Communicating an ADPKD diagnosis: putting the patient experience at the heart of care

Receiving an ADPKD diagnosis is a life-changing experience for the person affected and their entire family. The sensitivity and clarity with which the news is communicated can have a lasting impact.

A diagnosis of autosomal dominant polycystic kidney disease (ADPKD) can bring questions about health, children, family planning, and the years ahead. For patients and families, understanding what the diagnosis means requires more than medical information: it calls for empathy, time to ask questions, and a clear plan for support.

A study published in Clinical Kidney Journal puts these experiences in the spotlight, highlighting opportunities to improve how an ADPKD diagnosis is communicated. [1] --->Read the full article

Listening to patients’ experiences

The study gathered responses from 1,021 adults with self-reported ADPKD in France through an online survey conducted between 2019 and 2024. Participants, recruited through patient organisations, described how they were diagnosed, who first told them, and how they experienced that conversation.

Almost half received their diagnosis from a radiologist, compared with 22% from a nephrologist. One in four reported a lack of tact, and almost one in three described a very negative diagnostic experience. Poor tact and inadequate information were both associated with a very negative experience. In addition, 40% reported delayed or absent nephrology follow-up.[1]

These findings cannot establish cause and effect, and respondents’ experiences may not represent everyone living with ADPKD. Nevertheless, they highlight a part of care that deserves greater attention.

Education matters on both sides of the conversation

From a patient perspective, a diagnosis should come with understandable information, compassionate communication, and a clear route to specialist care. Patients should have the opportunity to discuss their concerns, understand the implications for their family, and know where to turn for further guidance and emotional support.

For PKD International, this study reinforces an important message: educating young doctors and the wider medical community is just as essential as educating patients and families. This includes professionals outside nephrology, who may be the first to identify ADPKD and communicate the diagnosis.

Alongside advances in diagnosis and treatment, we must ensure that patients and families feel informed, heard, and supported from the outset. Preparing healthcare professionals to communicate an ADPKD diagnosis with sensitivity and clarity is an essential part of that commitment.

This study was made possible thanks to the support of Association Polykystose France, highlighting the valuable role patient organisations play in advancing research into the experiences of those they represent. We thank all the authors, including PKD International Board member Fadi Haidar, for bringing attention to this important aspect of care.

Good care begins with that first conversation.

Read the research

[1] Djadda M, Haidar F, Guirchoun P, Sarthou-Lawton S, Coscoy S, Joly D. Diagnostic disclosure, communication quality, and patient experience in autosomal dominant polycystic kidney disease. Clinical Kidney Journal. 2026;19(10). Read the full article.