Patient Survey - PKD - INESSS

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’.

Question Title

* 1. Have you been diagnosed with ADPKD?

Yes

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

Less than a year

1-5 years

5-10 years

10-15 years

More than 15 years

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

Blood pressure medication

Dialysis

Antidepressant or antipsychotic medication

Pain management therapies

ADPKD treatment (tolvaptan)

Other (please specify)

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

Very likely

Somewhat likely

Not likely

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

I was tested because a family member had or was suspected to have ADPKD

I was being tested for other health issues and it was discovered I have ADPKD

I was tested after a hospital emergency room visit

Other (please specify)

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

Dietician

Nurse

General practitioner or family doctor

Nephrologist

Psychologist

Psychiatrist

Social Worker

Urologist

None

Other (please specify)

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

Stage 1 (normal kidney function)

Stage 2 (mildly reduced kidney function)

Stage 3 (moderately reduced kidney function)

Stage 4 (severely reduced kidney function/pre-dialysis)

Stage 5 (on dialysis, very severe or kidney failure)

Have had a kidney transplant

I don't know my stage

Question Title

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

Anxiety

Blood in urine (hematuria)

Fatigue

Frequent lung infections/bronchitis

Headaches

High blood pressure (hypertension)

Kidney infections

Kidney stones

Stroke

Urinary tract infection (UTI)

I have not experienced any of these symptoms

Pain (please specify)

Question Title

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

Finding a treatment that will stop/slow disease progression/cyst growth

Identifying modifiable lifestyle factors

Identifying nonpharmacological therapies (e.g. physical therapy, massage and ice and heat pads) that could be used to delay the initiation of pharmacological therapies (e.g. medication)

Improving the longevity of transplants

Finding treatments with improved efficacy and safety

Identifying targeted gene therapies

Question Title

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

My kidney function is declining

My kidney function is stable

My kidneys function is improving

My kidneys are increasing in size

My kidneys are decreasing in size

I am worried about needing dialysis

I am now on dialysis

I am worried about needing dialysis

I am on the waiting list to receive a kidney transplant

I am worried I won’t find a kidney donor

I am experiencing many symptoms that negatively impact my daily life

I believe there is a lack of options to manage ADPKD

I have no concern related to my ADPKD

Other (please specify)

Question Title

* 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.).

Stopped or reduced me from carrying out normal daily activities

Made it difficult to participate in sports or other physical activities

Prevented me from going out socially or to special events

Caused me to lose sleep or sleep poorly

Was the source of problems or tension with my partner, close friends or family members

Created a stigma and absence of conversation amongst family members

Impacted your self-esteem

None

Question Title

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

I did not understand the disease at the time of my diagnosis

I would like to have more information to help better understand this disease

I want to better understand what I can do to adapt my lifestyle to slow the progression of my disease

I know about a new treatment available, but I do not know if it’s for me

I know about a new treatment available, but I do not have insurance to cover the medication cost

I would like to have more control over my ADPKD treatment plan

I feel that I have a good understanding of my ADPKD prognosis

My doctor or other healthcare professional is receptive/attentive to my needs

ADPKD is not a priority within the Canadian healthcare system

Question Title

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

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

Yes

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

Effective relief of symptoms

Minimal adverse effects

Availability and reimbursement

Clear instructions/directions with respect to administration

Convenience and ease of use

Clear understanding of the benefits versus alternative therapies (non-pharmacological treatments)

Other comments

Question Title

* 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):

Effectiveness

Adverse effects

Ease of use

Impact on quality of life

Benefits/drawbacks compared to other therapies

Other

Question Title

* 1. Have you been diagnosed with ADPKD?

Question Title

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

Question Title

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

Question Title

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

Question Title

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

Question Title

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

Question Title

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

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

Question Title

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

Question Title

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

Question Title

* 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.).

Question Title

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

Question Title

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

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

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

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* 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):

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* 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).