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Updated: Jun 7, 2025
Use of Ultra-high Field MRI in Small Rodent Models of Polycystic Kidney Disease for In Vivo Phenotyping and Drug Monitoring
Published on: June 23, 2015
Perspectives of Patients and Clinicians on Reproductive Health Care and ADPKD
Margriet E Gosselink1,2, Robin Mooren1,2, Rozemarijn Snoek1,2
1Department of Clinical Genetics, University Medical Centre Utrecht, Utrecht, the Netherlands.
Introduction:
Family planning and reproductive care are essential but complex aspects of lifecycle management for individuals with autosomal dominant polycystic kidney disease (ADPKD), given the potential genetic transmission and pregnancy-related complications. In this qualitative study, we studied the experiences and perspectives of patients with ADPKD and clinicians to identify areas for potential improvement in reproductive lifecycle care.
Methods:
Focus group discussions (FGDs) were conducted in the Netherlands with patients with ADPKD, both men and women, who had children through varied reproductive choices; and clinicians, including (pediatric) nephrologists, obstetric gynecologists and 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 6 key themes. These included the need for timely and comprehensive information dissemination from puberty on, 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.
Conclusions:
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 health care services for individuals with ADPKD.
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