Identification and management of Lynch syndrome in the Middle East and North African countries: outcome of a survey in 12 countries

Autor: Mary E. Velthuizen, Amal Abedrabbo, Demetra Georgiou, Ala I. Sharara, Keivan Majidzadeh-A, Carol Jabari, Laila Rifai, Andreas Hadjisavvas, Fahd Al-Mulla, Hans F. A. Vasen, Zeinab Ghorbanoghli, Rihab Ben Sghaier, Suzan M Talaat, Rania Abu Seir, Gurbankhan Muslumov, Wail Hammoudeh, Maria A. Loizidou, Hadia Ziada-Bouchaar, George Cortas, Berrin Tunca, Makia J. Marafie, Aysel Ahadova, Waseem Hamoudi, Ladan Goshayeshi, Marie-Pierre Buisine, Mohammad Sina
Jazyk: angličtina
Rok vydání: 2020
Předmět:
Cancer Research
medicine.medical_specialty
Azerbaijan
Population
Computer-assisted web interviewing
DNA Mismatch Repair
Health Services Accessibility
03 medical and health sciences
Middle East
0302 clinical medicine
Africa
Northern

Epidemiology
Health care
Genetics
medicine
Humans
Genetic Testing
North African countries
Family history
education
Genetics (clinical)
Genetic testing
Amsterdam Criteria II
Middle Eastern countries
Colorectal cancer
Lynch syndrome
Family Health
Population Density
education.field_of_study
medicine.diagnostic_test
business.industry
Genetic Services
Colonoscopy
medicine.disease
Colorectal Neoplasms
Hereditary Nonpolyposis

Arabs
Oncology
030220 oncology & carcinogenesis
Family medicine
Health Care Surveys
Population Surveillance
Cyprus
Practice Guidelines as Topic
030211 gastroenterology & hepatology
Original Article
business
Zdroj: Familial Cancer, 20, 215-221. SPRINGER
Familial Cancer
Popis: Background Lynch syndrome (LS), the most common inherited form of colorectal cancer (CRC), is responsible for 3% of all cases of CRC. LS is caused by a mismatch repair gene defect and is characterized by a high risk for CRC, endometrial cancer and several other cancers. Identification of LS is of utmost importance because colonoscopic surveillance substantially improves a patient’s prognosis. Recently, a network of physicians in Middle Eastern and North African (ME/NA) countries was established to improve the identification and management of LS families. The aim of the present survey was to evaluate current healthcare for families with LS in this region. Methods A questionnaire was developed that addressed the following issues: availability of clinical management guidelines for LS; attention paid to family history of cancer; availability of genetic services for identification and diagnosis of LS; and assessment of knowledge of LS surveillance. Members of the network and authors of recent papers on LS from ME/NA and neighbouring countries were invited to participate in the survey and complete the online questionnaire. Results A total of 55 individuals were invited and 19 respondents from twelve countries including Algeria, Azerbaijan, Cyprus, Egypt, Iran, Jordan, Kuwait, Lebanon, Morocco, Palestine, Tunisia, and Turkey completed the questionnaire. The results showed that family history of CRC is considered in less than half of the surveyed countries. Guidelines for the management of LS are available in three out of twelve countries. The identification and selection of families for genetic testing were based on clinical criteria (Amsterdam criteria II or Revised Bethesda criteria) in most countries, and only one country performed universal screening. In most of the surveyed countries genetic services were available in few hospitals or only in a research setting. However, surveillance of LS families was offered in the majority of countries and most frequently consisted of regular colonoscopy. Conclusion The identification and management of LS in ME/NA countries are suboptimal and as a result most LS families in the region remain undetected. Future efforts should focus on increasing awareness of LS amongst both the general population and doctors, and on the improvement of the infrastructure in these countries.
Databáze: OpenAIRE