Global Parents for Eczema Research. California. United States of America.
University of Illinois. Chicago. United States of America.
Acta Med Port. 2024 Oct 1;37(10):706-712. doi: 10.20344/amp.21248.
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.
We conducted a survey of 419 Portuguese adults and caregivers of children to capture the experience of managing atopic dermatitis in Portugal.
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.
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.
在葡萄牙，患有特应性皮炎的成年患者及其照顾者承受着巨大的身体、心理和经济负担。我们概述了特应性皮炎管理的经验，以及当前的医疗保健模式如何影响以患者为中心的关注点，如经济负担、生活质量、疾病负担和治疗满意度。
我们对 419 名葡萄牙成年患者及其照顾者进行了一项调查，以了解他们在葡萄牙管理特应性皮炎的经验。
受访者报告了对治疗的平均满意度，平均满意度评分为 3.15/5.00（标准差=0.77）。成年人报告称，他们的特应性皮炎症状控制情况略好于儿科患者（成年人报告的平均值为 56.6，儿科患者报告的平均值为 55.9，照顾者报告）。近 34%的成年人和 39%的儿童和青少年的照顾者表示，他们的医疗保健提供者在上次就诊时询问了他们的优先事项。此外，只有 40%的成年患者和 32%的照顾者报告说向他们提供了患者培训。与其他医疗保健提供者相比，看皮肤科医生的患者报告的满意度更高（p=0.01），但在控制严重程度后，不同提供者类型对症状的长期控制没有差异（p=0.85）。葡萄牙成年患者在 EQ-5D 上的评分为 0.86/1.00（其中 0 表示死亡，1 表示完美健康）。经济负担很高，因为近 80%的患者和照顾者报告说，他们使用储蓄、借钱和/或减少支出来支付特应性皮炎相关费用。
患有特应性皮炎的葡萄牙患者及其照顾者承受着经济负担、较低的健康相关生活质量、较高的疾病负担和治疗满意度问题，这些问题随着疾病严重程度的增加而恶化。提供者、研究人员和政策制定者应关注更好地满足患有特应性皮炎的个人的以患者为中心的关注点，以改善护理和健康结果。
