BackgroundLong-term sequelae are frequent and often disabling after epidermal necrolysis (Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN)). However, consensus on the modalities of management of these sequelae is lacking.ObjectivesWe conducted an international multicentric DELPHI exercise to establish a multidisciplinary expert consensus to standardize recommendations regarding management of SJS/TEN sequelae.MethodsParticipants were sent a survey via the online tool "Survey Monkey" consisting of 54 statements organized into 8 topics: general recommendations, professionals involved, skin, oral mucosa and teeth, eyes, genital area, mental health, and allergy workup. Participants evaluated the level of appropriateness of each statement on a scale of 1 (extremely inappropriate) to 9 (extremely appropriate). Results were analyzed according to the RAND/UCLA Appropriateness Method.ResultsFifty-two healthcare professionals participated. After the first round, a consensus was obtained for 100% of 54 initially proposed statements (disagreement index < 1). Among them, 50 statements were agreed upon as 'appropriate'; four statements were considered 'uncertain', and ultimately finally discarded.ConclusionsOur DELPHI-based expert consensus should help guide physicians in conducting a prolonged multidisciplinary follow-up of sequelae in SJS-TEN.
Background The existing evidence demonstrates that survivors of SJS/TEN have reported long-lasting psychological effects of their condition. Burns patients experience similar psychological effects. It is important to look at ways to help allay the psychological complications of SJS/TEN. As there is an absence of evidence on SJS/TEN psychotherapeutic interventions, it was judged to be beneficial to determine the evidence underpinning psychotherapeutic interventions used with burns patients. Aims and objectives The aim of this systematic integrative review was to synthesize the evidence relating to psychotherapeutic interventions used with adult burns patients and patients with SJS/TEN. Method The systematic review was guided by Whittemore and Knafl’s integrative review process and the PRISMA guidelines. Nine databases were searched for English and French language papers published January 2008 to January 2021. The protocol for the review was registered with PROSPERO. Results Following a screening process, 17 studies were included in the review. Two themes were identified using content analysis, (i) Empirically supported psychotherapeutic treatments, (ii) Alternative psychotherapeutic treatments. This review revealed no evidence on specific psychotherapeutic interventions for patients with SJS/TEN. Some of the interventions used with burns patients, viz. relaxation therapy, hypnosis and cognitive behavioral therapy showed some significant benefits. However, the evidence for burns patients is mainly focused on pain and pain anxiety as outcomes. Conclusion Following further research, some of the interventions deployed in burns patients may be applicable to SJS/TEN patients, particularly stress reduction techniques. In addition, the caring behaviours such as compassion, respect, and getting to know the patient as a person are important components to psychological care.
Abstract Background Despite the psychosocial challenges of living with psoriasis many patients may not be able to access appropriate services to manage these challenges. Mobile health interventions may be helpful as a means to support patients in managing the impact of their condition. Objective To conduct a preliminary examination of the feasibility and acceptability of a bespoke psoriasis‐specific digital therapeutic solution (hereafter termed Allay), and to provide initial data on psychological changes pre‐post. Methods Phase one proof of concept pre‐post study. Eligible patients were provided with Allay on their smartphone and assessed at baseline and at 12 weeks on a range of indices of well‐being. Participants experiences on usability were collected by telephone interview at 4 weeks, 8 and 12 weeks. Results Out of 66 participants recruited, 59 persisted in using Allay after the familiarisation phase, and 34 participants completed the 12 weeks programme. Participants showed a statistically significant improvement between induction and the end of the 12 weeks programme on Quality of life, Resilience, Perceptions of ‘Overall impact’ of psoriasis, and ‘Emotional impact’. There was a significant change over the course of using Allay for symptoms of depression but not anxiety. While there was an interaction effect of changes in severity of psoriasis symptoms over the course of the study for dermatology‐specific measures, there was no interaction between such changes in psoriasis symptoms and changes in depression, resilience or beliefs in emotional impact. Conclusions Study results suggest that the use of Allay as an adjunct to medical management of psoriasis may help patients improve resilience, mood, beliefs about their condition and enhance their quality of life. Given that this is a phase one proof of concept study, and our rates of attrition further research is necessary to examine comparative effectiveness and stability of these findings.
Clinical and Experimental DermatologyEarly View Correspondence ‘It has given me my life back’: a qualitative study exploring the lived experience of patients with chronic spontaneous urticaria on omalizumab Emma Porter, Corresponding Author Emma Porter emma.mi.porter@gmail.com orcid.org/0000-0002-5532-5799 Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorEmma Tierney, Emma Tierney orcid.org/0000-0003-4872-8466 Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorBerbie Byrne, Berbie Byrne orcid.org/0000-0002-4834-6225 Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorSarah Basheer-O'Dwyer, Sarah Basheer-O'Dwyer Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorAnsam Kanaan, Ansam Kanaan Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorBart Ramsay, Bart Ramsay Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorSinéad Field, Sinéad Field Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this author Emma Porter, Corresponding Author Emma Porter emma.mi.porter@gmail.com orcid.org/0000-0002-5532-5799 Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorEmma Tierney, Emma Tierney orcid.org/0000-0003-4872-8466 Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorBerbie Byrne, Berbie Byrne orcid.org/0000-0002-4834-6225 Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorSarah Basheer-O'Dwyer, Sarah Basheer-O'Dwyer Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorAnsam Kanaan, Ansam Kanaan Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorBart Ramsay, Bart Ramsay Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorSinéad Field, Sinéad Field Charles Centre for Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this author First published: 01 July 2022 https://doi.org/10.1111/ced.15321 Acknowledgement: we thank the patients who so generously shared their perspectives and descriptions of their experience of this condition, and of the effect on their quality of life upon clinical improvement. Conflict of interest: the authors declare that they have no conflict of interest. Funding: none. Ethics statement. Ethics approval not applicable. Patients provided informed consent for publication of their case details and images. Data availability: data are available on request from the corresponding author. Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat No abstract is available for this article. Early ViewOnline Version of Record before inclusion in an issue RelatedInformation
Melanoma is the fifth most common invasive cancer in Ireland, and incidence is increasing. Metastatic melanoma has been associated with poor overall survival historically. New systemic anti-cancer treatment (SACT) options for advanced melanoma have emerged in the last decade, and outcomes are improving. The aim of our study was to assess the incidence and clinicopathological features of metastatic melanoma in our centre, and subsequent treatment with SACT. We analysed retrospectively patients with metastatic melanoma in the Mid-West of Ireland, over a 6-year period (2014–2019). In 6 years, a total of 620 patients were diagnosed with melanoma, 28 (5%) had metastatic or unresectable disease at diagnosis. Mean age at primary diagnosis was 64.5 years (range 24–90 years) and 20 (71%) were male. Median Breslow depth was 4.3 mm (mean 5.5 mm, SD ± 4.4 mm). Thirteen patients (46%) had metastases at initial presentation. Fifteen (53%) received systemic treatment in the regional cancer centre. Of 13 who did not have systemic treatment, 8 had radiological and clinical surveillance, 3 declined further treatment or surveillance and 2 were lost to follow-up. Eleven patients died from the disease with median overall survival of 1.5 years (SD ± 1.3 years). Patients with metastatic melanoma commonly had metastases at the time of first presentation. Just over half of patients with metastatic melanoma received SACT. Early detection of melanoma is key. Further research on factors involved in late presentation, and those precluding systemic treatment, may contribute to improved outcomes in advanced melanoma.
DEAR EDITOR, We read with interest the study by Pathmarajah et al. on the treatment of nodular prurigo (NP) and applaud the team’s emphasis on ‘treatments that manage the skin and the mind concurrently’. This is a sentiment echoed within our dermatology service. We have demonstrated improvements in patients’ symptoms, quality of life (QOL) and mental health rating scores with a 6-week experiential course in awareness meditation delivered within our department. Following our course, QOL scores improved in 56% of participants with no change in medical therapies. Linear analogue scores for skin conditions reduced in 87% of participants, particularly those whose primary symptom was itch. Pre-course clinically significant anxiety, which was present in 45% and 75% of participants as defined by Hospital Anxiety and Depression Scale and Generalised Anxiety Disorder Assessment seven-item scale, respectively, reduced to 10% and 25%, respectively. Clinically significant depression, which was less commonly present, also reduced in frequency. We too have the good fortune of access to a clinical psychologist and a consultant with training in psychodermatology. Mindfulness has been shown to be beneficial in the management of chronic skin conditions. However, limited studies have been performed using structured meditation in dermatology. Other distressing long-term conditions, such as tinnitus, have been successfully treated with meditation, where sound can be recruited as a support for practice. This highlights how focusing on the symptom of concern can diminish its intrusive effect on the patient’s life. Rather than ‘fixing’ the tinnitus, the meditation helps patients to live alongside it. Similarly, meditation practice that utilizes itch as an anchor for practice may benefit those with NP. Only time will tell what effect the pandemic will have on dermatology in the future. Psychological presentations in medicine have risen. Yet, multidisciplinary psychodermatology teams are available in less than a quarter of dermatology services across the UK. This challenge will be further compounded by increased waiting lists due to the impact of service disruption. The World Health Organization has developed a set of new materials on the public mental health and support for aspects of COVID-19 recognizing the impact. Should dermatology create something similar for our patients, particularly those with conditions having a strong psychological component, such as nodular prurigo? We recognize that meditation is not for everyone or indeed intended as monotherapy, but rather we see it as an adjunctive therapy requiring initial specific resources that may provide benefit to a subgroup of participants. Pathmarajah et al. highlight the distress in their patients, the variety of treatments required to manage symptoms, and how challenging it is to induce remission. Coupled with the paucity of psychological supports available, we may be forced to develop and deliver new ways to reach those most in need. Meditation classes specifically designed for skin conditions may be one way to help our patients live alongside their symptoms. Virtual delivery of such courses may be an option for the future.
© BMJ Publishing Group Limited 2021. No commercial reuse. See rights and permissions. Published by BMJ. DESCRIPTION A 5monthold boy was brought to the emergency department in June by his mother, with a 1day history of a progressive erythematous rash on his face, chest and hands with associated blistering (figure 1). The child was systemically well with no medical history. Detailed history revealed that a day before admission, he had been feeding himself mashed carrots and parsnips while sitting outside in the sunshine wearing only a nappy. As he was a ‘messy’ eater and it was very sunny, he subsequently had his bath outside. His parents first noticed the rash on his right hand the next morning. It progressed during the day to his left hand, face and midchest. By evening, he had developed blisters on his right hand. On examination, he had a well demarcated, erythematous rash with erosions distributed periorally, centrally on the chest and upper abdomen with small irregular patches on his thighs and shoulders. On his right hand, there were large tense bullae and areas of desquamation (figure 1). The rash was associated with perioral erythema and peripheral streaks in a bizarre configuration consistent with a linear drip pattern (figure 2). There was sparing of his posterior trunk, mucus membranes, palms and soles. Phytophotodermatitis was diagnosed based on the history of outdoor eating in sunshine and the streaky appearance of the rash in a distribution where psoralen containing food came into contact with his skin. The patient responded to treatment with topical betamethasone 0.025% to his chest and limbs, and hydrocortisone 1% to his face. The rash resolved with mild residual hyperpigmentation (figure 2). Phytophotodermatitis presents with erythema and bullae in an eccentric linear streaky configuration on sunexposed skin reflecting contact with the psoralen source. 2 It is an important diagnosis as it can masquerade as abuse. Rash characteristics can range from erythema, vesicles or bullae, often healing with hyperpigmentation. 4 The eruption
Clinical scenario A 65-year-old man presented with a 12-h history of deteriorating rash. Two weeks previously he had completed a course of neoadjuvant chemotherapy for ductal carcinoma of the breast. On examination there were bullae, widespread atypical targetoid lesions and 15% epidermal detachment. There was no mucosal involvement on presentation, but subsequently it did evolve. Skin biopsy showed subepidermal blistering with epidermal necrosis. This confirmed our clinical diagnosis of overlap Stevens-Johnson syndrome (SJS)/toxic epidermal necrolysis (TEN). On transfer to intensive care he was anxious and fearful. Management question What are the psychological impacts of SJS/TEN on this man's life? Background SJS and TEN have devastating outcomes for those affected. Objectives To conduct a Critically Appraised Topic to (i) analyse existing research related to the psychological impact of SJS and TEN and (ii) apply the results to the clinical scenario. Methods Seven electronic databases were searched for publications focusing on the psychological impact of SJS/TEN on adults over 18 years of age. Results Six studies met the inclusion criteria. Healthcare practitioners' (HCPs') lack of information around the disorder was highlighted. Patients experienced undue stress and fear. Some patients had symptoms aligned to post-traumatic stress disorder (PTSD), anxiety and depression. Discussion and recommendation The evidence suggests that SJS and TEN impact psychologically on patients' lives. Education of HCPs, to address their lack of awareness and information on SJS/TEN, should facilitate their capacity to provide information and support to patients, thereby reducing patient anxiety. On discharge, a follow-up appointment with relevant HCPs to reduce the possibility of PTSD occurring should be considered.
Journal of the European Academy of Dermatology and VenereologyVolume 35, Issue 3 p. e232-e234 Letter to the EditorOpen Access Patients', family members' and healthcare practitioners' experiences of Stevens–Johnson syndrome and toxic epidermal necrolysis: a qualitative descriptive study using emotional touchpoints P. O'Reilly, Corresponding Author P. O'Reilly Pauline.OReilly@ul.ie orcid.org/0000-0002-4956-4670 Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland Health Research Institute, University of Limerick, Limerick, Ireland Health Implementation Science and Technology (HIST) Research Cluster, University of Limerick, Limerick, Ireland Correspondence: P. O'Reilly. E-mail: Pauline.OReilly@ul.ieSearch for more papers by this authorB. Whelan, B. Whelan Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland Health Research Institute, University of Limerick, Limerick, IrelandSearch for more papers by this authorB. Ramsay, B. Ramsay Charles Centre for Dermatology, University Hospital Limerick, ULHG, Limerick, IrelandSearch for more papers by this authorC. Kennedy, C. Kennedy Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland School of Nursing and Midwifery, Robert Gordon University, Aberdeen, UKSearch for more papers by this authorP. Meskell, P. Meskell Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland Health Research Institute, University of Limerick, Limerick, IrelandSearch for more papers by this authorA. Coffey, A. Coffey Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland Health Research Institute, University of Limerick, Limerick, Ireland Health Implementation Science and Technology (HIST) Research Cluster, University of Limerick, Limerick, IrelandSearch for more papers by this authorD.M. Wilson, D.M. Wilson Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland Faculty of Nursing, University of Alberta, Edmonton, AB, CanadaSearch for more papers by this authorD.G. Fortune, D.G. Fortune Health Research Institute, University of Limerick, Limerick, Ireland Department of Psychology, University of Limerick, Limerick, IrelandSearch for more papers by this authorS. Ryan, S. Ryan Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland Charles Centre for Dermatology, University Hospital Limerick, ULHG, Limerick, IrelandSearch for more papers by this author P. O'Reilly, Corresponding Author P. O'Reilly Pauline.OReilly@ul.ie orcid.org/0000-0002-4956-4670 Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland Health Research Institute, University of Limerick, Limerick, Ireland Health Implementation Science and Technology (HIST) Research Cluster, University of Limerick, Limerick, Ireland Correspondence: P. O'Reilly. E-mail: Pauline.OReilly@ul.ieSearch for more papers by this authorB. Whelan, B. Whelan Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland Health Research Institute, University of Limerick, Limerick, IrelandSearch for more papers by this authorB. Ramsay, B. Ramsay Charles Centre for Dermatology, University Hospital Limerick, ULHG, Limerick, IrelandSearch for more papers by this authorC. Kennedy, C. Kennedy Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland School of Nursing and Midwifery, Robert Gordon University, Aberdeen, UKSearch for more papers by this authorP. Meskell, P. Meskell Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland Health Research Institute, University of Limerick, Limerick, IrelandSearch for more papers by this authorA. Coffey, A. Coffey Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland Health Research Institute, University of Limerick, Limerick, Ireland Health Implementation Science and Technology (HIST) Research Cluster, University of Limerick, Limerick, IrelandSearch for more papers by this authorD.M. Wilson, D.M. Wilson Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland Faculty of Nursing, University of Alberta, Edmonton, AB, CanadaSearch for more papers by this authorD.G. Fortune, D.G. Fortune Health Research Institute, University of Limerick, Limerick, Ireland Department of Psychology, University of Limerick, Limerick, IrelandSearch for more papers by this authorS. Ryan, S. Ryan Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland Charles Centre for Dermatology, University Hospital Limerick, ULHG, Limerick, IrelandSearch for more papers by this author First published: 25 September 2020 https://doi.org/10.1111/jdv.16958AboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat Editor Stevens–Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are devastating conditions resulting from a severe immune-mediated mucocutaneous reaction which normally occurs as a result of medication.1 In the acute phase, the patient presents with a febrile illness, followed by skin and mucous membrane necrosis and detachment.2 The patient can quickly become critically ill and is treated as a medical emergency. There may be long-lasting psychological effects on patients and their significant others.3 However, there is a dearth of research on the experiences of patients with SJS/TEN, those close to them and healthcare practitioners (HCPs) providing care. This study explored key stakeholder experiences of living with, or caring for, patients with SJS/TEN via a qualitative descriptive design,4 using emotional touchpoint interviews. A touchpoint is a moment when an individual interacts in some way with the health service and an experience is created.5 A purposive sample of patients (n = 2) who had been diagnosed with SJS/TEN, family members of two other patients (n = 2) and HCPs (n = 8) who reflected on their experiences of caring for a number of patients with SJS/TEN, were included in the study. Participants were presented with a range of emotion words and were asked how they felt and their perception of how the patient felt (in the case of family members and HCPs) at different stages of the illness journey, for example 'at the beginning', 'in hospital' and 'going home'. Additional questions were asked to expand on their responses. Interview transcripts were analysed using thematic analysis.6 Three themes with two sub-themes were constructed (Table 1). The initial presentation of SJS/TEN symptoms was a frightening and traumatic experience for patients and their close family members. Patients feared for their lives. For HCPs, preservation of life was a priority and concerns were expressed about the importance of ensuring that the patient received optimum care in the best clinical environment, with input from the multi-disciplinary team. Meaningful communication within a caring environment provided patients and their families with hope and reassurance. Caring behaviours, such as compassion, dignity, respect, and HCPs 'just being there' for the patient were important for patient recovery. Patients who survived SJS/TEN, experienced mixed emotions when going home from hospital. While they were relieved, as they were alive and well enough to leave hospital, they feared what may lie ahead. After discharge, their mental health and quality of life were affected, and they feared taking any medication. Table 1. Themes, sub-themes, description and illustrative quotes Themes Sub-themes Description Illustrative quotes The profound impact of SJS/TEN Confused, worried powerless – the mixed emotions of patients and families Strong words were used by all participants to outline the emotional and physical impact on patients' lives. One doctor acknowledged that it is difficult to understand the extent of the trauma that these patients have experienced. 'Physically in pain and traumatized. He was disoriented and overwhelmed, he didn't know what was happening and he was very frightened' (Family Member 1) The challenges experienced by HCPs In dermatology, SJS/TEN is one of the most serious conditions that the team will deal with. Many HCPs may have never seen or cared for a patient with SJS/TEN. Some participants spoke about feeling vulnerable. Even with experience, it is a condition that gives rise to feelings of anxiousness in HCPs. 'It can be overwhelming because, while I'm quite comfortable in dealing with skin loss, the patient can also be systemically very unwell…It can be stressful because you have to instigate care quite quickly… and you've to get a team involved like ophthalmology, ICU…' (Nurse 1) The care that matters Immediacy of recognition – a pathway of care Patients with SJS/TEN deteriorate quickly; they can go from sitting up and talking to becoming critically ill. The priority of care, at the beginning, is to keep the patient alive. HCPs expressed concern that they would make the best case in convincing others that the patient required admission to the ICU – not all HCPs appreciated the rapid deterioration of patients with SJS/TEN. An MDT approach to care was crucial as the skin is not the only organ that is affected. 'They're used to admitting someone into the ICU from a ward but we were saying that he [patient] was still able to sit and talk but we knew in a matter of hours he was going to get further involvement and needed that critical care setting' (Doctor 3) Important caring behaviours It was important to have a 'liaison' person to communicate with from both an informational and emotional perspective. It was essential that staff were confident, calm and well prepared in delivering information and letting the patient know that they had dealt with similar situations before – to give patients hope. It was important to recognize that losing the body's protective layer of skin increased the patient's vulnerability, both physically and psychologically. 'The dermatology staff said it so that you could understand, it wasn't technical. They knew what they were on about, this is their forte' (Patient 1) Surviving and living with the aftermath Going home Going home was 'overwhelming' for some patients as they were leaving a secure environment and they were frightened of getting SJS/TEN again. One patient referred to going home as 'daunting' and scary'. Patients might not always be prepared for what lay ahead, in that they could experience profound exhaustion and it could take time to get back to normal. 'I think just the vulnerability, the going home and wondering if this happens again, will I go back to where I was and nobody can tell you that it's not going to happen again' (Nurse 4) Reality hits After some time at home, reality hit. A family member spoke about their relative's anxiety regarding the fear of getting SJS/TEN again. Patients may have been on a lifesaving medication and they were often anxious going on a different medication regime. One patient spoke emphatically about the great sense of loss that he experienced after getting SJS/TEN, missing out on education and always playing catch up with study. He described effects on his relationships and experiencing social anxiety. 'I didn't realise the effect it would have on every aspect, not just my appearance, or my skin, I think the mental health side of things is important, it has such a big impact on your life, it's hard to cope, for years…' (Patient 2) HCP, healthcare practitioner; ICU, intensive care unit; MDT, multi-disciplinary team; SJS, Stevens–Johnson syndrome; TEN, toxic epidermal necrolysis. Healthcare practitioners in our study spoke about the importance of advocating on behalf of patients to ensure that they were admitted to the ICU. Valeyrie-Allanore et al.7 highlighted that an ICU referral of patients with severe cutaneous adverse reactions, including SJS/TEN, contributes to improved patient survival and reduces potential sequelae. Referring to the need for the long-term follow-up of survivors, Lee and Creamer8 encourage the inclusion of psychological assessment in the outpatient follow-up care pathway. They pose the question on whether psychological interventions during the acute phase can preclude the occurrence of psychological problems following discharge.8 Adding to the current body of knowledge, these findings provide an understanding of how SJS/TEN affects key stakeholders and informs recommendations to improve patient outcomes (Table 2). Limitations to the study included the use of one clinical site and a small number of patient participants. There are difficulties in researching rare conditions, but Walsh et al.9 advise that this should not deter researchers and HCPs to engage in follow-up discussions with patients to find out more about the psychological consequences of SJS/TEN. Given the psychological impact on patients' lives, there is a need to prioritize research in this area.10 Table 2. Research summary and recommendations What is already known about this topic? For survivors of SJS/TEN, there may be long-lasting psychological effects on patients and their significant others There is a dearth of research on patients' and other key stakeholders' experiences of SJS/TEN What does this study add? Preservation of life is the priority for HCPs, and time is of the essence in diagnosing and referring the patient to an intensive care unit. Meaningful communication within a caring environment provides patients and their families with hope and reassurance. Patients' mental health and quality of life may be affected in the long term, and they can fear taking medication. Recommendations to improve patient outcomes Caring behaviours such as compassion, dignity, respect and HCPs 'just being there' for the patient are important for patient recovery. Keeping patients informed at a level that they understand helps to allay fears and distress. It is important that all doctors and nurses be made aware of the signs, symptoms and the care needs of patients with SJS/TEN, through continuing education and training programmes. More research is required to address the psychological impact and care needs of the patient in the acute and follow-up phases of the illness Conflicts of interest None declared. Funding sources This research was funded by the Health Research Institute, University of Limerick, Limerick, Ireland. Ethical approval Ethical approval was obtained from University Hospital Limerick Ethics Committee and University of Limerick. References 1Creamer D, Walsh SA, Dziewulski P et al. U.K. guidelines for the management of Stevens-Johnson syndrome/toxic epidermal necrolysis in adults 2016. Br J Dermatol 2016; 174: 1194– 1227. 2Kohanim S, Palioura S, Saeed HN et al. Stevens-Johnson syndrome/toxic epidermal necrolysis–a comprehensive review and guide to therapy. I. Systemic disease. Ocul Surf 2016; 14: 2– 19. 3O'Reilly P, Kennedy C, Meskell P et al. The psychological impact of Stevens-Johnson syndrome and toxic epidermal necrolysis on patients' lives: a Critically Appraised Topic. Br J Dermatol 2020; 183: 452– 461. 4Thorne S, Kirkham SR, O'Flynn-Magee K. The analytic challenge in interpretive description. Int J Qual Methods 2004; 3: 1– 11. 5Gage M, Kolari P. Making emotional connections through participatory design [WWW document]. URL http://www.boxesandarrows.com/view/making_emotional_connections_through_participatory_design (last accessed: 9 June 2020). 6Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77– 101. 7Valeyrie-Allanore L, Ingen-Housz-Oro S, Chosidow O, Wolkenstein P. French referral center management of Stevens-Johnson syndrome/toxic epidermal necrolysis. Dermatologica Sinica 2013; 31: 191– 195. 8Lee HY, Creamer D. Stevens-Johnson syndrome/toxic epidermal necrolysis: a chronic condition? Br J Dermatol 2020; 182: 826– 827. 9Walsh S, Lew T, Lee HY. Psychological sequelae of toxic epidermal necrolysis: further insights. Br J Dermatol 2016; 175: 241. 10Lee HY, Walsh SA, Creamer D. Long-term complications of Stevens-Johnson syndrome/toxic epidermal necrolysis (SJS/TEN): the spectrum of chronic problems in patients who survive an episode of SJS/TEN necessitates multidisciplinary follow-up. Br J Dermatol 2017; 177: 924– 935. Volume35, Issue3March 2021Pages e232-e234 ReferencesRelatedInformation
Psoriasis often first presents in young adulthood, with the average age of diagnosis in women being 28 years, thus in the prime reproductive years. In addition, approximately 50% of pregnancies worldwide are unplanned. Although biologic therapies have revolutionized the treatment of moderate-to-severe psoriasis, there are no controlled studies of biologics in pregnant women. The increasing use of these agents in women of childbearing age highlights the need to further assess their safety during pregnancy. Postmarketing experience regarding the safety of these drugs is accumulating and being published, with largely reassuring results. We present our real-world experience of 17 pregnancies occurring in women on treatment with biologic agents for dermatological conditions to further add to the body of knowledge.
Secukinumab is a novel anti-interleukin-17A agent that has achieved a 75% decrease from baseline in Psoriasis Area and Severity Index (PASI 75) in 77–81% of patients treated in clinical trials Langley et al. (N Engl J Med 371:326–338, 2014). There is limited data on the use of secukinumab outside of clinical trials. We provide real-world data on the efficacy and safety of secukinumab in patients with severe psoriasis attending an outpatient dermatology service. In our retrospective review, we demonstrate (PASI 75) a response rate of 47% in patients previously treated with multiple systemic and biologics. Our efficacy is comparable to that seen in the Signature study who examined similar populations. Response was maintained at follow-up of almost 1 year with acceptable safety data. Patients with psoriatic arthritis were more likely to remain on secukinumab than those without at last clinic follow-up.
This is a picture (fig 1) of flagellate dermatitis. The patient was a 50 year old nurse who presented to the emergency department with a two day history of a florid, erythematous, linear …
Clinical and Experimental DermatologyVolume 46, Issue 3 p. 580-582 Correspondence Paradoxical psoriasis caused by tumour necrosis factor inhibitor therapy J. M. E. Boggs, Corresponding Author jmeboggs1@gmail.com orcid.org/0000-0002-7177-9619 Charles Centre Department of Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorB. Ramsay, Charles Centre Department of Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorM. Lynch, orcid.org/0000-0002-1460-7490 Charles Centre Department of Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this author J. M. E. Boggs, Corresponding Author jmeboggs1@gmail.com orcid.org/0000-0002-7177-9619 Charles Centre Department of Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorB. Ramsay, Charles Centre Department of Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this authorM. Lynch, orcid.org/0000-0002-1460-7490 Charles Centre Department of Dermatology, University Hospital Limerick, Limerick, IrelandSearch for more papers by this author First published: 05 November 2020 https://doi.org/10.1111/ced.14500Citations: 1 Conflict of interest: ML has been in receipt of an unrestricted research grant from Merck & Co. and acted as an advisory board member for Novartis. The other authors declare that they have no conflicts of interest. Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onEmailFacebookTwitterLinked InRedditWechat No abstract is available for this article.Citing Literature Volume46, Issue3April 2021Pages 580-582 RelatedInformation
Psoriasis is a common disorder that can occur at any age, but the majority occurs before 45 years. We are increasingly seeing women of childbearing age in our systemic medication clinics. Recent BAD guidelines on biologics address issues pertinent to treatment of women during pregnancy1 but there is no reference to preconception advice on Measles Mumps Rubella (MMR) vaccination.