How Does Comprehensive Care Impact Life of Pediatric Patients With Hemophilia? Results From a Center in a Developing Country
Laura Villarreal‐MartínezAtenas Meléndez-AguirreMarcela Cantú-MorenoDomingo Garay‐MendozaJosé A. GarzaMarisol Ibarra‐RamírezMarbely Quiroga-TreviñoSulia E. Pope-SalazarIleana Velasco-Ruiz
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Background: Quality of life (QoL) has been included as a marker of treatment effectiveness in pediatric patients with chronic diseases. We believe that frequent multidisciplinary interventions and patient education could lead to an improvement in QoL. Aims: Determine the QoL and economic impact of monthly interventions in multidisciplinary treatment. Materials and Methods: The Haemo-QoL questionnaire was applied to patients who attended the hemophilia center of the University Hospital “Dr. José Eleuterio González,” Monterrey, Mexico, at the time of enrollment and 1 year later. Results: Male patients between 4 and 16 years diagnosed with hemophilia were included. The score results presented are based on Haemo-QoL versions that classify patients by their age group: group 1 (4 to 7 y) and group 2 (8 to 12 y). Statistical significant improvement was observed in the overall score (sociodemographic, psychosocial, etc.) after 1 year of follow-up in both groups ( P <0.05). Conclusions: Impact on the QoL of patients receiving this approach was favorable. Improvement was observed regardless of severity and in those who were already in prophylaxis, suggesting that this type of approach could be causing the improvement. Results support the application of multidisciplinary treatment as the gold standard, and it should be considered in all centers including those with limited resources.Although multidisciplinary research teams are well equipped to attack complex problems, actually succeeding in such endeavors is not so easy. This paper explores problems that may arise in multidisciplinary research teams, develops a grounded theory, and offers suggestions to help multidisciplinary research teams reach their goals. It also offers advice to educational administrators about how they can support multidisciplinary efforts in overcoming these potential difficulties.
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