ABSTRACT
Purpose: Atopic dermatitis (AD) is a chronic, relapsing and remitting inflammatory skin disease characterized by intense itch. The disease burden includes physical limitations, psychosocial discomfort, and a reduced quality of life (HRQoL). This study presents the results of a parent-reported survey on the psychosocial impact of AD on Italian pre-adolescent children (6-11 years old), with a specific focus on bullying, self-isolation, absenteeism, and presenteeism. Methods: An online questionnaire was sent to 3067 random recipients and 160 matched the inclusion criteria for age, self-reported AD diagnosis, localizations (according to ISAAC), and disease severity (POEM ≥8). 100 children, with comparable ages, not matching the inclusion criteria for AD, were recruited as a control group. Results: Children with AD and their caregivers had a significantly lower quality of sleep (QoS) compared to the control group. The presence of AD was directly responsible for many restless nights, both in children and caregivers (58.9 and 55.4 respectively). Children with AD and their parents also experienced significantly more daytime drowsiness (43.6 and 54.6 days, respectively). Children with AD were more frequently victims of bullying at school (20.0% vs 9.0%; p≤0.05) or in other social environments (16.9% vs 3.0%; p≤0.05). AD caused 17.7 days of absenteeism and 20.1 days of presenteeism per student over the previous 12 months, accounting for 37.8 days of study impairment overall. Severe/very severe AD had a significantly greater impact on presenteeism than moderate AD (25.1 vs 17.5 days; p≤0.05). Presenteeism, which was more pronounced among bullied students, was positively correlated with absenteeism only in the AD cohort. Conclusion: AD has a detrimental impact on the HRQoL of pediatric patients, causing stigmatization and social isolation. Functional distress was also reported by caregivers. Our study might inform the public and policymakers about the disease burden of AD at a young age.
ABSTRACT
BACKGROUND AND OBJECTIVES: Coronavirus disease 2019 (COVID-19) disrupted medical care across health care settings for older patients with advanced CKD. Understanding how shared decision making for kidney treatment decisions was influenced by the uncertainty of an evolving pandemic can provide insights for supporting shared decision making through the current and future public health crises. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We performed thematic and narrative analyses of semistructured interviews with patients (CKD stages 4 and 5, age 70+), care partners, and clinicians from Boston, Portland (Maine), San Diego, and Chicago from August to December 2020. RESULTS: We interviewed 76 participants (39 patients, 17 care partners, and 20 clinicians). Among patient participants, 13 (33%) patients identified as Black, and seven (18%) had initiated dialysis. Four themes with corresponding subthemes emerged related to treatment decision making and the COVID-19 pandemic: (1) adapting to changed educational and patient engagement practices (patient barriers to care and new opportunities for telemedicine); (2) reconceptualizing vulnerability (clinician awareness of illness severity increased and limited discussions of patient COVID-19 vulnerability); (3) embracing home-based dialysis but not conservative management (openness to home-based modalities and limited discussion of conservative management and advanced care planning); and (4) satisfaction and safety with treatment decisions despite conditions of uncertainty. CONCLUSIONS: Although clinicians perceived greater vulnerability among older patients CKD and more readily encouraged home-based modalities during the COVID-19 pandemic, their discussions of vulnerability, advance care planning, and conservative management remained limited, suggesting areas for improvement. Clinicians reported burnout caused by the pandemic, increased time demands, and workforce limitations, whereas patients remained satisfied with their treatment choices despite uncertainty. CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER: Decision Aid for Renal Therapy (DART), NCT03522740.