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This study aims to describe the creation process of standard procedures to make possible multicentre studies related to emotional aspects of thalassaemic patients, their families and caregivers; and the pilot phase of the routine implementation. The objectives defined to perform this goal are: i) develop routines to assess and manage/treat emotional issues; ii) adjust the ABRASTA - Brazilian Association of Thalassaemia computer system to the input of collected data and its compilation; iii) conduct a pilot implementation of the routines; iv) discuss the whole process and propose next steps. Forty patients were assisted following the above mentioned routines of psychological evaluation, follow-up assistance and management of specific emotional issues. Conclusions are that the routines are adequate to enable multicenter research to compare findings and develop specific interventions to Thalassaemia patients, their families and caregivers; information gathered through them is an important means of supporting medical doctors and other members of the professional team, both in the therapeutic planning and in the communication process with patients and families; finally, considering the nature of the information, psychologists and psychiatrists are the most indicated professionals to perform the assessment and the interventions related to emotional issues, due to their professional background, training and specific skills that allow a free and candid communication with the patients and their families. 本研究旨在描述标准程序的创造过程来进行关于地中海贫血患者、其家属和照顾者情感方面可能的多中心研究以及例程实施的试点阶段。 为实现此目的而定下的目标有 1制定例程评估和管理/处理情感问题2调整巴西地中海贫血病协会ABRASTA计算机系统 输入收集到的数据并对其进行编辑3对例程进行试点实施4讨论整个过程并提出下一步行动。 遵照上述特殊情感问题的心理评估、随访协助和管理的例程曾协助过四十名患者。 结论为该例程足以确保多中心研究以比较结果和为地中海贫血患者、其家属和照顾者制定具体的干预措施通过他们收集的信息是支持治疗医生和专业团队的其他成员的重要途径这些支持体现在治疗计划、以及和患者及其家属交流的过程中最后考虑到这些信息的性质心理专家和精神病专家是最明显的专业人士来进行的有关情感问题的评估和干预因为他们具备专业背景、专业训练和特殊技能这些使得他们能够和患者及其家属进行自由和真正的交流。</p

Emotional Assistance in Thalassaemia: Pilot Implementation of a Standard Protocol