Difficulties encountered in the emergency department by patients with hereditary angioedema experiencing acute attacks

Uçar, Ramazan; Arslan, Şevket; Baran, Mehmet Ali; Çalışkaner, Ahmet Zafer

doi:10.2500/aap.2016.37.3905

Cited by 15 publications

(14 citation statements)

References 9 publications

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“…One of the major recommendations/findings is to increase the awareness of the disease among physicians for assuring the correct diagnosis. In the current study, the mean duration between the onset of the symptoms and diagnosis was 17.02±12.9 years, a period in accordance with the findings of a study from another big city of our country which reported approximately a 17-year delay in diagnosis (10). However, a previous study conducted in Turkey reported the mean diagnostic delay time as 26 years (20).…”

Section: Discussionsupporting

confidence: 91%

“…In a previous study from Turkey that assessed HAE patients' experiences in emergency departments, the difficulties which HAE patients encountered were as follows: lack of awareness about HAE among physicians and nurses; lack of experience with the administration of the drug; inappropriate treatment for their attacks despite accurate diagnosis; and finally, insufficient supplies of C1inh concentrate in the units (10).…”

Section: Discussionmentioning

confidence: 99%

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Opinions of Turkish Hereditary Angioedema Patients Regarding the Use of C1 Inhibitor Concentrate in the Treatment of Acute Attacks

Demir¹,

Olgaç²,

Ünal³

et al. 2019

Asthma Allergy Immunol

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Objective: No data exists about the perceptions of Turkish hereditary angioedema patients regarding the use of C1 inhibitor concentrate that has been used in the treatment of acute attacks for the last 7 years. Our aim was to evaluate patient opinions about the C1 inhibitor (C1-inh) concentrate and determine the level of satisfaction with this drug. Materials and Methods: Fifty-seven hereditary angioedema (HAE) patients who used C1-inh concentrate for their angioedema attacks were asked to complete a questionnaire which contained various questions related to demographic information, clinical features, and experiences with C1-inh concentrate use. Results: Sixty-five % of the patients were female and 94.7% of the patients had type 1 HAE. The mean curent age and age of diagnosis were 38.11±12.6 and 29.95±13.85 years, respectively. Thirteen patients did not have a family history. Forty patients were under prophylaxis (danazol n=39, tranexamic acid= 1). The mean duration of the C1-inh concentrate usage was 4.07±1.76 years. The patients had taken this drug 6 times over the past year on average. All patients stated that they experienced difficulties during injections with this medication in the emergency units due to a lack of awareness by health care professionals regarding both HAE and C1-inh concentrate. While 61.4% of the patients reported overall satisfaction about the efficacy of drug, 43.8% stated that this medication should have a more practical application; 52.6% proposed that the drug should be more accessible in hospital emergency rooms. Conclusion: Patients with HAE generally considered that C1-inh concentrate was effective in their attacks. However, this group of patients expressed concerns related to the medical personnel's awareness about HAE as well as access to the medication.

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Section: Discussionsupporting

confidence: 91%

Section: Discussionmentioning

confidence: 99%

Opinions of Turkish Hereditary Angioedema Patients Regarding the Use of C1 Inhibitor Concentrate in the Treatment of Acute Attacks

Demir¹,

Olgaç²,

Ünal³

et al. 2019

Asthma Allergy Immunol

View full text Add to dashboard Cite

show abstract

“…In our series, the delay until HAE diagnosis was approximately 18 years, a finding from another major city in Turkey in accordance with those of Ucar et al who reported a diagnostic delay of approximately 17 years [29]. However, the first hereditary angioedema study conducted in Turkey reported the mean delay time as approximately 26 years [30].…”

Section: Discussionsupporting

confidence: 91%

Evaluating adherence to long-term prophylaxis treatment with danazol in adult hereditary angioedema patients: A real life study

Demir¹,

Ünal²,

Olgaç³

et al. 2019

Marmara Medical Journal

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Objective: To investigate the adherence to the prophylactic treatment in hereditary angioedema (HAE) patients as well as the potential factors which may affect this situation. Patients and Methods: In addition to evaluation of their medical records, sixty HAE patients were asked to complete a questionnaire including inquiries about demographic and clinical features of their disease and medications used. Disease severity was determined depending on their age of onset of symptoms, clinical manifestations, and need of long-term prophylaxis. Results: Sixty-five percent of the patients were female, the mean age was 38.07±12.38 years, 93.3% were type 1 HAE, 58.3% had a severe form of the disease, and 71.7% were under prophylaxis with danazol. Fourteen patients were not using danazol regularly due to the fear of side effects (n=11) and forgetfulness to take the medication (n=4). It was observed that the patients who were the only cases in their families, those having few relatives with HAE and having had no excitus due to HAE in their families, were more adherent to prophylactic treatment (P=0.008; P=0.018; P=0.028). Conclusion: The majority of patients were effectively under long-term prophylaxis and the majority adhered to this treatment. The primary cause of non-adherence was fear of side effects.

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“…Even in the case of a known diagnosis, the care, especially in emergency rooms, may not be optimal 15. In emergency settings, it is not unusual to misdiagnose HAE as an allergic reaction, which results in treatment with antihistamines, epinephrine and corticosteroids without sufficient effect 5.…”

Section: Outcome and Follow-upmentioning

confidence: 99%

Hereditary angioedema: a mother diagnosing her child using Google as a diagnostic aid

Srikantharajah

Jakobsen

Bygum³

2018

BMJ Case Reports

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Hereditary angioedema (HAE), due to C1-inhibitor deficiency, is a rare autosomal dominant and potentially life-threatening disease characterised by recurrent oedema attacks of skin, mucosa and viscera. Due to the rarity and the fact that symptoms of HAE imitate other forms of angioedema and other conditions, HAE may be misdiagnosed, especially in emergency settings. Consequently, patients with HAE may experience significant delays in diagnosis. Without an accurate diagnosis patients with HAE may not receive proper treatment. At times ’Doctor Google' may be an important tool in establishing the diagnosis. The aim of this case report is to emphasise the importance of listening to patients and relatives and being humble to ’Doctor Google'. Furthermore, the aim is to remind all healthcare personal of HAE and the importance of considering the rare differential diagnoses to common symptoms.

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Difficulties encountered in the emergency department by patients with hereditary angioedema experiencing acute attacks

Abstract: Patients with HAE encounter difficulties in the ED, and the delay in diagnosis could be due to a low level of awareness regarding HAE. Therefore, the management of HAE in EDs requires improvement.

Cited by 15 publications

References 9 publications

Opinions of Turkish Hereditary Angioedema Patients Regarding the Use of C1 Inhibitor Concentrate in the Treatment of Acute Attacks

Opinions of Turkish Hereditary Angioedema Patients Regarding the Use of C1 Inhibitor Concentrate in the Treatment of Acute Attacks

Evaluating adherence to long-term prophylaxis treatment with danazol in adult hereditary angioedema patients: A real life study

Hereditary angioedema: a mother diagnosing her child using Google as a diagnostic aid

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