P120 Self-reported disease activity was the main determinant of the perceived impact of COVID-19 pandemic on adolescent and young patients with juvenile dermatomyositis (JDM) and juvenile onset systemic lupus erythematosus (JSLE)
Authors: Khatun Ayesha , Wu Wing Han , Peng Junjie , Hennelly Laura , Sloan Melanie , Bosley Michael , Howard Paul , Jury Liz , Ciurtin Coziana 
Published: April 2021

Background/Aims 

The impact of the COVID-19 pandemic on adolescent and young patients with chronic diseases is likely to be multi-factorial, and influenced by various aspects, such as age, sex, education, ethnicity, as well as disease control or personal coping strategies. Adolescents and young adults are at a time in their live when disruption in their education and social life, as well as uncertainty related to professional prospects and long-term disease outcomes are all associated with significant personal concerns. The aim of this survey was to assess the main determinants of COVID-19 associated concern in adolescent and young adults with JSLE and JDM as well as their well-being and resilience.

Methods 

Questionnaires comprising of questions related to patient and disease characteristics, wellbeing, resilience and concern about the COVID-19 pandemic were disseminated through hospital contacts and patient charities social media platforms. Participation was voluntary and implied consent. The preliminary results of this ongoing survey have been analysed using descriptive statistics and linear regression (R).

Results 

The main patient and disease characteristics, self-reported well-being, resilience and perceived concern about the COVID-19 pandemic are presented in comparison in male vs. female patients. Linear regression showed that the strongest determinant of COVID-19 concern was self-reported disease activity (p &lt; 0.0003). The self-reported disease activity was associated with the COVID-19 concern level in both female (P = 0.003) and male patients (p = 0.004) and also with disease duration in males (P = 0.018). The COVID concern was not affected by any other factors such as, employment, education, well-being or resilience.

Conclusion 

The preliminary analysis of our survey showed that patient-reported COVID-19 concern during the pandemic was strongly determined by the self-reported disease activity irrespective of patients’ sex, despite significantly increased concern in the female compared to male patients, and association with disease duration in male patients only. We propose that further strategies for better patient support during the pandemic should focus on their optimal disease control as well as take into consideration the sex-biased patient concerns. P120 Table 1:FemaleMalep-valueNumber389Current age mean (IQR)22.21 (18.25- 25.75)18.89 (14.00-26.00)Age at diagnosis years mean (IQR)13.01 (9.00-15.00)9.333 (7.00-11.00)Disease durationMean (IQR)9.197 (4.000-13.000)9.556 (2.000-13.000)0.4841Ethnicity;WhiteNon-white25 (65.8%)13 (34.2%)7 (77.8%)2 (22.2%)0.4841Location;England (%)Other (%)35 (92.1%)3 (7.9%)9 (100%)0 (0%)0.2578091Well-being(VAS -2 to + 2)mean (IQR)-0.6765 (-2.0000 – 0.0000)-0.4286 (-1.0000 – 0.0000)0.5667Resilience (VAS 1-7)mean (IQR)4.906 (4.000 - 6.000)5.0 (4.5 - 5.5)0.8718Self-reported disease activity (VAS 1-100)mean (IQR)35.32 (15.00- 53.00)18.67 (3.00-25.00)0.06429Self-reported COVID concern (VAS 1-100)mean (IQR)62.92 (50.00-80.00)32.33 (15.00- 40.00)0.01052Still in educationNoYesNot recorded16 (42.1%)18 (47.4%)4 (10.5%)3 (33.3%)4 (44.4%)2 (22.2%)Currently workingNoYesNot recorded24 (63.2%)10 (26.3%)4 (10.5%)5 (55.6%)2 (22.2%)2 (22.2%)

Funding statement: This work was supported by Versus Arthritis (21593)

Disclosure 

A. Khatun: None. W. Wu: None. J. Peng: None. L. Hennelly: None. M. Sloan: None. M. Bosley: None. P. Howard: None. L. Jury: None. C. Ciurtin: None.