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Life with chronic kidney disease for women of childbearing age, without dialysis or transplant

Explores how women of childbearing age experience chronic kidney disease through interviews.

Plain-language title generated from the registry record
Registry title: Living With Chronic Kidney Disease Without Renal Replacement Therapy: Experience of Women of Childbearing Age

Key facts

Where
Caen, FranceSee the site

Where in France

  • Centre Universitaire des Maladies Rénales (CUMR), Caen University HospitalCaen, FranceTaking people

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?
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Trial details

Who runs it
University Hospital, Caen
Trial code
NCT07690202
Record updated
22 July 2026
Original description
Chronic kidney disease (CKD) affects approximately 13% of the global population. This condition is often associated with comorbidities such as diabetes and hypertension. Although its prevalence increases with age, CKD can also affect younger individuals, particularly women of childbearing age. From the early stages, CKD may lead to female-specific clinical manifestations, such as reduced fertility, occurring at a key period of life. These clinical aspects may also be accompanied by concerns about the transmission of hereditary nephropathy and may generate a significant psychological burden. However, current knowledge regarding the lived experience of young women of childbearing age with CKD remains limited, particularly in France.Read full original descriptionShow less

Living With Chronic Kidney Disease Without Renal Replacement Therapy: Experience of Women of Childbearing Age

Chronic kidney disease (CKD) affects approximately 13% of the global population. This condition is often associated with comorbidities such as diabetes and hypertension. Although its prevalence increases with age, CKD can also affect younger individuals, particularly women of childbearing age. From the early stages, CKD may lead to female-specific clinical manifestations, such as reduced fertility, occurring at a key period of life. These clinical aspects may also be accompanied by concerns about the transmission of hereditary nephropathy and may generate a significant psychological burden. However, current knowledge regarding the lived experience of young women of childbearing age with CKD remains limited, particularly in France.

The main objective of this study is to explore the lived experience of young women with CKD who are not receiving kidney replacement therapy. In this study, lived experience refers to how participants perceive, make sense of, and integrate CKD into their daily lives and future life plans. Twelve participants with CKD, not transplanted and not on dialysis, will be recruited and divided into two groups: six women with genetically determined CKD and six women with non-genetic CKD. This grouping is justified by the fact that the etiology of the disease may profoundly influence lived experience. Genetic CKD is often associated with concerns regarding familial transmission and early medical follow-up, whereas non-genetic CKD may be perceived as an acquired condition occurring later in life. Data will be collected through semi-structured interviews based on a tailored interview guide. Transcripts will be analysed using Interpretative Phenomenological Analysis (IPA), which allows exploration of the meaning that each participant attributes to her experience.

This is an exploratory pilot study aiming to document, for the first time in France, the lived experience of young women with CKD, with a secondary focus on the potential impact of genetic versus non-genetic etiology. Particular attention will be given to themes related to sexual and reproductive health. The findings will contribute to a better understanding of this understudied population and may ultimately improve their clinical care.

Inclusion: Women aged ≥ 18 years, cisgender, and not menopausal; Patients under follow-up at Caen University Hospital for chronic kidney disease; Patients not receiving renal replacement therapy (i.e., not on dialysis or kidney transplantation); Patients who have been informed about the study and provided consent to participate.

Exclusion: Patients with comorbid conditions other than chronic kidney disease that may interfere with the study objectives (e.g. conditions affecting fertility); Patients not covered by a national health insurance system; Patients under legal protection (guardianship, curatorship, or legal safeguard); Patients with insufficient proficiency in French (spoken and written) to understand study information, participate in the interview, and complete the quality-of-life questionnaire; Patients unable to attend in-person visits at the Centre Universitaire des Maladies Rénales (CUMR).

ClinicalTrials.gov NCT07690202