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INTRODUCTION: Prevention of attacks is a major goal in management of patients with hereditary angioedema (HAE). We aimed to investigate the effects of a systematic intervention for HAE patients. METHODS: Thirty-three patients with HAE with C1-inhibitor deficiency, belonging to a single family, participated in a management program coordinated by an allergist/immunologist. Angioedema attacks before intervention were ascertained by interviews and emergency room charts and recorded prospectively by patients or caregivers after enrollment. Mean number of attacks/month was compared at 12 months preintervention and 8 and 14 months within intervention. Patient-reported outcome instruments were used to assess quality of life, including HAE Quality of Life (HAE-QoL) questionnaire, psychological conditions, and work impairment, at baseline and 8 and 14 months within intervention. Data were stored in REDCap platform and analyzed by adjusted Bayesian models of double Poisson regression. RESULTS: Mean number of attacks/month significantly decreased (95% credible interval [CrI] excluding 0) from 1.15 preintervention to 0.25 and 0.23, 8 and 14 months within intervention, with mean decreases of -0.89 (95% CrI: -1.21 to -0.58) and -0.92 (95% CrI: -1.22 to -0.60), respectively. HAE-QoL scores showed mean total increases of 15.2 (95% CrI: 1.23-29.77) and 26 (95% CrI: 14.56-39.02) at 8 and 14 months within the study, as compared to baseline, revealing marked improvement in quality of life. Significant increase in role-emotional and reduction of depression, stress, and anxiety were observed at 14 months. CONCLUSION: A systematic approach integrating HAE-specific care with effective handling of psychological issues decreased the number of attacks and improved quality of life, targets for best practice in HAE.

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BACKGROUND: Hereditary Angioedema (HAE), a rare genetic disease, manifests as intermittent, painful attacks of angioedema. Attacks vary in frequency and severity and include skin, abdominal and life-threatening laryngeal swellings. This study aimed to develop a patient reported outcome (PRO) tool for the assessment of HAE attacks, including their management and impact on patients' lives, for use in clinical studies, or by physicians in general practice. METHODS: The results of open-ended face to face concept elicitation interviews with HAE patients in Argentina (n = 10) and the US (n = 33) were used to develop the first draft questionnaire of the HAE patient reported outcomes questionnaire (HAE PRO). Subsequently, in-depth cognitive debriefing interviews were performed with HAE patients in the UK (n = 10), Brazil (n = 10), Germany (n = 11) and France (n = 12). Following input from eight multinational clinical experts further cognitive interviews were conducted in the US (n = 12) and Germany (n = 12). Patients who experienced abdominal, cutaneous or laryngeal attacks of varying severity levels were included in all rounds of interviews. Across the rounds of interviews patients discussed their HAE attack symptoms, impacts and treatments. Cognitive debriefing interviews explored patient understanding and relevance of questionnaire items. All interviews were conducted face to face following a pre-defined semi-structured interview guide in the patient's native language. RESULTS: Patients reported a variety of HAE symptoms, attack triggers, warning signs, attack impacts and treatment options which were used to develop the HAE PRO. The HAE PRO was revised and refined following input from patients and clinical experts. The final 18-item HAE PRO provides an assessment of the HAE attack experience including symptoms, impacts, treatment requirements, healthcare resource use and loss of productivity caused by HAE attacks. CONCLUSIONS: Patient and expert input has contributed to the development of a content valid questionnaire that assesses concepts important to HAE patients globally. HAE patients across cultures consider the HAE PRO a relevant and appropriate assessment of HAE attacks and treatment.

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OBJECTIVE: Hereditary angioedema is a serious medical condition caused by a rare autosomal dominant genetic disorder and it is associated with deficient production or dysfunction of the C1 esterase inhibitor. In most cases, affected patients experience unexpected and recurrent crises of subcutaneous, gastrointestinal and laryngeal edema. The unpredictability, intensity and other factors associated with the disease impact the quality of life of hereditary angioedema patients. We evaluated the quality of life in Brazilian hereditary angioedema patients. METHODS: Patients older than 15 years with any severity of hereditary angioedema and laboratory confirmation of C1 inhibitor deficiency were included. Two questionnaires were used: a clinical questionnaire and the SF-36 (a generic questionnaire). This protocol was approved by the Ethics Committee of Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo. RESULTS: The SF-36 showed that 90.4% (mean) of all the patients had a score below 70 and 9.6% had scores equal to or higher than 70. The scores of the eight dimensions ranged from 51.03 to 75.95; vitality and social aspects were more affected than other arenas. The internal consistency of the evaluation was demonstrated by a Cronbach's alpha value above 0.7 in seven of the eight domains. CONCLUSIONS: In this study, Brazilian patients demonstrated an impaired quality of life, as measured by the SF-36. The most affected domains were those related to vitality and social characteristics. The generic SF-36 questionnaire was relevant to the evaluation of quality of life; however, there is a need for more specific instruments for better evaluation.

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OBJECTIVE: Hereditary angioedema is a serious medical condition caused by a rare autosomal dominant genetic disorder and it is associated with deficient production or dysfunction of the C1 esterase inhibitor. In most cases, affected patients experience unexpected and recurrent crises of subcutaneous, gastrointestinal and laryngeal edema. The unpredictability, intensity and other factors associated with the disease impact the quality of life of hereditary angioedema patients. We evaluated the quality of life in Brazilian hereditary angioedema patients. METHODS: Patients older than 15 years with any severity of hereditary angioedema and laboratory confirmation of C1 inhibitor deficiency were included. Two questionnaires were used: a clinical questionnaire and the SF-36 (a generic questionnaire). This protocol was approved by the Ethics Committee of Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo. RESULTS: The SF-36 showed that 90.4% (mean) of all the patients had a score below 70 and 9.6% had scores equal to or higher than 70. The scores of the eight dimensions ranged from 51.03 to 75.95; vitality and social aspects were more affected than other arenas. The internal consistency of the evaluation was demonstrated by a Cronbach's alpha value above 0.7 in seven of the eight domains. CONCLUSIONS: In this study, Brazilian patients demonstrated an impaired quality of life, as measured by the SF-36. The most affected domains were those related to vitality and social characteristics. The generic SF-36 questionnaire was relevant to the evaluation of quality of life; however, there is a need for more specific instruments for better evaluation.

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OBJECTIVE: to evaluate clinical skills indicators (CSI) with summarized real clinical cases (SRCC) by two generations of pregraduates interns. METHODS: with a descriptive survey design 430 SRCC were elaborated according to the CSI: risk factors, clinical diagnosis, laboratory and x-ray diagnosis, commission and omission iatrogenesis procedures, therapeutics, nosology and peer critical medical actions. An evaluation scale for the clinical cases included: a relationship with the clinical experience, and the CSI selected. The final evaluation was considered as adequate or inadequate and was performed independently by three medical social service students. RESULTS: except for family medicine, the SRCC were related to the clinical experience of the students. A 62 % of the total was considered as adequate. The CSI assessed were related to risk factors (18 %), clinical diagnosis (32 %), omission and commission iatrogenesis (9 %), laboratory and x-ray diagnosis resources (16 %), therapeutics (17 %), nosology (9 %) and a critical to peer medical actions (3 %). CONCLUSIONS: the SRCC patients studied from different points of view by the interns included the CSI. Therefore, this action is advisable for the improvement of the patients' clinical approach.

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OBJECTIVE: To value the psychiatric clinical aptitude (CA) in physical medicine and rehabilitation residents (PMR). METHODS: An instrument of evaluation of the psychiatric clinical aptitude was built, with five summarized real clinical cases, with 120 items to respond, 60 with true answer and 60 with false. The instrument was validated by experts, three psychiatrists and two specialists in physical medicine and rehabilitation that coincided completely in 44 % of the answers and in 56 % four of the five experts. It was applied to all medical residents of this specialty (n = 16), the internal consistency of the instrument was measured by the test of Kuder-Richardson (formula 20) showing a coefficient of 0.85, the random response was calculated by the Pérez Padilla-Viniegra test, being of 20 (17 %). Comparisons among the groups with U of Mann-Whitney and Kruskal-Wallis were made. RESULTS: Degrade of CA in the whole sample was low and there were differences statistically significant in favor of the third year residents. CONCLUSIONS: The educational strategies in the psychiatry area do not enhance the development of the CA in this specialty.

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OBJECTIVE: To compare the achievement of promotional strategies on the participation in two educational modalities for the development of skills for the elaboration of the knowledge (SSEK) in courses of teacher formation (TF). METHODS: A quasi-experimental design was performed in four courses of TF with similar contents and strategies with seven students each one. As independent variable the presence and semipresence modalities were considered. In order to measure the development of the SSEK reliable; a validated instrument were used. RESULTS: No significant differences were found among or between evaluations before and after interventions in the four groups. The students of the semipresencial course well as the presence advanced significantly in the development of the aptitudes and educative posture according to Wilcoxon test. CONCLUSIONS: Both modalities increase the SSKE to development therefore represents an option for medical education in health professionals.

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OBJECTIVE: To emphasize the influence of small groups discussion to promote self-learning. METHODOLOGY: Educational strategies aimed at promoting active participation were designed, and evaluated through its effect in developing aptitude to read critically. The experimental group (EG) participated in a three-phased strategy (individual assignment, small group discussion and plenary); the control group participated in a two-phased strategy (individual assignment and plenary). Subjects in both groups were randomly selected. Previously, an instrument to measure the capability to read critically educational theory texts was developed and validated. The duration and the contents were equal in both strategies. RESULTS: At the baseline, there were no differences between groups. After participating in the strategies, both groups showed significant progress. CG increased its score from 16 to 33 and the EC from 20 to 48 (p < 0.02). CONCLUSIONS: Small group discussion proved to be effective to increase the capability to read critically educational theory texts, thus it use should be considered when implementing educational strategies aimed at promoting active participation.

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OBJECTIVES: To evaluate the performance through time of the Centro de Investigación Educativa y Formación Docente (Educational Research and Teaching Education Center) at the Instituto Mexicano del Seguro Social (Mexican Institute of Social Security), Nuevo León Office using as an indicator the ability for critical reading of theoretical texts of education. MATERIAL AND METHODS: A comparative cross-sectional study was made among professors with and without teaching education, as well as among the several generations of professors that took teaching education courses at the Centro de Investigación Educativa y Formación Docente. A previously validated instrument was used to measure the ability for critical reading. It was applied to 358 professors, 107 with teaching education at the Centro de Investigación Educativa y Formación Docente in Monterrey and 251 without teaching education, at the IMSS Nuevo León Office. RESULTS: It was found that the previous teaching education constitutes a "positive risk" with an odds ratio of 17.66 (CI 9.02-34.12). Statistically significant differences were also found between not educated professors (median of 15) and educated professors (median of 35). In the scale, the grades at random and very low predominated in not educated professors, while the educated ones were located in the low and average. CONCLUSION: Professors at the Centro de Investigación Educativa y Formación Docente are improving their teaching labor using research as a means of self-criticism.

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