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Background:
Hereditary angioedema (HAE) is a rare genetic disease and characterized by clinical features such as paroxysmal, recurrent angioedema of the skin, the gastrointestinal tract, and the upper airways. Swelling of the skin occurs primarily in the face, extremities and genitals. Gastrointestinal attacks are accompanied by painful abdominal cramps, vomiting and diarrhea. Due to the low prevalence and the fact that HAE patients often present with rather unspecific symptoms such as abdominal cramps, the final diagnosis is often made after a long delay. The aim of this German-wide survey was to characterize the period between occurrence of first symptoms and final diagnosis regarding self-perceived health, symptom burden and false diagnoses for patients with HAE.
Results:
Overall, 81 patients with HAE were included and participated in the telephone-based survey. Of those, the majority reported their current health status as “good” (47.5%) or “very good” (13.8%), which was observed to be a clear improvement compared to the year before final diagnosis (“good” (16.3%), “very good” (11.3%)). Edema in the extremities (85.2%) and in the gastrointestinal tract (81.5%) were the most currently reported symptoms and occurred earlier than other reported symptoms (mean age at onset 18.1 and 17.8 years, respectively). Misdiagnoses were observed in 50.6% of participating HAE patients with appendicitis and allergy being the most frequently reported misdiagnoses (40.0 and 30.0% of those with misdiagnosis, respectively). Patients with misdiagnosis often received mistreatment (80.0%) with pharmaceuticals and surgical interventions as the most frequently carried out mistreatments (65.6 and 56.3% of those with mistreatment, respectively). The mean observed diagnostic delay was 18.1 years (median 15.0 years). The diagnostic delay was higher in older patients and index patients.
Conclusions:
This study showed that self-perceived status of health for patients is much better once the final correct diagnosis has been made and specific treatment was available. Further challenge in the future will still be to increase awareness for HAE especially in settings which are normally approached by patients at occurrence of first symptoms to assure early referral to specialists and therefore increase the likelihood of receiving an early diagnosis.
Aim:
To characterize palliative care patients, to estimate the incidence, prevalence, and 1-year all-cause mortality in patients in Germany who received palliative care treatment.
Subject and methods:
The study analyzed the InGef Research Database, which covers 4 million people insured in German statutory health insurance companies. Specific outpatient and inpatient reimbursement codes were used to capture cases with palliative conditions. The prevalence was ascertained for the year 2015. The incidence was calculated for patients without documented palliative care services in the year before the observation period. The Kaplan–Meier method was used to analyze the 1-year all-cause mortality.
Results:
The incidence rate of palliative conditions was 41.3 and 34.9 per 10,000 persons in women and men, respectively. The prevalence per 10,000 persons was 61.3 in women and 51.1 in men. The 1-year all-cause mortality among patients receiving their first palliative care treatment was 67.5%. Mortality was lower in patients receiving general outpatient palliative care treatment (AAPV; 60.8%) compared to patients receiving specialized outpatient palliative care treatment (SAPV; 86.1%) or inpatient palliative care treatment (90.6%). Within the first 30 days, mortality was particularly high (~43.0%).
Conclusions:
In Germany, more than 400,000 patients per year receive palliative care treatment, which is lower compared to estimates of the number of persons with a potential need for palliative care. This gap was observed particularly in younger to middle-aged individuals. The findings indicate a demand for methodologically sound studies to investigate the public health burden and to quantify the unmet need for palliative care in Germany.
Rezension zu:
Rösch, Hermann et al.: Bibliotheken und Informationsgesellschaft in Deutschland : eine Einführung / Hermann Rösch, Jürgen Seefeldt, Konrad Umlauf ; unter Mitarbeit von Albert Bilo und Eric W. Steinhauer ; mitbegründet von Engelbert Plassmann. – 3., neukonzipierte und aktualisierte Auflage. – Wiesbaden: Harrassowitz Verlag, 2019. – XIII, 329 Seiten. – ISBN 9783447066204 : EUR 39.80 (auch als EBook verfügbar)