Patient and Caregiver Perspectives on Gender Disparity in Chronic Kidney Disease: Questionnaire Survey, Based on an Interview Study

Chronic kidney disease (CKD) is a rising global health challenge that in stages 3–5 without albuminuria occurs more often in women than in men [1], yet the majority of patients initiating and undergoing kidney replacement therapy (KRT) are men [2‒4]. Factors contributing to this shift have been considered for many years; however, the previously permissive use of the terms “sex” (biological constructs) and “gender” (social and cultural constructs) has complicated the consideration of their individual impacts [5, 6]. As early as 1987, Kjellstrand et al. [7] attributed the lower incidence and prevalence rates of women on maintenance dialysis to racial and age discrimination and injustice between sexes. Other potential reasons for the historically stable 60:40 male-to-female incidence ratio on KRT [3] include men’s quicker progression from CKD to kidney failure [2, 8‒13] and death [12, 14‒16], women’s lower awareness of CKD [17], higher preference for conservative care [18, 19], and adherence to caretaker roles in families [20, 21].

The concepts of injustice and inequality have been revisited in the last decade, now with a deliberate distinction between sex and gender [22, 23]. Decline in the estimated glomerular filtration rate was found to occur faster in patients of male sex [8]. Higher proinflammatory effects of testosterone, lower protective traits of estrogen, differences in nitric oxide production, and specific cardiovascular risk are biological factors that might explain the differences in the pace of progression between both sexes [1, 2]. From a gender perspective, constrained economic power, social standing, cultural norms, and conflicting obligations regarding child or elder care might hinder women from accessing appropriate kidney healthcare [22]. Lack of self-reflection concerning therapy compliance and higher stress, anxiety, or depression levels were further traits linked more often to women on dialysis than to men [24, 25]. In the extended context of kidney transplantation, women’s motivation for kidney donation or delayed transplantation was attributed to potential pressure under a patriarchal system, to economic considerations revolving around the notion of men as main providers, and also to higher levels of altruism in women [22, 26‒29]. Women were described as less knowledgeable about their kidney disease and its treatment options than men [30], while physicians were found to unintentionally address the issue of transplantation less often in women [27, 31], partially due to perceiving women as frailer than men especially with rising age [21, 32, 33].

Aiming to identify further gender-related aspects of kidney disease care, we recently conducted semi-structured interviews with patients in all stages of CKD and their caregivers to determine their perspectives on gender differences in CKD (submitted undergoing review) [34]. Therein, 5 core concepts of gender similarities and disparities between men and women were described. (i) Both men and women experienced “disruption of their identity and their sense of self” [34]. (ii) Men appeared more likely to place the burden of care on others, while (iii) women fulfilled traditional gender roles through childcare and housework [34]. (iv) Women presented as “disadvantaged and vulnerable” by claiming to feel intimidated and left to fend for themselves but also gave indication of (v) assessing their health situation better than men by addressing health challenges sooner, critically scrutinizing medical advice, and adhering to recommendations more rigorously than men [34].

To suggest that women might not be extrinsically restricted in their CKD care but might rather time the initiation of these interventions in a reasoned manner provided a novel viewpoint for gender research in CKD. Building upon these findings [34], a questionnaire for both patients and caregivers was composed to address these identified gender aspects and quantify their impact on and perception of kidney disease care in Austria.

Study design: this quantitative questionnaire-based study was built upon the findings and concepts we had previously described [34], by employing the principles of grounded theory to the output from our semi-structured interviews (cf. online supplementary files for methodology of interview study; for all online suppl. material, see https://doi.org/10.1159/000540850). The questionnaires were designed to quantify the impact of the five core themes identified therein. Two separate questionnaires, one for the patients and one for their caregivers, were developed by five authors (M.L., M.S., L.V., D.G., M.H., and A.J.). These questionnaires encompassed 39 items for both patients and caregivers and comprised similarly phrased questions, mostly predefined answer possibilities, and a short demographic data inquiry (original German questionnaires in online suppl. Fig. 1, 2). All the authors reviewed the final questionnaires before distribution to ensure content validity.

Recruitment and data collection: roughly one thousand questionnaires were sent to eight participating nephrology outpatient clinics in Austria (University Hospital Vienna, University Hospital St. Pölten, University Hospital Graz, Kepler University Hospital Linz, University Hospital of Innsbruck, Clinical Center Wels-Grieskirchen, Hospital Klinikum-Klagenfurt, Feldkirch Hospital). Questionnaires were distributed in German to patients and caregivers. These questionnaires were preceded by a brief introductory text explaining the purpose of the study, that participation was voluntary and could be discontinued at any time, and that the data collection was completely anonymous. The Ethics Committees did not require a signed consent form as no later inference about the person filling out the questionnaire was possible. Participants were selected through convenience sampling and were approached without prior selection.

This study was approved by the Institutional Review Boards of all participating research sites (EK 1363/2016 [Medical University of Vienna]; ECS 1110/2021 [University Hospitals of Karl Landsteiner Private University]; EK 1323/2020 [Medical University of Graz]; ECS 1348/2021 [Johannes Kepler University Linz]; ECS 1432/2021 [Medical University of Innsbruck]; EK-2-9/2019-33 [Federal State of Vorarlberg]; MZ 05/22 [Federal State of Carinthia]). These centers had previously participated in a study describing sex differences in the setup of their outpatient clinics [35]. The questionnaires were distributed between February 2022 and December 2022 and were successively returned to the primary investigator for the analysis. After obtaining all the survey forms, the responses were manually extracted into a tabular format and cross-checked. Data were collected anonymously.

Data analysis: minimum sample size was calculated for questions with response options “yes” and “no” by utilizing G*Power 3.1.9.4 and a two-tailed Fisher’s exact test. The specific question used for sample size calculation was “do you perceive yourself as disciplined when it comes to following medical advice?”. The null hypothesis (H0) was set at 0 and the alternative hypothesis (H1) was not equal to 0. The expected value (p1) was set to 0.5, and the observed value (p2) was set to 0.6 with an allocation ratio of N2/N1 = 1 and a level of significance (α) of 0.05. Based on these parameters, the estimated total required sample size was 808.

The patient and caregiver cohorts were considered separately and stratified by gender. The answers of respondents who chose not to disclose their gender were combined with those of respondents of non-binary gender and listed separately. The patient cohort was additionally divided based on age and CKD stage to examine their potential influence on responses. A two-sided analysis with the χ² test was performed for categorical variables and p values <0.05 were considered statistically significant. IBM SPSS Statistics version 28 was used for data processing and statistical calculations.

This study included 783 patients and 98 caregivers, the majority of whom (n = 582, 66.1%) were Austrian. The mean age of the study participants was 59.7 years (SD = 15.0 years). The patient cohort comprised 453 (57.9%) men, 323 (47.3%) women, 1 participant (0.1%) of non-binary gender, and 6 participants (0.8%) with undisclosed gender. A total of 173 patients (22.1%) were on dialysis, while 235 (30.0%) had a functioning kidney transplant. A total of 281 (35.9%) patients had CKD in various predialysis stages. For the remaining 87 patients (11.1%), the disease stage was not stated. The caregiver cohort consisted of 69 (70.4%) women, 28 (28.6%) men, and one participant (0.1%) of undisclosed gender. Demographic data for men and women patients and caregivers are listed in Table 1, and their response distributions are presented in Tables 2 and 3, respectively. The characteristics of patients with non-binary and undisclosed gender and their responses are shown in Table 4. Patient responses stratified by age range and CKD stage are provided in online supplementary Tables 1 and 2, respectively. The p values of the χ² tests that were statistically significant are listed in the respective tables next to the counts and percentages.

A key finding of this study was the perceived superiority of women in health and disease self-management. Women patients (63.1%) and men patients (56.1%) acknowledged that women take better care of their health, supported by caregiver perceptions (66.7% of men and 70.6% of women). Men and women of both the patient and caregiver cohorts agreed that women address health issues in a timely manner while men delay seeking medical councils. Notably, only a minority believed men to be more disciplined than women (4.0% of all patients and 0.1% of all caregivers), with some acknowledging communication challenges for men (25.2% women and 19.2% men patients). The inclination toward complementary and alternative medicine was higher among women patients than men patients and especially pronounced in the age-group of 30–60-year-old patients (8.1% of men, 34.9% of women, p < 0.001). Women patients (61.3%) showed more interest in seeking additional information about kidney disease than men (56.6%) and claimed to lead a healthy lifestyle more often than men (91.2% of women, 84.6% of men, p = 0.009).

Although gender differences and traditional roles were acknowledged in kidney disease care, both patients and caregivers reported no perceived unfairness. Significantly more women (50.6%) than men (37.8%) expressed a need for help from their families due to kidney disease (p < 0.001). Men claimed to do no household tasks twice as often as women (10.3% men, 5.7% women), while similar percentages of men (67.4%) and women (67.9%) believed that they could delegate household tasks if necessary. Both men and women attributed childcare primarily to women (p < 0.001); however, neither men (93.5%) nor women (94.4%) would forego dialysis treatment because of family obligations.

Both men (12.4%) and women (24.3%) patients stated to have felt intimidated by a man doctor more often than by a woman doctor (6.0% of men, 17.2% of women), with women affirming this intimidation in both cases significantly more often than men (p < 0.001), especially with increasing age. Women also reported fearing or dreading medical treatments more commonly than men (p < 0.001). Although financial difficulties were not perceived as obstacles in dialysis care by most patients, 11.1% of men patients and 12.9% of women patients stated that a difficult financial situation could cause them to reject or delay dialysis.

When asked about the quality of treatment, most patients (87.8% of men, 88.4% of women) saw no difference between men and women doctors; however, one-third of both women and men patients stated that the doctor’s gender affected their relationship with him/her. Patients were certain that their gender did not influence dialysis initiation decisions (96.5% of men, 97.3% of women).

Men and women patients (95.4% of men, 95.0% of women) as well as men and women caregivers (100.0% of men, 98.5% of women) unanimously agreed that patients with kidney disease are treated completely equally irrespective of their gender. This patients’ opinion was consistent across all age-groups and disease stages.

The third finding describes the interplay between external health determination, shared decision-making, and patients’ trust. Approximately 80% of both men and women patients felt that they had been informed about the progression and therapy options of their kidney disease in a timely manner; however, 25.5% of men and 23.3% of women patients perceived that they did not consult their kidney doctor in time. Significantly more women on dialysis than men believed that they had sought medical treatment too late (p = 0.011). The percentage of patients who felt that they had been involved into the decision to start dialysis was similar between genders (69.3% of men, 72.2% of women); however, 57.5% of men and 54.1% of women patients stated that they would not be able to refuse dialysis. Significantly more women caregivers (75.8%) than men caregivers (48.0%) believed that their relative could not refuse dialysis (p = 0.012).

A total of 69.1% of the men and 75.2% of the women patients believed that decisions concerning dialysis treatment were based on objective facts and not on the personal opinions of doctors. Especially in the post-transplant cohort, men (31.4%) attributed a doctor’s decision to personal preferences significantly more often than women (19.0%, p = 0.048). Nearly all patients (99.0% women, 96.7% men) and caregivers (100% men, 98.5% women) expressed confidence in their kidney doctors. However, 12.3% of men and 16.9% of women patients had lost trust in them in the past, while some felt that they had been forced into decisions they later regretted (7.6% of men and 6.9% of women patients).

This questionnaire study aimed to evaluate gender differences in CKD care, as perceived by patients and their caregivers. To our knowledge, this study, together with our recent qualitative research [34], is the first to examine patients’ opinions on the influence of gender on CKD care. Both respondent groups appeared to unanimously believe in complete gender equality in CKD care and did not perceive their gender as determinative in any treatment decisions. In line with our qualitative research [34], autonomous self-management of disease in women has emerged as the core finding. Its impact has proven even more substantial in our quantitative analysis, where both men and women agreed that women protect their own health better and confront health challenges more consciously than men do by gathering more information, including complementary and alternative medical therapies, or precisely adhering to medical advice.

Previous research has centered on the vulnerability and subordination of women as possible rationales for the paradoxical distribution of men and women in different stages of CKD [26]. Frailty, intimidation, traditional gender roles, and socioeconomic barriers were postulated as the reasons for the disproportionately lower representation of women in the KRT cohort [20, 22, 32]. While women in our study also more commonly claimed to feel intimidated by doctors and fearful or dread medical procedures, our results also indicate that women, once diagnosed with CKD, are perceived to handle their disease more conscientiously than men. By exhibiting a more diligent approach to managing their condition, women could potentially contribute to slowing down the progression of the disease and might consequently delay the need for dialysis. This self-management could provide an alternative or complementary explanation for the claim that women are discriminated against in accessing CKD care. Modifiable risk factors that are primarily determined by a patient’s behavior can aggravate or alleviate disease progression and therapeutic outcomes in chronic diseases [36]. Very early initiation of dialysis was found to only marginally postpone death (5.1% mortality rate reduction) despite starting 4 years earlier [37]. Even though men were more likely to undergo KRT than women (male-to-female csHR 1.41 [95% CI 1.13–1.76]), they also had a greater probability of dying without ever receiving KRT [38]. In view of this, the imperative initiation of KRT in women to compensate for the prevalence difference between men and women might not have the desired effect. Rather, in some cases, men might profit from striving to achieve the same level of self-management and health consciousness as women.

While the impact of gender on patient behavior in CKD care is increasingly acknowledged in clinical routine and treatment considerations, the impact of biological sex should not be disregarded. Known CKD risk factors affect men and women differently [24, 39], and the continuous increase in obesity, diabetes and metabolic syndrome prevalence is projected to increase the CKD population by approximately 30%–60% within the next 2 decades [22, 40‒43]. Establishing guidelines that are distinctly tailored to each sex and assessing their risk profiles separately is as important as considering the implications of a patient’s gender identity when aspiring to establish a precision-medicine approach for all CKD patients in the future.

This is of particular importance as research and clinical practice are gradually moving away from the presumption of binary sex and gender. However, data on transgender, non-binary, and gender-diverse patients with CKD are limited [1]. The finding that over 50% of transgender people reported postponing medical care due to unsatisfactory knowledge of their healthcare provider on gender-expansive care [5] calls for immediate attention. Considering kidney disease, where sex-specific clinical guidelines are still lacking, the consideration of all gender identities further challenges current clinical practices [5, 21, 44‒48]. Our analysis is one of the first on gender and CKD to include non-binary patients or patients of non-disclosed gender; however, with such low representation (n = 7) within the sample and limited comparisons from the literature, we cannot derive general hypotheses from their statements alone. The lack of appropriate literature highlights the importance of further targeted research to optimize CKD treatment and patient-centered care for transgender and non-binary individuals.

This questionnaire study relied on a convenience sampling method, wherein patients were included based solely on their willingness to participate. This random selection principle minimized selection bias by the investigator; however, sampling bias could not be ruled out. Under- or overreporting by patients in this setting is to be anticipated, making data collection via questionnaires subject to self-report bias, social desirability bias, and recall inaccuracies. Most returned questionnaires were filled in completely; in others, comprehension issues or social desirability bias might be reasons for higher numbers of missing values, which could have biased our results to some degree.

Disparities between men and women exist not only in the diagnosis, treatment, and course of kidney disease but also in its perception. Men and women agree that women manage their health and disease better than men. Both patients and caregivers were overwhelmingly of the opinion that all patients with kidney disease were treated completely equally, irrespective of gender. Acknowledging the individual importance of sex and gender in kidney health will enable more patient-centered care in the future. Being subject to ever-developing concepts, it is imperative to periodically reconsider previous notions of gender and reassess their impact to optimize current practice. Differences between men and women in self-management of diseases and health awareness have the potential to explain many observed discrepancies in CKD care and require further evaluation.

This study was approved by the Institutional Review Boards of all participating research sites (EK 1363/2016 [Medical University of Vienna]; ECS 1110/2021 [University Hospitals of Karl Landsteiner Private University]; EK 1323/2020 [Medical University of Graz]; ECS 1348/2021 [Johannes Kepler University Linz]; ECS 1432/2021 [Medical University of Innsbruck]; EK-2-9/2019-33 [Federal State of Vorarlberg]; MZ 05/22 [Federal State of Carinthia]). The Ethics Committees did not require a signed consent form as no later inference about the person filling out the questionnaire was possible.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

This study was supported by Grant No. KL754-B from the Austrian Science Fund.

L.V.: conceptualization, data curation, formal analysis, investigation, methodology, writing – original draft, and writing – review and editing. D.G.: conceptualization, data curation, formal analysis, investigation, and writing – review and editing. A.K., S.K., S.M., M.L., B.O., and T.S.: conceptualization, methodology, validation, and writing – review and editing. P.G., M.P., S.H., M.B., E.Z., B.K., M.W., K.E., I.A., and M.W.: data curation, validation, and writing – review and editing. A.J.: conceptualization, supervision, methodology, validation, and writing – review and editing. M.H.: funding acquisition, project administration, resources, supervision, conceptualization, validation, and writing – review and editing.

All data generated or analyzed during this study are included in this article and its supplementary material files. Further inquiries can be directed to the corresponding author.