Patient and Partner Perspectives of Pregnancy-Related Counseling and Information Needs in Women With Kidney Disease: An Australian National Survey

Abstract

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, n= 60; dialysis, n= 11; transplant, n= 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.