Phillips Rhiannon, Pell Bethan, Grant Aimee, Bowen Daniel, Sanders Julia, Taylor Ann, Edwards Adrian, Choy Ernest, Williams Denitza
1Division of Population Medicine, School of Medicine, Cardiff University, Cardiff, UK.
2Centre for Trials Research, Cardiff University, Cardiff, UK.
BMC Rheumatol. 2018 Jul 27;2:21. doi: 10.1186/s41927-018-0029-4. eCollection 2018.
Autoimmune rheumatic diseases (ARDs) such as inflammatory arthritis and Lupus, and many of the treatments for these diseases, can have a detrimental impact on fertility and pregnancy outcomes. Disease activity and organ damage as a result of ARDs can affect maternal and foetal outcomes. The safety and acceptability of hormonal contraceptives can also be affected. The objective of this study was to identify the information and support needs of women with ARDs during pregnancy planning, pregnancy and early parenting.
This mixed methods study included a cross-sectional online survey and qualitative narrative interviews. The survey was completed by 128 women, aged 18-49 in the United Kingdom with an ARD who were thinking of getting pregnant in the next five years, who were pregnant, or had young children (< 5 years old). The survey assessed quality-of-life and information needs (Arthritis Impact Measurement Scale Short Form and Educational Needs Assessment Tool), support received, what women found challenging, what was helpful, and support women would have liked. From the survey participants, a maximum variation sample of 22 women were purposively recruited for qualitative interviews. Interviews used a person-centered participatory approach facilitated by visual methods, which enabled participants to reflect on their experiences. Interviews were also carried out with seven health professionals purposively sampled from primary care, secondary care, maternity, and health visiting services.
Survey findings indicated an unmet need for information in this population (ENAT total mean 104.85, SD 30.18). Women at the pre-conception stage reported higher needs for information on pregnancy planning, fertility, giving birth, and breastfeeding, whereas those who had children already expressed a higher need for information on pain and mobility. The need for high quality information, and more holistic, multi-disciplinary, collaborative, and integrated care consistently emerged as themes in the survey open text responses and interviews with women and health professionals.
There is an urgent need to develop and evaluate interventions to better inform, support and empower women of reproductive age who have ARDs as they navigate the complex challenges that they face during pregnancy planning, pregnancy and early parenting.
自身免疫性风湿性疾病（ARDs），如炎性关节炎和狼疮，以及针对这些疾病的许多治疗方法，可能会对生育能力和妊娠结局产生不利影响。ARDs导致的疾病活动和器官损伤会影响母婴结局。激素避孕药的安全性和可接受性也可能受到影响。本研究的目的是确定患有ARDs的女性在怀孕计划、孕期和育儿早期的信息及支持需求。
这项混合方法研究包括一项横断面在线调查和定性叙述性访谈。调查由128名年龄在18 - 49岁、患有ARDs且打算在未来五年内怀孕、已怀孕或有年幼子女（<5岁）的英国女性完成。该调查评估了生活质量和信息需求（关节炎影响测量量表简表和教育需求评估工具）、获得的支持、女性认为具有挑战性的事情、有帮助的事情以及她们希望得到的支持。从参与调查的女性中，有目的地选取了22名具有最大差异的女性作为定性访谈对象。访谈采用以人为主的参与式方法，并借助视觉方法，使参与者能够反思自己的经历。还对从初级保健、二级保健、产科和健康访视服务中有目的地抽取的7名卫生专业人员进行了访谈。
调查结果表明该人群对信息的需求未得到满足（教育需求评估工具总分均值为104.85，标准差为30.18）。处于孕前阶段的女性报告称，她们对怀孕计划、生育能力、分娩和母乳喂养方面的信息需求较高，而那些已有子女的女性则表示对疼痛和行动能力方面的信息需求较高。在调查的开放式文本回复以及对女性和卫生专业人员的访谈中，对高质量信息以及更全面、多学科、协作和综合护理的需求一直是主题。
迫切需要开发和评估干预措施，以便更好地为患有ARDs的育龄女性提供信息、支持并增强她们的能力，使她们在应对怀孕计划、孕期和育儿早期所面临的复杂挑战时更加得心应手。
