2026 Patient 360: Patient Experience Survey

  • IgNS Patient Experience Survey

  • Thank you for your interest in this confidential survey. Your feedback is very important to IgNS. This survey is anonymous (we will not be asking for your personal information). The survey will help us learn more about patients’ experience with immunoglobulin (Ig) therapy, understand your challenges, and assess how the healthcare team supports the patients. Our goal is for all patients to receive the highest quality of care at every immunoglobulin infusion.

    The survey will take about 10 minutes to complete. We appreciate your time and thank you for participating!

  • Introductory Questions

  • Have you completed this survey before?*

  • In continuing with this survey, you attest that you are 18 years or older.

  • In continuing with this survey, you attest that you are 19 years or older.

  • In continuing with this survey, you attest that you are 21 years or older.

  • Are you...
  • Are you currently receiving Ig therapy?*
  • Why are you currently receiving Ig therapy?
  • Please clarify the type of PI:
  • What were the main symptoms that led to your diagnosis? Check all that apply:
  • Which physician specialty determined your diagnosis?

  • Before your diagnosis, please estimate how many times you visited the following care centers in an average year (frequency): 

  • Related to your primary diagnosis, which type of doctors do you see on a regular basis? Choose all that apply:

  • Ig Therapy Specific Questions

  • How do you currently receive Ig therapy?*
  • Have you ever switched your route of Ig therapy? (IVIG to SCIG, SCIG to IVIG, etc.)
  • If you answered "Yes" above, select all that apply:
  • Why did you change the route of your Ig therapy? Choose all that apply:
  • Have you ever switched your brand of Ig therapy?
  • Why did you switch brands of therapy?
  • Currently, where do most of your Ig infusions take place?
  • As follow up to the previous question, has the site of your care changed in the past 3 years?
  • If yes, why?
  • How often do you receive your Ig infusions?
  • During the past year, which of the following side effects have limited your ability to function normally after an Ig infusion? Choose all that apply:
  • Which areas of your body do you use to for infusion? Choose all that apply:
  • How often do you infuse?
  • How often do you infuse?
  • During the past year, which of the following side effects to SCIG/fSCIG infusion have you experienced? Choose all that apply:

  • During the past year, which of the following issues have you experienced with SCIG/fSCIG infusion?

  • Pain when inserting the needle
  • Needle comes out/does not stay in
  • Leaking at infusion site
  • Infusion taking too long (infusion rate slowing down)
  • Pain during infusion
  • Pump problems/errors
  • None of the above
  • Other
  • On average, how would you rate your side effects from Ig therapy?
  • I usually take pre-medication before my Ig infusion (e.g., Tylenol, Benadryl, steroids)
  • Do you drink fluids, or receive IV fluids to hydrate before each Ig infusion?
  • Does your healthcare team remind you to hydrate (drink fluids) before each Ig infusion?
  • Do you experience Ig "hangovers" (feeling tired, cloudy, headache, joint pain, muscle pain, flu-like symptoms) within 24-48 hours (or longer after your Ig infusion?)
  • Have you ever increased the time between your Ig doses or skipped a dose (when NOT directed by your prescriber)?

  • If so, was it:

  • Because of financial issues (e.g., insurance copay too high; no insurance coverage).
  • Because I'm in-between insurance coverage/"coverage gap."
  • To avoid side effects.
  • Because of travel, vacation, or other special occasions.
  • Because I don't feel up to it.

  • Healthcare Provider Related Questions

  • If receiving Ig therapy at home, how frequently does your nurse remain present throughout the entire Ig infusion?

  • Please indicate the extent to which you agree with the following statements:

  • My nurse is skilled at using infusion pumps.
  • My nurse always knows the correct infusion pump program/settings for my infusions.
  • My nurse usually reviews the infusion pump instruction manual prior to the start of my infusions.
  • When an alarm sounds on the infusion pump during my Ig infusions, my nurse knows what it means and how to address it.

  • Please indicate the extend to which you agree with the following statements. If you receive IVIG, please refer to the ongoing nurse care you receive during treatment. If you are self-infusing SCIG/fSCIG, please refer to your experience while a nurse was providing education and training.

  • During Ig infusion treatment, my nurses have always taken my wishes and concerns into account when providing care.
  • During Ig infusion treatment, my interactions with nurses have been extremely positive.
  • During Ig infusion treatment, my nurses have always ensured that I am well informed regarding everything relevant to my case.
  • The overall quality of nursing care I have received during my Ig treatment has been exceptional.
  • I have the same nurse administer my IVIG
  • Approximately how often does your nurse check your vital signs (blood pressure, temperature, heart rate) during your Ig infusions?
  • How frequently do you receive a follow-up call after your Ig infusion regarding side effects?
  • How frequently have you been asked to remove your own IV line after your Ig infusion?
  • How frequently has your nurse increased your Ig infusion rate to finish the infusion sooner?
  • If you receive your IVIG infusion in your arm or hand, on average how many attempts does it normally take your nurse to start your IV?
  • I am extremely confident in my nurse's knowledge and skills.
  • Is your nurse an Ig Certified Nurse (IgCN®)?
  • How many teaching visits did you receive before you were able to self-administer?
  • How satisfied were you with the training you received from your nurse to self-infuse?
  • My doctor explained different treatment options available to me (e.g., IVIG vs. SCIG/fSCIG, side effects, and treatment goals).
  • My doctor is in close contact with my specialty pharmacy or infusion center and knows about my progress with Ig therapy.

  • Please indicate your level of agreement with the following statements:

  • In general, I am satisfied with my Ig treatment
  • My Ig treatment meets my expectations
  • My Ig treatment meets my needs
  • In general, my physical health is exceptional
  • I am highly satisfied with my current physical health
  • Compared to other people my same age and sex, I am in good health

  • Take a moment to think about the primary Ig Therapy Provider (e.g., your specialty pharmacy/home infusion nurse, pharmacist, doctor's office/clinic nurse, or infusion center nurses). Overall, how much do you agree or disagree with the following statements?

  • My nurse/pharmacist prepared me for Ig therapy, including side effects and expectations.*
  • I have asked what Ig-specific education or training my nurse or pharmacist have received.*
  • I am completely confident that should an emergency arise during my Ig infusion, my nurse is entirely prepared to handle it.*
  • My pharmacy clearly explained why I am receiving a particular brand of Ig therapy.*
  • My nurse thoroughly checks my health at each Ig infusion (not just my vital signs).*
  • My nurse is always present during my entire Ig infusion and monitors me closely.*
  • I always know who to call should I have any side effects after my Ig infusion.*
  • I always understand what side effects to report after my Ig infusion.*

  • How helpful can the IgNS organization be to you in the following areas?

  • Education about Ig products, Ig infusion safety, and other relevant topics.
  • Access or connection to nurses, pharmacists, and physicians
  • Access/connection to other patients with different disorders, all receiving Ig
  • Access/connection to industry and manufacturers

  • Thank you for taking the time to complete this survey. Your feedback is very important and will help IgNS improve clinical practice and patient care. If you have any questions about IgNS, our Patient 360 program, or this survey, please get in touch with us at info@ig-ns.org.

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