Reproductive Health Knowledge and Educational Priorities in Chronic Kidney Disease: A Cross-Sectional Survey of People With CKD

Abstract

Rationale & Objective

Female reproductive health is affected by kidney disease but is often not addressed in nephrology care. Our objective was to better understand patient education needs on this topic to facilitate reproductive health education and care in chronic kidney disease (CKD).

Study Design

A cross-sectional online survey.

Setting & Participants

Female assigned sex at birth, aged 18-45 years, within the United States, fluent in English, with CKD recruited from national kidney organizations, research consortiums, and an academic medical center.

Outcomes

Reproductive health knowledge satisfaction, education needs, and communication preferences and barriers.

Exposures

Gravidity, pregnancy planning, CKD stage, disease etiology, health literacy, and demographics.

Analytic Approach

Univariate and multivariable logistic regression were used to examine associations between patient characteristics, knowledge satisfaction, and education needs. Descriptive statistics were used to assess communication preferences and barriers.

Results

Two hundred and nine surveys were completed. In total, 77% of participants self-identified as White, 11% Black, 4% Asian, and 11% Hispanic. A total of 23% had limited health literacy. Individuals planning a pregnancy in the future had lower knowledge satisfaction in univariate analysis. After multivariable analysis, only health literacy was significantly associated with knowledge satisfaction (β, −0.5; 95% CI, −0.9 to −0.02; P = 0.04). Understanding the impact of CKD on fetal development and menstruation, and kidney function changes after pregnancy were topics ranked as high priority by patients. Most wanted a nephrologist’s recommendation about birth control (76%; n = 159/209) and pregnancy timing (77%; n = 161/209).

Limitations

The limitations include convenience sampling and generalizability because of the online delivery of the survey and overrepresentation of higher socioeconomic groups.

Conclusions

This study provides priority topics to include in pregnancy planning during CKD care. Patients want advice from their nephrologists. More tools are needed to support reproductive health education for people with CKD, starting by addressing the need for those with limited health literacy.

Plain-language Summary

Chronic kidney disease (CKD) presents reproductive health challenges that can affect both the mother and fetus. Our study surveyed 209 women with CKD to assess their current reproductive health knowledge satisfaction, educational needs, and communication preferences and barriers. Results revealed that women are not satisfied with their knowledge about the effects of CKD on reproductive health, especially for those planning pregnancies or with low health literacy. Opportunities for nephrologists to help counsel patients on reproductive health include the effect of CKD on fetal development and disease progression after pregnancy. Despite some communication barriers, patients are open to nephrologist recommendation on reproductive health. Educational tools and nephrologist-patient discussions could improve shared decision making and improve reproductive outcomes for CKD patients.

People with chronic kidney disease (CKD) face distinct reproductive health and pregnancy decision-making challenges.¹ Specifically, irregular menses, reduced fertility, and sexual dysfunction can occur in more advanced stages of CKD or when glomerular diseases are active.² In addition, patients with CKD are more likely to have adverse pregnancy outcomes including pre-eclampsia, preterm birth, and severe maternal morbidity.³ For patients with CKD stage III-V, pregnancy is associated with disease progression as well.⁴ Further adding complexity, many patients who are able to become pregnant may also be treated with teratogenic medications such as angiotensin-converting enzyme (ACE) inhibitors, angiotensin receptor blockers (ARBs), or immune-suppressive agents (eg, mycophenolate mofetil), and more recently, glucagon-like peptide-1 (GLP-1) receptor agonists and sodium–glucose cotransporter-2 (SGLT2) inhibitors are also not recommended in pregnancy.5, 6, 7 Women with CKD say they face many uncertainties about potential health risks in pregnancy and need better support from nephrologists to make informed decisions about pregnancy and contraception.^8,9 There is increasing awareness in nephrology amongst providers and professional societies of the importance of reproductive health counseling and management; however, prior studies have shown that nephrologists may lack confidence in this type of counseling and may not frequently discuss it.^8,10,11 Thus, improved shared decision making has been advocated for reproductive health counseling for patients with CKD.¹²

Shared decision making is the process of sharing information between a clinician and patient to support the patient in making informed decisions aligned with their preferences and values.13, 14, 15 Decision aids may help the decision-making process by empowering the patient with knowledge about their disease and give providers a template to start a conversation.^16,17 Decision aids improve knowledge, help patients weigh the risks and benefits of highly preference-sensitive decisions, and have proven useful when patients face uncertainty.^13,18 In nephrology, several shared decision-making models and decision aids support treatment decisions in kidney failure which have shown improved health-related quality of life, but there are few examples of decision aids in pre-dialysis CKD.19, 20, 21 Decision aids about reproductive health have been developed for use in several other chronic conditions. These helped prompt conversations to improve medical readiness for pregnancy and improved patient knowledge and decreased decisional conflict; however, no current decision aid has been created for CKD specifically.22, 23, 24 A reproductive health decision aid could empower patients with CKD with knowledge about pregnancy and contraception which are critically important and preference-sensitive decisions.^8,25, 26, 27, 28 To help patients with CKD make informed decisions about their reproductive health that align with their values, it is necessary to understand more broadly their educational needs and priorities about pregnancy, contraception, and other important aspects of reproductive health.^9,29

The objective of this research is to understand the educational needs about reproductive health among a diverse sample of women with CKD to guide future tools to support informed and shared decision making. To accomplish this objective, we administered an online survey to female sex-assigned-at-birth individuals aged 18-45 years with CKD from several sources across the United States to query topics of greatest education need regarding pregnancy, contraception, fetal health, and fertility as well as communication preferences.

Methods

Study Design, Measures, and Procedures

A cross-sectional survey was designed to help inform future decision aids about reproductive health in CKD. Items were adapted from existing measures or created from what was learned in a prior exploratory qualitative study.⁸ Questions focused on the participant’s degree of satisfaction with their current knowledge and prioritizing areas for additional education. Knowledge satisfaction was measured using 7 items asking participants to rate their satisfaction with what they know about kidney disease and reproductive health topics (for example, risks in pregnancy, kidney disease treatment in pregnancy, contraception, care coordination) from 1 (not at all satisfied) to 5 (very satisfied). Education needs were gathered by participants ranking their top 3 priorities for more information. Participants were provided with a list of 11 reproductive health topics and permitted to write-in additional priorities. Questions about communication preferences and barriers, pregnancy intentions, health and pregnancy history, and demographics were also collected. Demographics were self-reported. Health literacy was measured using one question, “How often do you have someone help you read hospital materials?”, from Chew et al³⁰ screening scale. Most questions were multiple choice, although some allowed open-ended write-in responses (complete survey available in Supplementary Materials, Item S1).

All items were revised iteratively with input from experts in decision making in medicine and reproductive health care in kidney and other chronic diseases. The survey underwent cognitive interviewing with 8 patients with CKD by telephone or on Zoom before being distributed. Each patient reviewed half of the items to help maintain engagement and limit interview duration. Each item was individually reviewed and interviewees were asked (1) how they would answer the question; (2) what they thought about the question and why they chose that answer; (3) whether answering the question was easy or hard and why; (4) whether response options were appropriate and, if not, how to improve them; and (5) was this an important question to ask people with CKD? Participants were probed to explain their responses and detailed field notes were kept.³¹ After cognitive interviews were complete, responses were summarized across the participants and were used to guide final item revisions.

Participant Selection/Recruitment

English speaking people who were female sex-assigned-at-birth (as self-reported by participants) with self-identified CKD, not receiving dialysis or with transplant, between the ages 18-45 years old, and located within the United States were eligible to participate.

Participants were recruited via email through a US academic nephrology clinic, the CureGlomerulonephropathy study–a longitudinal study of people with primary glomerulonephropathy, the National Kidney Foundation (NKF), and NephCure.32, 33, 34 NKF and NephCure also posted recruitment materials on their social media platforms. Potentially eligible participants were emailed a maximum of three times. Recruitment and data collection occurred between March 2022 and February 2023.

All potentially eligible participants were required to complete online screening questions to confirm their eligibility, followed by informed consent. Once completed, a unique survey link was sent to the email address provided in the consent. On survey completion participants received a $20 incentive as a thank you for their time. This study was approved by the University of Michigan Institutional Review Board (HUM00210690).

Data Analysis and Interpretation

Study data were collected and managed using REDCap electronic data capture tools hosted at University of Michigan.^35,36 Data analysis took place from May to August 2023. Descriptive statistics were used including mean and standard deviation or median and interquartile range for continuous variables as appropriate and frequency and percentage for categorical variables. An a priori model of participant characteristics–pregnancy history, health literacy, prior reproductive health counseling experience, desired information, objective knowledge, reproductive goals, and CKD stage and etiology–that could be associated with perceived satisfaction with one’s own degree of knowledge was constructed based on prior literature (Fig 1).^37,38 Knowledge satisfaction scores were averaged across all individual items to create an overall knowledge satisfaction score, and linear regression was used to examine the association between overall knowledge satisfaction and the variables in the a priori model.

Figure 1.

A priori model of patient characteristics which may be associated with reproductive health knowledge satisfaction in CKD.

The proportion of participants ranking each educational need in the “top 3” was described. For any write-in responses, KD and ALO performed content analysis to identify any additional themes. To explore whether reproductive health education could be tailored based on patient-specific variables such as disease characteristics or pregnancy intentions, univariate and multivariate logistic regression was performed to examine for associations between patient characteristics from the a priori model and the 6 most frequently indicated educational topics.

Communication preferences and barriers were analyzed descriptively. A question about barriers to discussing reproductive health with your nephrologist allowed participants to select all that applied and included a write-in option. All write-in responses were analyzed by KD and ALO for any common themes to identify additional barriers.

All statistical analyses were conducted in R and findings with P < 0.05 were considered statistically significant.

Results

The screening questions were accessed a total of 644 times, of which 378 people were eligible, and 242 completed the consent form. Two hundred and eight participants completed the survey entirely, and one partially completed the survey for a total of 209 surveys for analysis (Fig 2). The completion rate of those who screened eligible was 55% (209/378), and that of consented participants was 86% (209/242). Participant demographics and clinical characteristics are shown in Table 1. The average time to complete the survey was 12.2 minutes.

Figure 2.

Flow diagram of participant recruitment and survey completion.

Table 1.

Participant Demographics and Clinical Characteristics

	Total (N)	Median or Count	IQR or %a
Age	209	35	[29-41]
Race	207
Asian		9	4%
Black or African American		22	11%
Native Hawaiian or Pacific Islander		1	0%
White		160	77%
Other		4	2%
More than one race		8	4%
“Prefer not to say” or unknown		3	1%
Hispanic ethnicity	207
Yes		23	11%
“Prefer not to say” or unknown		1	0%
Education level achieved	208
12 years or completed high school or GED; or 8-11 years		30	14%
1-3 years of college or vocational, technical or business training		40	19%
4 or more years of college or graduated from college or attended graduate or professional school		137	66%
“Prefer not to say” or unknown		1	0%
Health literacy (How often do you have someone help you read hospital materials?)	208
Never		160	77%
Ever (includes occasionally, sometimes, often, and always)		48	23%
Insurance	208
Insurance through job or union		133	64%
Medicaid		32	15%
Private insurance purchased by participant or someone else		16	8%
Other insurance (Veteran’s Health/Tricare, county health plan, unknown, or other unspecified)		11	5%
More than one insurance		16	8%
Income	208
Less than $50,000 per year		61	29%
$50,000 to $99,999 per year		58	28%
More than $100,000 per year		68	33%
Unknown or not reported		21	10%
Sexual orientation	207
Heterosexual		176	85%
Bisexual		18	9%
Gay or lesbian or other QIA+		7	3%
“Prefer not to say” or unknown		6	3%
CKD diagnosis	208
Cystic kidney disease of any type		36	17%
Primary nephrotic syndrome		33	16%
IgA nephropathy		31	15%
Lupus		18	9%
Other autoimmune disease		12	6%
Hypertension		10	5%
Hereditary nephritis (Alport)		8	4%
Diabetes		6	3%
Urologic disease		7	3%
Nephrolithiasis, AKI		7	3%
Other		23	11%
“I don’t know” or unknown		17	8%
Glomerular Disease	208
Yes		102	49%
CKD Stage	208
Stage 1		62	30%
Stage 2		41	20%
Stage 3		52	25%
Stage 4		20	10%
Stage 5		8	4%
“I don’t know” or unknown		25	12%
Gravidity	204
Nulligravid		71	35%
Parity	124
Nulliparous		16	13%
Parous		108	87%
Surgical Sterilization	209
Yes		38	18%

Abbreviations: AKI, acute kidney injury; CKD, chronic kidney disease; GED, General Educational Development; IQR, interquartile range; %, percentage; N, number of participants; QIA+, queer, intersex, asexual, and other sexual orientations.

Knowledge Satisfaction

Participant knowledge satisfaction about kidney disease and its relationship with fertility, pregnancy risk, fetal development, medication interactions with pregnancy, disease progression or change, contraception, and coordinating care with an obstetrician/gynecologist are shown descriptively in Figure 3. Notably, only 32% (n = 67) of participants were moderately to very satisfied (4 or 5 on the 5-point scale) with their knowledge about how kidney disease may affect their birth control options; 29% (n = 60) and 36% (n = 75) were moderately to very satisfied with their knowledge of how kidney disease can affect a baby’s development and their own health, respectively, during pregnancy. Thirty-six percent were moderately to very satisfied with their knowledge about how pregnancy could affect their kidney disease, and less than one-third (29%) were moderately to very satisfied with their knowledge about how to coordinate between their kidney doctor and obstetrician/gynecologist.

Figure 3.

Participant knowledge satisfaction about reproductive health topics with CKD. ∗Denotes those who are moderate or very satisfied with current amount of knowledge about reproductive health topics.

Univariate comparison of patient characteristics with average knowledge satisfaction score (Table 2) initially revealed that participants who were planning a pregnancy were less satisfied with their knowledge compared with those who were not planning or were unsure about future pregnancies (β, –0.40; 95% confidence interval (CI), −0.70 to −0.10, P = 0.009); however, this was not significant after adjustment for other patient characteristics (β, −0.30; 95% CI −0.70 to 0.10; P = 0.19). Those with glomerular disease had higher overall knowledge satisfaction (β, 0.30; 95% CI, 0.01-0.50; P = 0.04) compared with those without a glomerular disease etiology, but this was not significant after multivariable analysis (β, 0.30; 95% CI, −0.01 to 0.60; P = 0.12). After adjustment, the only participant characteristic that remained independently associated with knowledge satisfaction was health literacy: those who ever needed assistance with reading hospital materials had lower overall knowledge satisfaction compared with those who never needed assistance (β, −0.5; 95% CI −0.9 to −0.02; P = 0.04). At baseline, health literacy was associated with race, CKD stage, and education level (P = 0.01, P = 0.02, and P = 0.03, respectively; Table S1); however, overall knowledge satisfaction was only associated with health literacy in the multivariable model.

Table 2.

Univariate and Adjusted Associations of Overall Knowledge Satisfaction With Reproductive Health Information With CKD

Comparison	Estimated Univariate Effect	Lower Limit for Univariate Effect	Upper Limit for Univariate Effect	P	Estimated Adjusted Effect	Lower Limit for Adjusted Effect	Upper Limit for Adjusted Effect	Adjusted P
Multigravida vs nulligravid	0.20	−0.10	0.50	0.17	0.04	−0.40	0.40	0.86
Planning a pregnancy vs not or unsure	−0.40	−0.7	−0.10	0.009	−0.30	−0.70	0.10	0.19
CKD stage 1-2 vs CKD stage 3-5	0.20	−0.04	0.50	0.10	0.20	−0.20	0.50	0.37
Glomerular disease vs nonglomerular disease	0.30	0.01	0.50	0.04	0.30	−0.10	0.60	0.12
Additional year of age	0.02	−0.002	0.03	0.087	0.002	−0.03	0.03	0.90
Race
Asian/Native Hawaiian/Pacific Islander vs White	–0.30	−0.90	0.40	0.39	0.40	−0.70	1.40	0.47
Black or African American vs White	−0.20	−0.60	0.20	0.38	−0.20	−0.80	0.40	0.51
Other or more than one race or prefer not to say vs White	−0.10	-0.60	0.40	0.69	−0.30	−0.90	0.40	0.42
Hispanic or Latinx vs non-Hispanic/Latinx	−0.001	−0.40	0.40	1.00	−0.01	−0.60	0.60	0.96
Education
College vs vocational/high school	−0.02	−0.40	0.40	0.90	−0.40	−0.90	0.20	0.21
Graduate or professional school vs vocational/high school	0.02	−0.40	0.40	0.91	−0.40	−1.10	0.20	0.17
Income (annual household income)
Less than $50,000 vs $50,000-$99,999	−0.03	−0.40	0.30	0.85	−0.02	−0.50	0.40	0.93
More than $100,000 vs $50,000-$99,999	0.03	−0.30	0.40	0.85	0.03	−0.40	0.50	0.90
Assistance with reading hospital materials: ever vs never	−0.20	−0.6	0.10	0.16	−0.50	−0.90	−0.02	0.04

Abbreviations: CKD, chronic kidney disease.

Ranking Educational Needs

The top 3 ranked education needs were describing how fetal development may be affected by the birthing parents’ kidney disease, how kidney function can change after pregnancy, and how kidney disease can affect menstrual periods. Education on contraception in CKD and describing how medications may influence fertility or be harmful in pregnancy were lower patient priorities for education (Fig 4). Write-in responses did not yield additional frequently prioritized topics. Associations of individual participant characteristics with the 6 most frequently indicated educational needs were explored (Tables S2-S7). In univariate analyses, those who indicated they were planning a pregnancy consistently had higher odds of indicating they want information about fetal development, kidney function change after pregnancy, kidney disease and menses, and kidney disease and fertility. Those with a prior pregnancy had lower adjusted odds of indicating they wanted education about how kidney disease is treated in pregnancy (adjusted odds ratio (aOR), 0.36; 95% CI, 0.14-0.87; P = 0.03); this information trended toward being more highly sought by those with glomerular disease (odds ratio (OR), 1.78; 95% CI, 1-3.22, P = 0.05); however, this was not significant after multivariable adjustment (aOR, 1.80; 95% CI, 0.83-4.00, P = 0.14). Exploring other associations of patient characteristics with educational needs, age was associated with educational need only for menopause information. Each additional year associated with 1.2 times higher odds of indicating this as a priority (aOR, 1.2; 95% CI, 1.1-1.4, P = 0.001), whereas those planning a pregnancy had lower odds of wanting this information (aOR, 0.03; 95% CI, 0-0.18, P < 0.001).

Figure 4.

Ranked reproductive health education needs in CKD. Footnote: Numbers may not be the sum of first priority, second priority, and third priority because some participants gave multiple priorities to the same item.

Communication Preferences and Barriers

One-third (33%; n = 69, Table 3) of participants indicated it would not occur to them to talk to their nephrologist about reproductive health. This was the most common barrier to reproductive health counseling in nephrology clinics. Encouragingly, 29% (n = 61) of participants indicated that there was no perceived barrier talking to their nephrologist about reproductive health. Less frequently, participants selected gender discordance between the patient and nephrologist (20%), lack of established relationship (16%), or awkwardness (11%) hindered these discussions. Open-ended responses were rare, with participants contributing four additional barriers that were thematically summarized as “my doctor doesn’t have the data, knowledge, or comfort in this topic,” “my doctor is of a different racial or ethnic identity,” “does not feel relevant to me because of sexual partners, infertility, or other reason,” and “lack of support from nephrologist about pregnancy.” Despite the barriers, 77% (n = 161/208) indicated they were open or very open to receiving a recommendation about when to try to become pregnant from their nephrologist, and 76% (n = 159/208) were open or very open to receiving a contraception recommendation from their nephrologist.

Table 3.

Reproductive Health Communication Preferences and Barriers Among People with CKD

	Total (N)	n (%)
Preferred format to receive reproductive health information	208
Website		106 (51%)
Discussion with physician		44 (21%)
Paper pamphlet or handout		36 (17%)
Video		13 (6%)
Phone application		4 (2%)
Email		2 (1%)
Other		3 (1%)
Openness to recommendations from nephrologist about pregnancy timing (1 = not all open, 5 = very open)	208
1 (not at all open)		18 (9%)
2		8 (4%)
3		21 (10%)
4		39 (19%)
5 (very open)		122 (59%)
Openness to recommendations from nephrologist about forms of birth control? (1 = not all open, 5 = very open)	207
1 (not at all open)		13 (6%)
2		7 (3%)
3		28 (14%)
4		34 (16%)
5 (very open)		125 (60%)
Barriers to communication about reproductive health with nephrologist	208
It would not occur to me to discuss it with them		69 (33%)
No perceived barrier		61 (29%)
They are a different gender from myself		43 (21%)
I have more important issues to talk about with them		42 (20%)
I do not have an established relationship with them		34 (16%)
I feel awkward bringing up the topic		22 (11%)
My doctor does not have the data, knowledge, or comfort in this topic		7 (3%)
Other factors		5 (2%)
Does not feel relevant or does not apply to me		4 (2%)
Lack of support from nephrologist about pregnancy		4 (2%)
Different racial or ethnic identity from their nephrologist		1 (0%)

Participants were asked in which format they would like to receive reproductive health and kidney disease education, and over half of the sample preferred a website (n = 106, 51%). The second most selected modality was “discussion with your physician” (n = 44, 21%) (Table 3). Across different demographics and CKD stages, the majority of participants still preferred a website (Table S8).

Discussion

This survey found that a majority of people with CKD were not highly satisfied with their current degree of knowledge about how their kidney disease could affect their reproductive health including pregnancy management and outcomes as well as contraception options. Specifically, those who were planning for pregnancy reported lower satisfaction with their knowledge, as did those with lower health literacy. Lack of awareness about the relevance of kidney disease to reproductive health, having other pressing issues to discuss with their nephrologist, and gender discordance were barriers to seeking this information in the nephrologist’s office. This study adds a new understanding that the majority of reproductive-aged women with CKD are open to recommendations about pregnancy timing and contraception from their nephrologist. Furthermore, most participants preferred reproductive health education via websites and face-to-face discussions with their physicians, similar to prior studies.^39,40 These findings suggest that interventions aimed to improve reproductive health education and prompt patient-centered care for pregnancy planning and contraception in CKD would be welcomed by patients in their nephrology clinics.^41,42

This study adds patient-prioritized topics for reproductive health education for people with CKD, extending from prior qualitative work and cognitive interviewing with the target population, validating earlier findings in a larger population.³⁷ Namely, participants focused most on increasing education about the impact of kidney disease on a potential fetus and on menstrual periods as well as the impact of pregnancy on kidney disease progression. Interestingly, we found contraception education was not in the top priorities of participants in our survey despite that almost half were not highly satisfied with their knowledge of how CKD affects their birth control options. Recent literature also suggests that more effective forms of contraception are infrequently used among people with CKD.^39,43,44 Increased frequency of sexual dysfunction or decreased frequency of sexual activity in CKD may play a role in patients’ perceptions of potential importance of contraception. A small Canadian study found 53% of female participants aged 18-51 years with CKD were not sexually active in the last month, whereas rates of sexual activity are much higher in the general population.^45,46 Additional work to understand motivations and barriers to contraceptive use may help tailor contraceptive counseling and education materials relevant for CKD to meet patients’ values, especially for those who desire to avoid pregnancy or to optimize their health in the preconception period.

To understand if there are individual characteristics that could help identify what education is most salient, we undertook a series of analyses examining the associations of individual patient characteristics with the most highly and frequently ranked reproductive health education topics. Perhaps unsurprisingly, those who wanted a pregnancy in the future had higher odds of prioritizing education about fetal development, kidney function after pregnancy, and how their kidney disease may affect their menses. An important aspect of tailoring reproductive health education is understanding someone’s desires for pregnancy or for pregnancy prevention; however, prior studies show this is not consistently done by nephrologists.¹⁰ In a survey from Australia, only 61% (79/130) women with CKD or kidney failure had discussions about pregnancy with their physicians, of those only 26% were initiated by their nephrologist.⁹ Crucially, 14.7% of these discussions occurred for the first time after conception, missing the opportunity to optimize health preconception.⁹

Our study also adds a new perspective that one of the greatest barriers to receiving reproductive health counseling relative to kidney disease is lack of awareness among patients that they should talk to their nephrologist about it. A recent single-center survey of women with CKD and kidney failure found that the majority of women never discussed pregnancy intentions or birth control with their nephrologist or other healthcare provider at their kidney clinic.⁴⁷ In that study, less than one-third of patients desired a conversation about reproductive health with their nephrologist; however, this increased to 63% when limited to those planning a future pregnancy.⁴⁷ To overcome barriers to counseling, patient preferences for reproductive health care and pregnancy intentions can be elicited with simple tools. One Key Question® asks if someone wants to be pregnant in the next year, and can improve the frequency and quality of family planning.48, 49, 50 The Self-Identified Need for Contraception single item screening tool assesses a person’s needs for specific reproductive health services or counseling on a given day.⁵¹ A lupus-specific decision aid has also been developed for family planning in rheumatology clinics and was found to be beneficial in ascertaining reproductive health goals and guiding providers to follow guidelines for preconception and contraception care.²² Our findings support developing tools that prompt elicitation of patient preferences for counseling and their reproductive goals in nephrology clinics, as most of our participants were open to these recommendations.

Limitations of this study include a convenience sampling strategy and potential for selection bias; individuals who participated may have a greater interest in reproductive health than the CKD community at large. Online survey delivery may have contributed to overrepresentation from higher educational and socioeconomic backgrounds, which may limit generalizability as well, especially given that 51% of survey respondents wanted to receive reproductive health education online. However, 97% of people aged 18-45 years have access to the internet, email, and/or smartphones, and our distribution strategy included several large patient advocacy and research organizations to help improve diversity in our sample.⁵² Furthermore, education is highly-context sensitive. This study was conducted in the United States and only in English, which limits our generalizability. Finally, we did not assess objective knowledge. However, it is an important limitation because a perceived knowledge gap may not be associated with an actual knowledge gap. However, our intent was to examine knowledge satisfaction as a component of preparedness for decision making.⁵³

In conclusion, our study highlights significant room for improvement in reproductive health education and counseling in CKD care. Those most at risk for feeling unsatisfied with their reproductive health knowledge in CKD are patients with lower health literacy and those planning a future pregnancy; thus, these are subpopulations that interventions should initially target for additional support. Interventions that support delivering relevant patient education online and facilitating discussion with their nephrologists may help achieve the patient-centered and shared decision-making approaches that are recommended for all individuals toward the goal of healthier pregnancies when desired and reducing undesired or mistimed pregnancies.^54,55

Supplementary Materials

Supplementary File (PDF)

Figure S1; Item S1; Tables S1-S8