Alsalman Mortadah, Alhamoud Hassan, Alabdullah Zainab, Alsleem Raghad, Almarzooq Zainab, Alsalem Fatemah, Alsulaiman Ahmed, Albeladi Abdullah, Alsalman Zaenb
Department of Medicine, College of Medicine, King Faisal University, Al Ahsa, Saudi Arabia.
Department of Medicine, King Fahad Hospital, Al Hofuf, Saudi Arabia.
Patient Prefer Adherence. 2023 Mar 21;17:761-767. doi: 10.2147/PPA.S404811. eCollection 2023.
Sickle cell disease (SCD) is an autosomal recessive disorder. Decisions following premarital screening results might be influenced by several factors. Thus, this study aims to assess the knowledge and beliefs toward SCD and reproductive decisions.
A cross-sectional study was conducted among adults in the eastern province of Saudi Arabia. Data was collected using a web-based questionnaire. Participants were divided into two groups based on their knowledge scores.
A total of 390 participants were recruited with a mean age of 28.6 years. The majority (90.5%) of participants had general knowledge about the disease mode of inheritance however, 66.9% had poor knowledge about the disease overall. Regarding knowledge level, there was no statistically significant difference between the non-healthy group (diseased and carrier) and healthy participants (P=0.304). Moreover, the participants' decisions about choosing future partners were more likely to be affected among those with prior knowledge about the disease (p=0.008). However, 152 (91.6%) male participants with prior knowledge would change their decision about selecting a future partner compared to 225 (92.4%) female participants. Regarding reproduction, only 38.5% of participants were aware of in vitro fertilization (IVF) as an assistive reproductive technology. Furthermore, female participants believed that IVF is a way to have healthy babies and would consider it despite the cost more than male participants (p=0.0001, p=0.007 respectively).
SCD is an inherited disease with economic, physical, and psychological burdens. However, curative options are costly, and hence, prevention is key. Therefore, healthcare decision-makers should consider implementing policies to minimize the financial burden that may still affect society despite the availability of free medical care. This study warrants extensive community-based education programs that may contribute toward cost savings. It also highlights the importance of premarital counselling for disease and carrier people including alternative reproduction options.
镰状细胞病（SCD）是一种常染色体隐性疾病。婚前筛查结果后的决策可能受到多种因素影响。因此，本研究旨在评估对镰状细胞病的认知与信念以及生殖决策。
在沙特阿拉伯东部省份的成年人中开展了一项横断面研究。通过基于网络的问卷收集数据。参与者根据其知识得分被分为两组。
共招募了390名参与者，平均年龄为28.6岁。大多数（90.5%）参与者对疾病的遗传模式有一般了解，然而，总体上66.9%的参与者对该疾病了解不足。在知识水平方面，非健康组（患病者和携带者）与健康参与者之间无统计学显著差异（P = 0.304）。此外，对疾病有先验知识的参与者在选择未来伴侣的决策上更容易受到影响（p = 0.008）。然而，有先验知识的男性参与者中有152名（91.6%）会改变选择未来伴侣的决定，而女性参与者中有225名（92.4%）会改变。关于生殖，只有38.5%的参与者知晓体外受精（IVF）作为一种辅助生殖技术。此外，女性参与者认为体外受精是生育健康婴儿的一种方式，并且会不顾成本考虑采用，这一比例高于男性参与者（分别为p = 0.0001，p = 0.007）。
镰状细胞病是一种具有经济、身体和心理负担的遗传性疾病。然而，治疗方案成本高昂，因此，预防是关键。所以，医疗保健决策者应考虑实施政策，以尽量减少尽管有免费医疗但仍可能影响社会的经济负担。本研究需要开展广泛的社区教育项目，这可能有助于节省成本。它还凸显了为患病者和携带者提供婚前咨询的重要性，包括替代生殖选择。
