Reassuring pregnancy outcomes in women with mild COL4A3-5-related disease (Alport syndrome) and genetic type of disease can aid personalized counseling.

Individualized pre-pregnancy counseling and antenatal care for women with chronic kidney disease (CKD) require disease-specific data. Here, we investigated pregnancy outcomes and long-term kidney function in women with COL4A3-5 related disease (Alport Syndrome, (AS)) in a large multicenter cohort. The ALPART-network (mAternaL and fetal PregnAncy outcomes of women with AlpoRT syndrome), an international collaboration of 17 centers, retrospectively investigated COL4A3-5 related disease pregnancies after the 20th week. Outcomes were stratified per inheritance pattern (X-Linked AS (XLAS)), Autosomal Dominant AS (ADAS), or Autosomal Recessive AS (ARAS)). The influence of pregnancy on estimated glomerular filtration rate (eGFR)-slope was assessed in 192 pregnancies encompassing 116 women (121 with XLAS, 47 with ADAS, and 12 with ARAS). Median eGFR pre-pregnancy was over 90ml/min/1.73m2. Neonatal outcomes were favorable: 100% live births, median gestational age 39.0 weeks and mean birth weight 3135 grams. Gestational hypertension occurred during 23% of pregnancies (reference: 'general' CKD G1-G2 pregnancies incidence is 4-20%) and preeclampsia in 20%. The mean eGFR declined after pregnancy but remained within normal range (over 90ml/min/1.73m2). Pregnancy did not significantly affect eGFR-slope (pre-pregnancy ß=-1.030, post-pregnancy ß=-1.349). ARAS-pregnancies demonstrated less favorable outcomes (early preterm birth incidence 3/11 (27%)). ARAS was a significant independent predictor for lower birth weight and shorter duration of pregnancy, next to the classic predictors (pre-pregnancy kidney function, proteinuria, and chronic hypertension) though missing proteinuria values and the small ARAS-sample hindered analysis. This is the largest study to date on AS and pregnancy with reassuring results for mild AS, though inheritance patterns could be considered in counseling next to classic risk factors. Thus, our findings support personalized reproductive care and highlight the importance of investigating kidney disease-specific pregnancy outcomes.

Exploring biopsychosocial correlates of pregnancy risk and pregnancy intention in women with chronic kidney disease.

INTRODUCTION: Women with Chronic Kidney Disease (CKD) are at increased risk of adverse pregnancy and renal outcomes. It is unknown how women with CKD understand their pregnancy risk. This nine-centre, cross-sectional study aimed to explore how women with CKD perceive their pregnancy risk and its impact on pregnancy intention, and identify associations between biopsychosocial factors and perception of pregnancy risk and intention. METHODS: Women with CKD in the UK completed an online survey measuring their pregnancy preferences; perceived CKD severity; perception of pregnancy risk; pregnancy intention; distress; social support; illness perceptions and quality of life. Clinical data were extracted from local databases. Multivariable regression analyses were performed. Trial registration: NCT04370769. RESULTS: Three hundred fifteen women participated, with a median estimated glomerular filtration rate (eGFR) of 64 ml/min/1.73m2 (IQR 56). Pregnancy was important or very important in 234 (74%) women. Only 108 (34%) had attended pre-pregnancy counselling. After adjustment, there was no association between clinical characteristics and women's perceived pregnancy risk nor pregnancy intention. Women's perceived severity of their CKD and attending pre-pregnancy counselling were independent predictors of perceived pregnancy risk. Importance of pregnancy was an independent predictor of pregnancy intention but there was no correlation between perceived pregnancy risk and pregnancy intention (r = - 0.002, 95% CI - 0.12 to 0.11). DISCUSSION: Known clinical predictors of pregnancy risk for women with CKD were not associated with women's perceived pregnancy risk nor pregnancy intention. Importance of pregnancy in women with CKD is high, and influences pregnancy intention, whereas perception of pregnancy risk does not.

Perceptions of risk in pregnancy with chronic disease: A systematic review and thematic synthesis.

BACKGROUND: Women with chronic disease are at increased risk of adverse pregnancy outcomes. Pregnancies which pose higher risk, often require increased medical supervision and intervention. How women perceive their pregnancy risk and its impact on health behaviour is poorly understood. The aim of this systematic review of qualitative literature is to evaluate risk perceptions of pregnancy in women with chronic disease. METHODS: Eleven electronic databases including grey literature were systematically searched for qualitative studies published in English which reported on pregnancy, risk perception and chronic disease. Full texts were reviewed by two researchers, independently. Quality was assessed using the Critical Appraisal Skills Programme Qualitative checklist and data were synthesised using a thematic synthesis approach. The analysis used all text under the findings or results section from each included paper as data. The protocol was registered with PROSPERO. RESULTS: Eight studies were included in the review. Three themes with sub-themes were constructed from the analysis including: Information Synthesis (Sub-themes: Risk to Self and Risk to Baby), Psychosocial Factors (Sub-themes: Emotional Response, Self-efficacy, Healthcare Relationship), and Impact on Behaviour (Sub-themes: Perceived Risk and Objective Risk). Themes fitted within an overarching concept of Balancing Act. The themes together inter-relate to understand how women with chronic disease perceive their risk in pregnancy. CONCLUSIONS: Women's pregnancy-related behaviour and engagement with healthcare services appear to be influenced by their perception of pregnancy risk. Women with chronic disease have risk perceptions which are highly individualised. Assessment and communication of women's pregnancy risk should consider their own understanding and perception of risk. Different chronic diseases introduce diverse pregnancy risks and further research is needed to understand women's risk perceptions in specific chronic diseases.