Pregnancy and CKD: Lessons on Communication From Patients

Holley, Jean Lake; Reddy, Sai Subhodhini

doi:10.1053/j.ajkd.2015.09.006

Cited by 8 publications

(4 citation statements)

References 6 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The questionnaire (phase 1: QPL development) was developed by the research team who are renal clinicians and reproductive health researchers, and based on PKD and pregnancy clinical guidelines [ 1 ], relevant literature [ 7 , 10 , 11 , 21 , 22 ], and similar QPLs for women with chronic health conditions (e.g. Khan et al [ 12 ]).…”

Section: Methodsmentioning

confidence: 99%

Co-design of a question prompt list about pregnancy and childbearing for women with polycystic kidney disease: an exploratory sequential mixed-methods study

Holton,

Nelson,

Rasmussen

et al. 2023

BMC Pregnancy Childbirth

View full text Add to dashboard Cite

Background Although women with polycystic kidney disease (PKD) generally have healthy pregnancies and babies, pregnancy is associated with a greater risk of maternal complications and requires planning and management of their condition. Given these possible complications, routine communication about childbearing between women with PKD and their treating team is important. A question prompt list (QPL), a structured list of questions used by patients during consultations with healthcare providers, may be beneficial in assisting women with PKD to discuss their childbearing concerns with, and seek related information from, their treating team. The aims of this study were to co‐design a QPL about pregnancy and childbearing for women with PKD, and evaluate its comprehensibility, salience, and acceptability. Methods An exploratory sequential mixed‐methods study of women of reproductive age with PKD living in Australia, using an experience‐based co‐design approach with two phases. Women were recruited from a metropolitan public health service and via social media and invited to complete an anonymous online survey about the development of the PKD QPL (phase one) and participate in an online discussion group about its refinement (phase two). Results Sixteen women completed the development survey and seven participated in the evaluation discussion group. Participants reported that women with PKD would value and use a QPL to prompt discussions with and seek further information about pregnancy and childbearing from their healthcare providers. Women identified four main topics for the QPL: ‘thinking about having a baby’, ‘pregnancy’, ‘my medications’ and ‘after my baby is born’. Within each section a series of questions was developed. Based on the findings, a QPL about pregnancy and childbearing for women with PKD was co-designed. Conclusions Women with PKD often find it difficult to access information and have discussions with their health care providers about pregnancy and childbearing. The PKD QPL co-designed in this study was perceived to be an acceptable tool which will, from the perspectives of participants, assist women with PKD to access information more easily about pregnancy, childbearing and PKD; ask more targeted questions of their treating team; and make informed childbearing decisions.

show abstract

Section: Methodsmentioning

confidence: 99%

Co-design of a question prompt list about pregnancy and childbearing for women with polycystic kidney disease: an exploratory sequential mixed-methods study

Holton,

Nelson,

Rasmussen

et al. 2023

BMC Pregnancy Childbirth

View full text Add to dashboard Cite

show abstract

“…There are few studies that analyse CKD patients’ views on pregnancy; in two of these studies, both from Anglo-Saxon settings, decision-making was depicted as very demanding; one respondent described it as ‘emotional wrestling, influenced by the need to weigh a variety of risks that carried significant consequences for their health, family, job and lifestyle’ [ 34 , 35 ]. Psychological barriers, including concerns that pregnancy will surely affect maternal kidney health or induce fetal malformations, play an important role in some cases, while in others a sense of responsibility towards a grafted organ is felt to be a major barrier against exposure to risk [ 34 , 36 , 37 ].…”

Section: Clinical and Psychological Barriers In Women Living With Ckd...mentioning

confidence: 99%

Pre-gestational counselling for women living with CKD: starting from the bright side

Da Silva,

Orozco-Guillén,

Longhitano

et al. 2024

Clinical Kidney Journal

View full text Add to dashboard Cite

Pregnancy in women living with chronic kidney disease (CKD) was often discouraged due to the risk of adverse maternal-fetal outcomes and the progression of kidney disease. This negative attitude has changed in recent years, with greater emphasis on patient empowerment than on the imperative “non nocere”. Although risks persist, pregnancy outcomes even in advanced CKD have significantly improved, both for the mother and the new-born. Adequate counselling can help to minimize risks and support a more conscious and informed approach to those that are unavoidable. Pre-conception counselling enables a woman to plan the most appropriate moment for her to try to become pregnant. Counselling is context sensitive and needs to be discussed also within an ethical framework. Classically, counselling is more focused on risks than on the probability of a successful outcome. “Positive counselling”, highlighting also the chances of a favourable outcome can help to strengthen the patient-physician relationship, which is a powerful means of optimizing adherence and compliance. Since, due to the heterogeneity of CKD, giving exact figures in single cases is difficult and may even be impossible, a scenario-based approach may help understanding and facing favourable outcomes and adverse events. Pregnancy outcomes modulate the future life of the mother and of her baby; hence the concept of “post partum” counselling is also introduced, discussing how pregnancy results may modulate the long-term prognosis of the mother and the child and the future pregnancies.

show abstract

“…In transplant recipients, the possibility that pregnancy might harm the allograft raises concerns about protecting a scarce resource and respecting/honoring the gift received, since graft loss would necessitate re-transplantation (Holley & Reddy, 2015;Leyser-Whalen et al, 2014;Ross, 2006;Tong et al, 2015b). In the interim, women experiencing graft loss would require dialysis.…”

Section: Ckd and Reproductive Counsellingmentioning

confidence: 99%

Ignorance is Not Bliss: The Case for Comprehensive Reproductive Counseling for Women with Chronic Kidney Disease

2021

View full text Add to dashboard Cite

The bioethics literature has paid little attention to matters of informed reproductive decision-making among women of childbearing age who have chronic kidney disease (CKD), including women who are on dialysis or women who have had a kidney transplant. Women with CKD receive inconsistent and, sometimes, inadequate reproductive counseling, particularly with respect to information about pursuing pregnancy. We identify four factors that might contribute to inadequate and inconsistent reproductive counseling. We argue that women with CKD should receive comprehensive reproductive counseling, including information about the possibility of pursuing pregnancy, and that more rigorous research on pregnancy in women with CKD, including women on dialysis or who have received a kidney transplant, is warranted to improve informed reproductive decision making in this population. KeywordsChronic kidney disease • Dialysis • End stage renal disease • Kidney transplantation • Pregnancy • Reproduction • Reproductive counseling • Shared decision making Women of childbearing age who have chronic kidney disease (CKD), including women who are on dialysis or women who have had a kidney transplant, receive inconsistent and, sometimes, inadequate reproductive counseling, particularly with

show abstract

Pregnancy and CKD: Lessons on Communication From Patients

Cited by 8 publications

References 6 publications

Co-design of a question prompt list about pregnancy and childbearing for women with polycystic kidney disease: an exploratory sequential mixed-methods study

Co-design of a question prompt list about pregnancy and childbearing for women with polycystic kidney disease: an exploratory sequential mixed-methods study

Pre-gestational counselling for women living with CKD: starting from the bright side

Ignorance is Not Bliss: The Case for Comprehensive Reproductive Counseling for Women with Chronic Kidney Disease

Contact Info

Product

Resources

About