Methods to improve quality of life, beyond medicines. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes

Abstract

The pharmaceutical approach to skin disease has been hugely successful, but despite effective drugs being available and used, there are still vast numbers of people who continue to have some level of persisting skin disease and continue to experience quality of life (QoL) impairment. So the question that needs to be answered, while we await further advances in our drug‐based armamentarium, is how can we improve patients’ QoL, beyond drugs? A working group was formed from members of the EADV Task Force on QoL and Patient Oriented Outcomes. Participants were asked to suggest all the ways in which they considered patients’ QoL may be improved beyond medicines. Four groups of management approaches that may improve QoL in dermatology were identified: interventions within the dermatology service (hospitalization, multidisciplinary teams, patch testing and establishing relevant allergens and education), external services (corrective make‐up, climatotherapy and balneotherapy), psychological (psychological intervention, cognitive therapy, hypnosis), lifestyle (lifestyle behavioural changes, religion and spirituality and music). The ultimate aim of therapy is to eradicate a disease in an individual and return the person’s life to normal. But until the day comes when this has been achieved for every skin disease and for every patient there will be a need to support and assist many patients in additional non‐pharmaceutical ways. These ‘adjuvant’ approaches receive too little attention while dermatologists and researchers strive for better pharmacological therapy. The different ways in which patients may benefit have been reviewed in our paper, but the reality is that most have a very poor evidence base. The research challenges that we have to meet are to identify those approaches that might be of value and to provide evidence for their optimal use. In the meantime, clinicians should consider the use of these approaches where QoL remains impaired despite optimal use of standard therapy.

Quality of Life in Hidradenitis Suppurativa: An Update

“…There is a lack of placebo-controlled clinical trials with sufficient participant numbers that assess different treatment methods and a lack of high-quality clinical trials in HS patients where HRQoL instruments have been used as outcome measures. The EADV TFs encouraged the further development, validation and use of other HS-specific, dermatology-specific and generic instruments, but such use should be based on the principles presented by the EADV TF on QoL and Patient Oriented Outcomes [ 15 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 ]. The aim of the present review is to present an update on recent QoL studies in HS.…”

Prospective study on hand dermatitis in nurses and doctors during COVID ‐19 pandemic and its improvement by use of adopted recommendations of the European Academy of Dermatology and Venereology Task Force on Contact Dermatitis

“…Our results showed high prevalence of hand skin problems in nurses and doctors that is consistent with results of other studies on skin complications in health care workers during COVID-19 pandemic. 1,3 To the best of our knowledge it is the first study on hand skin compli- 16 The DLQI of 0-1, corresponding to "no effect on patient's life" according to the DLQI banding descriptions may be considered as a difficult to reach but important treatment goal. 17 QoL assessment in dermatology is a rapidly developing field with a gradual shift from theory to practice 18 with many possibilities for its practical use.…”

“…Despite significant improvement of HRQoL in the group of nurses and doctors that received recommendations, antiseptics and emollients HRQoL in 28.95% of them remained impaired (DLQI score > 1). They should continue to follow preventive recommendations, should be consulted and treated by dermatologist and may also benefit from methods to improve the HRQoL of dermatology patients, beyond medicines presented in the position paper of the EADV Task Force on QoL and PO 16 . The DLQI of 0‐1, corresponding to “no effect on patient's life” according to the DLQI banding descriptions may be considered as a difficult to reach but important treatment goal 17 …”

Quality of life measurement in alopecia areata. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes

“…This present paper is organized by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and Patient Oriented Outcomes, which has previously presented detailed recommendations on principles of HRQoL instrument selection and use in different skin diseases. [8][9][10][11][12][13][14][15][16][17][18][19] Members of the TF were invited to participate. A literature search was performed using the PubMed database, which was searched from 1980 to October 2020 using the keyword combination: 'quality of life, alopecia areata'.…”

“…This present paper is organized by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and Patient Oriented Outcomes, which has previously presented detailed recommendations on principles of HRQoL instrument selection and use in different skin diseases 8–19 . Members of the TF were invited to participate.…”