Department of Dermatology, Erasmus MC University Medical Center, Dr. Molewaterplein 40, 3015 GD, Rotterdam, The Netherlands.
Department of Dermatology, Maasstad Hospital, Rotterdam, The Netherlands.
Arch Dermatol Res. 2023 Jan;315(1):75-83. doi: 10.1007/s00403-021-02321-z. Epub 2022 Feb 2.
To optimally tailor atopic dermatitis (AD) care to patients' needs, especially considering the many emerging therapeutic options, insight into patients' needs and preferences regarding AD care is needed. To explore patients' needs and preferences regarding AD care, a qualitative study consisting of three focus groups with a total of 20 adult AD patients was conducted. All sessions were transcribed verbatim and inductively analyzed using several phases of coding to create an overview of patients' needs and preferences. AD patients emphasized the need for a patient-tailored approach in all identified aspects of AD care. With regard to consultations, patients stressed the need for a personal approach and increased recognition of the disease impact, which should mainly be determined by patients. With regard to the organization of AD care, the need for psychosocial and medical supportive care as well as quick access to health-care providers during disease flares was emphasized. Within the decision-making process, patients indicated that the provided information, the role of the patient and physician, whether or not treatment goals should be set, and decisive factors for indication and feasibility of novel therapies should be patient dependent. AD care should be patient tailored with increased attention for the psychosocial burden, as well as better access to health care during disease flares. To provide patient-tailored care, the personal situation, needs, and preferences of the patient should be taken into account in the therapeutic decision-making process, with respect for the autonomy of the patient.
为了使特应性皮炎(AD)的护理能够最大程度地满足患者的需求,特别是考虑到许多新兴的治疗选择,我们需要了解患者对 AD 护理的需求和偏好。为了探讨患者对 AD 护理的需求和偏好,我们进行了一项由三个焦点小组组成的定性研究,共有 20 名成年 AD 患者参加。所有会议都进行了逐字记录,并使用多个编码阶段进行归纳分析,以创建患者需求和偏好的概述。AD 患者强调需要在 AD 护理的所有确定方面采取个体化的方法。在咨询方面,患者强调需要个性化的方法,并提高对疾病影响的认识,这主要应由患者来确定。在 AD 护理的组织方面,需要提供心理社会和医疗支持性护理,并在疾病发作时能够快速获得医疗服务提供者的帮助。在决策过程中,患者表示,应根据患者的情况提供信息,确定患者和医生的角色,是否应设定治疗目标,以及新疗法的适应证和可行性的决定因素。AD 护理应根据患者的需求进行个体化定制,同时更加关注患者的心理社会负担,并在疾病发作时更好地获得医疗服务。为了提供个体化的护理,在治疗决策过程中应考虑患者的个人情况、需求和偏好,尊重患者的自主权。