Factors affecting parents' decision to involve their children in clinical research have not been studied in all cultural backgrounds. We aimed to explore the attitudes and beliefs influencing parents' decision to involve their children in clinical research in Mansoura, Egypt. Of 523 families approached, 357 filled the questionnaire. Only 98 (27.5%) parents consented to involve their child in clinical research. The children of consenters were significantly older than refusers: 8.6 (SD 7.2) versus 2.6 (SD 1.2) years. Factors favouring consent were: research of benefit to child (84.7%), enough explanation about the benefits (40.8%) and to learn more about child's condition (29.6%). Factors favouring refusal were: use of new drugs or vaccines (89.6%) and invasive procedures (84.2%). Parents' rate of consent was positively correlated with the research being non-invasive and the belief that research was of benefit to their child and negatively correlated with belief that refusal may negatively affect the care provided to their child. 1Department of Paediatrics, Mansoura University Children Hospital, Mansoura, Dakahlia, Egypt (Correspondence to N. Nasef: nehad_nasef@ mans.edu.eg RÉSUMÉ Les facteurs influant sur la décision des parents de laisser leur enfant participer à une étude de recherche clinique n'ont pas été étudiés dans tous les contextes culturels. L'objectif de l'étude était d'examiner les attitudes et les croyances influant sur la décision des parents de laisser participer leur enfant à une étude de recherche à Mansoura (Égypte). Sur 523 familles contactées, 357 ont rempli le questionnaire. Seuls 98 parents (27,5 %) consentaient à laisser participer leur enfant à une recherche clinique. Les enfants des parents qui avaient donné leur consentement étaient nettement plus âgés que ceux dont les parents avaient refusé : 8,6 ans (ET 7,2) contre 2,6 ans (ET 1,2). Les facteurs favorisant le consentement étaient les suivants : une recherche bénéfique pour l'enfant (84,7 %), des explications suffisantes sur les avantages (40,8 %) et l'occasion de mieux connaître l'affection de leur enfant (29,6%). Les facteurs favorisant le refus étaient les suivants : l'utilisation de nouveaux médicaments ou vaccins (89,6 %) et des actes invasifs (84,2 %). Le taux de consentement des parents était positivement corrélé à une recherche non invasive et à la croyance que la recherche serait bénéfique pour leur enfant, et négativement corrélé à la croyance selon laquelle un refus pourrait négativement influer sur les soins fournis à leur enfant. املتوسط لرشق الصحية املجلة العرشون املجلد الثالث العدد163
We retrospectively evaluated the clinical features, histo-pathological patterns, treatment modalities, and outcome of children and adolescents with lupus nephritis (LN), followed-up in Lupus Clinic, Pediatric Nephrology Unit, Mansoura University Children's Hospital between January 1997 and December 2012. Out of 194 patients diagnosed with systemic lupus erythematosus (SLE), LN was reported in 136 (70 %) patient, they were 27 males (20 %) and 109 females (80 %). The mean age at presentation was 12.5 ± 2.9 years, the mean duration of follow up was 4.1 years (range 2 months-12 years). Hematuria was present in 79 patients (58 %), proteinuria in 126 (92.6 %), 38 of them were in nephrotic range, while renal impairment was documented in 20 patients (15 %). Renal biopsy was done in 132 patients; diagnosis of class II, III, IV, V were 23, 25, 39, and 2 % respectively. Second renal biopsy was indicated in 58 patients (insufficient first biopsy 2, follow up in 45, lupus flare in 8, no response to therapy in 3 patients), while the third one was needed in only eight patients. Steroids were the commonest initial medications; used in 128 patients (63 alone and 65 with others) and cyclophosphamide was used in 64 patients. At the last follow-up visit; 19 % of patients lost follow-up, 45 % had complete remission, 21 % still had active disease, 1 % had end-stage renal disease, and 11 % died. In conclusion, in Egypt, childhood SLE is associated with frequent and severe nephritis at presentation, and this may be attributed to genetic, ethnic, or environmental factors.
Aim: This study investigated major allelic variants of CYP2D6, CYP3A4 and CYP3A5 in Egyptians, an Arabic population for which there is little information regarding these important pharmacogenes. Patients & methods: CYP2D6*2, *4, *5, *10, *41 and gene copy number variation, as well as CYP3A4*22 and CYP3A5*3 were determined with commercially available TaqMan assays in 145 healthy study participants. Results: The CYP2D6 alleles identified suggest that the prevalence of poor metabolizers is low as none were found among the 145 subjects investigated. The frequency for CYP3A5 nonexpressers was 74.5% and the CYP3A4*22 allele frequency was low at 2.0%. Conclusion: These preliminary findings indicate that pharmacogene variation in Egyptians is different from those of other Middle Eastern/Arabic populations and warrants further investigation.
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