Table 1.

Results of the survey disseminated to members of the Canadian Society of Nephrology.

What treatment guidelines/algorithm, if any, do you use to treat your patients with ADPKD?

82% None

11% Clinical guidelines developed by the Caring for Australians with Renal Impairment

7% Workshop results in Kidney International, literature-guided therapy, evidence-based literature, control of BP, and encouragement of increased water consumption

What screening tools do you use to diagnose ADPKD?

92% Ultrasonography

3% Magnetic resonance imaging

3% Molecular genetic testing

1% Computed tomography

1% None

0% Urinary biomarkers

What treatments have you used for your patients with ADPKD?

42% Surgery

29% Tolvaptan

24% Other types of therapy (eg, BP monitoring, interventional radiology)

3% Mammalian target of rapamycin inhibitors (eg, everolimus, sirolimus)

1% Somatostatin analogues (eg, octreotide, lanreotide, pasireotide)

What do you perceive to be the top needs in the management of ADPKD in Canada?

Lack of general practitioners’ awareness of ADPKD

Lack of management guidelines and care pathways

Lack of knowledge of comprehensive integrated and accepted guidelines for the evaluation of extrarenal manifestations of ADPKD

Lack of established diagnostic algorithms integrating clinical signs and symptoms with kidney imaging and genetic testing

Lack of consensus on the optimal approach to predict prognosis

Lack of therapeutic options

Lack of clarity on subgroups of patients that may benefit from existing treatment

Note. ADPKD = autosomal dominant polycystic kidney disease; BP = blood pressure.