Atopic Dermatitis: Perspectives and Attitudes of Adult Patients and Affected Child Caregivers Assessed by Focus Group

Alberto Mota

doi:10.29021/spdv.76.4.975

Abstract

Introduction: Important dimensions such as personal experiences, attitudes toward disease, its causes and treatments, are not fully addressed in clinical trials. Focus group (FG) has emerged as an interesting and valuable tool in clinical research complementing this gap. The aim of this qualitative research was to assess in both caregivers and patients dealing with atopic dermatitis (AD) their attitudes, personal experiences and perspectives toward the disease and its topical treatment as well as the impact in quality of life (QoL).Material and Methods: For discussion sessions, 10 caregivers of children and 10 adult patients were recruited. Two sessions of FG took place with 3 main themes discussed: perspectives toward AD, topical treatments and the impact in QoL. All activities were recorded in video and the discussions and notes were then transcribed to a document, followed by transcripts analysis.Results: The best descriptive feelings in the moment of diagnosis where “concern” (30%) and “quality of life” (30%) for caregivers and patients, respectively. The actual “positive” emotion or state of mind toward the disease was “overcoming” for caregivers (21%) and “control” for patients (17%). The main “negative or neutral” emotion was “fear” for caregivers (13%) and “resignation” for patients (18%), but when projecting to their child, “frustration” (19%) was the most mentioned. In relation to topical treatments, the mean global satisfaction of caregivers was high for tacrolimus (8.5/10), except in the item “price”. In the case of patients, corticosteroids received a better score (8.0/10), with exception for “tolerability/adverse effects”. Features like “preventive treatment with reduction of flares” and “free of cortisone” were important for both participants in an “ideal topical medicine” setting. All participants showed high levels of negative impact in their QoL due to AD, with 47% and 64.6% considering scores of “very much” and “a lot” of interference, respectively.Conclusion: Qualitative studies in AD by FG are scarce and to our knowledge this is the first one gathering both adult patients and caregivers. The dimensions yielded by this approach are useful to complement data retrieved from clinical trials and to drive decisions from researchers and health authorities.

Highlights

Evidence-based medicine relies mainly on quantitative assessments of statistical-significant data drawn mostly from clinical trials.[1]
Discussion groups design Two sessions of focus group (FG) took place in Spirituc facilities (Spirituc, - Investigação aplicada, Lda.), in order to offer a relaxed environment with a mean duration of two hours each
In the case of caregivers, along with their own emotions, they were asked to choose the states of mind/emotions they thought were affecting their child

Summary

Introduction

Evidence-based medicine relies mainly on quantitative assessments of statistical-significant data drawn mostly from clinical trials.[1] In general, a high level of objectivity and reproducibility of the results obtained from these studies, if adequately designed, is the rule, in special in terms of efficacy and safety Important dimensions such as personal experiences, from patients and from health care providers and caregivers, attitudes toward disease, its causes and treatments, are not fully addressed in clinical trials and a more “medicine-based evidence” is required.[2] In this setting, focus group (FG) have emerged as an interesting and valuable tool in clinical research, complementing the quantitative studies and other qualitative approaches such as in-depth interviews and case studies.[3] In addition, FG are useful to design intervention programs in the community for health promotion in a specific field.[4] Atopic dermatitis (AD) is the most prevalent inflammatory skin disease in children and has a chronic, relapsing course.[5] there is a trend to disease improvement over time, the patient and their caregivers usually face many years of disease activity, which may extend into adulthood. The perspectives of participants toward AD and the impact of the disease in the QoL of both groups were evaluated

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Conclusion