Introduction: Adult patients and caregivers of children with atopic dermatitis experience high physical, mental, and financial burden in Portugal. We outline the experience of atopic dermatitis management and how the current medical care model impacts patient-centered concerns such as financial burden, quality of life, disease burden, and treatment satisfaction.
Methods: We conducted a survey of 419 Portuguese adults and caregivers of children to capture the experience of managing atopic dermatitis in Portugal.
Results: Respondents reported average satisfaction with treatment, with a mean satisfaction rating of 3.15/5.00 (SD = 0.77). Adults reported slightly better control of atopic dermatitis symptoms (mean = 56.6) than pediatric patients (mean = 55.9, caregiver reported). Nearly 34% of adults and 39% of caregivers of children and adolescents indicated that their healthcare providers asked about their priorities at the last medical visit. Additionally, only 40% of adult patients and 32% of caregivers reported that patient training was offered to them. Respondents seeing dermatologists reported higher satisfaction than those seeing other healthcare providers (p = 0.01) but there were no differences in long-term control of symptoms by provider type (p = 0.85) when controlling for severity. Portuguese adult patients scored 0.86/1.00 on the EQ-5D (where 0 = death and 1 = perfect health). Financial concern was high as nearly 80% of patients and caregivers reported using savings, borrowing money, and/or reducing spending to cover atopic dermatitis-related costs.
Conclusion: Portuguese patients with atopic dermatitis and caregivers experience financial burden, lower health-related quality of life, higher disease burden, and treatment satisfaction issues with their current medical care. These factors often deteriorate as the disease's severity increases. Providers, researchers and policymakers should focus on better addressing patient-centered concerns for individuals suffering from atopic dermatitis to improve care and health outcomes.