میزان بروز و علل تولد بیمار جدید بتاتالاسمی ماژور بعد از اجرای برنامه کشوری پیشگیری در دانشگاه علوم پزشکی کرمان از 1390 تا 1398

نوع مقاله : اصیل پژوهشی

نویسندگان

1 مربی گروه بهداشت عمومی، دانشکده بهداشت، دانشگاه علوم پزشکی جیرفت، جیرفت، ایران.

2 پزشک عمومی، معاونت بهداشتی، دانشگاه علوم پزشکی کرمان، کرمان، ایران.

3 دانشجوی دکتری تخصصی سلامت در بلایا و فوریت‌ها، مرکز تحقیقات بیماری‌های مغز و اعصاب، دانشگاه علوم پزشکی کرمان، کرمان، ایران.

4 کارشناس بهداشت عمومی، معاونت بهداشتی، دانشکده علوم پزشکی سیرجان، سیرجان، ایران.

چکیده

مقدمه: تالاسمی، یک بیماری ژنتیکی با الگوی اتوزومال مغلوب است. تشخیص قبل از تولد و ختم بارداری در صورت ابتلای جنین، بهترین راه جهت پیشگیری از بروز این بیماری است. مطالعه حاضر با هدف تعیین میزان بروز و علت تولد بیمار بتاتالاسمی ماژور بعد از اجرای برنامه کشوری پیشگیری در دانشگاه علوم پزشکی کرمان انجام شد.
روش‌کار: این مطالعه توصیفی- تحلیلی و از نوع تحقیق در نظام سلامت بود. اطلاعات بیماران (تاریخ تولد، وضعیت سایر خواهران و برادران تنی) و زوجین ناقل (سال ازدواج، رابطه خویشاوندی، انجام غربالگری زمان ازدواج، سابقه مراقبت ژنتیک و علل تولد بیمار بتاتالاسمی) از داده­ های موجود در معاونت بهداشتی دانشگاه علوم پزشکی کرمان طی سال‌های 98-1390 به‌دست آمد. تجزیه و تحلیل داده­ ها با استفاده از نرم‌افزار آماری SPSS (نسخه 24) و آزمون دقیق فیشر انجام گرفت.
یافته ­ها: میزان بروز 9 ساله، در کل منطقه 55/0 در 10،000 تولد زنده و درصد موفقیت برنامه در کل منطقه 37/84% بود. 15 بیمار طی سال‌های 98-1390 متولد شده بود. مهم‌ترین علت بروز بتاتالاسمی ماژور، عدم شناسایی زوجین ناقل تالاسمی و عدم آگاهی آنها از وضعیت خود بود (6/46%). ازدواج والدین 9 مورد (60%) از کودکان بیمار خویشاوندی بود. بین علت تولد بیمار جدید بتاتالاسمی ماژور با سطح تحصیلات و شغل والدین بیماران ارتباط آماری معنی‌داری وجود نداشت (05/0<p).
نتیجه­ گیری: اگرچه با اجرای برنامه پیشگیری، تعداد بیماران بتاتالاسمی به‌طور قابل توجهی کاهش یافته است، اما برنامه‌ریزی مناسب جهت ارتقاء کیفیت ارائه خدمات مشاوره­ای و مراقبت ناقلین و افزایش سطح آگاهی و تغییر نگرش گروه‌های هدف جامعه به‌منظور حذف کامل موارد بروز بیماری ضروری می­ باشد.

کلیدواژه‌ها

عنوان مقاله [English]

Incidence rate and causes of new cases of major β-thalassemia after implementation of national prevention program in Kerman University of Medical Sciences, 2011 to 2019

نویسندگان [English]

  • Salman Daneshi 1
  • Fatemeh Mohseni Takaloo 2
  • Esmat Rezabeigi Davarani 3
  • Gholamreza PourAbazari 4
1 Instructor, Department of Public Health, School of Health, Jiroft University of Medical Sciences, Jiroft, Iran.
2 General Practitioner, Deputy of Health, Kerman University of Medical Sciences, Kerman, Iran.
3 Ph.D. Candidate of Health in Disasters and Emergencies, Neurology Research Center, Kerman University of Medical Sciences, Kerman, Iran.
4 B.Sc. in General Health, Deputy of Health, Sirjan School of Medical Sciences, Sirjan, Iran.
چکیده [English]

Introduction: Thalassemia is a genetic disease with an autosomal recessive pattern. Prenatal diagnosis (PND) and termination of pregnancy in the case of fetus infection is the best way to prevent this disease. This study was performed with aim to evaluate the incidence rate and causes of new cases of major β-thalassemia (MBT) after implementing the national prevention program in Kerman University of Medical Sciences.
Methods: This was descriptive and analytical study on health system research. Information of patients (Date of birth, status of other siblings) and carrier couples (year of marriage, kinship relationship, performing screening at the time of marriage, history of surveillance, and causes of the birth of beta-thalassemia patient) was obtained from the data available in the Health Department of Kerman Universities of Medical Sciences from 2011 to 2019. Data were analyzed by SPSS (Version 24) using Fisher's exact test. 
Results: The 9-year incidence rate in the whole region was 0.55 per 10,000 live births. The success rate of the program in the whole region was 84.37%. Fifteen patients were born between 2011 and 2019. The most important cause of MBT incidence was the lack of identification of thalassemia couples and their lack of awareness about their condition (46.6%). Nine (60%) of the patients' parents had consanguineous marriages. There was no statistically significant relationship between causes of new cases of MBT and the level of education and occupation of the patients' parents (P>0.05).
Conclusion: Although the implementation of the prevention program has significantly reduced the number of new cases of MBT, appropriate planning to improve the quality of counseling services and carrier couples care and increase the level of awareness and change the attitude of target groups to eliminate the incidence of the disease is necessary.

کلیدواژه‌ها [English]

  • Incidence
  • Prenatal diagnosis
  • Prevention
  • Thalassemia

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مجله زنان، مامایی و نازایی ایران
دوره 25، شماره 11
بهمن 1401
صفحه 34-46

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