Patients' and relatives' perspectives on best possible care in the context of developing a multidisciplinary center for endometriosis and adenomyosis: findings from a national survey.

BACKGROUND: Endometriosis and adenomyosis are common benign conditions compromising both physical and psychological health, with a negative impact on quality of life. This survey aimed to establish what the users' perspectives are on best possible care in the context of developing a multidisciplinary center for endometriosis and adenomyosis in Norway. METHODS: An electronic questionnaire was developed in collaboration between the Norwegian Patient's Endometriosis Society (NPES) and gynecologists with special interest in endometriosis and adenomyosis. The questionnaire was distributed digitally to the members of NPES in May 2021. RESULTS: 938 participants answered the questionnaire. Better patient information, long term therapeutic plans and integration of their partners into their care were the main concerns. Multidisciplinary care was a key issue for the majority, with (n = 775) 89% stating a need for a consultation with a psychologist, (n = 744) 86% at least one consultation with a nutritionist, (n = 733) 85% a physiotherapist, and (n = 676) 78% needing a sex therapist and (n = 935) 99,7% consider research and (n = 934) 99,8% consider quality assurance initiated by the endometriosis center to be important. The qualitative analysis of free text answers revealed a great need for updated and easily accessible information, meeting competent health care professionals and being taken seriously/listened to. CONCLUSIONS: This survey shows similar perceptions and a high level of agreement regarding their needs amongst people with endometriosis and/or adenomyosis. This survey supports recommendations by the experts that endometriosis/adenomyosis care should be centralized in specialized, multidisciplinary centers. The results of the present work will be valuable for the future planning and development of a multidisciplinary endometriosis center.

The Effect of Pregnancy on the Long-term Risk of Graft Loss, Cardiovascular Disease, and Death in Kidney Transplanted Women in Norway: A Retrospective Cohort Study.

BACKGROUND: Kidney transplant recipients have now conceived for almost 50 years. Nevertheless, few studies have evaluated long-term health outcomes for kidney transplanted women after pregnancies. METHODS: We conducted a retrospective cohort study of all Norwegian women receiving a kidney transplant before the age of 50 years between 1969 and 2013, with graft loss, cardiovascular disease, and death as outcomes. Baseline characteristics for all women were ascertained at first transplantation, with information about exposure, outcomes, and potential confounders collected from medical records. To account for changes in pregnancy status, data were analyzed using proportional hazard Cox regression with pregnancy status as a time-dependent covariate changing at the time of pregnancy. RESULTS: Of 650 women studied, 124 had a pregnancy after kidney transplantation. During the study period, graft loss, cardiovascular disease, and death occurred in 237, 73, and 274 women, respectively. Pregnancy was associated with 54% lower risk of graft loss (95% confidence interval [CI]: 25% to 71%) and 72% lower risk of death (95% CI, 53%-84%). Adjusting for possible confounders had a minimal impact on estimated values. There were considerable uncertainties and no statistically significant results regarding the estimated risk of cardiovascular disease after pregnancy (univariate hazard ratio, 0.91; 95% CI, 0.43-1.92; multivariate hazard ratio, 0.71; 95% CI, 0.32-1.60). CONCLUSIONS: Kidney transplanted women with pregnancies have a low risk of subsequent graft loss or death. These results are reassuring for the current clinical practice.

Pregnancy outcomes following maternal kidney transplantation: a national cohort study.

INTRODUCTION: Internal design flaws in previous reports of pregnancies following kidney transplantation have been outlined, and the need for a validation has been stated. The aim of this study was to collect information about obstetrical and neonatal outcomes in all Norwegian pregnancies following maternal kidney transplantation, and to compare these data with the general Norwegian population. MATERIAL AND METHODS: A retrospective cohort study based on 1 272 000 deliveries in Norway between 1969 and 2013. All data were collected from medical records. From the source population, we compared 119 first deliveries in kidney transplanted women with 238 first deliveries in nontransplanted women. An explanatory strategy was used in the analysis. RESULTS: The risk of preeclampsia was significantly increased in kidney-transplanted women compared with nontransplanted women (adjusted incidence rate ratio: 6.06, 95% confidence interval 3.18-11.55). Additionally, preeclampsia in kidney-transplanted women was early onset (diagnosed <34 gestational weeks) in half of the cases. There were also persistent risks of cesarean delivery (adjusted incidence rate ratio 4.14, 95% confidence interval 2.56-6.66), preterm delivery (adjusted incidence rate ratio 4.45, 95% confidence interval 2.13-9.30) and a birthweight below the 10th centile (22.7% vs. 9.7%) in the kidney-transplanted group. A high proportion (63%) of the kidney-transplanted women with chronic hypertension developed preeclampsia. CONCLUSIONS: Using consistent diagnostic criteria, this study shows high rates of maternal and neonatal complications in pregnancies following kidney transplantation. In particular, we reveal a high rate of early-onset preeclampsia requiring operative preterm delivery, conferring long-term risks on both the mother and child.