Hewawasam Erandi, Stallard Belinda, Orsillo Alessandra, Boag Jane, Green Charmaine, Heffernan Laura, Maistry Carolina, Muthuramalingam Shyamsundar, Tolic Adela, Williamson Amber, Jesudason Shilpanjali
Australia and New Zealand Dialysis and Transplant Registry, South Australian Health and Medical Research Institute, Adelaide, Australia.
Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, Australia.
Kidney Int Rep. 2023 Oct 4;8(12):2802-2813. doi: 10.1016/j.ekir.2023.09.030. eCollection 2023 Dec.
The experiences and information needs for reproductive health counseling in women with chronic kidney disease (CKD) are poorly defined, despite the known importance of pregnancy planning in this higher-risk cohort.
Australian adult women with CKD and their partners or family members completed a consumer codesigned survey about experiences of and preferences for pregnancy-related counseling, support, and education. Data were analyzed descriptively and with qualitative content analysis of free-text responses.
Responses were received from 102 women (CKD, = 60; dialysis, = 11; transplant, = 26; unsure, n = 5 ) and 17 partners/family members. Pregnancy-related discussions were initiated mostly by women themselves (60.0%) compared to nephrologists (26.7%), and only after conception in 14.7%. Women found pregnancy-related discussions satisfactory (68.0%) and useful (50.7%) but also stressful (66.7%), with only 54.7% feeling in control of decision-making. Information deficits and quality, preformed decisions, clinician-patient disconnect, and burden of decision-making contributed to usefulness and outcomes of pregnancy-related counseling. Women received insufficient information about contraception (not provided in 35.2% of cases), medication safety (40.9%), fetal complications (33.8%) and emotional and psychological impact of pregnancy (73.2%). Women preferred counseling from nephrologists (86.4%), face-to-face settings (79.6%), websites (72.7%), handouts (61.4%), and online support groups (46.6%). High-quality, multiformat information by content experts, peer support, and psychological support were also strongly desired.
This study highlights that preconception counseling and information needs of women with CKD are currently not being met. Frameworks and tools to assist patients and clinicians, particularly nephrologists, to initiate and conduct sensitive, useful, and informed shared decision-making (SDM) about pregnancy are urgently needed.
尽管已知妊娠规划在这一高风险人群中很重要，但慢性肾脏病（CKD）女性在生殖健康咨询方面的经历和信息需求尚不明确。
澳大利亚成年CKD女性及其伴侣或家庭成员完成了一项由消费者共同设计的关于妊娠相关咨询、支持和教育的经历及偏好的调查。对数据进行描述性分析，并对自由文本回复进行定性内容分析。
共收到102名女性（CKD患者60名、透析患者11名、移植患者26名、情况不明者5名）及17名伴侣/家庭成员的回复。与肾脏病医生（26.7%）相比，妊娠相关讨论大多由女性自己发起（60.0%），且仅有14.7%是在受孕后进行。女性认为妊娠相关讨论令人满意（68.0%）且有用（50.7%），但也感到有压力（66.7%），只有54.7%的女性觉得能掌控决策过程。信息不足与质量、既定决策、医患脱节以及决策负担影响了妊娠相关咨询的有用性和结果。女性在避孕（35.2%的情况未提供相关信息）、药物安全性（40.9%）、胎儿并发症（33.8%）以及妊娠的情绪和心理影响（73.2%）方面获得的信息不足。女性更倾向于接受肾脏病医生的咨询（86.4%）、面对面咨询（79.6%）、网站咨询（72.7%）、手册咨询（61.4%）以及在线支持小组咨询（46.6%）。她们还强烈希望获得内容专家提供的高质量、多种形式的信息、同伴支持和心理支持。
本研究强调，CKD女性的孕前咨询和信息需求目前未得到满足。迫切需要有框架和工具来帮助患者及临床医生，尤其是肾脏病医生，就妊娠问题启动并开展敏感、有用且基于充分信息的共同决策（SDM）。
