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IntroductionAdvances in haemophilia treatment have resulted in a near‐normal life expectancy, lower burden of bleeding and treatment, and improved quality of life in high‐income countries. Bleeding rate is approaching zero and novel parameters should be evaluated to assess the efficacy of treatment not only from the clinical point of view by using new methodologies (e.g. joint health assessment), but also from the patient's perspective (e.g. pain, quality of life, treatment satisfaction).Methods and resultsThis approach should be aimed at combining objective clinical methodologies and patient‐reported outcomes (PROs). However, some instruments used for assessing PROs are still suboptimal and not properly validated. Recent evidence suggests that these tools can take advantage from a more personalized designed approach and could be effectively improved and serve to facilitate the patient's self‐evaluation. For other congenital bleeding disorders (BDs), a set of patient‐relevant outcomes has been also defined that overlap substantially those of haemophilia, including bleeding, side effects and complications, and PROs, such as pain, physical functioning, impact on daily life including school and work and mental health. There is a growing focus on addressing women‐specific outcomes in BDs, reflecting an increased awareness of the unique challenges faced by women in this context. However, the development of tailored tools is imperative to further advance the progress in managing women with BDs, ensuring more accurate monitoring and personalized care.ConclusionsHow incorporating these outcome measures in the process of approval of novel treatments for these disorders by regulatory authorities remains to be established.
IntroductionAdvances in haemophilia treatment have resulted in a near‐normal life expectancy, lower burden of bleeding and treatment, and improved quality of life in high‐income countries. Bleeding rate is approaching zero and novel parameters should be evaluated to assess the efficacy of treatment not only from the clinical point of view by using new methodologies (e.g. joint health assessment), but also from the patient's perspective (e.g. pain, quality of life, treatment satisfaction).Methods and resultsThis approach should be aimed at combining objective clinical methodologies and patient‐reported outcomes (PROs). However, some instruments used for assessing PROs are still suboptimal and not properly validated. Recent evidence suggests that these tools can take advantage from a more personalized designed approach and could be effectively improved and serve to facilitate the patient's self‐evaluation. For other congenital bleeding disorders (BDs), a set of patient‐relevant outcomes has been also defined that overlap substantially those of haemophilia, including bleeding, side effects and complications, and PROs, such as pain, physical functioning, impact on daily life including school and work and mental health. There is a growing focus on addressing women‐specific outcomes in BDs, reflecting an increased awareness of the unique challenges faced by women in this context. However, the development of tailored tools is imperative to further advance the progress in managing women with BDs, ensuring more accurate monitoring and personalized care.ConclusionsHow incorporating these outcome measures in the process of approval of novel treatments for these disorders by regulatory authorities remains to be established.
Objective: The Surgical Apgar Score (SAS) is a tool for intraoperative stratification of the risk of serious complications in the early postoperative period. It varies from 0 to 10 points divided into three risk categories (0 to 4 high, 5 to 7 moderate, 8 to 10 low). The aim of the study was to evaluate its relevance in predicting the appearance of these complications. Material and methods: This descriptive and analytical study was carried out at the "Laquintinie" Hospital in Douala and at the Central Hospital in Yaounde, Cameroon. The main data were collected on a population of patients over 18 years old and recorded on a survey form. They consisted of variables of main interest and exposure variables. Univariate and multivariate statistical analysis using top-down logistic regression models made it possible to evaluate the association of each variable of main interest and each exposure variable. The association was significant at P < 0.05. The multivariate analysis assessed the strength of the link by concomitantly adjusting for the other exposure variables having a level of significance ≤0.25 in univariate, and in the final model those presenting a significance ≤0.05. The relation was significant at P < 0.05. Results: Of the 88 patients studied, the SAS was < 4 for 17, 5 -7 for 66. Univariately, the prevalence of complications was significantly higher in the category of SAS < 4; OR (CI) 0.1 (0.1 -0.2) as well as for Altemeier classes 3 and 4, ASA 3 and 4, the duration of the intervention > 3 hours. In multivariate, this link persisted only and strongly for the SAS OR (IC) 0.1 (0.1 -0.2) and p = 000. Conclusion:
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