tested—‘From the moment I found that I had it, I wrote to all my relatives, and said, “Get screened”’ (Australia). Some parents expected that testing would motivate behaviour change to maintain health, and were frustrated when their child did not demonstrate effort to protect their kidney health—‘I keep nagging him to see a doctor, see a specialist, and he goes yeah, doctor said my kidneys are alright’ (Australia). For some, tests on children were a collective ‘family concern’ and decision. Seizing control of well-being Gaining confidence from early detection An early diagnosis through testing was thought to provide an opportunity for participants to take control of their health by modifying their diet and taking preventive medications, such as antihypertensive agents. Participants were empowered to monitor their health vigilantly and gained confidence in their ability to preserve their QoL—‘Going Theme Illustrative quotations Reassurance in family resilience This is generational, my mother’s father died of it. We’ve been quite used to it, if there’s such a thing as used to it, so our children, I don’t think would have a huge impact on them, they would know what to do. (Australia) She was fine after testing, we discussed it, we had all sorts of chats about; what it’s going to be in the future and look at some of the other things you could have that would be far worse, and look on the bright side, at least you know about it and we can do preventative stuff. (Australia) When we went and saw the genetic doctor the second time he gave us an actual formal letter and we passed it out throughout our kids, and mainly living cousins, so that if they wanted to go they could ring up and get an appointment, see him and get tested or whatever. (Australia) PKD is hereditary in our family, I just think of it as a quirk, it’s just another thing that makes me different and unique so I’ve been very lucky to watch my grandmother and my father go through it and the way that they’ve approached it and dealt with it has given me hopefully a good attitude towards it, it doesn’t affect me yet so I am lucky, at this stage. (Australia) Anticipating impact on quality of life Reassured by lack of symptoms If you're getting towards 40, 50, 60 even and it hasn't bothered you until then, you're not going to be worried about it. (Australia) ‘Not until you're older.’ ‘Oh well, I suppose I'll worry about then.’ I wouldn't worry about it until I absolutely have to. (Australia) I had children anyhow, even though I did know there was a risk. I was still healthy. I’ve got four lovely boys, two have got the disease. I do feel a bit of guilt about that for sure, but I wouldn’t give any of them back. (Australia) I don’t think about it as I have not had any major problems related to the disease, but it’s true that I don’t have enough perspective to inform me. (France) Judging the value of life with ADPKD You want your child to have the best life possible and be healthy and happy and everything like that but I don't see I’ve been ever denied anything or will ever be denied anything in life and if my parents had had the same decision would I exist today? (Australia) I was fairly stubborn that I was never going to have children if I had PKD. I was 100% fixed in my head and nothing was going to change that but I decided I didn’t have PKD so it was all right, so I made that error now because I had the two most beautiful children and I really think you’ve got to be pretty careful in that area because you create beings that are adding quite a bit of value to society. (Australia) My mother said a couple of times if she’d have known; she probably shouldn’t have had children. My take on that is I’ve had a really good 60 years with a bit of intervention, and she had three children without the kidney disease, so I was the only one of four. (Australia) [My mother] said, ‘If I knew like you, you would not be here. Neither you nor your sister.’ I have no family. Because, I made the choice not to have children, but I made the right choice. (France) ADPKD, autosomal dominant polycystic kidney disease; PKD, polycystic kidney disease. Table 2 Continued on July 8, 2022 by guest. Protected by copyright. http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2020-038005 on 10 October 2020. Downloaded from 8 Logeman C, et al. BMJ Open 2020;10:e038005. doi:10.1136/bmjopen-2020-038005 Open access to the doctor regularly, just getting your blood pressure checked, because they say that if you can keep your blood pressure under control, they [kidneys] might not fail’ (Australia). For parents with a child with ADPKD, an early diagnosis motivated them to educate and ‘reinforce the importance of dietary health’ (Korea) in their children. Allowing preparation for the future An earlier diagnosis through testing enabled patients to mentally prepare for potential symptom burden and make lifestyle changes (including financial and career planning) to protect their QoL and avoid stress—‘Forewarned is forearmed’ (Australia). Some participants (particularly on dialysis) regretted not getting tested as they would have maximised their time while asymptomatic—‘If we had been educated earlier, we would not have worked so hard, we would have had a holiday, all those things would have been done so we had no regrets later’ (Australia). Reassurance from family resilience Some observed their parents’ optimism and resilience while on dialysis or