in Delphi exercise.ResultsWe established a group of 146 individuals (mean age 50.6 ranging from 28 to 79 years; 60.3% females; 58.9% white; clinical experience from 1 to 51 years) from 35 countries, broadly representative of the lupus research and patient community. There were 135 medical doctors, 2 allied health professionals and 9 patients. Of 135 medical doctors, 120 were rheumatologists, 7 internists, 5 nephrologists, 2 dermatologists, and 1 immunologist. The response rate after the first round Delphi exercise was 97.9%.All items in the original SDI were nominated in both processes. Item generation yielded approximately 2,600 items. After rationalising for repetition, redundancy, and harmonisation of synonyms, 220 unique items were identified across 14 organ systems. The literature review proposed 4 (1.8%) unique items, 103 (46.8%) unique items were from the Delphi only and 113 (51.4%) items appeared in both exercises (figure 1).ConclusionUsing a combined data-driven and expert/patient-based approach, items and domains that comprise damage in SLE have been expanded. Just over half of all items were nominated by both approaches. However, the Delphi exercise which included a wide and diverse group of contributors, provided a large number of unique items for further consideration. Our data confirms the value of large group exercises early in such a process to maximise the scope of new items to consider for a revised index.ReferenceJohnson, S. R et al. Evaluating the construct of damage in SLE. Arthritis Care Res. 2021.Lay SummaryThe SLICC/ACR Damage Index (SDI) (published in 1996) is widely used in clinical studies and trials to measure the long-term complications that can occur in lupus patients, such as cataracts, fractures, and kidney failure. Higher scores are associated with poorer quality of life, as reported by patients. A number of drawbacks have also been found with the SDI. We need to better understand and measure the impact of these complications from a patient and doctor’s perspective to get a much deeper understanding of how SLE affects people. We used two methods to generate new items to include in an updated SDI. First, we used the medical literature to identify possible complications of lupus. Then, we asked a large group of lupus experts and patients to nominate complications. The process generated approximately 2,600 items. After removing redundant suggestions, 220 unique items were identified. The literature review proposed 4 (1.8%) unique items, 103 (46.8%) unique items were from the large group only and 113 new (51.4%) items appeared in both exercises. Our data shows the value of large group exercises that include patient representatives, to maximise the scope of new items to consider for a revised index.Abstract 605 Figure 1Number of candidate items for the revised organ damage index from literature review and the first round Delphi exercise.
The COVID-19 pandemic impacts on eating habits among adolescents may be more relevant in pediatric patients with immunocompromised chronic diseases. This case-control study conducted between June and ...October 2020 aimed to: (i) describe dietary patterns of adolescents with chronic conditions compared to healthy controls and (ii) determine associations between food consumption, health-related quality of life (HRQL) and sleep quality during the COVID-19 pandemic. Participants (184 immunocompromised and 58 healthy adolescents, aged 14.3 SD 2.5) responded to HRQL and sleep validated instruments (PedsQL and PSQI) and three 24 h food recalls via online software. Adjusted linear and logistic regressions were used to assess differences in dietary patterns and associations between food consumption (according to Nova classification) and HRQL and sleep quality. Adolescents with gastrohepatic, rheumatic, and kidney diseases had an improved dietary pattern vs. their healthy peers, showing greater consumption of unprocessed and minimally processed foods (unstandardized coefficient (
) = 7.35%95%CI 1.59; 13.1;
= 15.10%95%CI 7.00; 23.1; and
= 11.2%95%CI 5.68; 16.8), and lower consumption of ultraprocessed foods (
= -7.53%95%CI-12.90; -2.18;
= -11.4%95%CI-18.90; -3.94;
= -10.8%95%CI-16.00; -5.68). Consumption of culinary ingredients was associated with reduced psychological HRQL in controls (standardized coefficient (
) = -0.2695%CI-0.52; -0.004), and processed food consumption was associated with improved sleep latency in immunocompromised participants (
= 0.1695%CI 0.01; 0.31). These findings suggest diet quality may play a role in HRQL and sleep quality in this population, and may be relevant for clinical practitioners and policy makers when considering the importance of dietary quality in immunocompromised youths.
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