Kidney Week

Abstract: SA-PO1047

The TIMING Study: Patients' and Clinicians' Perspectives on Reproductive Health Care and Autosomal Dominant Polycystic Kidney Disease

Session Information

• Women's Health and Kidney Diseases
  October 26, 2024 | Location: Exhibit Hall, Convention Center
  Abstract Time: 10:00 AM - 12:00 PM

Category: Women's Health and Kidney Diseases

• 2200 Women's Health and Kidney Diseases

Authors

• Gosselink, Margriet, Universitair Medisch Centrum Utrecht, Utrecht, Utrecht, Netherlands

Margriet Gosselink, MD, MSc

• Mooren, Robin, Universitair Medisch Centrum Utrecht, Utrecht, Utrecht, Netherlands

Robin Mooren, MD, MSc

• Snoek, Rozemarijn, Universitair Medisch Centrum Utrecht, Utrecht, Utrecht, Netherlands

Rozemarijn Snoek, MD

• Crombag, Neeltje, Universitair Medisch Centrum Utrecht, Utrecht, Utrecht, Netherlands

Neeltje Crombag, PhD

• Vos, Paul, Haga Ziekenhuis, Den Haag, Netherlands

Paul Vos

• Keijzer-Veen, Mandy G., Universitair Medisch Centrum Utrecht, Utrecht, Utrecht, Netherlands

Mandy G. Keijzer-Veen, MD, PhD

• van Eerde, Albertien M., Universitair Medisch Centrum Utrecht, Utrecht, Utrecht, Netherlands

Albertien M. van Eerde, MD, PhD

• Lely, Titia, Universitair Medisch Centrum Utrecht, Utrecht, Utrecht, Netherlands

Titia Lely, MD, PhD

Background

Family planning and reproductive care are essential yet complex aspects of lifecycle management for individuals with Autosomal Dominant Polycystic Kidney Disease (ADPKD), given the potential genetic transmission and pregnancy-related complications. This qualitative study studied the experiences and perspectives of ADPKD patients and clinicians to identify areas for potential improvement in reproductive lifecycle care.

Methods

Focus group discussions were conducted in the Netherlands with ADPKD patients, both men and women, who had children through varied reproductive choices, and clinicians, including (pediatric) nephrologists, obstetric gynecologists, geneticists. Thematic analysis, utilizing a grounded theory approach, was performed on verbatim transcriptions of recordings, followed by consensus discussions to finalize themes.

Results

Nine focus groups involving 31 participants (16 patients and 15 physicians) identified six key themes. These included the need for timely and comprehensive information dissemination, understanding patient-specific decision-making factors, improving tailored psychosocial guidance and communication, the need for systematic efforts to take care of missed (minor) at-risk patients, addressing inequities in access to care, and improving multidisciplinary collaboration.

Conclusion

This study represents the first qualitative study of patient and physician perspectives on reproductive lifecycle care for ADPKD. We present valuable insights into factors influencing patients’ reproductive decision-making, a comprehensive comparison between the perspectives of patients and clinicians on family planning, and follow-up care of minors at risk for ADPKD, and recommendations for enhancing overall care quality. Incorporating these insights into clinical care could enhance patient-centered care and foster interdisciplinary collaborations to further improve the quality of reproductive healthcare services for individuals with ADPKD.

Funding

• Private Foundation Support