Perspectives of Patients and Clinicians on Reproductive Health Care and ADPKD

Abstract

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.

Keywords: autosomal dominant polycystic kidney disease (ADPKD); family planning; focus group; qualitative study; reproductive care.

Graphical abstract

Figure 1

Overview of the main themes and their connection. In this qualitative study on family planning and reproductive care in ADPKD patients, 6 main themes were found. First, to improve reproductive care for patients with ADPKD, “timely information” from puberty onwards is key. Second, insight in “patient factors influencing decision-making” is necessary to provide tailored guidance to patients during this process. Third, this “psychosocial guidance and communication” can be improved throughout the entire reproductive period. Fourth, it is important to “take care of missed patients at risk”: a patient group with 50% risk of inheriting ADPKD, resulting from natural conception in individuals diagnosed with ADPKD. In addition to monitoring, with the possibility of early treatment of disease manifestations and information, these patients should also receive timely information on family planning and reproductive care. Fifth, encompassing the entire lifecycle, there is an undesirable situation of “inequity in access to care” which should be minimized. Lastly, encompassing the entire lifecycle as well, (reproductive) care for ADPKD patients could be improved by enforcing “multidisciplinary collaboration” and consensus. ADPKD, autosomal dominant polycystic kidney disease.

Figure 2

Timeline of reproductive care for clinicians, meeting patients’ needs according to the main themes of this study. Themes above the black line are divided by reproductive phase (prepregnancy, during pregnancy, and postpregnancy). Themes below the black line are important during all reproductive phases. Regarding “patients at risk for ADPKD,” it refers to individuals with a 50% risk of ADPKD that do not yet have an established diagnosis. ADPKD, autosomal dominant polycystic kidney disease.