Survey research

These surveys are based on all persons known to the foundation as having a diagnosis of primary immunodeficiency (PI). 

• Sixth National Patient Survey (2023): Overview and interactive report.
  • Download full analysis.
• Primary Immune Deficiency Diseases in America: The Fifth National Survey of Patients (2017).
• Primary Immune Deficiency Diseases in America: The Fourth National Survey of Patients (2013).
• Primary Immune Deficiency Diseases in America: The Third National Survey of Patients (2007).
• Primary Immune Deficiency Diseases in America: The Second National Survey of Patients (2002).
• Primary Immune Deficiency Diseases in America: The First National Survey of Patients and Specialists (1995).

At the time of the first national patient treatment survey in 1997, there was no current, comprehensive portrait of the patient with PI, their medical condition, and their treatment. Immunoglobulin replacement therapy is medically indicated for some, but not all primary immunodeficiencies. 

The treatment surveys are based on persons known to the foundation as individuals who use immunoglobulin replacement therapy in the treatment of their primary immunodeficiency. 

• National Immunoglobulin Treatment Survey (2024): Overview and interactive report.
  • Download analysis.
• Treatment Experiences and Preferences Among Patients With Primary Immunodeficiency: National Survey of Patients (2018).
• 2013 IDF national immunoglobulin treatment survey 

  • The results of this survey also informed the following journal article:

    Health-Related Quality of Life in Adult Patients with Common Variable Immunodeficiency Disorders and Impact of Treatment (Published in Journal of Clinical Immunology, May 2017)

• Treatment Experiences and Preferences Among Patients With Primary Immunodeficiency Diseases: National Survey of Patients (2008).
• Treatment Experiences and Preferences of Patients with Primary Immune Deficiency Diseases: First National Survey (2003).

To capture the impact the Patient Protection and Affordable Care Act (ACA), passed in 2010, had on those with PI, as well as to describe the general health insurance experiences of those impacted by PI, the foundation conducted a series of web-based surveys of patients in our database in 2014, 2015, and 2016. 

Download fact sheets + report

Methodology

IDF staff developed the IDF National Health Insurance Survey questionnaires. Each of the three individual surveys contained about 53 main questions, with an average completion time of approximately 25 minutes. Topics covered in the surveys included:

• Out-of-pocket costs, premium costs, deductibles, copays/co-insurances.
• Annual limits.
• Essential health benefits.
• Access to preferred therapy: product, site of care, and mode of infusion.
• Ability to access specialists.

Each of the survey study protocols was individually and independently reviewed by Schulman IRB Associates. All three surveys received exemptions from IRB review and approval.

The survey research team programmed, tested, piloted, refined, and fielded the surveys. All self-identified adults with PI and self-identified parents/caregivers of children with PI who also had a valid email address in the patient database received an invitation to participate. Survey participants were not offered incentives for their participation.

2014 survey | Executive summary

• In field: November 14, 2014 – December 4, 2014
• 9,133 invitations | 1,417 completed surveys

2015 survey

• In field: December 4, 2015 – December 31, 2015
• 10,532 invitations | 1,504 completed surveys

2016 survey

• In field: November 30, 2016 – January 15, 2017
• 11,198 invitations | 1,414 completed surveys

Funding for this survey project was provided in part by unrestricted grants from Grifols & Shire.

In 2006, three different national surveys were conducted in order to quantify reports from patients and healthcare providers that Medicare reimbursement for intravenous immunoglobulin (IVIG) was insufficient. These surveys included a national patient survey of patients, a survey of hospital pharmacists, and a national survey of immunologists conducted with the American Academy of Asthma, Allergy, and Immunology (AAAAI). The results from these surveys indicated that Medicare patients had more difficulty obtaining IVIG infusions and suffered more health problems than patients with private insurance.

• IDF and AAAAI Immunologist Survey Regarding IVIG Treatment (2007).
• Hospital Usage of Intravenous Immunoglobulin: A 2006 Survey of Pharmacy Directors.
• Assessing the Impact of Changes in Reimbursement Regulations and Product Availability On Access to Intravenous Gammaglobulin Treatment Among Primary Immune Deficiency Patients (2006).