The complexity of the care pathway for a patient with moderate to severe atopic dermatitis seeking a new treatment: Data from a qualitative anthropological study

Abstract

Abstract Background A considerable number of patients with moderate to severe atopic dermatitis (AD) are undertreated and have inadequate control of their symptoms leading to a hight patient dissatisfaction during their care. The VECUDA study, was conducted by anthropologists in cooperation with dermatologists, aimed to better understand the complexity of the care pathway and the physician‐patient relationship by questioning patients with moderate to severe AD. Objectives The aim was to identify patient's needs and to propose concrete ways of improving the doctor‐patient relationship by focusing on the narrative of their affects. Co‐designed easy‐to‐use tools were proposed by these patients. Methods The exploratory qualitative study involved 24 patients with moderate‐to‐severe AD. The study was conducted in two stages: a co‐design phase with 4 patients, and a deepening phase with all patients (24), supported by a multidisciplinary scientific committee. During group interviews, conducted using creativity tools, patients' stories related to their experiences of the disease and its management were collected. Results The VECUDA study, conducted by anthropologists in collaboration with dermatologists and focusing on the experiences of these patients and their journey, described mechanisms of dissatisfaction related to therapeutic management from the point of view of patients with moderate to severe atopic dermatitis. Factors that could generate dissatisfaction included the complexity of the care pathway. During this exploratory study emerged an unexpected patient figure, who had a “feeling of a being chosen” in access to a new treatment, the first biologic in the treatment of AD. We are interested here in the experience of the patient's care pathway. Conclusions The VECUDA study confirms the value of considering patients' perspective as a lever for improving the doctor‐patient relationship. The overall conclusion is based on the observation of a gap between patient expectations and treatment decisions made by some HCPs, which may lead to unsatisfactory scenarios. Analysing these data opens up a promising research avenue, showing that patients not only confer a therapeutic function to their care pathway, but also a symbolic value. The description of the complexity of the care pathway can be compared to a true “initiatory journey”. The symbolic value analysis given by patients to their care pathway when they are seeking a new treatment is an innovative approach that deserves to be further explored through qualitative and quantitative study.

Keywords

• anthropology
• atopic dermatitis
• patient participation
• patient therapeutic education
• therapeutic dissatisfaction