Demographic and clinical characteristics
Of the 548 patients sent questionnaires, a total of 148 questionnaires were returned, for an overall response rate of 27%. After the questionnaires were analyzed to determine that the respondent had indeed had HVA, we were able to include a total of 126 patients. Our final patient cohort was comprised of 75 patients from FR, 29 from BK, and 22 from GP. A summary of patient demographics is presented in Table 1.
Table 1 Demographics of patient population Characteristics of index event
Based on the symptoms reported, patients were classified into four severity grades according to the criteria proposed by Ring and Messmer [16]. There were 7 patients with a grade 1 (mildest) reaction, 30 patients with grade 2, 81 patients with grade 3, and 8 patients with grade 4 reactions. Over 70% of respondents were not aware of their allergy at the time of their emergency intervention, and 80% were transported to a hospital for further monitoring after stabilization of the initial reaction.
Post index outcomes
Initial follow-up
During the index event, 55% of the patients received recommendations for follow-up with information on required diagnostics and/or treatment options, 37% did not receive any recommendation, while 8% did not remember or did not answer whether they received information during the index event. Almost 70% of patients did not receive an allergy identification card during the initial treatment and over 40% of patients reported not receiving a prescription for emergency medications during their acute treatment. Only 17% received both written and verbal information on preventing future insect stings, while 35% did not receive any information on sting avoidance.
Prescription of emergency medication for self treatment
Current guidelines mandate the prescription of oral glucocorticoids, oral antihistamines, and epinephrine auto-injectors (EAI).
Emergency medications were well prescribed, with 90% of patients reporting that they received a prescription for emergency medications at some point during the follow-up care, while only 60% received this prescription during the initial treatment. Over half of patients who received medications were instructed in how to use them, but only 23% actually received hands-on practice. Only 77% of patients with emergency medication received a prescription for an EAI and at the time of survey 47% of EAIs were expired. Sixty one percent of patients reported that their physician did not check their emergency medications during follow-up visits.
After filling their prescription 32% of patients reported to have used their emergency medications at least once. A substantial percentage (43%) of patients either rarely or never carried their medications with them (Fig. 1a). The top reason for not carrying emergency medications was forgetfulness, with 50 patients naming it as a reason. Thirty two patients said that auto-injector size was a reason that they did not carry the EAI. Patient attitudes toward carrying emergency medications are summarized in Fig. 1b.
Referral to allergist and diagnostics performed
After the initial emergency treatment, almost 40% of patients did not receive a referral to see an allergist, and 15% did not see any physician for follow-up (8 patients did not answer). Only 46% reported seeing an allergist for follow-up.
Almost one quarter (28/126) of patients did not receive any diagnostic testing any time after the index event. As presented in Fig. 2a, of the patients who received diagnostics (n = 98), 73 patients reported receiving diagnostics from an allergist. The next most common providers were primary care physicians, with 12 patients reporting.
Fig. 2b demonstrates the allergy diagnoses received. Eighty one patients reported to have received test results that confirmed an allergy to hymenoptera venom. This is 64% of the entire patient population, and 86% of those patients who received diagnostic testing. As seen in Fig. 2c, of those receiving diagnostic testing, 80% were diagnosed within one year of their index event.
Venom immunotherapy
Seventy percent of patients received information about VIT, and 50% started the treatment. Of the 62 patients who did not start VIT, almost half received neither diagnostics nor information about VIT as a treatment option. Six patients received diagnostics and were diagnosed with HVA, but reported not receiving any information on VIT. Fourteen patients were diagnosed with HVA and received information about VIT but did not start VIT for various reasons. Patients were asked to write-in their reasons for not undergoing VIT. A summary is presented in Table 2.
Table 2 Commencement of venom immunotherapy (VIT) and the status with regard to diagnostic testing, diagnoses, information regarding VIT of patients who did not begin VIT, and reasons given for not starting VIT Factors influencing medical follow-up care
Twenty-seven percent of all patients reported receiving follow-up care at University Hospital Medical Center Freiburg (UKF), and another 13% reported receiving follow-up at another secondary or tertiary center.
As detailed in Table 3, all patients who received follow-up at a tertiary center received diagnostic testing compared with 92% of those receiving treatment at a secondary center. All patients who saw an allergist in private practice also received diagnostics, compared with 51% of those patients who saw a non-allergist physician. Patients treated at a tertiary center reported having received information on VIT in 97% of the cases, as compared to 92% of the patients treated at secondary centers. Eighty-three percent of patients who saw an allergist in private practice received information regarding VIT, compared with only 34% of those who saw a non-allergist physician.
Table 3 Patients receiving diagnostic workup and information regarding venom immunotherapy (VIT) by follow-up provider classification Although the sample size is small, particularly in the grade 1 and grade 4 groups, we observed a trend that increased reaction severity was associated with a higher rate of referral to an allergist, a higher percentage of patients receiving diagnostics and information on VIT and a higher rate of patients starting VIT. Despite this trend, among the severe reactors (grade 3 and 4; n = 89) only 61% were referred to an allergist, 75% received proper diagnostics, 70% received information on VIT, and only 54% were started on VIT (Fig. 3).
Finally, there were factors that did not affect follow-up treatment. There was no statistically significant difference in patient cohorts (FR, BK, GP) and follow-up treatment, nor did private vs. public insurance influence follow-up. Gender also did not play a role in patients receiving follow-up treatment (data not shown).
To get an overall picture of the treatment path of each patient, a tree diagram was constructed with the most pertinent end points: 1. received a recommendation for follow-up (during the acute treatment), 2. saw an allergist, 3. received emergency medications for home use, 4. received diagnostic testing, 5. result of diagnostic testing (positive for bee and/or wasp venom or not), 6. informed about VIT, 7. received VIT. For simplicity, if a patient did not respond to a question or did not remember they were grouped in as giving a negative response, with the exception of the topic “allergist visit” where they were given their own category.
Finally, it was striking that receiving an early recommendation for follow-up was a strong predictor of patients actually seeing an allergist, receiving diagnostic testing, receiving information regarding VIT and starting VIT. Of the 69 patients who received an early recommendation, 96% (66/69 patients) received a prescription for emergency medication, 70% (48/69) saw an allergist, 88% (61/69) received diagnostic testing and 89% of those that were tested positive (47/53) went on to receive VIT (Fig. 4a and b).
In contrast, of those who did not receive an early recommendation for follow-up (n = 46), 80% (37/46) received emergency medication, 17% (8/46) saw an allergist, 59% (27/46) received diagnostic testing, and 64% of those that were tested positive (14/22) went on to receive VIT (Fig. 4a and c). Eleven patients did not remember or did not answer the question whether they received early recommendation for follow-up care during the acute treatment phase (Fig. 4d). In this group 90% (10/11) received emergency medication, 18% (2/11) saw an allergist, 54% (6/11) received diagnostic testing, and 20% of those that were tested positive (1/5) went on to receive VIT (Fig. 4a and d).