Patient survey - ADPKD - INESSS

The Kidney Foundation of Canada would like to thank you for your participation in this short survey. The estimated time to complete it is approximately 5 minutes. The survey will be conducted confidentially and will respect the anonymity of respondents.
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). The survey concentrates on three areas;
  1. The impact ADPKD has on patient quality of life
  2. The extent to which ADPKD patients, with the help of their families cope with the condition including experience with current therapies
  3. The experience that ADPKD patients who are eligible to receive Tolvaptan have had with the medication
The objective of this survey is to demonstrate that patients living with ADPKD in Quebec, may benefit from better access to other treatment options.

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.

Thank you for your time and collaboration on this initiative.
*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. To the best of your knowledge, what is the current stage of your diagnosis? Please select one.

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

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

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

* 7. 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.)

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

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

* 10. If you are on Tolvaptan therapy, briefly comment on your medication experience both positive or negative:

* 11. What difference, if any, has Tolvaptan made on your life?

* 12. Please select the type of coverage you have for your prescription medication? Please select one.