Bonavita Simona, Lavorgna Luigi, Worton Hilary, Russell Susan, Jack Dominic
Department of Advanced Medical and Surgical Sciences, University of Campania "Luigi Vanvitelli," Naples, Italy.
Neurological Institute for Diagnosis and Care "Hermitage Capodimonte," Naples, Italy.
Front Neurol. 2021 Apr 28;12:620772. doi: 10.3389/fneur.2021.620772. eCollection 2021.
The majority of people diagnosed with MS are of childbearing or child fathering age, therefore family planning is an important issue for both women and men with MS. Fertility and the course of pregnancy are not affected by MS; however, people with MS (pwMS) may have concerns that there will be a greater risk of complications to the mother and/or adverse pregnancy outcomes either due to the disease or to ongoing medication. This survey aimed to understand family planning decision making in pwMS and related unmet educational needs. A total of 332 pwMS across the USA, UK, France, Germany, Italy, and Spain were recruited from a specialist patient panel agency to participate in a smartphone-enabled standing panel. The 80-question survey focussed on decision making and information sources for pwMS regarding family planning, as well as behavior during and after pregnancy. Male patients with MS did not respond to specific questions on pregnancy. Survey results were directly compared with the 2016 US and 2010 UN census data. pwMS were more likely to have no children than the general population, particularly in the subgroup of patients aged 36-45 years. A total of 56% of pwMS reported that the disease affected, with different degrees of impact, their family planning decision making. Of these, 21% significantly changed their plans for timing of pregnancy and the number of children, and 14% decided against having children. Participants indicated that healthcare professionals were the primary source of information on family planning (81% of responses). The timing of planned pregnancy was not considered when selecting treatment by 78% of participants. MS was found to significantly impact family planning decision making, with pwMS significantly less likely to have children in comparison with the general population.
大多数被诊断为多发性硬化症（MS）的人处于生育年龄，因此计划生育对患有MS的女性和男性来说都是一个重要问题。生育能力和妊娠过程不受MS影响；然而，患有MS的人（pwMS）可能担心由于疾病或正在使用的药物，母亲出现并发症和/或不良妊娠结局的风险会更高。这项调查旨在了解pwMS的计划生育决策以及相关未满足的教育需求。从一家专业患者小组机构招募了美国、英国、法国、德国、意大利和西班牙的332名pwMS，参与一个启用智能手机的常设小组。这份包含80个问题的调查问卷聚焦于pwMS在计划生育方面的决策和信息来源，以及妊娠期间和之后的行为。患有MS的男性患者没有回答关于妊娠的具体问题。调查结果与2016年美国人口普查数据和2010年联合国人口普查数据直接进行了比较。与普通人群相比，pwMS没有孩子的可能性更大，尤其是在年龄为36 - 45岁的患者亚组中。共有56%的pwMS报告称，疾病在不同程度上影响了他们的计划生育决策。其中，21%的人显著改变了怀孕时间和子女数量的计划，14%的人决定不生育。参与者表示，医疗保健专业人员是计划生育信息的主要来源（81%的回答）。78%的参与者在选择治疗时没有考虑计划怀孕的时间。研究发现，MS对计划生育决策有显著影响，与普通人群相比，pwMS生育子女的可能性显著降低。
