بررسی اپیدمیولوژیک بیماران شکاف کام مادرزادی در 31 استان تحت پوشش موسسه خیریه حمایت از کودکان با ناهنجاری‌های مادرزادی (محکم): یک مطالعه مبتنی بر رجیستری
محورهای موضوعی : -مدیریت اطلاعات بهداشتی و درمانی
صلاح الدین دلشاد
1
,
اباذر حاجوی
2
,
فرخنده اسدی
3
,
سید محسن لعل موسوی
4
,
مریم علی دادی
5
1 - دانشیار، گروه جراحی اطفال، دانشکده پزشکی، دانشگاه علوم پزشکی ایران، تهران، ایران
2 - مربی، گروه مدیریت اطلاعات سلامت، دانشکده مدیریت و اطلاع رسانی پزشکی، دانشگاه علوم پزشکی ایران، تهران، ایران
3 - استاد، گروه مدیریت و فناوری اطلاعات سلامت، دانشکده علوم پیراپزشکی دانشگاه علوم پزشکی شهید بهشتی، تهران، ایران
4 - دانشجوی کارشناسی‌ارشد فناوری اطلاعات سلامت، گروه مدیریت اطلاعات و انفورماتیک پزشکی، دانشکده علوم پیراپزشکی دانشگاه علوم پزشکی تهران، تهران، ایران
5 - دانشجوی کارشناسی‌ارشد فناوری اطلاعات سلامت، گروه مدیریت و فناوری اطلاعات سلامت، دانشکده علوم پیراپزشکی دانشگاه علوم پزشکی شهید بهشتی، تهران، ایران
کلید واژه: اپیدمیولوژی, ناهنجاری‌های مادرزادی, شکاف کام,
چکیده مقاله :
مقدمه: شکاف‌های دهانی از ناهنجاری‌های مادرزادی شایع هستند و میزان بروز آن در بین گروه‌های نژادی یا قومی متفاوت است. علی رغم اهمیت ناهنجاری‌های مادرزادی، اطلاعات آماری دقیقی از این بیماری در دسترس نیست، بنابراین با استفاده از سامانه‌های رجیستری می‌توان اطلاعات کافی در اختیار تصمیم‌گیرندگان برای کنترل این بیماری قرار داد.روش پژوهش: مطالعه حاضر، بصورت توصیفی مقطعی از داده‌های سامانه رجیستری است؛ که داده‌های 1461 بیمار مبتلا به شکاف کام در بازه زمانی 15 ساله بررسی گردیده است. داده‌های جمع‌آوری شده شامل متغیرهای مختلفی به همراه پراکندگی جغرافیایی می‌باشد.یافته‌ها: یافته‌های مطالعه حاضر حاکی از آن است نسبت جنسیت پسر به دختر 1.3 به 1 است. در 4.79 درصد از مادران نوزادان دارای شکاف کام سابقه بیماری زمینه‌ای داشتند، که هیپوتیروئیدیسم با 0.9 بیشترین آن می‌باشد. در 54 درصد از موارد والدین روابط خویشاندی داشتند. 58.31 درصد از نوزادان دارای شکاف کام، علاوه بر مشکل مزبور، ناهنجاری‌های دیگری نیز داشتند.نتیجه‌گیری: میزان بروز شکاف کام در نقاط مختلف جهان متفاوت است و در کشور ما این تنوع ممکن است متاثر از عوامل اجتماعی و نژادی در مناطق مختلف باشد.
Introduction: Oral clefts are common congenital malformations and their incidence varies among racial or ethnic groups. Despite the importance of congenital abnormalities, accurate statistical information about this disease is not available, so by using registry systems, enough information can be provided to decision makers to control this disease.Methods: The current study is a cross-sectional descriptive study of registry system data; that the data of 1461 patients with cleft palate have been analyzed in a period of 15 years. The collected data includes various variables along with geographical distribution.Findings: The findings of the present study indicate that the gender ratio of boys to girls is 1.3 to 1. In 4.79% of the mothers of babies with cleft palate, there was a history of underlying disease, of which hypothyroidism was the highest with 0.9%. In 54% of cases, parents were related. 58.31% of babies with cleft palate had other abnormalities in addition to this problem.Conclusion: The incidence rate of cleft palate is different in different parts of the world and in our country this variation may be affected by social and racial factors in different regions.
1- Ekanem T, Bassey I, Mesembe O, Eluwa M, Ekong M. Incidence of congenital malformation in 2 major hospitals in Rivers state of Nigeria from 1990 to 2003. EMHJ-Eastern Mediterranean Health Journal, 2011; 17(9): 701-705.
2- Sitkin NA, Ozgediz D, Donkor P, Farmer DL. Congenital anomalies in low-and middle-income countries: the unborn child of global surgery. World journal of surgery, 2015; 39(1): 36-40.
3- Yazdee AK, Saedi B, Sazegar AA, Mehdipour P. Epidemiological aspects of cleft lip and palate in Iran. Acta Medica Iranica; 2011: 54-8.
4- Hosseini SN, Kalantar-Hormozi A, Vakili M, Yariqoli F, Hosseini N. Epidemiology of lip and palate clefts in northwest of Iran: Prevalence, surgery complications and unrepaired patients younger than 18 years old. Clinical Epidemiology and Global Health, 2019; 7(1): 6-10.
5- Group IW. Prevalence at birth of cleft lip with or without cleft palate: data from the International Perinatal Database of Typical Oral Clefts (IPDTOC). The Cleft Palate-Craniofacial Journal, 2011; 48(1): 66-81.
6- Haseli A, Hajimirzaie S, Bagheri L, Sadeghian A, Ahmadnia E. Prevalence of Cleft Lip and Cleft Palate in Iran: A Systematic Review and Meta-Analysis. Journal of Mazandaran University of Medical Sciences, 2019; 28(168): 185-97.
7- Ittiwut R, Siriwan P, Suphapeetiporn K, Shotelersuk V. Epidemiology of cleft lip with or without cleft palate in Thais. Asian Biomedicine, 2016; 10(4): 335-8.
8- Noorollahian M, Nematy M, Dolatian A, Ghesmati H, Akhlaghi S, Khademi GR. Cleft lip and palate and related factors: A 10 years study in university hospitalised patients at Mashhad—Iran. African journal of paediatric surgery: AJPS, 2015; 12(4): 286.
9- Dastgiri S, Imani S, Kalankesh L, Barzegar M, Heidarzadeh M. Congenital anomalies in Iran: a cross‐sectional study on 1574 cases in the North‐West of country. Child: care, health and development, 2007; 33(3): 257-61.
10- Mashhadi Abdolahi H, Kargar Maher MH, Afsharnia F, Dastgiri S. Prevalence of congenital anomalies: a community-based study in the Northwest of Iran. International Scholarly Research Notices; 2014.
11- Asadi F, Paydar S. Presenting an evaluation model of the trauma registry software. International journal of medical informatics, 2018; 112: 99-103.
12- Larsson S, Lawyer P, Garellick G, Lindahl B, Lundström M. Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care’s value. Health Affairs, 2012; 31(1): 220-7.
13- Gliklich RE, Dreyer NA, Leavy MB. Registries for evaluating patient outcomes. A User’s Guide, 2010; 5: 19-29.
14- Farhud D, Walizadeh G, Kamali MS. Congenital malformations and genetic diseases in Iranian infants. Human genetics, 1986; 74(4): 382-5.
15- Vatankhah S, Jalilvand M, Sarkhosh S, Azarmi M, Mohseni M. Prevalence of congenital anomalies in Iran: A review article. Iranian journal of public health, 2017; 46(6): 733.
16- Nekoeimokadam M, Amiryosafi S, Ghorbani Bahabadi Z, Amiresmaili M. Role of charities in the health system: A qualitative study. Journal of Qualitative Research in Health Sciences, 2020; 2(1): 1-10.
17- Jalilevand N, Jalaie S. Prevalence of cleft lip and palate among four provinces in the West and North-West of Iran. Journal of research in medical sciences: the official journal of Isfahan University of Medical Sciences, 2015; 20(6): 548.
18- Mirfazeli A, Kaviany N, Hosseinpour KR, Golalipour MJ. Incidence of cleft lip and palate in Gorgan-Northern Iran: an epidemiological study. Oman Medical Journal, 2012; 27(6): 461.
19- Elahi MM, Jackson IT, Elahi O, Khan AH, Mubarak F, Tariq GB, et al. Epidemiology of cleft lip and cleft palate in Pakistan. Plastic and reconstructive surgery, 2004; 113(6): 1548-55.
20- Magdalenić-Meštrović M, Bagatin M. An epidemiological study of orofacial clefts in Croatia 1988–1998. Journal of Cranio-Maxillofacial Surgery, 2005; 33(2): 85-90.
21- Rittler M, López‐Camelo J, Castilla EE. Sex ratio and associated risk factors for 50 congenital anomaly types: clues for causal heterogeneity. Birth Defects Research Part A: Clinical and Molecular Teratology, 2004; 70(1): 13-9.
22- M. O. Epidemiological study of cleft lip in Iran. JOURNAL OF DENTAL SCHOOL SHAHID BEHESHTI UNIVERSITY OF MEDICAL SCIENCE, 1998; 32(17): 14 to 9.
23- AA. S. Statistical study of neonates with cleft lip and palate. Journal of Mashhad Dental School, 1996; 2(20): 54 to 9.
24- Grow JL, Lehman Jr JA. A local perspective on the initial management of children with cleft lip and palate by primary care physicians. The Cleft palate-craniofacial journal, 2002; 39(5): 535-40.
25- Jagomagi T, Soots M, Saag M. Epidemiologic factors causing cleft lip and palate and their regularities of occurrence in Estonia. Stomatologija, 2010; 12(4): 105-8.
26- Sadri D, Ahmadi N. The frequency of cleft lip and palate and the celated risk factors in a group of neonates in the city of Kerman during 1994-2002. Journal of Mashhad Dental School, 2007; 31(Issue): 71-6.
27- Neves ATdSC, Volpato LER, Espinosa MM, Aranha AMF, Borges AH. Environmental factors related to the occurrence of oral clefts in a Brazilian subpopulation. Nigerian medical journal: journal of the Nigeria Medical Association, 2016; 57(3): 167.
28- Zandi M, Heidari A. An epidemiologic study of orofacial clefts in Hamedan city, Iran: a 15-year study. The Cleft palate-craniofacial journal, 2011; 48(4): 483-9.
29- Womersley J, Stone D. Epidemiology of facial clefts. Archives of disease in childhood, 1987; 62(7): 717-20.
30- Asoka NDS, Chandrasekera A. Incidence of cleft lip and palate in Sri Lanka. Journal of oral and maxillofacial surgery, 1989; 47(6): 559-61.
31- Chapman C. Ethnic differences in the incidence of cleft lip and/or cleft palate in Auckland, 1960-1976. The New Zealand medical journal, 1983; 96(731): 327-9.
32- Habibelahi A, Bahrami N, Mohammadi F, Sarmadi S, Iranaq MHA, Farhangiyan M, et al. The registry of congenital cleft lip and cleft palate in Iran: Three-years pilot results and learned lessons. Journal of Craniomaxillofacial Research; 2021: 116-21.
33- Abu-Ghname A, Maricevich RS. American Cleft-Palate Craniofacial Association Annual Meeting: International Medical Graduate’s Perspective as a First-Time Attendee. The Cleft Palate-Craniofacial Journal, 2019; 56(9): 1264-5.
34- Nagalo K, Ouédraogo I, Laberge J-M, Caouette-Laberge L, Turgeon J. Epidemiology, clinical aspects and management of cleft lip and/or palate in Burkina Faso: A humanitarian pediatric surgery-based study. Open Journal of Pediatrics, 2015; 5(02): 113.
35- Mossey PA, Little J, Munger RG, Dixon MJ, Shaw WC. Cleft lip and palate. The Lancet, 2009; 374(9703): 1773-85.
36- Karimnejad Rami F, Mahmoodi G, Jahani MA. The analysis of relationship between health inputs with child mortality in based on Gini coefficient and Lorenz curve. Journal of healthcare management, 2019; 10(1): 31-42.
_||_1- Ekanem T, Bassey I, Mesembe O, Eluwa M, Ekong M. Incidence of congenital malformation in 2 major hospitals in Rivers state of Nigeria from 1990 to 2003. EMHJ-Eastern Mediterranean Health Journal, 2011; 17(9): 701-705.
2- Sitkin NA, Ozgediz D, Donkor P, Farmer DL. Congenital anomalies in low-and middle-income countries: the unborn child of global surgery. World journal of surgery, 2015; 39(1): 36-40.
3- Yazdee AK, Saedi B, Sazegar AA, Mehdipour P. Epidemiological aspects of cleft lip and palate in Iran. Acta Medica Iranica; 2011: 54-8.
4- Hosseini SN, Kalantar-Hormozi A, Vakili M, Yariqoli F, Hosseini N. Epidemiology of lip and palate clefts in northwest of Iran: Prevalence, surgery complications and unrepaired patients younger than 18 years old. Clinical Epidemiology and Global Health, 2019; 7(1): 6-10.
5- Group IW. Prevalence at birth of cleft lip with or without cleft palate: data from the International Perinatal Database of Typical Oral Clefts (IPDTOC). The Cleft Palate-Craniofacial Journal, 2011; 48(1): 66-81.
6- Haseli A, Hajimirzaie S, Bagheri L, Sadeghian A, Ahmadnia E. Prevalence of Cleft Lip and Cleft Palate in Iran: A Systematic Review and Meta-Analysis. Journal of Mazandaran University of Medical Sciences, 2019; 28(168): 185-97.
7- Ittiwut R, Siriwan P, Suphapeetiporn K, Shotelersuk V. Epidemiology of cleft lip with or without cleft palate in Thais. Asian Biomedicine, 2016; 10(4): 335-8.
8- Noorollahian M, Nematy M, Dolatian A, Ghesmati H, Akhlaghi S, Khademi GR. Cleft lip and palate and related factors: A 10 years study in university hospitalised patients at Mashhad—Iran. African journal of paediatric surgery: AJPS, 2015; 12(4): 286.
9- Dastgiri S, Imani S, Kalankesh L, Barzegar M, Heidarzadeh M. Congenital anomalies in Iran: a cross‐sectional study on 1574 cases in the North‐West of country. Child: care, health and development, 2007; 33(3): 257-61.
10- Mashhadi Abdolahi H, Kargar Maher MH, Afsharnia F, Dastgiri S. Prevalence of congenital anomalies: a community-based study in the Northwest of Iran. International Scholarly Research Notices; 2014.
11- Asadi F, Paydar S. Presenting an evaluation model of the trauma registry software. International journal of medical informatics, 2018; 112: 99-103.
12- Larsson S, Lawyer P, Garellick G, Lindahl B, Lundström M. Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care’s value. Health Affairs, 2012; 31(1): 220-7.
13- Gliklich RE, Dreyer NA, Leavy MB. Registries for evaluating patient outcomes. A User’s Guide, 2010; 5: 19-29.
14- Farhud D, Walizadeh G, Kamali MS. Congenital malformations and genetic diseases in Iranian infants. Human genetics, 1986; 74(4): 382-5.
15- Vatankhah S, Jalilvand M, Sarkhosh S, Azarmi M, Mohseni M. Prevalence of congenital anomalies in Iran: A review article. Iranian journal of public health, 2017; 46(6): 733.
16- Nekoeimokadam M, Amiryosafi S, Ghorbani Bahabadi Z, Amiresmaili M. Role of charities in the health system: A qualitative study. Journal of Qualitative Research in Health Sciences, 2020; 2(1): 1-10.
17- Jalilevand N, Jalaie S. Prevalence of cleft lip and palate among four provinces in the West and North-West of Iran. Journal of research in medical sciences: the official journal of Isfahan University of Medical Sciences, 2015; 20(6): 548.
18- Mirfazeli A, Kaviany N, Hosseinpour KR, Golalipour MJ. Incidence of cleft lip and palate in Gorgan-Northern Iran: an epidemiological study. Oman Medical Journal, 2012; 27(6): 461.
19- Elahi MM, Jackson IT, Elahi O, Khan AH, Mubarak F, Tariq GB, et al. Epidemiology of cleft lip and cleft palate in Pakistan. Plastic and reconstructive surgery, 2004; 113(6): 1548-55.
20- Magdalenić-Meštrović M, Bagatin M. An epidemiological study of orofacial clefts in Croatia 1988–1998. Journal of Cranio-Maxillofacial Surgery, 2005; 33(2): 85-90.
21- Rittler M, López‐Camelo J, Castilla EE. Sex ratio and associated risk factors for 50 congenital anomaly types: clues for causal heterogeneity. Birth Defects Research Part A: Clinical and Molecular Teratology, 2004; 70(1): 13-9.
22- M. O. Epidemiological study of cleft lip in Iran. JOURNAL OF DENTAL SCHOOL SHAHID BEHESHTI UNIVERSITY OF MEDICAL SCIENCE, 1998; 32(17): 14 to 9.
23- AA. S. Statistical study of neonates with cleft lip and palate. Journal of Mashhad Dental School, 1996; 2(20): 54 to 9.
24- Grow JL, Lehman Jr JA. A local perspective on the initial management of children with cleft lip and palate by primary care physicians. The Cleft palate-craniofacial journal, 2002; 39(5): 535-40.
25- Jagomagi T, Soots M, Saag M. Epidemiologic factors causing cleft lip and palate and their regularities of occurrence in Estonia. Stomatologija, 2010; 12(4): 105-8.
26- Sadri D, Ahmadi N. The frequency of cleft lip and palate and the celated risk factors in a group of neonates in the city of Kerman during 1994-2002. Journal of Mashhad Dental School, 2007; 31(Issue): 71-6.
27- Neves ATdSC, Volpato LER, Espinosa MM, Aranha AMF, Borges AH. Environmental factors related to the occurrence of oral clefts in a Brazilian subpopulation. Nigerian medical journal: journal of the Nigeria Medical Association, 2016; 57(3): 167.
28- Zandi M, Heidari A. An epidemiologic study of orofacial clefts in Hamedan city, Iran: a 15-year study. The Cleft palate-craniofacial journal, 2011; 48(4): 483-9.
29- Womersley J, Stone D. Epidemiology of facial clefts. Archives of disease in childhood, 1987; 62(7): 717-20.
30- Asoka NDS, Chandrasekera A. Incidence of cleft lip and palate in Sri Lanka. Journal of oral and maxillofacial surgery, 1989; 47(6): 559-61.
31- Chapman C. Ethnic differences in the incidence of cleft lip and/or cleft palate in Auckland, 1960-1976. The New Zealand medical journal, 1983; 96(731): 327-9.
32- Habibelahi A, Bahrami N, Mohammadi F, Sarmadi S, Iranaq MHA, Farhangiyan M, et al. The registry of congenital cleft lip and cleft palate in Iran: Three-years pilot results and learned lessons. Journal of Craniomaxillofacial Research; 2021: 116-21.
33- Abu-Ghname A, Maricevich RS. American Cleft-Palate Craniofacial Association Annual Meeting: International Medical Graduate’s Perspective as a First-Time Attendee. The Cleft Palate-Craniofacial Journal, 2019; 56(9): 1264-5.
34- Nagalo K, Ouédraogo I, Laberge J-M, Caouette-Laberge L, Turgeon J. Epidemiology, clinical aspects and management of cleft lip and/or palate in Burkina Faso: A humanitarian pediatric surgery-based study. Open Journal of Pediatrics, 2015; 5(02): 113.
35- Mossey PA, Little J, Munger RG, Dixon MJ, Shaw WC. Cleft lip and palate. The Lancet, 2009; 374(9703): 1773-85.
36- Karimnejad Rami F, Mahmoodi G, Jahani MA. The analysis of relationship between health inputs with child mortality in based on Gini coefficient and Lorenz curve. Journal of healthcare management, 2019; 10(1): 31-42.