The intersection of two global problems: Refugees and inborn errors of metabolism

Gulenc, Nazli; Senel, Saliha; KILIÇ, Mustafa; OLGAC, Asburce; TÜMER, Leyla; Kasapkara, Çiğdem

doi:10.5455/annalsmedres.2020.05.513

The intersection of two global problems: Refugees and inborn errors of metabolism

Asburce OLGAC, (Dr. Sami Ulus Kadın Doğum ve Çocuk Sağlığı Eğitim ve Araştırma Hastanesi, Pediatrik Metabolizma Anabilim Dalı, Ankara, Türkiye)

Nazlı GÜLENÇ, (Dr. Sami Ulus Kadın Doğum ve Çocuk Sağlığı Eğitim ve Araştırma Hastanesi, Çocuk Sağlığı ve Hastalıkları Anabilim Dalı, Ankara, Türkiye)

Çiğdem Seher KASAPKARA, (Dr. Sami Ulus Kadın Doğum ve Çocuk Sağlığı Eğitim ve Araştırma Hastanesi, Pediatrik Metabolizma Anabilim Dalı, Ankara, Türkiye)

Mustafa KILIÇ, (Dr. Sami Ulus Kadın Doğum ve Çocuk Sağlığı Eğitim ve Araştırma Hastanesi, Pediatrik Metabolizma Anabilim Dalı, Ankara, Türkiye)

Saliha ŞENEL, (Dr. Sami Ulus Kadın Doğum ve Çocuk Sağlığı Eğitim ve Araştırma Hastanesi, Çocuk Sağlığı ve Hastalıkları Anabilim Dalı, Ankara, Türkiye)

Leyla TÜMER (Gazi Üniversitesi, Tıp Fakültesi, Pediatrik Metabolizma ve Beslenme Anabilim Dalı, Ankara, Türkiye)

Annals of Medical Research

1 0

Yıl: 2021 Cilt: 28 Sayı: 2 Sayfa Aralığı: 296 - 302 Metin Dili: İngilizce DOI: 10.5455/annalsmedres.2020.05.513 İndeks Tarihi: 28-06-2021

The intersection of two global problems: Refugees and inborn errors of metabolism

Öz:

Aim: The aim of this study was to evaluate the awareness of inborn errors of metabolism (IEMs), and their inheritance, symptoms, treatment modalities, and preventive measures among parents of Syrian refugee children who were admitted to our outpatient clinics. Materials and Methods: A survey using a semi-structured interview questionnaire in Arabic was conducted among randomly selected parents. Demographic data were evaluated. The relationship between demographic data, including education level and income with study variables were analyzed. Results: 123 parents participated in the study. The rate of consanguinity was 67.5%. The majority (82.9%) of participants were unaware of the term IEM. The education level of parents were shown to have an impact on the knowledge of IEM (p<0.05). Nearly all participants mentioned that they wanted to be informed of the newborn screening program of Turkey.Conclusion: This is a unique study on the awareness of IEM among refugee Syrian population in Turkey. Understanding the level of awareness of CMDs of the refugee population, may improve diagnosis and management strategies, and will be a solution, at least in part, for a global problem.

Anahtar Kelime:

Belge Türü: Makale Makale Türü: Araştırma Makalesi Erişim Türü: Erişime Açık

1. Torun P, Karaaslan MM, Sandikli B, et al. Health and health care access for Syrian refugees living in Istanbul. Int J Public Health 2018;63:601-8.
2. Ekmekci PE. Syrian refugees, health and migration legislation in Turkey. J Immigr Minor Healt 2017;19:1434-41.
3. El-Hattab AW. Inborn Errors of Metabolism. Clin Perinatol 2015;42:413-39.
4. Afzal RM, Lund AM, Skovby F. The impact of consanguinity on the frequency of inborn errors of metabolism. Dan Med J 2018;65:A5508.
5. Hamamy H. Consanguineous marriages: Preconception consultation in primary health care settings.J Community Genet. 2012;3:185-92.
6. Waters D, Adeloye D, Woolham D, Wastnedge E, et al. Global birth prevalence and mortality from inborn errors of metabolism: a systematic analysis of the evidence. J Glob Health 2018;8:021102.
7. Hatzmann J, Peek N, Heymans H, et al. Consequences of caring for a child with a chronic disease: Employment and leisure time of parents. J Child Health Care 2014;18:346-57.
8. Mak CM, Lam CW, Law CY, et al. Parental attitudes on expanded newborn screening in Hong Kong. Public Health. Nov 2012;126:954-9.
9. El-Hattab AW, Almannai M, Sutton VR. Newborn Screening: History, Current Status, and Future Directions.Pediatr Clin North Am 2018;65:389-405.
10. Ardic A, Esin MN, Koc S, et al. Using the Omaha System to determine health problems of urban Syrian immigrants. Public Health Nurs 2019;36:126-33.
11. Schiergens KA, Staudigl M, Borggraefe I, et al. Neurological Sequelae due to Inborn Metabolic Diseases in Pediatric Refugees: Challenges in Treating the Untreated.Neuropediatrics 2018;49:363-8.
12. Al Essa M, Ozand PT, Al-Gain SI. Awareness of inborn errors of metabolism among parents in Saudi Arabia. Ann Saudi Med 1997;17:562-4.
13. Henneman L, Borry P, Chokoshvili D, et al. Responsible implementation of expanded carrier screening. Eur J Human Genet 2016;24:1-12.
14. Detmar S, Hosli E, Dijkstra N, et al. Information and informed consent for neonatal screening: opinions and preferences of parents.Birth 2017;34:238-44.
15. Campbell ED, Ross LF. Incorporating newborn screening into prenatal care. Am J Obstet Gynecol 2004;190:876-7.
16. Araia MH, Wilson BJ, Chakraborty P, et al. Factors associated with knowledge of and satisfaction with newborn screening education: a survey of mothers. Genet Med 2012;14:963-70.
17. Fitzpatrick P, Fitzgerald C, Somerville R, et al. Parental awareness of newborn bloodspot screening in Ireland. Ir J Med Sci 2018;188:921-3.

APA	OLGAC A, Gulenc N, Kasapkara Ç, KILIÇ M, Senel S, TÜMER L (2021). The intersection of two global problems: Refugees and inborn errors of metabolism. , 296 - 302. 10.5455/annalsmedres.2020.05.513
Chicago	OLGAC Asburce,Gulenc Nazli,Kasapkara Çiğdem,KILIÇ Mustafa,Senel Saliha,TÜMER Leyla The intersection of two global problems: Refugees and inborn errors of metabolism. (2021): 296 - 302. 10.5455/annalsmedres.2020.05.513
MLA	OLGAC Asburce,Gulenc Nazli,Kasapkara Çiğdem,KILIÇ Mustafa,Senel Saliha,TÜMER Leyla The intersection of two global problems: Refugees and inborn errors of metabolism. , 2021, ss.296 - 302. 10.5455/annalsmedres.2020.05.513
AMA	OLGAC A,Gulenc N,Kasapkara Ç,KILIÇ M,Senel S,TÜMER L The intersection of two global problems: Refugees and inborn errors of metabolism. . 2021; 296 - 302. 10.5455/annalsmedres.2020.05.513
Vancouver	OLGAC A,Gulenc N,Kasapkara Ç,KILIÇ M,Senel S,TÜMER L The intersection of two global problems: Refugees and inborn errors of metabolism. . 2021; 296 - 302. 10.5455/annalsmedres.2020.05.513
IEEE	OLGAC A,Gulenc N,Kasapkara Ç,KILIÇ M,Senel S,TÜMER L "The intersection of two global problems: Refugees and inborn errors of metabolism." , ss.296 - 302, 2021. 10.5455/annalsmedres.2020.05.513
ISNAD	OLGAC, Asburce vd. "The intersection of two global problems: Refugees and inborn errors of metabolism". (2021), 296-302. https://doi.org/10.5455/annalsmedres.2020.05.513

APA	OLGAC A, Gulenc N, Kasapkara Ç, KILIÇ M, Senel S, TÜMER L (2021). The intersection of two global problems: Refugees and inborn errors of metabolism. Annals of Medical Research, 28(2), 296 - 302. 10.5455/annalsmedres.2020.05.513
Chicago	OLGAC Asburce,Gulenc Nazli,Kasapkara Çiğdem,KILIÇ Mustafa,Senel Saliha,TÜMER Leyla The intersection of two global problems: Refugees and inborn errors of metabolism. Annals of Medical Research 28, no.2 (2021): 296 - 302. 10.5455/annalsmedres.2020.05.513
MLA	OLGAC Asburce,Gulenc Nazli,Kasapkara Çiğdem,KILIÇ Mustafa,Senel Saliha,TÜMER Leyla The intersection of two global problems: Refugees and inborn errors of metabolism. Annals of Medical Research, vol.28, no.2, 2021, ss.296 - 302. 10.5455/annalsmedres.2020.05.513
AMA	OLGAC A,Gulenc N,Kasapkara Ç,KILIÇ M,Senel S,TÜMER L The intersection of two global problems: Refugees and inborn errors of metabolism. Annals of Medical Research. 2021; 28(2): 296 - 302. 10.5455/annalsmedres.2020.05.513
Vancouver	OLGAC A,Gulenc N,Kasapkara Ç,KILIÇ M,Senel S,TÜMER L The intersection of two global problems: Refugees and inborn errors of metabolism. Annals of Medical Research. 2021; 28(2): 296 - 302. 10.5455/annalsmedres.2020.05.513
IEEE	OLGAC A,Gulenc N,Kasapkara Ç,KILIÇ M,Senel S,TÜMER L "The intersection of two global problems: Refugees and inborn errors of metabolism." Annals of Medical Research, 28, ss.296 - 302, 2021. 10.5455/annalsmedres.2020.05.513
ISNAD	OLGAC, Asburce vd. "The intersection of two global problems: Refugees and inborn errors of metabolism". Annals of Medical Research 28/2 (2021), 296-302. https://doi.org/10.5455/annalsmedres.2020.05.513