PVRI IDDI: Access to care survey

Question Title

* 3. What is your specialty area?

Cardiologist

Pulmonologist

Paediatric specialist – Cardiologist

Paediatric specialist – Pulmonologist

Paediatric specialist - Neonatologist

Cardiac surgeon

Rheumatologist

Other (please specify)

Question Title

* 4. How many adult PH patients are currently followed in your centre?

5-10

11-50

>50

Question Title

* 5. Do you use WSPH (World Symposia on Pulmonary Hypertension) classification criteria for grouping your PH patients?

Yes

Other (please specify)

Question Title

* 6. How many are Group 1, Group 2 and Group 3 patients?

PH Group 1

PH Group 2

PH Group 3

Question Title

* 7. Does your centre care for paediatric patients aged <18 years of age?

Yes

Question Title

* 8. How many paediatric patients do you follow?

5-10

>10

N/A

Question Title

* 9. Of these, how many are Group 1, Group 2 and Group 3 patients?

PH Group 1

PH Group 2

PH Group 3

Question Title

* 10. How many Chronic Thromboembolic Pulmonary Hypertension (CTEPH) patients are currently followed in your centre?

<10

10-20

>20

Question Title

* 11. What percentage of your entire patient population are:

Asian

White

Black

Hispanic

Other underrepresented minority

Question Title

* 12. What percentage of your patients have health insurance?

Question Title

* 13. What is your centre’s referral region or area of coverage?

<10 square km / 4 square miles

10-30 square km / 4 – 12 sq miles

30-50 square km / 12 – 20 square miles

50-70 square km / 20 – 27 square miles

70-100 square km / 27 – 40 square miles

>100 square km / >40 square miles

Question Title

* 14. How is the PH diagnosis usually made in your centre?

By individual clinician

By multidisciplinary team

Question Title

* 15. Do you have multidisciplinary team meetings for your PH patients?

Yes

Question Title

* 16. Which of these investigations are performed in your centre? (please tick all that apply)

Electrocardiogram

Echocardiography

BNP/NT-proBNP

Blood chemistry and haematology

6MWT

Blood gas analysis

Pulmonary function test

High Resolution CT pulmonary angiogram

Lung ventilation/perfusion scintigraphy

Right heart catheterization

Question Title

* 17. Do you perform genetic testing for PH patients (all ages) at your centre?

Yes

Question Title

* 18. In your centre, what is/are the most important limitation(s) to making a timely diagnosis? (please tick all that apply)

Insufficient staff

Insufficient expertise

Insufficient financial resources

Insufficient time

Other (please specify)

No limitations

Question Title

* 19. What percentage of your patients fall into which WHO Functional Class at diagnosis?

FC I

FC II

FC III

FC IV

Not known

Question Title

* 20. Which of these drugs do you have access to? (please tick all that apply)

Parenteral prostanoids

Oral treprostinil

Inhaled prostanoids

Selexipag

PDE-5 Inhibitors

ERA

Riociguat

Question Title

* 21. Do you use generic drugs at your centre?

Yes

Question Title

* 22. If you do not use any drugs, please tell us why (tick all that apply)

Not available

Too costly

Insurance does not reimburse

Other (please specify)

N/A

Question Title

* 23. How many patients in your centre are currently treated with parenteral prostanoids?

1-5

6-20

>20

Question Title

* 24. Do you follow up risk status every 3-6 months in patients with PAH?

Yes

Other (please give details)

Question Title

* 25. Which PAH risk assessment tools do you use?

Comprehensive risk assessment tool

Simplified risk assessment tool

Other (please give details)

Question Title

* 26. How often do you follow-up mPAP and PVR in patients with PH?

3-6 months after changes in therapy

Every 1-2 years

In case of clinical worsening

Other (please give details)

Question Title

* 27. Do you follow up echocardiography every 3-6 months in patients with PH?

Yes

Other (please give details)

Question Title

* 28. Do you follow up patient reported PH-specific health related-quality of life?

Yes

Other (please give details)

Question Title

* 29. Do you routinely work with patient associations?

Yes

If yes, please give the name(s) of the patient association

Question Title

* 30. How many randomised controlled trials are conducted at your centre?

Trial count

Clear

i We adjusted the number you entered based on the slider’s scale.

Question Title

* 31. If yes, how many of these are industry sponsored trials?

Trial count

Clear

i We adjusted the number you entered based on the slider’s scale.

Question Title

* 32. How many investigator-initiated trials are conducted at your centre?

Trial count

Clear

i We adjusted the number you entered based on the slider’s scale.

Question Title

* 33. If yes, how many of these are industry sponsored trials?

Trial count

Clear

i We adjusted the number you entered based on the slider’s scale.

Question Title

* 34. What resources do you have access to for keeping up with current guidelines and practices? (Please answer yes or no and add details where applicable)

Webinars

Conferences

Up to date library and access to current papers

Regular seminars

Other (please give details)

Question Title

* 35. What are the main gaps in the provision of diagnostic and management best practices in your health system? (Please answer yes or no and add details where applicable)

Access to cardiac catheterization

Timely access to High Resolution CT pulmonary angiogram

Availability of lung ventilation/perfusion scintigraphy

Genetic testing

Access to medicines (specify which ones are not available)

Nursing support to provide subcutaneous medications

Adequate numbers of health care professionals to provide 24/7 care for very sick patients

Other (please give details)

Question Title

* 36. What resources would you like to help you in your practice?

Webinars with content experts

Access to content experts for consultations about complex cases via Zoom

Resources to attend PVRI Conference

Provision of a mentor

Other (please give details)

PVRI IDDI: Access to care survey

Question Title

* 1. What country do you practise in?

Question Title

* 2. Which city or town is your primary centre located in? (this information will not be shared)

Question Title

* 3. What is your specialty area?

Question Title

* 4. How many adult PH patients are currently followed in your centre?

Question Title

* 5. Do you use WSPH (World Symposia on Pulmonary Hypertension) classification criteria for grouping your PH patients?

Question Title

* 6. How many are Group 1, Group 2 and Group 3 patients?

Question Title

* 7. Does your centre care for paediatric patients aged <18 years of age?

Question Title

* 8. How many paediatric patients do you follow?

Question Title

* 9. Of these, how many are Group 1, Group 2 and Group 3 patients?

Question Title

* 10. How many Chronic Thromboembolic Pulmonary Hypertension (CTEPH) patients are currently followed in your centre?

Question Title

* 11. What percentage of your entire patient population are:

Question Title

* 12. What percentage of your patients have health insurance?

Question Title

* 13. What is your centre’s referral region or area of coverage?

Question Title

* 14. How is the PH diagnosis usually made in your centre?

Question Title

* 15. Do you have multidisciplinary team meetings for your PH patients?

Question Title

* 16. Which of these investigations are performed in your centre? (please tick all that apply)

Question Title

* 17. Do you perform genetic testing for PH patients (all ages) at your centre?

Question Title

* 18. In your centre, what is/are the most important limitation(s) to making a timely diagnosis? (please tick all that apply)

Question Title

* 19. What percentage of your patients fall into which WHO Functional Class at diagnosis?

Question Title

* 20. Which of these drugs do you have access to? (please tick all that apply)

Question Title

* 21. Do you use generic drugs at your centre?

Question Title

* 22. If you do not use any drugs, please tell us why (tick all that apply)

Question Title

* 23. How many patients in your centre are currently treated with parenteral prostanoids?

Question Title

* 24. Do you follow up risk status every 3-6 months in patients with PAH?

Question Title

* 25. Which PAH risk assessment tools do you use?

Question Title

* 26. How often do you follow-up mPAP and PVR in patients with PH?

Question Title

* 27. Do you follow up echocardiography every 3-6 months in patients with PH?

Question Title

* 28. Do you follow up patient reported PH-specific health related-quality of life?

Question Title

* 29. Do you routinely work with patient associations?

Question Title

* 30. How many randomised controlled trials are conducted at your centre?

Question Title

* 31. If yes, how many of these are industry sponsored trials?

Question Title

* 32. How many investigator-initiated trials are conducted at your centre?

Question Title

* 33. If yes, how many of these are industry sponsored trials?

Question Title

* 34. What resources do you have access to for keeping up with current guidelines and practices? (Please answer yes or no and add details where applicable)

Question Title

* 35. What are the main gaps in the provision of diagnostic and management best practices in your health system? (Please answer yes or no and add details where applicable)

Question Title

* 36. What resources would you like to help you in your practice?