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

NCT07690202 | Recruiting

• 1 other identifier: 25-0354
• Study Type: observational
• Target: 12
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Renal Insufficiency, Chronic

Keywords

Chronic kidney disease; Women of childbearing age; Lived experience; Interpretative Phenomenological Analysis (IPA)

Outcome Measures

Primary Outcomes (1)

• Lived experience of chronic kidney disease in women of childbearing age (without renal replacement therapy)

  Exploration of participants' lived experience of CKD, including perceptions of the disease, impact on daily life, and influence on future life plans, collected through semi-structured interviews and analysed using Interpretative Phenomenological Analysis (IPA).

  Baseline (single study visit)

Secondary Outcomes (3)

• Impact of chronic kidney disease etiology (genetic vs non-genetic) on lived experience

  Baseline (single interview)

• Emergent themes related to sexual and reproductive health

  Baseline (single interview)

• Health-related quality of life (KDQOL-36)

  Baseline (single interview)

Study Arms (2)

Genetic CKD group

Women of childbearing age diagnosed with chronic kidney disease (CKD) of confirmed or suspected genetic etiology, not receiving renal replacement therapy (i.e., not on dialysis orkidney transplantation).

Non-genetic CKD group

Women of childbearing age diagnosed with chronic kidney disease (CKD) of non-genetic etiology, not receiving renal replacement therapy (i.e., not on dialysis or kidney transplantation).

Eligibility Criteria

• Age: 18 Years+
• Sex: female
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Women of childbearing age with chronic kidney disease (CKD) not receiving renal replacement therapy (i.e., not on dialysis or kidney transplantation), followed at Caen University Hospital (CHU de Caen). Participants will be divided into two groups according to CKD etiology: genetic and non-genetic.

You may qualify if:

• 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

You may not qualify if:

• 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)
• Patients with comorbid conditions other than chronic kidney disease that may interfere with the study objectives (e.g. conditions affecting fertility)

Sponsors & Collaborators

• University Hospital, Caen: lead

Study Sites (1)

Centre Universitaire des Maladies Rénales (CUMR), Caen University Hospital

Caen, 14000, France

RECRUITING

MeSH Terms

Conditions

Renal Insufficiency, Chronic

Condition Hierarchy (Ancestors)

Renal Insufficiency; Kidney Diseases; Urologic Diseases; Female Urogenital Diseases; Female Urogenital Diseases and Pregnancy Complications; Urogenital Diseases; Male Urogenital Diseases; Chronic Disease; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Study Officials

• Antoine Lanot, MD

  University Hospital, Caen

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Tauc Florence, PharmD candidate

CONTACT

+33682753772; florence.tauc@etu.unicaen.fr

Antoine Lanot, MD

CONTACT

+33231272343; lanot-a@chu-caen.fr

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 1, 2026
• First Posted: July 8, 2026
• Study Start: June 30, 2026
• Primary Completion (Estimated): August 1, 2027
• Study Completion (Estimated): August 1, 2027
• Last Updated: July 22, 2026

Record last verified: 2026-05

Data Sharing

• IPD Sharing: Will not share

Locations

FR (1)