This article explains what clinicians mean by “transition” and how it differs from “transfer,” why it matters for someone with ADPKD or a family history of it, what changes when you move to adult care and what does not, the skills that make the move easier, and how to start talking about it. It provides background and vocabulary, not medical advice. When your move happens and what it looks like is worked out between you, your parent or guardian, and your care team, and it depends on your health, your clinic, and where you live.

What “transition” means, and why it is not the same as “transfer”

Transfer is the event: the day your care formally moves from a pediatric clinic to an adult one. Transition is the process around it: the years of learning, practicing, and gradually taking over that come before that day, plus the settling-in period after it.[1,2] Kidney and pediatric organizations have agreed for well over a decade that transfer should be the end of a planned process, not a letter in the mail on your eighteenth birthday.[1–4]

It is meant to start early. International kidney guidance suggests introducing the idea around 12 to 14, with more information given gradually as you get older.[1] Guidance for inherited kidney conditions, including ADPKD, says the plan should be in place by about 14, or at the latest a year before you move.[2] Transfer itself most often happens around 18, though the range in practice runs from about 16 into the mid-twenties, depending on the clinic and the country.[2,4] Ideally it happens when you are ready, have finished growing, and your kidney health is stable, not in the middle of a crisis or a big change in your life.[1,2]

Why this can matter even if you feel fine

If you feel well most of the time, it is easy to assume the move to adult care is paperwork. Three things make it more than that.

First, ADPKD is lifelong, and most of what it does to the kidneys happens in adulthood. For most people your age, care so far has mostly meant checking blood pressure and doing other tests when there was a reason.[5] That follow-up does not end at 18. If anything, it matters more, which is why the 2025 international ADPKD guideline says a formal transition process should be developed for every child diagnosed with or at risk for ADPKD as they move into young adulthood.[5] Not because something bad is expected, but because the follow-up needs a home on the adult side.

Second, if you feel fine, the problem may not be a handoff that goes badly. It may be a handoff that does not happen at all. Young people with kidney conditions can drift out of follow-up and away from treatment plans in the years around transfer, and one purpose of a planned transition is to reduce that risk.[1,2] With ADPKD, where you usually feel fine, drifting is easy, because skipping two years of blood pressure checks does not hurt at the time.

Third, adult care runs on different assumptions. Pediatric clinics are built around families: a parent makes most of the decisions, and there is often a team around you, with nurses, social workers, and dietitians. Adult clinics assume the person in the chair is managing their own care, and the team around them is often thinner.[1,2]

What changes, and what does not

Who the doctor talks to. In pediatric care the conversation often runs through your parent. In adult care it runs through you.[2,4]

Who holds the information. Your diagnosis, your imaging, your family history, your medications, which number to call: right now a parent probably carries most of that. On the adult side you are expected to be able to tell it, and to book, reschedule, and get yourself there. A good pediatric clinic sends a written summary ahead of you, but the new clinician will still ask you.[1,2]

Your privacy. In adult care, consent, records, and the conversation in the room are directed to you. Plenty of people want a parent to stay involved, and that is fine. It becomes something you arrange rather than the default, and the details depend on where you are and on the clinic.[2]

What does not change. The condition, the things being checked, and the reasons for checking them. ADPKD does not turn into a different disease at 18.[5] Also unchanged: your parent still cares and can still help. The seat changes from driver to passenger.

What your care team is tracking, and why

It helps to know what the measurements are for, because on the adult side you will be asked about them.

  • Blood pressure. The central one in ADPKD. High blood pressure can arrive early, sometimes while kidney function is still normal, and it is one of the main things clinicians can treat directly at your age, so it is checked regularly and sometimes with a home or 24-hour monitor.[5,6]
  • Kidney function. Blood and urine tests, when your team orders them, show how well your kidneys are filtering and whether there is protein in the urine. At your age these are often still normal, and normal is the point of checking.[5]
  • Imaging. Ultrasound of your kidneys, and sometimes other imaging, done when there is a reason rather than on a fixed schedule.[5]
  • Weight and growth. Your team measures height and weight at visits, the way any pediatric clinic does. In adults with ADPKD, body weight has been linked to how the disease progresses, and although that has been studied less in children, current guidance asks clinicians to keep track of it in children with or at risk for ADPKD.[5,6] This is something your clinician watches, not something you are being asked to manage on your own. If it ever comes up, it comes up with your clinician and, where useful, a dietitian.[6]

Skills you can build one at a time

Kidney transition guidance includes lists of things a young person should be able to do by the time they transfer.[1,2] Nobody expects all of them at 14. They are meant to be picked up over several years, and it is fine for a parent to keep doing most of them for a while. Adapted for ADPKD:

  • Say what you have, in a sentence or two, in your own words, to someone who has never heard of it.
  • Know your family history: who in your family has ADPKD, and roughly what it has meant for them, at whatever level your family is comfortable sharing.
  • Know the names of any medications you take, what each is for, and what to do if you miss a dose. If you take none, know that, and know why blood pressure is watched anyway.
  • Know who to call, and for what: a routine question, a new symptom, an emergency.
  • Book or reschedule an appointment yourself, at least once, with a parent nearby.

Pick one for the next visit. Then another.

If ADPKD runs in your family and you have not been tested

Transition is for you too. The international guideline is explicit that it applies to children at risk for ADPKD, not only to those with a diagnosis.[5] Your follow-up may have been lighter and with a pediatrician rather than a nephrologist, and your adult follow-up may be with a primary care doctor rather than a nephrologist. Either way, whoever sees you as an adult needs to know the family history and to keep checking blood pressure.[5] “I have a family history of polycystic kidney disease and I haven’t been tested” is a complete sentence, and one worth saying at your first adult visit.

Whether and when to be tested stays a careful, shared decision, and current guidance expects it to be offered again in adulthood rather than settled at 15, often when questions about your own future or about having children come up.[2,5] Nothing about turning 18 forces it. (A separate PKD Bridge article addresses disclosure conversations.)

People who may be able to help

  • Your parent or guardian. For most of this they are the person handing things over, and the handover works best planned together rather than all at once. They may have their own feelings about stepping back, which are real and worth hearing.[2]
  • Your kidney doctor or care team. They decide with you when transfer makes sense, prepare the summary that goes to the adult clinic, and often know which adult nephrologists are used to young patients and to ADPKD.[1,2]
  • A nurse, social worker, or transition coordinator. Some clinics have someone whose job is to walk young people through transition.[1] Ask.
  • The adult nephrologist. You do not have to wait for the first visit to find out who they are. Some clinics arrange a joint visit or a video introduction before transfer; if yours does not, ask for a name and a way to reach the office.[1,2]
  • A genetic counselor. Not something you need now, but worth knowing exists: someone whose job is to talk through what an inherited condition means for you and, much later if you want, for any children you might have.[2]

How to start the conversation

Ask when. At a routine visit, ask: “When do people usually move to adult care at this clinic, and what does that look like?” It is a normal question, and the answer tells you how much time you have.

Ask for a few minutes alone. If your visits have always had a parent in the room, ask whether part of the next one can be just you. Many clinics do this on purpose, as practice.[2,4]

Let your parent start it. If you would rather not raise it, a parent or guardian can ask on your behalf: “Can we start talking about transition?” You can be in the room without leading.

Write down what you do not know. “What is my blood pressure supposed to be” and “why do I get an ultrasound” are not dumb questions. They are the transition.

Questions worth asking

For your clinician:

  • When do you expect me to move to adult care, and what has to happen first?
  • What will you send to the new clinic, and can I see it?
  • Do you know adult nephrologists who are used to patients my age, or to ADPKD?
  • Can we meet the new clinician, or talk to them, before I switch?

For a parent or guardian:

  • What do you do for my care right now that I do not know about, and can I start doing one of those things?
  • Is there anything in the family history I should know before I have to tell a new clinician?
  • How do you want to be involved after I turn 18?

For yourself:

  • What do I actually know about my own condition, and what have I been letting someone else know for me?
  • Which part feels hardest: the new clinician, the new building, or being the one in charge?

When to bring in your care team

Most of transition is planning, not urgency. A few things belong at an appointment rather than in your head.

  • If you are around 16 or older and nobody has mentioned adult care, ask about it.
  • If you are about to move away, for college or work, and your transfer has not happened. The plan for who sees you where should exist before you leave.[2] (A separate PKD Bridge article addresses college planning.)
  • If you have been skipping visits, or stopped a medication because it seemed pointless when you feel fine. This is common enough that the transition guidance was written partly to catch it. Saying so is not a confession.[1,2]
  • If you have moved to adult care and it is not working: you cannot reach anyone, or the new clinic never received your records. Call the pediatric clinic. The handoff is supposed to include follow-up after transfer, not end at the door.[2]

Things to think about before deciding

It is not a test you pass at 18. Readiness is the goal, not the date. Some clinics use a short questionnaire to see where you are, and “not yet” is an acceptable answer to most items. It just becomes something to work on.[2]

The future can wait, but it will not disappear. Questions about what ADPKD means for your health decades from now, and about whether you might pass it on, tend to arrive with adulthood. You are allowed to say “not yet.” The guidance for inherited kidney conditions expects those conversations to be offered again in adulthood, not settled now.[2]

Timing. Transfer goes better during a stable stretch, not in the middle of a health problem or a family upheaval, and if possible not the same month as leaving home.[1,2]

What this can feel like

Losing the pediatric clinic is a real loss, even if you complained about it. When young people who have transferred are asked what was hardest, a recurring answer is exactly that: the continuity and trust they had built up, and having to start over.[1]

Being put in charge when you did not ask to be can feel like a lot. So can a parent who will not let go. Both are worth saying out loud, to them and to your care team.

Then there is the future. Adolescents with ADPKD in the international interviews described uncertainty about what the condition would mean for them later in life.[7] Young adults who grew up with kidney disease have described something similar: an uncertain future, feeling overprotected, independence arriving late.[8] Most of them had more advanced kidney disease than most teenagers with ADPKD, so their experience is not a forecast. Some of the same young adults also described refusing to miss out and becoming more determined to do what their peers were doing.[8] Both reactions are real.

And for some people the main feeling is relief: a clinician who talks to you, a visit that is yours, a condition that is finally yours to manage rather than something done to you.

If any of this is sitting heavily, say so to a parent, a counselor, or your care team. Pediatric clinics are used to this conversation, and it is a normal thing to raise with them.

The bottom line

Moving to adult kidney care is a process that takes years, not a date, and it is supposed to start while you are still a teenager.[1,2] With ADPKD or a family history of it, the follow-up continues into adulthood and matters more there, which is why the guideline calls for a planned transition for everyone with or at risk for the condition.[5] For someone who feels fine, an important risk is falling out of care. Learn what is being checked and why, take over one piece at a time, find out who the next clinician is before you need them, and treat “not yet” as a fair answer to the questions you are not ready for.

This article provides educational information to help you begin a conversation. It is not medical advice, legal advice, school advocacy, counseling, or crisis support. There is very little research on adolescents with ADPKD and transition specifically. Some of what is here comes from consensus guidance on transition for kidney disease and inherited kidney conditions generally, and some from research on young adults who grew up with more advanced kidney disease, so it should be used cautiously as a starting point. For individualized decisions, talk with your parent or guardian, your clinician, and, where the timing or shape of your move to adult care is involved, your nephrologist.

References

  1. Watson AR, Harden P, Ferris M, Kerr PG, Mahan J, Ramzy MF. Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA). Pediatr Nephrol 2011 Oct;26(10):1753–1757. doi: 10.1007/s00467-011-1981-z
  2. Perez Gomez MV, Costea G-C, Claus L, Cornec-Le Gall E, van Eerde AM, Lemoine S, Groothoff J, Levtchenko E, Klein L, Pape L, Müller R-U, Liebau MC. Transition of patients with hereditary nephropathies from paediatric to adult care. Nephrol Dial Transplant 2026 Jan 30;41(2):367–379. doi: 10.1093/ndt/gfaf186
  3. Mazur A, Dembinski L, Schrier L, Hadjipanayis A, Michaud P. European Academy of Paediatric consensus statement on successful transition from paediatric to adult care for adolescents with chronic conditions. Acta Paediatr 2017 Aug;106(8):1354–1357. doi: 10.1111/apa.13901
  4. White PH, Cooley WC, TRANSITIONS CLINICAL REPORT AUTHORING GROUP, AMERICAN ACADEMY OF PEDIATRICS, AMERICAN ACADEMY OF FAMILY PHYSICIANS, AMERICAN COLLEGE OF PHYSICIANS. Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics 2018 Nov 1;142(5):e20182587. doi: 10.1542/peds.2018-2587
  5. Devuyst O, Ahn C, Barten TRM, Brosnahan G, Cadnapaphornchai MA, Chapman AB, Cornec-Le Gall E, Drenth JPH, Gansevoort RT, Harris PC, Harris T, Horie S, Liebau MC, Liew M, Mallett AJ, Mei C, Mekahli D, Odland D, Ong ACM, Onuchic LF, Pei YPC, Perrone RD, Rangan GK, Rayner B, Torra R, Mustafa R, Torres VE. KDIGO 2025 Clinical Practice Guideline for the Evaluation, Management, and Treatment of Autosomal Dominant Polycystic Kidney Disease (ADPKD). Kidney Int 2025 Feb;107(2S):S1–S239. doi: 10.1016/j.kint.2024.07.009
  6. Van Reeth OE, Cadnapaphornchai MA, Liebau MC, Earley A, Torres V, Devuyst O, Mekahli D. KDIGO 2025 ADPKD guideline through pediatric eyes. Pediatr Nephrol 2026 May;41(5):1243–1247. doi: 10.1007/s00467-025-07071-y
  7. Oberdhan D, Schaefer F, Cole JC, Palsgrove AC, Dandurand A, Guay-Woodford L. Polycystic Kidney Disease–Related Disease Burden in Adolescents With Autosomal Dominant Polycystic Kidney Disease: An International Qualitative Study. Kidney Med 2022 Mar;4(3):100415. doi: 10.1016/j.xkme.2022.100415
  8. Kerklaan J, Hannan E, Hanson C, Guha C, Cho Y, Christian M, Hamiwka L, Ryan J, Sinha A, Wong G, Craig J, Groothoff J, Tong A. Perspectives on life participation by young adults with chronic kidney disease: an interview study. BMJ Open 2020 Oct;10(10):e037840. doi: 10.1136/bmjopen-2020-037840