Toxic epidermal necrolysis (TEN) is a rare but very impressive disease, especially in children. “It’s sharp and fast. It is very exciting for these people “, says the specialist nurse José Duipmans.” Also for the family, “adds Professor Barbara Horváth.” Someone gets seriously ill in front of his eyes. There is a lot of hurry and panic “. Therefore, rapid recognition and referral of these patients is essential. This also applies to proper nursing technique, especially wound care.
The UMCG is a center of excellence for boiling diseases. “We have a lot of experience connecting people with extensive skin peeling,” Duipmans says. “This is partly why we are well suited to adequately treat patients with TEN and to provide supportive care while in hospital.” Horváth agrees that supportive assistance is extremely important.
Walk with the IC registration
TEN is a rare condition in which large parts (> 30%) of the skin and mucous membranes break off. The incidence is about 1 or 2 cases per million people per year. The main trigger is drugs. Before epidermolysis, the patient has flu-like symptoms for 1 to 2 days, such as general malaise, fever, body aches and joint pains. Then the epidermis dies, and the epidermal layer of the skin and mucous membranes loosens and erosions appear. The patient feels very sick and experiences a lot of pain.1 Eating, drinking, lying down, swallowing is no longer possible.
The diagnosis of TEN is confirmed with an emergency skin biopsy using frozen sections. These patients should be admitted immediately, preferably to an intensive care unit (ICU) or a burn center. All aspects of burn treatment must be considered, such as wound care, tube feeding, fluid and electrolyte balance, and infection control (see box).2
Experiences from Rotterdam1
Nursing is an important part of the treatment of TEN patients. Unfortunately, there is little information available in the current literature on the care of these patients. In a retrospective study, published in 2019, data was collected from medical records of all patients with TEN (> 30% detachment), Stevens-Johnson syndrome (SJS, Twenty percent of the patients were injured, life-threatening or impaired, dehydration, fluid imbalance, pain, secretion problems, and fever.
In addition, specific nursing problems for TEN, including oral mucosal lesions and eye problems, have been documented. The highest number of concurrent nursing problems occurred between days 3 and 20 after disease onset and varied by nursing problem.
With this knowledge we can initiate nursing interventions in the early stages of treatment, address problems at the earliest sign, and inform patients and their families about these problems early in the disease process. A next step in improving nursing care for TEN patients is to implement knowledge of optimal interventions for nursing problems.
The acute course requires rapid recognition
Due to the severe and acute course of TEN, rapid recognition is required. “We aim to have a diagnosis within 1 hour, with frozen sections,” says Horváth. “A pathologist is needed for that analysis, who can examine the sections at night. This is well organized in our region; any hospital can perform emergency diagnostics here. Sometimes the pathologist misdiagnoses TEN (false positive result) for fear of neglecting this disease. We connect it to each other, then we learn from each other. You always try to think together with your colleagues, for example to look for a different diagnosis if there is no TEN.
To act quickly and effectively, it is extremely important to be well prepared. “Everyone is ready to respond to the emergency room (ED), says Horváth about the working method at the UMCG.” We try to properly organize the transport of these patients. Preferably there is a consultation with one of our specialist bladder nurses. before transport. The pathologist, the internist and the Martini Hospital know this. “
“Once the diagnosis of TEN has been made and the patient is with us, we immediately start with the right wound care,” adds Duipmans. “If more than 20% of the skin is affected, the patient is admitted to the Burn Center of the Martini Hospital. If not, the patient stays with us and we do a complete dressing change 3 to 5 times a week. A large team of specialists is involved in the treatment, such as otolaryngologist, ophthalmologist, internist, dental hygienist and pain specialist ”.
Grease gauze and non-adhesive dressings
What sometimes happens when patients end up in UMCG after a referral is that they are attached to unsuitable materials or greasy gauze that is not properly covered. “Then the bandage is stuck in the wound, after which the removal becomes very painful,” says Duipmans. “At that time, patients accumulated a lot of fear about dressing changes. You have to regain confidence. You can reassure the patient by saying that after a good bandage, there is less discomfort. In addition, the patient can move and breathe better again. After covering the open skin, you will pay attention to the mucous membranes of the eyes, ears, nose and genitals. Black crusts on lips and eyes are also gently removed.
Duipmans and colleagues cover the wounds with non-adhesive bandages. “Because we have experience with other blister diseases, we like to use silicone foam dressings. There are other good options too. It is important that the product does not get stuck in the wound. If you were to use greasy gauze, you could apply a double layer, or you would add extra grease. “
If the skin is not open but flabby, Duipmans and colleagues cover those areas as well. “Experience has shown that preventative coverage of loose, non-erosive skin causes less pain and discomfort. After all, if your skin is loose, you feel your body’s defenses aren’t working properly. It’s painful and you literally feel vulnerable. Covering up gives the patient a new skin, so to speak ”.
wound care
Caring for the skin and mucous membranes of TEN patients presents many challenges. Large areas are often affected, including areas that are difficult to connect, such as the armpits and groin. “Even open mucous membranes are difficult to cure,” Duipmans knows from experience. “The genitals must also be kept open, because there is a risk of adhesions. You need to rub the foreskin of the penis well. You need to take care of the mucous membranes every 2 hours. Scabs, dry skin and flakes are also treated. Also, no adhesive material should come on the skin. They would take the skin with them once they were collected. This means that for the fixation of the materials it is necessary to use tricks with mesh and tubular bandages and self-adhesive bandages ”. We always carry out a dressing change with 2 people, adds Duipmans. “It is important to provide pain relief before dressing changes and to make sure all materials are ready. However, after an extensive dressing change, everyone is tired, the specialist nurse from Groningen knows this from practice. Over a cup of coffee, we discuss with the patient what went well and what could be improved ”.
Pain relief and other tips
Wound care of TEN patients is not possible without pain unless the patient is given general anesthesia. In UMCG, these patients are rarely linked in this way, because only patients with limited skin detachment remain in the UMCG. The pain team is called in to relieve pain, both for pain during the day and during dressing changes. Horváth agrees with the greater impact of pain: “It is very important to transport these patients in the right way. The first thing you say in the emergency room is: pain relief. “
“In addition, it is necessary to ensure a good room temperature, protective insulation, ventilation and possibly later, if the patient’s condition allows it, to bathe in the isotonic water of the bathroom, so that it hurts less,” says Duipmans. “You have to do everything possible to increase comfort.”
Psychological trauma and other problems
In addition to acute (wound) care, healthcare professionals need to be aware of the long-term consequences of this disease. In the discharge letter to the general practitioner and to the other doctors involved, all possible symptoms that may occur must therefore be mentioned. “Pay particular attention to the psychosocial aspects of the patient as well,” advises Horváth. “Many of these people have psychological trauma. After discharge, they are followed for a long time by a psychologist. They are very afraid of taking the pills ”.
Patients from the region regularly go to the UMCG for follow-up appointments with, among others, the ophthalmologist and oral surgeon. They can have many consequences of a previous TEN, such as conjunctivitis due to dry eyes or tooth decay due to dry mouth. “Also, they can no longer sweat properly and develop pigmentation spots,” Duipmans adds. “And sometimes they lose their nails temporarily.”
Long-term consequences
It is difficult to determine the long-term consequences of TEN, especially as many of these patients become invisible. There are several reasons for this, says Horváth. “These are often elderly patients and the disease is usually triggered by drugs. Patients often died after a longer period of time, but due to something other than TEN. Also, as we are a rural center, many patients come from far away. They are referred to their dermatologist “.
Horváth thinks it is important to monitor the complications of this disease. The long-term effects of this disease are being mapped in an ongoing study of burn centers.
References
- Trommel N, Hofland HW, van Komen RS, et al. Nursing problems in patients with toxic epidermal necrolysis and Stevens-Johnson syndrome in a Dutch burn center: a 30-year retrospective study. Burns. 2019; 45: 1625-1633.
- Njoo MD. Toxic Epidermal Necrolysis (TEN) / Lyell’s Syndrome. www.skinarts.com.
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