General population
There is no evidence for screening in the general population; however, screening of patients with secondary hypertension, especially patients ages 20 to 34 years, is mandatory with renal ultrasound.[63]Kelleher CL, McFann KK, Johnson AM, et al. Characteristics of hypertension in young adults with autosomal dominant polycystic kidney disease compared with the general U.S. population. Am J Hypertens. 2004 Nov;17(11 Pt 1):1029-34.
http://www.ncbi.nlm.nih.gov/pubmed/15533729?tool=bestpractice.com
Asymptomatic members with positive family history of autosomal-dominant PKD (ADPKD)
Screening should be considered for asymptomatic adult patients who have a family history of ADPKD. The patient's right to know, or not to know, should be taken into account. Some patients may not wish to know if they have the disease because of the lack of disease-modifying agents for asymptomatic individuals. Instead, if they do not wish to find out, general health screening and maintenance measures can be carried out.
At-risk individuals <18 years of age are usually not screened, but decide whether and when to be tested as an adult.[1]Bergmann C, Guay-Woodford LM, Harris PC, et al. Polycystic kidney disease. Nat Rev Dis Primers. 2018 Dec 6;4(1):50.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6592047
http://www.ncbi.nlm.nih.gov/pubmed/30523303?tool=bestpractice.com
Pharmacologic studies of therapeutic agents to slow disease progression in pediatric patients are ongoing and the adverse effects from presymptomatic diagnosis in children (removal of choice to know or not know; psychological, educational, and career implications; and insurability issues) need to be considered.[1]Bergmann C, Guay-Woodford LM, Harris PC, et al. Polycystic kidney disease. Nat Rev Dis Primers. 2018 Dec 6;4(1):50.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6592047
http://www.ncbi.nlm.nih.gov/pubmed/30523303?tool=bestpractice.com
[7]Gimpel C, Bergmann C, Bockenhauer D, et al. International consensus statement on the diagnosis and management of autosomal dominant polycystic kidney disease in children and young people. Nat Rev Nephrol. 2019 Nov;15(11):713-26.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7136168
http://www.ncbi.nlm.nih.gov/pubmed/31118499?tool=bestpractice.com
There are certain situations when it might be beneficial to intervene if the child of an affected person is at risk (e.g., physical exam reveals kidneys are markedly enlarged), so then precautions can be taken during participation in sports where abdominal trauma may occur (e.g., rugby).[36]Grantham JJ. Clinical practice. Autosomal dominant polycystic kidney disease. N Engl J Med. 2008 Oct 2;359(14):1477-85.
http://www.ncbi.nlm.nih.gov/pubmed/18832246?tool=bestpractice.com
Children with a positive family history and either confirmed or unknown disease status should be monitored for hypertension and albuminuria.[7]Gimpel C, Bergmann C, Bockenhauer D, et al. International consensus statement on the diagnosis and management of autosomal dominant polycystic kidney disease in children and young people. Nat Rev Nephrol. 2019 Nov;15(11):713-26.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7136168
http://www.ncbi.nlm.nih.gov/pubmed/31118499?tool=bestpractice.com
Screening ADPKD patients for intracranial aneurysms
Widespread presymptomatic screening for intracranial aneurysms is not justified.[31]Chapman AB, Devuyst O, Eckardt KU, et al. Autosomal-dominant polycystic kidney disease (ADPKD): executive summary from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. Kidney Int. 2015 Jul;88(1):17-27.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4913350
http://www.ncbi.nlm.nih.gov/pubmed/25786098?tool=bestpractice.com
Screening is indicated if there is a family history of aneurysm or of subarachnoid hemorrhage, if there is previous aneurysm rupture, if the patient is going for elective surgery (e.g., kidney transplant), in high-risk occupations (e.g., pilots, crane operators), and in patients with extreme anxiety despite adequate information.[31]Chapman AB, Devuyst O, Eckardt KU, et al. Autosomal-dominant polycystic kidney disease (ADPKD): executive summary from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. Kidney Int. 2015 Jul;88(1):17-27.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4913350
http://www.ncbi.nlm.nih.gov/pubmed/25786098?tool=bestpractice.com
Most unruptured intracranial aneurysms (UIA) detected by presymptomatic screening in ADPKD patients are small (median <4 mm diameter) and in the anterior circulation.[64]Sanchis IM, Shukoor S, Irazabal MV, et al. Presymptomatic screening for intracranial aneurysms in patients with autosomal dominant polycystic kidney disease. Clin J Am Soc Nephrol. 2019 Aug 7;14(8):1151-60.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6682820
http://www.ncbi.nlm.nih.gov/pubmed/31362991?tool=bestpractice.com
Growth and rupture risks are not thought to be higher than those of UIAs in the general population.[65]Cagnazzo F, Gambacciani C, Morganti R, et al. Intracranial aneurysms in patients with autosomal dominant polycystic kidney disease: prevalence, risk of rupture, and management - a systematic review. Acta Neurochir (Wien). 2017 May;159(5):811-21.
http://www.ncbi.nlm.nih.gov/pubmed/28283868?tool=bestpractice.com
However, some studies show around a 5-fold increase in rupture rate.[64]Sanchis IM, Shukoor S, Irazabal MV, et al. Presymptomatic screening for intracranial aneurysms in patients with autosomal dominant polycystic kidney disease. Clin J Am Soc Nephrol. 2019 Aug 7;14(8):1151-60.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6682820
http://www.ncbi.nlm.nih.gov/pubmed/31362991?tool=bestpractice.com
[66]Thompson BG, Brown RD Jr, Amin-Hanjani S, et al. Guidelines for the management of patients with unruptured intracranial aneurysms: a guideline for healthcare professionals from the American Heart Association/American Stroke Association. Stroke. 2015 Aug;46(8):2368-400.
https://www.ahajournals.org/doi/10.1161/STR.0000000000000070
http://www.ncbi.nlm.nih.gov/pubmed/26089327?tool=bestpractice.com
Risk of enlarging an existing aneurysm in ADPKD patients is very low if the aneurysm is <7 mm detected by presymptomatic screening, but yearly surveillance is recommended.[67]Belz MM, Fick-Brosnahan GM, Hughes RL, et al. Recurrence of intracranial aneurysms in autosomal-dominant polycystic kidney disease. Kidney Int. 2003 May;63(5):1824-30.
http://www.kidney-international.org/article/S0085-2538(15)49073-8/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/12675859?tool=bestpractice.com
[68]Gibbs GF, Huston J 3rd, Qian Q, et al. Follow-up of intracranial aneurysms in autosomal-dominant polycystic kidney disease. Kidney Int. 2004 May;65(5):1621-7.
http://www.ncbi.nlm.nih.gov/pubmed/15086900?tool=bestpractice.com
Because the risk of developing a new aneurysm after an initial negative study is approximately 3% at 10 years in patients with a family history of intracranial aneurysm, rescreening is suggested after 5 to 10 years.[69]Schrier RW, Belz MM, Johnson AM, et al. Repeat imaging for intracranial aneurysms in patients with autosomal dominant polycystic kidney disease with initially negative studies: a prospective ten-year follow-up. J Am Soc Nephrol. 2004 Apr;15(4):1023-8.
http://jasn.asnjournals.org/content/15/4/1023.full
http://www.ncbi.nlm.nih.gov/pubmed/15034105?tool=bestpractice.com