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Abstract
Introduction: Cystic Fibrosis has been reported before in almost all Arab countries with an incidence ranges from 1:2500- 1:7000. Presentations varied, but mainly due to recurrent chest infection and Pancreatic Insufficiency. Median survival has been far below North American countries. Delayed diagnosis and delayed management account for the low median survival. Objectives: To present the demographic data of Cystic Fibrosis patients and their families, that involves their social status and education. Methodology: A retrospective chart review as part of the Cystic Fibrosis registry data from the period January 1998 to December 2018. All confirmed CF patients of all age groups who contributed their demographic information were included and analyzed. Results: A total of 430 confirmed Cystic Fibrosis patients. 236 (96%) patients survived, and 10 (4%) died. Two hundred and thirteen (49.5%) were males, and 217 (50.5%) were females. Eighty-three percent consanguinity rate. Forty-five had a family history of Cystic Fibrosis, and the diagnosis was suggested by family history in 9.5% of patients. 415 (98.1%) were of Saudi nationality. 156 (36.5%) were from the Eastern province. The mean age at diagnosis was 3.46 years (SD±5.547). Median survival around 22 years. Mean Sweat chloride was 92.04 mmol/ L (17.343). In reviewing the educational level of 247 patients, the level of elementary school accounted for 90 (36.1%) of patients, 24 (9.7%) of mothers, and 21 (8.5%) of fathers. Similarly, 43 (17.4%)/ 22 (8.9%)/ 102 (41.3%) were in the preparatory level, 35 (14.3%)/ 43 (17.4%)/ 51 (20.6%) were in the high school level, and 23 (9.3%)/ 39 (15.8%)/ 46 (18.6%) were in the college level, respectively. Regarding the employment: 145 (58.7%) patients are students, 3 (1.2%) are part-time employees, and 15 (6.0%) are full time employees. 207 (83.8%) mothers are housewives, 2 (0.8%) are students, and 29 (11.7%) have full-time employment. Paternal employment showed that 210 (85.0%) are full time, and 7 (2.8%) are part-time employees. Regarding their accommodation: 77 (31.2%) of Cystic Fibrosis parents owned a villa, 81 (32.8%) rented an apartment, and 79 (32%) owned their own apartment. Conclusion: More than 2/3 of CF patients are students at the elementary school level, and only 6.0% have a full-time job, which makes them completely dependent on both parents for their care. Median survival improved from 8 years in 1984 to 22 years. Further efforts need to be applied to different aspects of care to further improve median survival.
Highlights
Cystic Fibrosis has been reported before in almost all Arab countries with an incidence ranges from 1:2500- 1:7000
Patients survived, and 10 (4%) died. 213 (49.5%) were males, and 217 (50.5%) were females. 83% consanguinity rate. 45% had a family history of Cystic fibrosis (CF), and the diagnosis was suggested by family history in 9.5% of patients. 415 (98.1%) were of Saudi nationality. 156 (36.5%) were from the Eastern province
The majority of patients are Arabian, predominantly Saudi citizens residing in the Eastern province [25,26]
Summary
Cystic Fibrosis has been reported before in almost all Arab countries with an incidence ranges from 1:2500- 1:7000. Objectives: To present the demographic data of Cystic Fibrosis patients and their families, that involves their social status and education. Results: A total of 430 confirmed Cystic Fibrosis patients. Forty-five had a family history of Cystic Fibrosis, and the diagnosis was suggested by family history in 9.5% of patients. Demographics, Incidence/Prevalence, Survival: The prevalence of CF in Arab countries is estimated to range from 1:2,560 to 1:15000 [1,2] (Table-1), likely owing to ethnicity and the degree of consanguinity which is estimated at approximately 65% [3]. The median survival in Arab countries is low, estimated at 10-20 years of age [1,2] (Table-1). In 2004, a study of 27 European (EU) countries showed that the mean prevalence of CF was 0.737 per 10,000 [8] and a mean age of 45-50 years [9,10,11,12]
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