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auans 45 (2019) 1625-1632 Available online at wru.sciencedirect.com ScienceDirect journal homepage: www.clsevier.com/locate/burns Nursing problems in patients with toxicepidermal ®™ necrolysis and Stevens-Johnson syndrome in a Dutch burn centre: A 30-year retrospective study N. Trommel“"", H.W. Hofland””, R.S. van Komen®, J. Dokter“, M.E. van Baar” “Bum Centre, Maasstad Hospital, P.0. Box 9100, 3007 AC Rotterdam, The Netherands ® association of Dutch Burn Centres, P.O. Box 1015, 1940 EA Beverwijk, The Netherlands ARTICLE INFO apsTRAcT ‘ie hstoy Objective: Multiple stadies have been published on tonic epidermal necrolysis (TEN) and ‘Accepted 2July 2019 Stevens-Johnsen syndrome (9). Nusingcare isan important partof the treatment of TEN patients, Unfortunately, limited information on nursing in TEN/SIS patients has been. Published in the current literature. Nursing research is needed to improve the complex: nursing care required for these rare patients. Therefore, the objective was to assess nursing Keywords problems in TEN patients in a burn centre setting over a 30-year period as Methods: The data fr thi study were gathered retrospectively from nursing records cf allpatents| ss ‘with TENS)Sadmited to Burn Centre Rotterdam between January 1587 and December 216, Dutch Nursing problems ‘bur centres were recently accepted as expertise centres for TEN patients. Nursing problems were Nursing diagnosis Classified using the dassifation of nursing problems of the Dutch Nursing Society. Results: A total of 69 patients were admitted with SIS/TEN. Fifty-nine patient Mes were available. The most frequently reported nursing problems (>20% of the patients) were ‘wounds, threatened or disrupted vital functions, dehydration or fuid imbalance, pain, secretion problems and fever. Furthermore, TEN-specific nursing problems were docu: ‘mented, including oral mucosal lesions and ocular problems. The highest number of ‘concomitant nursing problems occurred during the period between days three and 20 after ‘onset ofthe disease and vatied by nursing problem, Conclusions: The most frequently reported mursing problems involved physical functions, ‘especially on days three 1020 after onset of the disease. With this knowledge, we can start nursing interventions eatly in the teatment, address problems at the frst sign and inform ‘patients and their families orrelatives ofthese issues earlyin the disease process. Anext step to improve nursing care for TEN patients is to acquire knowledge on the optimal interventions for nursing problems. (© 2019 Elsevier Ltd and ISBI. All rights reserved Abbreviations: TEN, Toxic epidermal necrolysis; JS, Stevens-Johnsen syndrome; TBSA, Total Body Surface Area; NANDA, North ‘American Nursing Diagnosis Association; ICU, Intensive Care Unit; OPD, Outpatient department; SCORTEN, SCORe of Toxic Epidermal Necrolysis, * Corresponding author. E-mail addresses: TrommelN@maasstadzickenhuis.nl(N. Trommel) HoflandH@maasstadzickenhuis.nl (LW. Hofland), KomenR@mazsstadziekenhuis.nl (RS. van Komen), DokterJ@maasstadziekenhuis.nl J. Dokter), BaarM@mzasstadzickenhuis.nl (Qe. van Baar). btps//doi.org/10 1016) burns 2019.07 008 (0305-4179/6 2019 Elsevier Ld and ISBI, All rights reserved, 1626 auaws 45 (2019) 1625-1633 1. Introduction ‘Toxic epidermal necrolysis (TEN) is a rare disease with a frequency of approximately one or twocases per 1,000,000 peo- ple [1]. The disease starts oneor twodays beforeepidermolysis, ‘with overall malaise, including fever, myalgia and joint pain, similar to that noted with flu. Then, the epidermal ayer of the skin loosens and erosions appear. The patient feels sick and experiences pain [2]. Three different types of the disease exist: Stevens Johnson syndrome (5)5), SIS/TEN overlap and TEN, Epidermal detachment of less than 10% of the body surface area is noted in 5JS, 10-30% of the body surface area exhibits, epidermal detachment in S)S/TEN, and more than 30% of the epidermis is detached in TEN [3]. Patients with TEN mostly develop erosive mucosa lesions with oral, ocular and genital involvementora combination thereof. in addition, respiratory, ‘urethral and gastrointestinal epithelial mucosa necrolysis can, occur, Due to the skin problems and similarities to the treatment for superficial partialthicknese burns, admission to a bum centre where specific nursing care is available is, advised [4.5] ‘Multiple studies have described the importance of early referral of TEN patients to a burn centre. Early transport to a bur centre within a week of symptom onset increases the survival rate, Burn centres differ from non-burn centres in the tweatment and management of TEN patients [2,6]. Strict procedures are in place for barrier precaution, constructional, facilities are available for infection control therapy, and the environmental temperature is regulated; a multi-disciplinary ‘bur care team is available and includes specialized burn care purses who have been trained to care for such eritically ill patients with extensive wounds and other problems related to the disease [7] ‘Multiple studies have been published on TEN and JS. Awide range of problems has been described, Problems are generally similar between these disease types and involve epidermal detachment, wound care, mucosa problems, and ocular and ‘aftermath problems (8). In their narrative review, Lee et al. showed the wide range of long-term complications and sequelae that TEN patients experienced regularly. These long-term complications and sequelae include not only ‘widespread skin and mucous membrane problems but also psychological problems. In addition, they described problems related to participation, including difficulty retumning to work. {or half of the discharged patients and the required modifica tons tothe jobs of the patients who returned to their work [9] ‘Nursing care is an important part ofthe treatment of TEN patients. Unfortunately, the literature on nursing in TEN patients is Limited, and experiences have been shared only in, some case studies [10-13]. Nursing research is needed to improve the complex nursing care required for TEN patients, [Nursing care follows the five phases of the nursing process: assessment, diagnosis, planning, implementation, and evalu ation. In this article, we focus on the first two phases: assessment and diagnosis [14,15] ‘The three Dutch burn centres are expertise centres for TEN disease in the Netherlands. in our opinion, as care providers at a TEN expertise centre, we are responsible for performing ‘nursing research in TEN patients. A first step isto describe the process of nursing care in these patients. Therefore, the main objective ofthis study was to assess nursing problems in TEN, patients in a burn centre setting. The second objective was to Jdentify the onset and duration of nursing problems through- ‘out the period of illness. 2. Patients and methods 2.1. Study design and participants ‘This retrospective cohort study was conducted in all patients with a diagnosis of 5S, S)S/TEN overlap and TEN admitted to the Burn Centre of the Maasstad Hospital, Rotterdam, the Netherlands, over a 20-year period (between January 1987 and, December 2016) Initially, the diagnosis was mainly based on clinical findings. In the last of the three decades, the diagnosis, was based on clinical findings incombination with histological, confirmation by biopsy. 2.2. Data collection Data on patent and treatment characteristice were collected, including age, sex, comorbidities, length of stay in the burn centre, SCORe of Toxic Epidermal Necrolysis (SCORTEN) and the amount of affected skin (the Total Body Surface Area (T3SA) at presentation. The SCORTEN score isa prognostic Scoring system for SJS/TEN that uses seven clinical param- eters, including age above 40 years, malignancy, tachycardia above 120 per min, an inital percentage of epidermal detachment greater than 10%, serum urea greater than 20mmol perlite, serum glucose greater than 14mmol per live, and bicarbonate below 20mmol per lite, to predict the probability of hospital morality. Based on these data, the SCORTEN score was calculated [15], These data were derived froma database of ll admitted patients in the bur centreand from patent record (the mmberofdaysoflineeatreferralto the bum centre andthe TSA maximum amount of denuded skin only). Data on nursing problems were gathered from nursing records. Nursingproblems were classified into the four domains of human functioning, including the physical, mental heath, functional and emetional domains, We wsed the classification of mursing problems ofthe Dutch Nursing Society based on the North American Nursing Diagnosis Associaton (NANDA) [17] (oe Fig, 1. This sa widely used system in our country and is tsed as the classification in the formal description ofthe Dutch Nursing Society. Both nursing problems and the date of recording were collected. Nursing problems were identified by at eas wo researchers (NT and HH ‘Nursing problems were registered from the day of aémis- sion in Burn Centre Rotterdam onwards Ifpaients ded during hospitalization, then the data until the date of death were used, The study was approved by the local board of directors of the hospital nt. 2016-033) 23. Data analysis Descriptive statistics was used to summarize the results of the study. The mean was used to describe continuous variables with, auans 45 (2019) 1625-1622 1627 Physical Mental Endangered or dsturbed vital functions Consciousness disorders (respiration, cieulaton, brain functions) Mood disorders Fever Memory disorders Itching Disturbances in thinking and perceiving suspicion, Wounds delusions, hallucinations) Pain Personality disorders Fatigue Disordersin behaviour (agitation, aggression, claim, Loss of appetite obsession, auto mutilation) [Nauseous, vomiting Anse, panic stress Weiaht gain Addiction Dehydration, fd imbalance oss Secretion problems (micturtion,dlarthoea, Mourning Constipation, excessive perspiration, incontinence) Uncertainty Faling ‘Sleep-est pattern problems Core sot Nursing problems Functional Social Lack of sofmanagement Sexuality avorders Lack of self-retiance ADL Participation problems Sensory limitations Sodalincompetence Disturbed mobitty Loneliness Shortage of knowledge Inetectve coping Problems to given meaning Lack of social networking Lackof mantle care Overloaded carer Fig. 1 ~ Core set patient problems according to the Dutch Nursing Society [17]. “Bold: problems documented in S)S/TEN patients. ‘8 normal distribution, and the median was used for non normally distributed data. Categorical data were presented as, frequencies. Subgroup analysis was performed to examine differences in patient and treatment characteristics between, patients with and without complete data In addition differences in aftercare between diagnoses and treatment periods were tested, For continuous variables, differences were tested with, Student’ t-test for normally distributed variables) or the Mann ‘Whitney test (for non-normal distributed variables), Categor- calvariables were tested using Fisher's exact test 2 categories) the Chi-square test (+2 categories, ie, treatment period) (Tables 1 and 2). The data were analysed using SPSS 22. 3. Results 3.1. Participants Burn Centre Rotterdam admitted 69 patients with SJS/TEN in the 30-year study period. For ten patients, no nursing records were available, and these cases were excluded (ig. 2). To assess differences between patients with and without nursing records, we extracted the characteristics of the different groups, Patients without nursing records were similar to the included patients in 15 of 16 characteristics (Tables 1 and 2) However, they were more frequently admitted in the first decade of the study period, In another 11 cases, the Intensive Care Unit(ICU) data were lost, butthe available ward data were used. All incomplete files were from patients admitted in the first decade of the study (Tables 1 and 2). The highest number of concomitant nursing problems occurred in the period between days three and 0 after onset ofthe disease and varied by nursing problem (Fig. 3). 3.2. Patient and treatment characteristics Most ofthe patients were diagnosed with TEN, and only a few patients had SJS. The patients in our study had a mean age of 525 years (range 7-89 years), and 54.2% were female. A large part of the patients (69.5%) had coexisting morbidities at, ‘admission, such as epilepsy, cancer or HIV. Almost all patients (69.8%) were intially admitted tothe ICU. A mean of 4.4 days of illness was noted between disease onset and admission tothe burn centre, On admission, a mean of 32.6% of the TRSA was detached. The expansion maximum was 45.2% of the TBSA in, the most active phase of the disease. In 69.5% ofthe patients, ‘the mucosa was affected. The mean length of stay was M42 days, The mean SCORTEN score was 30, Half of the Participants ICU and Ward data Excluded n=59 ward data cnly patients 5 n=l n=10 ‘Age, mean (SD) 2388) 587 G34) 78 452(308) Gender, n () Male 27158) 24 (500) 3073) 2,200) Female 32 (542) 24 500) 027 8 (00) Diagnosis, n () 38 953) 81167) 103) 00) Overlap 18,05) 14292) 4064) 200) T!N 32642) 26 542) 6 (45) 8 (00) co-morbidity, n (2) 41 (685) 33 (68) 3027) ein Mucosa affected, n (8) 410685) 33 683) 3027) 2200) Days of lines ‘At admission, mean (SP) 4469) 5508) 2509 4505) TSA detached [Atadmission, mean (SD) 326023) 326 (223) 327 @11) 962 012) Max. TESA detached, mean (SD) 452002) 59613) 225 051) 536 (095) SCORTEN, mean (SO) 300) soa) 230.3) 30(0) "THSA™Total Body Surface Area Missing values: Mucoss (n=12, (Cand ward n=8, Ward only n=2, excluded n=2},TASA at admission (n=6,1C and ward n=1, excluded n=5), SCORTEN (n=23, {Cand ward n 8, excluded ‘ward only (CU & ward data versus ward data only) Participants ICU and) Ward data Excluded 2 ward data only patients n=48 a n=10 ‘Admission yearn 09) 9881999, nan 242) 112009) 101000) 2000-2008 20337) 23479) 00) ) 20.2016 23337) 23473) 00) 00) sepsis, n (3) 31825) 26 542) 5(55) 409) Patients deceased during hospitalisation, n () 273) 19096) 2073) 5 (600) Hospital LOS, mean (SD) 132016 143026) 135 60) 237 (066) cu stay, n (8) 53 (38) 22675) 11100) 10,100) ‘urn ward, n (4) 40580) 266542) 8027) 6 (60) Aftercare, outpatient department, n Ce) Yes a 2 4 o No, deceased 2 9 3 5 No 2 2 ° ° Unknown 9 ° 4 5 Tcl = intensive Care Unit, LOS length of stay patients (52.2%) developed septicaemia. In total, 73% diedin 3.4. ICU ‘hospital (Fables 1 and 2) 3.3. General nursing problems ‘Analyses of the59 records showed thatonly 16ofthe41 general patient problems were described in more than 20% of the patients (Fable 3). Ten well-known nursing problems were not described at all. The most frequently documented problems, ‘were wounds, problems with vital functions, dehydration and ‘uid imbalance, pain, secretion problems and fever. Purther more, nursing problems were intermittently reported by purses, and problems that persisted for a few days were reported. For example, mucosa loss was only occasionally described on subsequent days in the nursing report. IntheICU, themostcommon documented problems wereinthe physical domain. in addition to wounds (100%), problems in, vital functions (84.3%) were frequently reported, followed by dehydration and fuid imbalance (74.5%), pain (70.6%) and fever, (70.6%). Secretion problems (60.8%) and fatigue (43.1%) were also documented. In the mental health domain, consciousness disorders (51.0%) and anxiety or panic (27.5%) were described The remaining 12 patient problems in this domain were reported on a limited scale. In the functional domain, sleep: rest pattem problems (33.3%) were recorded. A lack of self reliance (27.5%) and disturbed mobility (25.5%) were also noted {nthe social part, none of the seven general problems, such as, participation problems or loneliness, were described (Table 3), auans 45 (2019) 1625-1622 1629 Patients admitted during study period n=69 + sisn=8 + TENn=40 cohort cU and ward data nedB + Overlap SiS/TEN n=20 Includedin retrospective patients Exelusion:n=10 No nursing records Ward data Only ned Fig. 2 Flowchart describing patient inclusion. Fig. 2 Nursing problems by onset and duration. 35. Burn ward n the ward, problems in three domains were also described In the physical domain, the same problems were reported as those in the ICU. Moreover, additional problems were documented, including loss of appetite (694%), itching (46.9%) and nausea or vomiting (43.8%). In the mental health, domain, anxiety or panic (28.1%) was documented. The other “M4 problems, such as mood disorders, stress, lose, uncertainty ora shortage of knowledge, were not reported regularly. In the functional domain, problems similar to those in the ICU were doseribed.as wellas a lack self-management (34.4%). Similar to the ICU period, no problems in the social part of human, functioning were noted. Specific problems included oral ‘mucosa and eye problems as wells flaky skin (25.0%) (Table 3) 3.6. Outpatient department (OPD) and psychosocial aftercare {A substantial portion of surviving patients (21/33 patients, 63.6%) received aftercare post discharge. Half of the patients, with S)S or SJS/TEN overlap received aftercare. Most TEN patients received aftercare (80%), However, the differences werenotsignificant. The frequency of aftercare seemed tovary, over time, but no significant differences were observed. In the first decade, a substantial number of patients did not have a 1630 auaws 45 (2019) 1625-1633 ee icun=53 Ward n=32 Outpatient department n=15 Physica ‘wounds (100%) ‘wounds (906%) Wounds (46,7) Vital Functions (8.2%) Pain 75%) Itching 20%) Dehydration, fid imbalance (745%) Secretion problems (71.9%) Pain 70,6) Loss of appetite 69.4%) Fever (05%) Fatigue (9.4) Secretion problems (60.8%) Heehing (46.9%) Fatigue (3,1) Nauseous, Vomiting (438%) Dehydration, id imbalance (344%) Fever (311%) Vital Functions (28.1%) Mental: Consciousness disorders (51.0%) Anxiety, panic (275) Funeional Sleep-rest patter problems (23.3%) Lack of self-reliance (27.5%) Disturbed mobility (255%) Lack ofsetfeliance (68%) Sleep-rest patter problems (68.5%) Disturbed mobility (625%) Lack of se management (4:4) SISITEN specif: (ral mucosa release (549%) ye problems (7,1) Flaky skin (25%) (Oral mucosa release (625%) Bye problems (406%) Pigmentation difference (667%) ye problems (10%) Flaky skin (267) * Selection of problems documented in 220% of patients record. However, patients with a nursing record received aftercare (n=5)-In the second decade, only 3/8 (33.3%) received aftercare, and 13/19 patients received aftercare in the last, decade (68.4%) (ig. 4). In this period after discharge, only some problems were documented, and these problems were mainly related to the physical domain. The most frequently docu- ‘mented problems were small wounds (46.7%), itching (20.0%), pigmentation differences (46.7%) ocular problems (40.0%) and, sis 70 60 50 aK 3 2 u SIS-TEN m Aftercare flaky skin (26.7%). No reports on mental health, functional or social problems were described (Table 3). 3.7. Disease-specifc patient problems On assessment ofthe disease-specific problems, eye problems, were prominent in every phase of the disease. During hospitalization, oral mucosa release was also a problem, TEN Total No aftercare 4~ Aftercare based on SIS/TEN type. auans 45 (2019) 1631 which was observed in approximately two-thirds of the patients (69.5%) (Table 3) Eye problems (52.5%) were reported in more than half of patients, Oedema (169%) and food retention (16.9%) were often reported in the period before stabilization. Our study showed that hypothermia was also a problem (119%). after re-epithelilization, flaky skin or xerosis (18.6%), skin rash (5.1%) and hypo- or hyperpigmenta- tion (11.9%) were often documented. Nail loosening (5%), genital problems (5.1%) such as constrictions, and swallowing problems (6.8%) were described (Table 4). 4. Discussion ‘The main aim ofthis study was to assess nursing problems in, ‘TEN patients in Burn Centre Rotterdam over a 30-year period. The vast majority of the nursing problems involved the physical domain of human functioning. A few problems were escribed in the mental health domain, and some problems in, the functional domain were documented. Minimal social domain problems were noted. The secondary objective was to identify the onset and duration of nursing problems. Most, nursing problems were reported from days three to 20 after onset of the disease. Only a selection of general nursing problems as described by Schuurmans et al, in the general, nursing literature was documented in TEN and SJS patients [17]. TEN disease-specific problems were similar to those described in the medical literature [7] Information on nursing problems in TEN-SJS patients is limited, impeding comparison with relevant nursing iterature. However, the medical literature described comparable general, problems and complications, particularly in patients with extensive epidermal loss. These problems include severe pain, hypothermia, probleme with swallowing (dysphagia), drooling, ‘malnutrition, diarthoea, oliguria, haematuria, dehydration, invasive infections, sepsis and multiorgan failure, as well as, problems with vital functions and TEN-specific complications, such as oral, ocular, genital and intemal mucosa problems, 1,78}. Thisis the frst study to providean overview of recorded nnursingproblems in S)S/TEN patients, With this knowledge, we can develop optimal interventions to address nursing prob: lems. Our paper represents a valuable contribution to the Jmowledge on nursing care for TEN patients, ic patient proble Disease specific patient problems’ ‘Oral mucosa release ye problems Flaky skin edema Food retention Hypothermia 9 Pigmentation diferences ng Onycholyss (nail loosening) as Swallowing problems 6a (Genital problems sa Skin ash sa ‘Seen in at last ten patient ‘Weesystematically examined the provision of aftercare and the documented problems. Although the frequency of after- care varied over time, two of three patients were seen in our outpatient department after discharge in the last decade. A. potential reason why not all patients were followed up is that, some patients return to the referral hospital after overcoming their skin problems to receive treatment for their initial disease. However, evaluating the post-treatment experiences, of patients is essential to provide relevant information and, patient education, Lecet al. recently developed an assessment too for chronic sequelae after TEN for evaluation in the follow-up period after TEN episode [9]. This 30-item tool assesses eight domains, including general, psychiatric, skin, eye, mouth, respiratory, ‘urogenital and gastrointestinal problems [9}. In our opinion, systematic outpatient monitoring using such an instrument would support our patients and would add to ourexpertiseas.a specialized centre for TEN patients. Lee et al. suggested conducting a large prospective study to broaden our insights, into the extensiveness of complications and sequelae after surviving TEN [9]. Such information can help us optimize our care both in the acute phase and post discharge. Recently, the Dutch burn centres started @ project to ‘measure outcomes in bum centre patients, including TEN patients; these outcome data will be used to develop aftercare strategies to support patient-centred care and shared deci sion-making After assessment and diagnosis of TEN patients, the next step is to address nursing interventions. Traditionally, burn centres play a central ole in the care for these patients. Even, for our centre, which is appointed as an expertise centre, TEN, is a rare disease. Recently, Lerma and colleagues conducted a survey on nursing care in TEN patients in specialized units and, ‘burn unite in Spain and abroad. They showed variety nursing care for TEN patients in the 19 participating burn units, or specialized units. Based on their comparison, they suggest improvements in ocular and genital eare, They concluded that ‘a consensus on nursing care guidelines is needed to help reduce mortality and morbidity in TEN [18}, Therefore, gaining and sharing knowledge to determine the optimal intervention, strategy are even more important. (Our study identified some clinical implications. Expertise centres aim to improve the quality of care, However, more nursing research and education are needed to optimize knowledge among all nurses in burn centres or specialized, centres, First, based on our analysis, a checklist including the most common nursing problems can be developed. This checklist can be used to improve the care and the quality of documentation in the acute phase. The list generated by Lee et al. is available for documentation during aftercare [9]. Second, education regarding the specific needs of these patients should be provided on a regular basis. An example of such education is to add a paragraph describing the expected problems after SJS/TEN in the discharge letter to the referring physician, as Creamer et al. suggested in their guidelines [4], Third, each burn centre should ideally have a disease management nurse for SJS/TEN to guarantee contin ous attention. Fourth, every patient with S)S/TEN should have at least one follow-up visit with an aftercare nurse/burn, specialist to receive structural aftercare as needed. 1632 auaws 45 (2019) 1625-1633 5. Limitations ur study has a few limitations. Our patients represent a selection of more extensively injured patients because they hhad been transferred to a burn centre for specialized care. In, addition, data were incomplete for some patients, especially in, the frst years ofthe study before the introduction of electronic patient files. However, the nature and timingof their problems are similar to the problems that we documented in more recent years. Thus, this factor doesnot influence the validity of our study as indicated by the comparable length of stay and percentage of denuded skin in patients with and without documentation. Next, we assessed the SCORTEN score on the first day of admission, which is usually approximately four days after disease onset [8]. Recommendations for the best day to determine the SCORTEN vary between days 1 and 5 of ‘admission. Measuring the SCORTEN scoreon days 3and Sand, using the highest risk score have been suggested [19-21]. We used the classification of nursing problems of the Dutch, ‘Nursing Society based on the NANDA. This classification provided a good framework for the classification of problems, in the domains of the system, Some issues provoked discussion, such as the classification of problems related to ‘anxiety and panic versus uncertainty; however, these issues, ‘were all resolved. ‘Our data collection on nursing problems was based on patient files. Frequently, nursing problems are intermittently reported. In addition, only 16 ofthe 41 main nursing problems, ‘were described in more than 20% ofthe patients, and 11 items, ineluding weight loss, mood disorders and memory disorders, were not reported at all. Although we must realize that realistically, not all patients will experience all nursing problems, we must also realize that a focus on pain and aftercare was not an issue when the first patients were reviewed 30 years ago. Awareness of these problems has only increased in recent years [3] In seriously ll patients, one would expect that more nursing problems would be apparent, such as, ‘mental health problems, including mood disorders, stress, loss, uncertainty, shortage of knowledge, and ineffective coping. One remarkable finding is that social problems, such ‘8 participation problems or loneliness, are only occasionally, documented, especially given the response of patients to their newly disfigured appearance. Whether patients do not experience these problems, whether nurses do not notice these problems, or whether these problems are not sufficiently important for nurses to record remains unclear, We could not answer these questions in this study. A future prospective study with systematicscreeningof potential problems for each, patient may clarify this issue, ‘Conclusion ‘This is the firet study to provide an overview of recorded ‘nursing problemsin TEN and SJS patients, Themost frequently reported nursing problems were in the physical domain, ceepecially on days three to 20 fter onset ofthe disease. With this knowledge, we can initiate nursing interventions early in, treatment, address problems at the first signs, and inform, patients and their families or representatives early in the process. A next step toimprove nursingcare for TEN patients, toacquire knowledge on the optimalinterventions for nursing problems, (0) Harr, French LE, Toxic epidermal necrolysis and Stevens Johnson syndrome. Orphanet ) Rare Dis 2010;1:38. [2] Palmieri TL, Greenhalgh D, Saffle J, Spence R, Peck M, Jeng, etal A multicenter review of toxic epidermal necrolysis, treatedin USbum centers at theendof thetwentieth century.) Burm Care Res 2002:2:87-96 [2] Bastuji-Garin, Rzany B, Stern RS, Shear NH, NaldiL, Roujeau). Clinical classification of cares of toxic epidermal necralysis, Stevens Johnson syndrome, and erythema multiforme, Arch Dermatol 1995;192-6, Creamer D, Walsh 5, DriewulskiP, Exton L, Lee H, Dart, eta UK guidelines for the management of StevensJahnson syndromeltaxie epidermal necrolysis in adults 2016. Br} Dermatol 2016;6)1194-227 Baccara LM, Sakharpe A, Miller A, Amani H. The first reported case of ureteral perforation in a patient with severe toxic epidermal necrolysis syndrome, Burn Care Res 2014;4:e265-8 {61 Oplatek A, Brown K, Sen 8, Haler2 M, Supple K, Gamelli RI. Long-term follow-up of patients treated for toxic epidermal necrolysis.) Burn Care Res 2006;1:26-33 {71 Cartotto R. Burn center care of patients with Stevens Johnson, syndrome and toxic epidermal necrolysis. Clin Plast Surg 20173358395 {8] Ocni, ViiesC, Rocleveld ¥, Dokter J, Hop MI, Baar M. Epidemiology and costs of patients with toxic epidermal necrolysis: 27-year retrospective study.) Eur Acad Dermatol Venereol 2015;12:24450. [9] Lee H, Walsh 5, Creamer D. Long term complications of, Stevens-Johnson syndrome/Toxic epidermal necrolysis: the spectrum of chronie problems in patients who survive an episode of SJS/TEN necessitates multi-dsciplinary follow up. Br Dermatol 2017. [ao] Secaynska B, Nowak I, Sega A, Kozka M, Wodkowski M, Krolikowski W, etal. Supportive therapy fora patient with toxic epidermal necrolysis undergoing plasmapheresis. Crit Care Nurse 2013;4:26:38. [11] Cooper KL. Drug reaction, skin cae, skin loss. Crit Care Nurse 20124525, [12] xu1, Zhu, Yu), DengM, ZhuX.Nursingcareofaboy seriously, infected with Steven Johnson syndrome after treatment with azithromycin: a case report and literature review. Medicine 201851209112, [03] Mccarthy KD, Donovan RM. Management ofa patient with toxic epidermal necrolysis using silicone transfer foam. dressings and a secondary absorbent dressing, ) Wound Ostomy Continence Nurs 2016365041, [14] Ackloy 8}, tadwvig GB. Nursing diagnosis handbook-e-book: an evidence based guide to planning care, Elsevier Health Sciences; 2010 [15] Doenges ME, Moorhouse MP, Murr AC. Nurse's pocket guide: diagnoses, prioritized interventions, and rationales FA Davis. 2016. [16] Fouchard N, Bertocchi M, Roujeau J, RevuzJ, Wolkenstein P, Bastuji-Garin S, SCORTEN: severity-of illness score for toxic epidermal necrolysis.) Invest Dermatol 2000;2-149-52. [27] Schuurmans m, Lambregts J Projectgroep V, Grotendorst A, Deel 3: Beroepsprofel verpleegkundige. Leen van de toekomst. Verpleegkundigen & verzorgenden; 2012. p. 107-56 2020, tl | auans 45 (2019) 1625-1623 [15] Lerma V, Macias M, Toro R, Moscoso A, Alonso V, Hernandez, etal. Care in patients with epidermal necrolysis in burn units ‘A nursing perspective. Burns 2018 {19} Guegan 5, Bastji-Garin Ss, Posrepezynske-Guigné , Roujent), Revie]. Performance ofthe SCORTEN during the fist five days of hospitalization to predict the prognosis of epidermal necrolysis. J Invest Dermatol 2006;2:272-6, {20} Sekula, Liss V, Davidoviei 8, Dunant A, Roujent), KardaunS, etal Evaluation of SCORTEN on a cohort of patients with 1633 ‘Stevens Johnson syndrome and toxic epidermal necrolysis Included in the RegiSCAR study. )Burn Care Res 2011;2:237-45, [at] Bansal, Garg VK, Sardana K, Sarkar RA clinicotherapeutic ‘analysis of Stevens Johnson syndrome and toxic epidermal necrolysis with an emphasis on the predictive value and accuracy of SCORe of Toxic Epidermal Necrolysis. nt} Dermatol 2015;1:618-26.

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