Immune
Deficiency Foundation Surveys
The Immune Deficiency Foundation (http://www.primaryimmune.org) is
the national non-profit health organization dedicated
to improving the diagnosis and treatment of primary
immune deficiency diseases (PIDD) through research and
education. PIDD is a class of disorders caused by a
defect in the human immune system, which affects an
estimated 50,000 people in the United States. Most
people with antibody deficiency forms of PIDD receive
treatment through regular infusions of intravenous
gammaglobulin (IVIG), which for most of these patients
is the only effective therapy.
The purpose of this study was to determine the extent to
which unavailability of IVIG is negatively impacting
patient treatment and health and, more specifically, how
much recent reductions in Medicare reimbursement rates are
affecting patients’ ability to obtain IVIG infusions.
Separate surveys of patients, hospital pharmacists, and
doctors were conducted in 2006 to obtain information on
these questions. Each used a different method of data
collection – a mailed out printed questionnaire (patients),
web-based Internet survey (doctors), and telephone
interviews (pharmacists).
Groeneman Research & Consulting assisted the IDF with
all three surveys, contributing to the instrument
development (all three), coordinating and monitoring the
data collection (pharmacist survey), preparing slides that
the IDF used in presentations to Congressional staff and
healthcare agencies (patient and pharmacist surveys), and
completing detailed analytic reports with statistical
graphs (patient and pharmacist surveys). GR&C also
assisted in selecting and contracting with the survey
interviewing company to conduct the telephone interviews
with hospital pharmacists.
