Sharma Rajni, Chaudhary Himanshi, Patra Pratap, Sudhakar Murugan, Anjani Gummadi, Jindal Ankur, Pandiarajan Vignesh, Gupta Anju, Suri Deepti
Pediatric Allergy and Immunology Unit, Department of Pediatrics, Advanced Pediatrics Centre, Postgraduate Institute of Medical Education and Research, Chandigarh, India.
J Family Med Prim Care. 2022 Dec;11(12):7920-7925. doi: 10.4103/jfmpc.jfmpc_2112_21. Epub 2023 Jan 17.
To assess distress, insomnia, and psychosocial impact of SARS-CoV-2 outbreak on children with SLE and their caregivers.
Patients with pSLE undergoing treatment in the Department of Pediatrics, PGIMER, Chandigarh, and their caregivers were enrolled. Questionnaires were sent to eligible patients and their parents through email or WhatsApp and telephonic interviews were conducted. Self-designed SLE-COVID-19 stress questionnaire; Peritraumatic Distress Inventory; Insomnia Severity Index, Positive and Negative Affect Schedule were used. Ethical approval was sought from Institutes Ethics Committee (IEC/2020/000583).
Telephonic connection was possible with 80 families (160 participants). Telephonic contact was possible with 80 families (160 participants); off these 61 children with pSLE (78.2%) and 55 caregivers (70.5%) responded to the questionnaire. Among participants, 23% patients, and 21.8% caregivers were severely stressed about SARS-CoV-2 infection; 78.7% patients and 80% caregivers had heard about hydroxychloroquine (HCQ) being used for the treatment of COVID-19; 52.7% caregivers exhibited moderate concern about shortage of HCQ; and 52.5% patients, and 43.6% caregivers were worried about side effects of HCQ. We found that 20 (32.8%) patients and 18 (32.7%) caregivers experienced significant distress. Majority of participants reported sleep disturbances. High positive affect scores were seen in 40 (65.5%) patients and 43 (78.2%) caregivers, low positive affect scores were noted in 21 (34.5%) patients and 12 (21.8%) caregivers.
Patients with pSLE and their caregivers are at risk of psychosocial problems during the COVID-19 pandemic. Psychological interventions can be very helpful.
评估2019冠状病毒病（SARS-CoV-2）疫情对系统性红斑狼疮（SLE）患儿及其照料者的困扰、失眠及心理社会影响。
纳入在昌迪加尔医学教育与研究学院（PGIMER）儿科接受治疗的青少年皮肌炎（pSLE）患者及其照料者。通过电子邮件或WhatsApp向符合条件的患者及其父母发送问卷，并进行电话访谈。使用自行设计的SLE-COVID-19应激问卷、创伤后应激量表、失眠严重程度指数、正负性情绪量表。已获得该机构伦理委员会（IEC/2020/000583）的伦理批准。
与80个家庭（160名参与者）取得了电话联系。与80个家庭（160名参与者）取得了电话联系；其中，61名pSLE患儿（78.2%）和55名照料者（70.5%）回复了问卷。在参与者中，23%的患者和21.8%的照料者对SARS-CoV-2感染感到极度焦虑；78.7%的患者和80%的照料者听说过羟氯喹（HCQ）用于治疗2019冠状病毒病（COVID-19）；52.7%的照料者对HCQ短缺表示中度担忧；52.5%的患者和43.6%的照料者担心HCQ的副作用。我们发现，20名（32.8%）患者和18名（32.7%）照料者经历了严重困扰。大多数参与者报告有睡眠障碍。40名（65.5%）患者和43名（78.2%）照料者的积极情绪得分较高，21名（34.5%）患者和12名（21.8%）照料者的积极情绪得分较低。
在2019冠状病毒病大流行期间，青少年皮肌炎（pSLE）患者及其照料者存在心理社会问题风险。心理干预可能会非常有帮助。
