The evidence- and consensus-based guideline on atopic eczema, published in JEADV on 18 August 2022 (part 1) and 3 September 2022 (part 2) was developed in accordance with the EuroGuiDerm Guideline and Consensus Statement Development Manual. Four consensus conferences were held between December 2020 and July 2021. Twenty-nine experts (including clinicians and patient representatives) from 12 European countries participated. To reflect the most recent evidence on novel systemic medications, an update was published in October 2022. According to the purpose of the Italian Society of Dermatology and STD (SIDEMAST), the Italian Association of Hospital Dermatologists (ADOI) and the Italian Society of Allergological and Environmental Dermatology (SIDAPA) to adapt the EuroGuiDerm guideline on the treatment of atopic eczema into the Italian Healthcare setting, the original update has been supplemented by inserting notes, well highlighted by the original text, to emphasize the laws, rules, procedures and suggestions of the Italian Ministry of Health and regional Health authorities.
SIDeMaST (Società Italiana di Dermatologia Medica, Chirurgica, Estetica e delle Malattie Sessualmente Trasmesse) contributed to the development of the present guideline on the systemic treatment of chronic plaque psoriasis. With the permission of EuroGuiDerm, SIDeMaST adapted the guideline to the Italian healthcare context to supply a reliable and affordable tool to Italian physicians who take care of patients affected by atopic dermatitis. The evidence- and consensus-based guideline on atopic eczema was developed in accordance with the EuroGuiDerm Guideline and Consensus Statement Development Manual. Four consensus conferences were held between December 2020 and July 2021. Twenty-nine experts (including clinicians and patient representatives) from 12 European countries participated. This second part of the guideline includes recommendations and detailed information on basic therapy with emollients and moisturizers, topical anti-inflammatory treatment, antimicrobial and antipruritic treatment and UV phototherapy. Furthermore, this part of the guideline covers techniques for avoiding provocation factors, as well as dietary interventions, immunotherapy, complementary medicine and educational interventions for patients with atopic eczema and deals with occupational and psychodermatological aspects of the disease. It also contains guidance on treatment for pediatric and adolescent patients and pregnant or breastfeeding women, as well as considerations for patients who want to have a child. A chapter on the patient perspective is also provided. The first part of the guideline, published separately, contains recommendations and guidance on systemic treatment with conventional immunosuppressive drugs, biologics and janus kinase (JAK) inhibitors, as well as information on the scope and purpose of the guideline, and a section on guideline methodology.
In June 2019 the BJD published an editorial on patient engagement with the journal.1 In it, an overview was given on different kinds of patient engagement in the realm of medical research and all it entails, from formulating research questions at the beginning to evidence-based practice guidelines at the end. Within that whole process – or chain, if you will – there is a role for patients and for peer-reviewed medical journals. But what could be the role of patients within a medical journal? The title of the editorial was ‘Patient engagement with the BJD: why and how?’ Reading it now, it can be concluded that many of the plans that were laid out have actually been accomplished. After recruitment, selection and interviews, two Patient Associate Editors were appointed in the autumn of 2019. They have become an integral part of the editorial team and are the authors of this editorial. An often-used quote within patient engagement is: ‘We as patients do not want to be on the menu, we want to sit at the table’. Well, that is a fact now: we are sitting at the BJD’s table, so to speak. We participate in editors’ meetings, are consulted by editors on patient-related issues regularly, and were given the opportunity to present an overview of our role and activities at BJD’s Editorial Team Day. But, what has been done? Not long ago, articles in medical journals were only accessible to the medical community. Patients and patient advocates only had access to abstracts in PubMed, if available. A lot has changed for the better, with open-access journals and open-access articles within journals. Yet, not everyone is able to understand these articles. An often-heard complaint from patients in general is: ‘They are just not doing enough research on my disease’. Well, maybe it has been done, but they are not aware of it. These are the reasons why the BJD publishes plain language summaries (PLSs): concise and easy-to-understand summaries of important articles that are accessible to the general public. This way, all patients can learn about the newest research in dermatology in an accessible way. We also feel that by providing patients with this information it will instil hope where there may not have previously been any – hope that in the future their condition will be more effectively managed and maybe even brought into long-term remission. This, in turn, may also improve the mental well-being of patients, something that has been frequently overlooked within dermatology in the past when dealing with incurable long-term conditions. BJD PLSs are published online along with each issue, where a patient may not have discovered the information. The PLSs were downloaded about 30,000 times in 2019. The British Association of Dermatologists (BAD) also has a website for the general public.2 Because we thought this would be a suitable place for patients to seek information about their conditions, BJD’s PLSs can now also be found on the BAD website under ‘resources’ and searched by condition name. It is in the process of being populated with back issues. The workflow of PLSs has been also refined and streamlined. As a result, the BJD author guidelines have also been changed and authors can now submit a PLS at submission rather than being asked for it at acceptance, which can result in delays. Now that PLSs are easier to find and searchable, the next step was to approach patient organizations and make them aware that this resource of trustworthy dermatological research exists. We are in the midst of that process by contacting and informing dermatological patient organizations worldwide, including their national, supranational and global umbrella organizations. So, if things go well, the number of downloads should go up, leading to even more informed patients, which is the actual goal. From the beginning our vision was that the connection between the BJD and patients should be bidirectional. Disseminating PLSs is one aspect; the other is to include patients and their voices in BJD’s content. Therefore, the author guidelines for ‘Perspective’ articles in the correspondence section have been amended. Although it was already in there, more emphasis has been put on encouraging patients and patients’ organizations to write a ‘Perspective’ article. The feature has not been broadcast widely, so as not to ‘open the floodgates’ and then have to disappoint people. Therefore, we have started by inviting reputable patient organizations in our network with a specific request to write a ‘Perspective’ article. It was not difficult to find topics that really need a patient’s perspective in the BJD that is also essential to clinicians. As an example, articles on COVID-19 are all over the place, and that is more than justified. But an alarming drop in dermatological consultations that are not COVID-19-related has been observed, and a dermatological clinic cannot be run the same way with the now-mandatory social distancing. Virtual consultations via telephone or video can be a solution, and are on the rise. From the patients’ view, the question arises if these virtual consultations meet their needs, for example in terms feeling cared for or in shared decision-making. We do not know well enough if there is any difference in outcomes between face-to-face or virtual consultations. Time will tell, research will tell, but we need both sides of the picture. Hopefully this will be reflected in future issues of the BJD. Is there more? Sure. We would like to see patients more involved in research projects, systematic reviews and evidence-based guidelines. Ideally, this involvement should be reflected and reported accordingly in BJD’s articles, preferably in a compulsory and standardized way. But this is beyond our scope. However, why not philosophize and dream about all medical journals requiring a compulsory checklist that could be named the Preferred Reporting Of items for Patient Engagement in Research checklist (acronym: PROPER)? We are well underway as Patient Associate Editors. It was also mentioned in last year’s editorial that Patient Associate Editors should have equal status and similar responsibilities to other associate editors. We can confirm that this has been accomplished, as we have nothing but praise for how we have been fitted in. We not only have that ‘place at the table’, but we have also had the entrée and are now looking forward to the main course, as there is a lot to do and accomplish, together. We would like to thank the staff at the BJD, the British Association of Dermatologists and Wiley-Blackwell for incorporating us into the editorial team. Special thanks go to John Ingram, John Caulfield and, last-but-surely-not-least, the incredible Shehnaz Ahmed for her support and guidance on a daily basis. Bernd WM Arents: Conceptualization (equal); Writing-original draft (equal); Writing-review & editing (equal). James Burton: Conceptualization (equal); Writing-original draft (equal); Writing-review & editing (equal).
Telemedicine, the provision of remote healthcare, has gained prominence, accelerated by the COVID-19 pandemic. It has the potential to replace routine in-person follow-up visits for patients with chronic inflammatory skin conditions. However, it remains unclear whether telemedicine can effectively substitute in-person consultations for this patient group. This systematic review assessed the effectiveness and safety of telemedicine compared with traditional in-person care for chronic inflammatory skin diseases. A comprehensive search in various databases identified 11 articles, including 5 randomized controlled trials (RCTs) and 1 clinical controlled trial (CCT). These studies evaluated telemedicine’s impact on patients with psoriasis and atopic dermatitis, with varying methods like video consultations and digital platforms. The findings tentatively suggest that telemedicine does not seem to be inferior compared with in-person care, particularly in terms of condition severity and quality of life for patients with chronic inflammatory skin diseases. However, these results should be interpreted with caution due to the inherent uncertainties in the evidence. There are indications that telemedicine can offer benefits such as cost-effectiveness, time savings, and reduced travel distances, but it is important to recognize these findings as preliminary, necessitating further validation through more extensive research.
Abstract Background Hand eczema (HE) has a significant impact on patients’ quality of life and work‐related activities. However, little is known about the patients' perspectives on quality of care for HE. Objectives To evaluate the patient perspective of the HE care process in a tertiary referral center. Methods Qualitative, semi‐structured focus groups were carried out, recorded, transcribed, and analysed using an inductive‐deductive thematic approach. Results Fifteen patients participated in four focus groups. Time and attention, together with being listened to and understood by the health care professional, were the most important aspects of care for HE mentioned by participants. Other aspects of care that were regarded as important were that diagnoses, causes and follow‐up of HE were not always clear to the participant; more psychosocial support was needed, and that participants experienced frequent changes in doctors. Information provided by nurses was valuable, but more individualized advice was needed. Conclusions To better meet the needs of patients, more explanation should be given about the causes of HE and the final diagnosis. Besides focusing on the treatment, it is also important to focus on its impact on the patient and options for psychosocial and peer support should be discussed. Furthermore, the beneficial role of the specialized nurse as part of integrated care was emphasized.
Rosacea is a common, chronic skin condition causing flushing, redness, red pimples and pus‐filled spots (pustules) on the face. It affects about 1‐20% of people worldwide. Rosacea can also cause inflammation of the eyes/eyelids (ocular rosacea) and thickening of the skin, especially the nose (rhinophyma). Although the cause of rosacea is unclear, treatments are available for this distressing disease. This review from the Netherlands, U.K. and Canada aimed to find out which treatments are effective for rosacea. The authors included data from 152 studies. For reducing redness, brimonidine and oxymetazoline worked from three up to 12 hours after being applied. For reducing pimples and pustules with topical (applied to the skin) treatments, azelaic acid, ivermectin and metronidazole were effective and safe. Ivermectin was slightly more effective than metronidazole. Minocycline foam also showed a large reduction in pimples and pustules. With oral (taken by mouth) antibiotics, tetracycline, doxycycline 40 mg or minocycline 45 mg reduced the number of pimples and pustules. Doxycycline 40 mg was likely as effective as 100 mg, with fewer side effects like diarrhoea and nausea. Oral minocycline 100 mg was as effective as doxycycline 40 mg. Azithromycin may be as effective as 100 mg doxycycline. Isotretinoin 0.25 mg/kg decreased pimples and pustules by 90%, and increased quality of life and patients’ satisfaction. Isotretinoin 0.3 mg/kg appeared to be slightly more effective than 50‐100 mg doxycycline. However, isotretinoin is known to cause serious birth defects, so pregnancy must be avoided when using it. For treating dilated blood vessels, laser therapy and intense pulsed light therapy were both effective, but these studies had limited data. In ocular rosacea, ciclosporin 0.05% ophthalmic emulsion increased quality of life and improved the amount/quality of tears, and was slightly more effective than oral doxycycline. Omega‐3 fatty acids likely improve dry eyes and tear gland function.
Comparative, real‐life and long‐term evidence on the effectiveness and safety of phototherapy and systemic therapy in moderate‐to‐severe atopic eczema (AE) is limited. Such data must come from well‐designed prospective patient registries. Standardization of data collection is needed for direct comparisons and data pooling. To reach a consensus on how and when to measure the previously defined domain items of the TREatment of ATopic eczema (TREAT) Registry Taskforce core dataset for research registries for paediatric and adult patients with AE. Proposals for the measurement instruments were based on recommendations of the Harmonising Outcome Measures for Eczema (HOME) initiative, the existing AE database of TREATgermany, systematic reviews of the literature and expert opinions. The proposals were discussed at three face‐to‐face consensus meetings, one teleconference and via e‐mail. The frequency of follow‐up visits was determined by an expert survey. A total of 16 experts from seven countries participated in the 'how to measure' consensus process and 12 external experts were consulted. A consensus was reached for all domain items on how they should be measured by assigning measurement instruments. A minimum follow‐up frequency of initially 4 weeks after commencing treatment, then every 3 months while on treatment and every 6 months while off treatment was defined. This core dataset for national AE research registries will aid in the comparability and pooling of data across centres and country borders, and enables international collaboration to assess the long‐term effectiveness and safety of phototherapy and systemic therapy used in patients with AE. What's already known about this topic? Comparable, real‐life and long‐term data on the effectiveness and safety of phototherapy and systemic therapy in patients with atopic eczema (AE) are needed. There is a high diversity of outcomes and instruments used in AE research, which require harmonization to enhance comparability and allow data pooling. What does this study add? Our taskforce has reached international consensus on how and when to measure core domain items for national AE research registries. This core dataset is now available for use by researchers worldwide and will aid in the collection of unified data. What are the clinical implications of this work? The data collected through this core dataset will help to gain better insights into the long‐term effectiveness and safety of phototherapy and systemic therapy in AE and will provide important information for clinical practice. Standardization of such data collection at the national level will also allow direct data comparisons and pooling across country borders (e.g. in the analysis of treatment‐related adverse events that require large patient numbers).
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