Hello,

We would like to thank you for your participation in this short survey. The estimated time to complete it is approximately 5-7 minutes. The goal behind this survey is to better understand your reality as a patient living with polycystic kidney disease (PKD) and more precisely autosomal dominant polycystic kidney disease (ADPKD), as well as the underlying challenges. The survey will be conducted confidentially and will respect the anonymity of respondents. The data collected will be submitted to the INESSS (Institut national d’excellence en santé et en services sociaux), the provincial entity responsible for evaluating for public funding medications in Quebec.

The objective of this survey is to demonstrate that patients may benefit from a better access to tolvaptan, the only treatment option available for ADPKD.

Thank you for your time and collaboration on this initiative. You are helping to strengthen equal access to treatment options for patients living with ADPKD in Quebec.

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*Kindly note that the remainder of the survey will focus on autosomal dominant polycystic kidney disease and will be referred to as ‘ADPKD’.

* 1. Have you been diagnosed with ADPKD?

* 2. For how long have you been diagnosed with ADPKD?

* 3. Which type of therapies are helping you to manage your ADPKD symptoms?

* 4. How likely are you to stay the course with your current therapies?

* 5. Which of the following best describes the circumstances that led to your diagnosis? Please select one.

* 6. What type of doctor(s) or healthcare professional(s) are you currently seeing for your diagnosis?

* 7. To the best of your knowledge, what is the current stage of your diagnosis? Please select one.

* 8. Below is a list of symptoms associated with ADPKD. Please select all symptoms that apply to you, if any.

* 9. In your opinion, how should ADPKD research be prioritized? You can select multiple options.

* 10. Which of the following describe your health concerns related to your diagnosis? Please select all that apply.

* 11. Please select the statements that best describe the impact ADPKD has had on the quality of your life overall (family life, career, activities and sports, social life, etc.).

* 12. Below is a list of statements about ADPKD resources and treatment. Please select all the statements you agree with.

* 13. How many of your family members, if any, have been diagnosed with ADPKD? Please enter your response below.

* 14. Prior to your diagnosis, were you aware of any family history of ADPKD or kidney disease?

* 15. What would you and your family expect to gain from an ideal therapy administered for ADPKD? You can select more than one.

* 16. If you are on tolvaptan therapy, briefly comment on your medication experience both positive or negative (If you are not on tolvaptan, please move on to the next section - Q18):

* 17. What difference, if any, has tolvaptan made on your life? (If you are not on tolvaptan, please move on to the next section - Q18).

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