2013 National Treatment Survey. Immune Deficiency Foundation

Transcription

1 2013 National Treatment Survey Immune Deficiency Foundation

2 IDF 2013 Treatment Survey Mail-based, pencil & paper survey Over 75 Main questions Survey in the field December 2013-March 2014 IDF mail invitation to 4,000 individuals from IDF s database identified as either a patient or a parent or a patient with a PI Second invitation sent January 27, 2014 to non-respondents Survey closed on Monday March 31, ,608 completed the survey Traditional survey would place the expected survey sampling error at +/- 2.4% for the full sample at the 95% Confidence Level Data from patients that are currently using IVIG or SCIG will be presented on the following slides

3 Patient or Parent/Caregiver PI Patient Parent/caregiver Both 18% 80% 3% Q1. Are you a patient with a primary immunodeficiency disease (PI) or parent/caregiver of a child in the household with PI? N=1,425 Base: Respondents that are currently receiving IVIG or SCIG

4 PI Diagnosis Common Variable Immunodeficiency 81% IgG Subclass Deficiency 12% IgA Deficiency 6% Agammaglobulinemia 6% Severe Combined Immune Deficiency 2% Specific Antibody Deficiency 2% Hyper IgM Syndrome 1% Wiskott-Aldrich Syndrome 0.3% Other 5% 0% 30% 40% 50% 60% 70% 80% 90% Q5. What is the specific diagnosis of that person s immunodeficiency disease? N=1,412 Base: Patients who currently use IVIG or SCIG

5 No Longer Using Ig Therapy IVIG Only IVIG and SCIG SCIG Only N=37 N=19 N=3 70% 67% 60% 51% 50% 42% 42% 40% 33% 30% 27% 24% 22% 21% 11% 0% 0% 0% Immunoglobulin no longer prescribed by the doctor as medically necessary Safety/side effects Lack of insurance coverage/ inadequate insurance Too expensive (despite good insurance) Q21b. Why is the patient no longer being treated with immunoglobulin? SELECT ALL THAT APPLY Base: Patients who stopped using Ig therapy

6 Ig Therapy: Has the Patient EVER Used IVIG vs. SCIG 90% 80% 83% IVIG SCIG N=776 N=645 90% 80% 70% 60% 50% 40% 70% 60% 50% 40% 66% 30% 30% 27% 0% 12% 4% 2% 0% 0.3% 6% IVIG Only IVIG and SCIG IVIG and IM IVIG, SCIG and IM SCIG Only IVIG and SCIG SCIG and IM IVIG, SCIG and IM Q19a. Has the patient EVER been treated with intravenous immunoglobulin (IVIG), subcutaneous immunoglobulin (SCIG) therapy or intramuscular (IM) immunoglobulin therapy on a regular basis? SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG

7 Average Years on Ig Therapy by All Ig Therapies Ever Used Currently on IVIG Currently on SCIG Currently on IM Average Median N=619 N=87 N=30 N=14 N=169 N=417 N=2 N=1 N=39 N=1 N=1 IVIG Only IVIG and IVIG and IM IVIG, SCIG SCIG Only IVIG and SCIG and IM IVIG, SCIG IM Only IVIG and IM SCIG and IM SCIG and IM SCIG and IM Q19a. Has the patient EVER been treated with intravenous immunoglobulin (IVIG), subcutaneous immunoglobulin (SCIG) therapy or intramuscular (IM) immunoglobulin therapy on a regular basis? SELECT ALL THAT APPLY Q20. How many years, in total, has he/she been treated for immunodeficiency (Ig therapy) on a regular basis? Base: Patients who currently use IVIG, SCIG or IM

8 Type of Ig Therapy Currently Used IVIG SCIG 55% 45% Q21a. Is he/she currently being treated with SCIG, IVIG or IM for his/her immunodeficiency disease? N=1,425 Base: Patients who currently use IVIG or SCIG

9 Year Started Using SCIG Therapy 70% 60% 58% 50% 40% 41% 30% 0% 0.1% 1980 to to to 2013 Q22. What year did you start SCIG? N=622 Base: Patients who currently use SCIG

10 Difficulty Learning to Administer SCIG 60% 50% 53% 40% 37% 30% 0% 1% 2% Easy Not too difficult Somewhat difficult Very difficult Q23a. How difficult was it learning to administer SCIG? N=636 Base: Patients who currently use SCIG

11 Difficulty Administering SCIG 60% 55% 50% 40% 38% 30% 7% 0% 0.5% Easy Not too difficult Somewhat difficult Very difficult Q23a. How difficult is it to administer SCIG? N=634 Base: Patients who currently use SCIG

12 Last Time HCP Evaluated SCIG Technique Less than six months 6-12 months 1 year or longer 11% 78% Q24. When was the last time a health professional, such as a nurse or doctor, observed and evaluated the patient s SCIG infusion technique? N=629 Base: Patients who currently use SCIG

13 IVIG Prior to SCIG Yes No 79% 21% Q26. Prior to SCIG therapy did the patient receive IVIG therapy? N=636 Base: Patients who currently use SCIG

14 Switched Products Switched from IVIG to SCIG Switched from SCIG to IVIG Only Used SCIG Only Used IVIG 8% 36% 47% Has the patient switched Ig products? N=1,273 Base: Patients who currently use IVIG, SCIG

15 Why Did the Patient Switch from IVIG to SCIG 60% 56% 50% 40% 43% 41% 35% 30% 22% 13% 9% 4% 4% 0% Q27. Why did the patient switch from IVIG to SCIG? SELECT ALL THAT APPLY N=495 Base: Patients who received IVIG before using SCIG

16 Perceived SCIG Effectiveness 50% 45% 45% 40% 35% 30% 25% 26% 28% 15% 5% 0% 1% 0.2% Much better than IVIG Better than IVIG About the same as IVIG Worse than IVIG Much worse than IVIG Q28. Compared to IVIG therapy how well do you feel SCIG therapy controls the patient s PI? N=489 Base: Patients who received IVIG before using SCIG

17 Patient EVER Used SCIG Yes No 17% 83% Q29a. Has the patient ever been on SCIG therapy? N=762 Base: Patients who currently use IVIG or IM

18 No Longer Using SCIG 60% 50% 50% 40% 30% 27% 24% 16% 14% 30% 11% 3% 3% 2% 0% Q29b. Did the patient experience any of the following infections during the 12 months prior to diagnosis? N=129 Base: Patients who currently use IVIG or IM that also used SCIG

19 Frequency of Ig Treatment* 60% 50% 40% 30% 30% IVIG SCIG N=735 N=638 90% 56% 81% 80% 70% 60% 50% 40% 30% 0% 9% 1% 3% 0% 2% 3% 9% 4% 0.2% 1% * p<.001 Q30. On average, how often does he/she get their IVIG or SCIG therapy? Base: Patients who currently use IVIG or SCIG

20 Grams of Ig per Infusion for Adult Patients 1 to 10 grams 11 to 20 grams 21 to 30 grams 31 to 40 grams More than 40 grams IVIG SCIG 4% 12% 30% 1% 4% 3% 58% 27% 27% 34% Mean: 37.0 Median: 35.0 Mean: 12.5 Median: 10.0 N=612 N=296 Q31. About how many grams of Ig per infusion does he/she normally receive? Base: Adult Patients who currently use IVIG or SCIG

21 Who Administers Ig Therapy Doctor Nurse Patient (self-infused) Other family member Other 0.4% IVIG 0.3% 3% SCIG 3% 5% 21% 91% 75% N=768 Q32. Who usually administers the therapy? Base: Patients who currently use IVIG or SCIG N=612

22 Where is Ig Therapy Administered IVIG SCIG N=736 N=636 At home, self-infused 7% 94% At home, nurse infused 2% 35% Infusion suite 1% 28% Hospital outpatient 1% 15% Doctor's private office 0.2% 7% Hospital clinic Other 5% 0.2% 3% 3% 0% 30% 40% 50% 60% 70% 80% 90% 100% Q33. Where does the patient usually receive his/her Ig therapy? Base: Patients who currently use IVIG or SCIG

23 Total Time to Complete Ig Therapy IVIG Less than 1 hour 1 to 2 hours More than 2 hours SCIG 1% 7% 36% 89% 57% Mean: 4.0 Median: 4.0 Mean: 2.1 Median: 2.0 N=777 N=635 Q34. How long does the therapy usually take? Base: Patients who currently use IVIG or SCIG

24 Who Determines the Rate of Infusion Patient/parent Doctor Nurse Other IVIG SCIG 4% 11% 18% 12% 28% 56% 4% 66% N=768 Q36. Who determines the rate of infusion? Base: Patients who currently use IVIG or SCIG N=612

25 Currently: Patient s General Health IVIG vs. SCIG IVIG SCIG N=764 N=625 40% 35% IVIG: 59% Good or better SCIG: 66% Good or better 32% 35% 30% 25% 21% 26% 28% 24% 15% 11% 5% 5% 4% 8% 2% 2% 0% Excellent Very good Good Fair Poor Very poor Q52. In general would you say the patient s health is Base: Patients who currently use IVIG or SCIG

26 Other Chronic Conditions Prior to Diagnosis In the Past 12 Months 70% 63% N=1,070 N=1,057 60% 50% 55% 50% 40% 30% 36% 36% 34% 32% 29% 30% 37% 0% 16% 13% 13% 11% 14% 6% 6% 2% 4% 2% 1% Q10. During the 12 months prior to diagnosis, did he/she have? SELECT ALL THAT APPLY Q53. During the PAST 12 MONTHS, has he/she had Base: Patients who currently use IVIG or SCIG

27 Infections Prior to Diagnosis IVIG vs. SCIG Sinusitis Bronchitis Pneumonia Ear Infection Diarrhea Candida Skin Infection Eye Infection Abscess None 2% 1% 12% 12% 25% 25% 21% 26% 19% IVIG SCIG N=754 N=630 55% 53% 43% 50% 38% 43% 67% 71% 78% 82% 0% 30% 40% 50% 60% 70% 80% 90% Q11. Did the patient experience any of the following infections during the 12 months prior to diagnosis? Base: Patients who currently use IVIG or SCIG

28 Infections in the Past 12 Months IVIG vs. SCIG IVIG SCIG N=762 N=630 Sinusitis Bronchitis Pneumonia Ear Infection Diarrhea Candida Skin Infection Eye Infection Abscess None 15% 11% 17% 15% 18% 17% 17% 13% 7% 6% 13% 12% 31% 36% 38% 35% 66% 71% 0% 30% 40% 50% 60% 70% 80% Q54. Did he/she experience the following infections during the PAST 12 MONTHS? Base: Patients who currently use IVIG or SCIG

29 Number of Infections in the Past 12 Months IVIG vs. SCIG IVIG SCIG Average Median N=419 N=405 N=251 N=231 N=108 N=64 N=118 N=115 N=163 N=149 N=91 N=100 N=104 N=91 N=86 N=58 N=46 N=34 Sinusitis Bronchitis Pneumonia Ear Infection Diarrhea Candida Skin Infection Eye Infection Abscess Q54. Did the patient experience any of the following infections during the 12 months prior to diagnosis? Base: Patients who currently use IVIG or SCIG and reported at least 1 infection

30 Activity Limitation Prior to Diagnosis In the Past 12 Months N=1,395 N=1,397 45% Prior to Diagnosis: 32% No to slight limitation 40% 38% 40% In the Past 12 Months: 58% No to slight limitation 35% 30% 29% 28% 25% 24% 15% 13% 8% 5% 0% No limitation Slight limitation Moderate limitation Severe limitation Q12. During the 12 months prior to diagnosis, how much was he/she limited in work, play or normal physical activity as a result of his/her health. Q55. During the PAST 12 MONTHS, how much has he/she been limited in work, play or normal physical activity as a result of his/her health? Base: Patients who currently use IVIG or SCIG

31 Hospitalized Overnight Prior to Diagnosis Yes No In the Past 12 Months 46% 78% 54% 22% N=1,407 N=1,403 Q13a. Was he/she hospitalized overnight or longer for any reason during the 12 months prior to diagnosis? Q56a. Has he/she been hospitalized overnight or longer for any reason during the past 12 months? Base: Patients who currently use IVIG or SCIG

32 Number of Hospitalizations and Operations Prior to Diagnosis In the Past 12 Months Average Median N=600 N=307 N=575 N=303 N=128 N=39 N=244 N=155 N=407 N= Times Hospitalized Overnight Nights Hospitalized Nights in Intensive Care Unit Inpatient Operations Outpatient Operations Q13b. How many TIMES was he/she hospitalized in the 12 months prior to diagnosis? Q13c. How many NIGHTS was he/she hospitalized in the 12 months prior to diagnosis? Q13d. How many NIGHTS, if any, was he/she in an INTENSIVE CARE UNIT in the 12 months prior to diagnosis? Q56b. How many TIMES was he/she hospitalized in the past 12 months? Q56c. How many NIGHTS was he/she hospitalized in the past 12 months? Q56d. How many NIGHTS, if any, was he/she in an INTENSIVE CARE UNIT in the past 12 months? Base: Patients who currently use IVIG or SCIG who experienced an overnight hospitalization Q14. How many operations, if any, did he/she have in the 12 months prior to diagnosis? Q57. How many operations, if any, did he/she have in the past 12 months? Base: Patients who currently use IVIG or SCIG

33 Used for More Than One Week Prior to Diagnosis In the Past 12 Months 100% 90% 80% 88% 88% 81% 91% 70% 60% 67% 61% 50% 46% 40% 36% 30% 27% 27% 21% 19% 0% N=1,104 N=1,189 N=575 N=778 N=404 N=385 N=201 N=302 N=226 N=253 N=166 N=220 Antibiotics Other Prescription Drugs Respiratory Therapy Physical Therapist Oxygen Visiting Nurse Q15. In the 12 months prior to diagnosis, approximately how many days did he/she use. Q58. Approximately how many days in the past 12 months did he/she use.. Base: Patients who currently use IVIG or SCIG

34 Doctor Visits Prior to Diagnosis In the Past 12 Months Average Median N=1,173 N=1,249 N=1,003 N=1,261 Primary Care Specialty Care Q16. Not counting hospitalizations, about how many DOCTOR VISITS did the patient make during the 12 months prior to diagnosis? Q59a. Not counting hospitalizations, about how many doctor visits did the patient make during the past 12 months? Base: Patients who currently use IVIG or SCIG

35 Missed Days from Work or School 35 Prior to Diagnosis In the Past 12 Months 32.2 Average Median N=542 N=549 N=229 N=237 Work School Q17. Not counting hospitalizations, how many days was he/she too sick to work, go to school or perform usual activities in the 12 months prior to diagnosis? Q60. Not counting hospitalizations, how many days was he/she too sick to work, go to school or perform usual activities in the past 12 months? Base: Patients who currently use IVIG or SCIG Note: Patients with PI and Parents/Caregivers who are too disabled to work or retired were excluded

36 Patient s PI Physician Immunologist 80% Allergist 17% Hematologist 8% Pulmonologist 8% ENT 3% Other 0% 30% 40% 50% 60% 70% 80% 90% Q18a. Which type of physician is responsible for the treatment and management of the patient s PI? N=1,413 Base: Patients who currently use IVIG or SCIG

37 In the Past 12 Months: Number of Times Physician Was Seen * IVIG vs. SCIG 45% 42% 42% IVIG SCIG N=766 N=641 40% 35% 30% 38% 35% IVIG Mean: 5.2 SCIG Mean: % 15% 5% 0% 11% 8% 14% 7% 2% 1% 1 to 2 times 3 to 5 times 6 to 10 times More than 10 times None * p<.001 Q18b. How many times over the past 12 months has the patient seen this physician? Base: Patients who currently use IVIG or SCIG

38 Antihistamine Usually Prescribed Before Ig Therapy Administered Yes No IVIG SCIG 62% 40% 60% 38% N=677 N=519 Q37a. Is he/she given medication before Ig therapy, like an antihistamine, cortico-steroid or anti-inflammatory like Tylenol or Motrin, to make it go easier or faster? Base: Patients who currently use IVIG or SCIG

39 Antihistamine Usually Prescribed Before Ig Therapy Administered * IVIG vs. SCIG 1 IVIG SCIG N=421 N= % 100% 80% 79% 60% 40% 21% 0% * p<.001 By Mouth Q37a. Is he/she given medication before Ig therapy, like an antihistamine, cortico-steroid or anti-inflammatory like Tylenol or Motrin, to make it go easier or faster? SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG that are usually prescribed antihistamines IV 0%

40 Antihistamine Sometimes Prescribed Before Ig Therapy Administered Yes No IVIG SCIG 84% 79% 16% 21% N=303 N=396 Q37a. Is he/she given medication before Ig therapy, like an antihistamine, cortico-steroid or anti-inflammatory like Tylenol or Motrin, to make it go easier or faster? Base: Patients who currently use IVIG or SCIG

41 Antihistamine Sometimes Prescribed Before Ig Therapy Administered * IVIG vs. SCIG 1 IVIG SCIG N=47 N=85 100% 100% 80% 74% 60% 40% 26% 0% 0% By Mouth IV * p<.001 Q37a. Is he/she given medication before Ig therapy, like an antihistamine, cortico-steroid or anti-inflammatory like Tylenol or Motrin, to make it go easier or faster? SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG that are sometimes prescribed antihistamines

42 Steroid Usually Prescribed Before Ig Therapy Administered Yes No IVIG SCIG 93% 61% 39% 7% N=419 N=336 Q37a. Is he/she given medication before Ig therapy, like an antihistamine, cortico-steroid or anti-inflammatory like Tylenol or Motrin, to make it go easier or faster? Base: Patients who currently use IVIG or SCIG

43 Steroid Usually Prescribed Before Ig Therapy Administered * IVIG vs. SCIG 1 IVIG SCIG N=163 N=25 100% 96% 80% 60% 61% 40% 39% 0% 4% By Mouth IV * p<.001 Q37a. Is he/she given medication before Ig therapy, like an antihistamine, cortico-steroid or anti-inflammatory like Tylenol or Motrin, to make it go easier or faster? SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG that are usually prescribed steroids

44 Steroid Sometimes Prescribed Before Ig Therapy Administered Yes No IVIG SCIG 90% 91% 9% N=284 N=340 Q37a. Is he/she given medication before Ig therapy, like an antihistamine, cortico-steroid or anti-inflammatory like Tylenol or Motrin, to make it go easier or faster? Base: Patients who currently use IVIG or SCIG

45 Steroid Sometimes Prescribed Before Ig Therapy Administered * IVIG vs. SCIG 100% 90% 90% IVIG SCIG N=28 N=29 80% 70% 60% 57% 50% 40% 43% 30% 0% By Mouth IV * p<.01 Q37a. Is he/she given medication before Ig therapy, like an antihistamine, cortico-steroid or anti-inflammatory like Tylenol or Motrin, to make it go easier or faster? SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG that are sometimes prescribed steroids

46 Missed Work or School Due to Ig Therapy * IVIG Yes No SCIG 37% 5% 95% 63% * p<.001 N=762 N=633 Q38a. Does the patient (parent/caretaker) need to take off from school or work to get their Ig therapy? Base: Patients who currently use IVIG or SCIG

47 Missed Days from School Due to Ig Therapy Less than 7 days 7 to 21 days 22 to 60 days None 17% 12% 66% Mean: % Median: 10.0 Q38b. How many days in the past 12 months has the patient (parent/caretaker) needed to take off work or miss school to get their Ig therapy? N=89 Base: Patients who currently use IVIG or SCIG who missed days from school Note: Patients with PI and Parents/Caregivers who are too disabled to work or retired were excluded

48 Missed Days from Work Due to Ig Therapy Less than 7 days 7 to 21 days 22 to 60 days More than 60 days None 3% 1% 68% 8% Mean: 14.4 Median: 12.0 Q38b. How many days in the past 12 months has the patient (parent/caretaker) needed to take off work or miss school to get their Ig therapy? N=196 Base: Patients who currently use IVIG or SCIG who missed days from school Note: Patients with PI and Parents/Caregivers who are too disabled to work or retired were excluded

49 Side Effects of Ig Therapy Yes, experienced side effects during, after or both IVIG No, did not experience ANY side effects at any time SCIG 87% 90% 13% N=780 N=645 Q39. During the past 12 months, has he/she experienced any of the following during or after Ig therapy? Base: Patients who currently use IVIG or SCIG

50 Side Effects of Ig Therapy IVIG N=675 SCIG N=581 Side Effect % Fatigue 71% Headache 69% Muscle aches 39% Chills 35% Weakness 29% Nausea 28% Migraine headache 28% Fever 25% Dizziness 21% Anxiety 19% Diarrhea 19% Side Effect % Increase in blood pressure 17% Muscle spasms 13% Abdominal pain 13% Drop in blood pressure 13% Swelling at infusion site 12% Wheezing 9% Hives 8% Vomiting 8% Blood in tubing 3% Kidney problems 2% Hepatitis 0.4% Side Effect % Redness at infusion site 78% Swelling at infusion site 75% Fatigue 54% Headache 47% Blood in tubing 32% Muscle aches 29% Chills 24% Abdominal pain 24% Migraine headache 21% Anxiety 19% Weakness 17% Side Effect % Nausea 16% Fever 15% Dizziness 15% Muscle spasms Hives 8% Increase in blood pressure 8% Drop in blood pressure 5% Wheezing 4% Kidney problems 3% Vomiting 3% Hepatitis 1% Q39. During the past 12 months, has he/she experienced any of the following during or after Ig therapy? Base: Patients who currently use IVIG or SCIG who experienced a side effect

51 Serious Side Effects or Reactions IVIG Yes No SCIG 88% 82% 13% 18% N=744 N=616 Q40a. Has the patient ever had any of the following serious side-effects or reactions from their Ig? Base: Patients who currently use IVIG or SCIG that experienced a serious side effect or reaction

52 Serious Side Effects or Reactions Aseptic Meningitis 60% Blurred Vision 26% Blood Clots 12% Seizure 8% Stroke 6% Hemolytic Anemia 5% Pulmonary Embolism 3% 0% 30% 40% 50% 60% 70% Q40a. Has the patient ever had any of the following serious side-effects or reactions from their Ig? PLEASE SELECT ALL THAT APPLY N=205 Base: Patients who currently use IVIG or SCIG that experienced a serious side effect or reaction

53 Last Time Serious Side Effects or Reactions Occurred 0-6 months 7 to 12 months 1 to 2 years ago 3-4 years ago 5 years or more Never IVIG SCIG 28% 11% 8% 27% 1% 3% 11% 30% 14% 16% 25% 26% N=87 N=110 Q40b. When was the most recent time that he/she had a serious side effect or reaction from their Ig? Base: Patients who currently use IVIG or SCIG who experienced a serious side effect or reaction

54 Serious Side Effects or Reactions Caused the Patient to IVIG SCIG N=84 N=104 Slow down infusion rate Switch products 30% 49% 50% 51% Prefer a specific Ig product 18% 16% Only receive Ig in doctor's office 1% 9% Report the event to the FDA 4% 7% Other 30% 36% None of these 15% 13% 0% 30% 40% 50% 60% Q40c. Did the patient s side effect or reaction cause him/her to SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG IM who experienced a serious side effect or reaction

55 In the Past 12 Months Serious Side Effects or Reactions Caused the Patient to IVIG SCIG N=34 N=20 Slow down infusion rate 62% 55% Switch products 24% 35% Prefer a specific Ig product 5% 29% Only receive Ig in doctor's office 0% 3% Report the event to the FDA 6% Other 25% 32% None of these 15% 0% 30% 40% 50% 60% 70% Q40c. Did the patient s side effect or reaction cause him/her to SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG IM who experienced a serious side effect or reaction in the past 12 months

56 Was Doctor Told the Patient had a Serious Side-Effect or Reaction? IVIG Yes No SCIG 95% 5% 98% 2% N=87 N=110 Q40d. Was the doctor told about the patient s serious side-effect or reaction? Base: Patients who currently use IVIG or SCIG who experienced a serious side effect or reaction

57 In the Past 12 Months Was Doctor Told the Patient had a Serious Side-Effect or Reaction? IVIG Yes No SCIG 9% 91% 90% N=34 N=20 Q40d. Was the doctor told about the patient s serious side-effect or reaction? Base: Patients who currently use IVIG or SCIG who experienced a serious side effect or reaction in the past 12 months

58 IVIG What Did the Doctor Do? Slowed infusion rate 55% Switched products ONLY 37% Gave medicine 36% Nothing 16% Reduced amounts 8% Said it was normal 5% Changed from IVIG to SCIG ONLY 1% Changed from SCIG to IVIG ONLY 1% Switched products and Changed from SCIG to IVIG 1% 0% 30% 40% 50% 60% Q40e. What did the doctor do? N=76 Base: Patients who currently use IVIG who experienced a serious side effect or reaction

59 IVIG - In the Past 12 Months What Did the Doctor Do? Slowed infusion rate 62% Gave medicine 41% Switched products ONLY 38% Nothing 14% Reduced amounts 7% Said it was normal 7% Changed from SCIG to IVIG ONLY 3% Switched products and Changed from SCIG to IVIG 3% 0% 30% 40% 50% 60% 70% Q40e. What did the doctor do? N=29 Base: Patients who currently use IVIG who experienced a serious side effect or reaction in the past 12 months

60 SCIG What Did the Doctor Do? Changed from IVIG to SCIG ONLY Slowed infusion rate 48% 47% Gave medicine 38% Changed from SCIG to IVIG ONLY 28% Switched products and Changed from IVIG to SCIG Switched products ONLY 16% Reduced amounts Nothing Said it was normal 8% 8% Switched products and Changed from IVIG to SCIG and SCIG to IVIG 1% 0% 30% 40% 50% 60% Q40e. What did the doctor do? N=102 Base: Patients who currently use SCIG who experienced a serious side effect or reaction

61 SCIG - In the Past 12 Months What Did the Doctor Do? Slowed infusion rate 61% Switched products ONLY 33% Gave medicine 33% Changed from IVIG to SCIG ONLY 22% Changed from SCIG to IVIG ONLY 17% Said it was normal 11% Reduced amounts 11% Switched products and Changed from IVIG to SCIG 6% Nothing 6% 0% 30% 40% 50% 60% 70% Q40e. What did the doctor do? N=18 Base: Patients who currently use SCIG who experienced a serious side effect or reaction

62 Patient had a Serious Side-Effect or Reaction When IVIG SCIG N=83 N=104 50% 45% 40% 35% 46% 46% 36% 40% 30% 25% 15% 19% 22% 16% 13% 5% 0% Trying a new product for the first time Using a product with no previous problems Switched to a different product used before None of these Q40f. Has the patient ever had a serious side effect or reaction from Ig therapy when SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG who experienced a serious side effect or reaction

63 In the Past 12 Months Patient had a Serious Side-Effect or Reaction When IVIG SCIG N=34 N=20 70% 60% 50% 59% 55% 40% 40% 30% 29% 21% 24% 25% 0% Trying a new product for the first time Using a product with no previous problems Switched to a different product used before None of these Q40f. Has the patient ever had a serious side effect or reaction from Ig therapy when SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG who experienced a serious side effect or reaction in the past 12 months

64 Missed Work or School Due to Reaction from Ig Therapy Yes No 25% 74% Q41a. Has the patient (parent/caretaker of a patient) ever missed school or work due to a reaction from their Ig therapy? N=1,381 Base: Patients who currently use IVIG or SCIG

65 Missed Days from School Due to Reaction from Ig Therapy Less than 1 week 7 to 21 days 22 to 60 days None 39% 9% 3% Mean: 3.6 Median: % Q41b. How many days in the past 12 months has the patient (parent/caretaker of a patient) missed school or work due to reactions from Ig therapy? N=127 Base: Patients who currently use IVIG or SCIG who missed days from school

66 Missed Days from Work Due to Reaction from Ig Therapy Less than 1 week 7 to 21 days 22 to 60 days More than 60 days None 44% 8% 5% 1% Mean: % Median: 1.0 Q41b. How many days in the past 12 months has the patient (parent/caretaker of a patient) missed school or work due to reactions from Ig therapy? N=193 Base: Patients who currently use IVIG or SCIG who missed days from work

67 How Well Does Immunoglobulin Control the Patient s Immunodeficiency? IVIG vs. SCIG 50% 45% 44% 46% IVIG SCIG N=759 N=631 IVIG: 57% Completely or well controlled 40% 36% SCIG: 61% Completely or well controlled 35% 32% 30% 25% 15% 12% 14% 7% 6% 5% 0% 0.4% 1% Completely controlled Well controlled Adequately controlled Less than adequately controlled Poorly controlled Q42. How well does immunoglobulin control the patient s immunodeficiency? Base: Patients who currently use IVIG or SCIG

68 Does the Patient Experience Wear Off Effect? * Always Occasionally Never IVIG SCIG 44% 41% 27% 40% 16% 32% * p<.001 N=772 N=637 Q43a. Does the patient experience periods of fatigue or low energy between Ig therapy treatments (wear off)? Base: Patients who currently use IVIG or SCIG

69 How Long After the Infusion Does the Patient Experience the Wear Off Effect? * None/Never Less than 7 days 7 to 21 days More than 21 days IVIG SCIG 29% 1% 2% 90% 14% 57% 2% 7% Mean: 13.8 Median: 15.0 * p<.001 Mean: 4.2 Median: 4.0 N=594 N=384 Q43b. How long after infusion does he/she feel this wear off? Base: Patients who currently use IVIG or SCIG who experience wear off effect

70 Wear Off Effect by Frequency of Ig Treatment 80% 70% 60% 50% 63% 75% IVIG 50% None/Never Less than 7 days 7 to 21 days More than 21 days 100% 100% 93% 92% 90% 78% 60% 80% 70% 50% 60% SCIG 56% 100% 40% 30% 0% 35% 24% 26% 23% 17% 50% 33% 40% 2% 2% 2% 2% 5% 2% 2% 1% 1% 0% Every two weeks Every three weeks Every four weeks Every five weeks Every six weeks Daily Three times Two times Every week Every two Every three Every four or more per week per week weeks weeks weeks N=52 N=187 N=305 N=5 N=12 N=1 N=9 N=41 N=305 N=16 N=1 N=7 30% 22% 44% 43% 29% 29% * p<.001 Q30. On average, how often does he/she get their IVIG or SCIG therapy? Q43b. How long after infusion does he/she feel this wear off? Base: Patients who currently use IVIG or SCIG who experience wear off effect

71 The Wear Off Effect Leads to IVIG vs. SCIG IVIG SCIG N=558 N=356 Decreased performance in usual activities 81% 79% Forgoing of a pleasurable activity Forgoing usual activity 54% 52% 51% 49% Infection Need for antibiotics Need for other medication Missed school or work 27% 24% 21% 17% 17% 13% 36% 35% 0% 30% 40% 50% 60% 70% 80% 90% Q43c. Does the wear off result in any of the following? SELECT ALL THAT APPLY Base: Current Ig therapy users who experienced wear off effect

72 Top 5 Wear Off Effects Side Effects by Frequency of IVIG Treatment Decreased Performance in Usual Activities Forgoing of a Pleasurable Activity Forgoing Usual Activity Infection Need for Antibiotics 100% 100% 90% 80% 84% 73% 81% 80% 89% 70% 60% 61% 58% 59% 50% 45% 44% 48% 44% 44% 44% 44% 40% 30% 35% 33% 31% 30% 22% 0% Every two weeks Every three weeks Every four weeks Every five weeks Every six weeks or more N=49 N=177 N=288 N=5 N=9 Q30. On average, how often does he/she get their IVIG or SCIG therapy? Q43c. Does the wear off result in any of the following? SELECT ALL THAT APPLY Base: Patients who currently use IVIG who experience wear off effect

73 Top 5 Wear Off Effects Side Effects by Frequency of SCIG Treatment Decreased Performance in Usual Activities Forgoing of a Pleasurable Activity Forgoing Usual Activity Infection Need for Antibiotics 100% 100% 100% 100% 100% 100% 90% 80% 75% 83% 78% 87% 70% 60% 50% 63% 48% 45% 52% 48% 67% 67% 53% 47% 67% 67% 67% 50% 50% 40% 38% 38% 38% 30% 28% 25% 25% 22% 0% Daily Three times per week Two times per week Every week Every two weeks Every three weeks Every four weeks N=1 N=8 N=40 N=281 N=15 N=1 N=6 Q30. On average, how often does he/she get their IVIG or SCIG therapy? Q43c. Does the wear off result in any of the following? SELECT ALL THAT APPLY Base: Patients who currently use SCIG who experience wear off effect

74 Does the Patient Tolerate Some Ig Products Better Than Others? All about the same Some better than others Have only been on one product IVIG SCIG 41% 25% 29% 41% 34% 30% N=765 N=635 Q44. Does he/she tolerate any immunoglobulin products better than others, or are they all about the same? Base: Patients who currently use IVIG or SCIG

75 Due to Tolerability Concerns, Patients 70% IVIG SCIG N=771 N=631 60% 58% 60% 50% 40% 30% 30% 33% 18% 18% 15% 0% Switched to another product Switched off a product Refused a particular product Delayed a scheduled infusion None of these Q45. As a result of concerns about product tolerability has he/she ever SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG

76 Due to Product Effectiveness, Patients 90% IVIG SCIG N=759 N=625 80% 77% 78% 70% 60% 50% 40% 30% 15% 17% 7% 8% 4% 5% 3% 0% Switched to another product Switched off a product Refused a particular product Delayed a scheduled infusion None of these Q46. As a result of product effectiveness has he/she ever SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG

77 How Often Does the Patient Get Their Preferred Ig Product? Always Most of the time Some of the time Only occasionally Only tried one product Never IVIG 9% 1% 1% SCIG 3% 0.2% 0.3% 11% 2% 8% 1% 76% 87% N=734 N=612 Q48. How often does he/she get the Ig product they prefer most? Base: Patients who currently use IVIG or SCIG

78 Satisfaction with Current Ig Product IVIG vs. SCIG Very satisfied Somewhat satisfied Neither Somewhat dissatisfied Very dissatisfied IVIG SCIG 17% 4% 18% 3% 2% 1% 2% 0.5% 77% 77% N=771 N=634 Q49. How satisfied is the patient with the Ig product currently being used? Base: Patients who currently use IVIG or SCIG

79 Who Selects the Patient s Ig Product? Doctor Medical plan/facility Patient Insurance provider Other IVIG SCIG 2% 12% 5% 8% 4% 4% 5% 2% 84% 75% N=694 N=585 Q50. Who is primarily responsible for the selection of the Ig product that the patient uses? Base: Patients who currently use IVIG or SCIG

80 How Much is the Patient Bothered by Convenience of Their Treatment 70% IVIG SCIG N=759 N=624 60% 57% 59% 50% 40% 30% 24% 29% 13% 9% 4% 2% 2% 1% 0% Not Bothered at All Bothered a Little Bit Moderately Bothered Bothered Quite a Bit Extremely Bothered Q51A. Thinking about the patient s experience with their CURRENT Ig therapy, please tell us how much the patient is bothered, if at all, by each of the following. Base: Patients who currently use IVIG or SCIG

81 How Much is the Patient Bothered by Severe Side-Effects 90% IVIG SCIG N=755 N=621 80% 70% 71% 78% 60% 50% 40% 30% 14% 13% 8% 4% 4% 3% 3% 1% 0% Not Bothered at All Bothered a Little Bit Moderately Bothered Bothered Quite a Bit Extremely Bothered Q51A. Thinking about the patient s experience with their CURRENT Ig therapy, please tell us how much the patient is bothered, if at all, by each of the following. Base: Patients who currently use IVIG or SCIG

82 How Much is the Patient Bothered by Minor Side-Effects 50% 45% 45% IVIG SCIG N=757 N=625 40% 35% 36% 35% 39% 30% 25% 15% 17% 14% 5% 5% 4% 2% 1% 0% Not Bothered at All Bothered a Little Bit Moderately Bothered Bothered Quite a Bit Extremely Bothered Q51A. Thinking about the patient s experience with their CURRENT Ig therapy, please tell us how much the patient is bothered, if at all, by each of the following. Base: Patients who currently use IVIG or SCIG

83 How Much is the Patient Bothered by Local Site Reactions 80% 70% 74% IVIG SCIG N=754 N=630 60% 50% 48% 40% 30% 26% 21% 18% 0% 4% 6% 1% 1% 3% Not Bothered at All Bothered a Little Bit Moderately Bothered Bothered Quite a Bit Extremely Bothered Q51A. Thinking about the patient s experience with their CURRENT Ig therapy, please tell us how much the patient is bothered, if at all, by each of the following. Base: Patients who currently use IVIG or SCIG

84 How Much is the Patient Bothered by Number of Needle Sticks 60% IVIG SCIG N=752 N=628 53% 50% 40% 35% 35% 30% 24% 18% 11% 7% 8% 5% 5% 0% Not Bothered at All Bothered a Little Bit Moderately Bothered Bothered Quite a Bit Extremely Bothered Q51A. Thinking about the patient s experience with their CURRENT Ig therapy, please tell us how much the patient is bothered, if at all, by each of the following. Base: Patients who currently use IVIG or SCIG

85 How Much is the Patient Bothered by Time to Infuse 45% 43% 42% IVIG SCIG N=758 N=630 40% 35% 33% 30% 28% 25% 15% 17% 16% 5% 7% 7% 5% 2% 0% Not Bothered at All Bothered a Little Bit Moderately Bothered Bothered Quite a Bit Extremely Bothered Q51A. Thinking about the patient s experience with their CURRENT Ig therapy, please tell us how much the patient is bothered, if at all, by each of the following. Base: Patients who currently use IVIG or SCIG

86 How Much is the Patient Bothered by Number of Infusions Each Month 80% IVIG SCIG N=754 N=629 70% 67% 60% 50% 40% 30% 38% 35% 16% 0% 8% 4% 7% 1% 4% Not Bothered at All Bothered a Little Bit Moderately Bothered Bothered Quite a Bit Extremely Bothered Q51A. Thinking about the patient s experience with their CURRENT Ig therapy, please tell us how much the patient is bothered, if at all, by each of the following. Base: Patients who currently use IVIG or SCIG

87 How Much is the Patient Bothered by Cost of Infusions 40% 37% 38% IVIG SCIG N=754 N=620 35% 30% 27% 25% 24% 15% 14% 11% 11% 12% 13% 12% 5% 0% Not Bothered at All Bothered a Little Bit Moderately Bothered Bothered Quite a Bit Extremely Bothered Q51A. Thinking about the patient s experience with their CURRENT Ig therapy, please tell us how much the patient is bothered, if at all, by each of the following. Base: Patients who currently use IVIG or SCIG

88 How Much is the Patient Bothered by Interrupts Life IVIG SCIG N=753 N=631 40% 37% 35% 30% 29% 29% 31% 25% 22% 23% 15% 5% 7% 8% 5% 0% Not Bothered at All Bothered a Little Bit Moderately Bothered Bothered Quite a Bit Extremely Bothered Q51A. Thinking about the patient s experience with their CURRENT Ig therapy, please tell us how much the patient is bothered, if at all, by each of the following. Base: Patients who currently use IVIG or SCIG

89 How Much is the Patient Bothered by Operating Pump or Infusion Device IVIG SCIG N=712 N=630 90% 80% 84% 81% 70% 60% 50% 40% 30% 0% 9% 13% 5% 4% 1% 1% 1% 1% Not Bothered at All Bothered a Little Bit Moderately Bothered Bothered Quite a Bit Extremely Bothered Q51A. Thinking about the patient s experience with their CURRENT Ig therapy, please tell us how much the patient is bothered, if at all, by each of the following. Base: Patients who currently use IVIG or SCIG

90 How Much is the Patient Bothered by Other Aspects of Ig Therapy IVIG SCIG N=75 N=80 50% 45% 40% 35% 39% 48% Other aspects reported: Fatigue Health Insurance Issues Nurse Training and Availability 33% 30% 25% 27% 15% 5% 5% 4% 15% 15% 6% 0% Not Bothered at All Bothered a Little Bit Moderately Bothered Bothered Quite a Bit Extremely Bothered Q51A. Thinking about the patient s experience with their CURRENT Ig therapy, please tell us how much the patient is bothered, if at all, by each of the following. Base: Patients who currently use IVIG or SCIG

91 How Much is the Patient Bothered by Ig Therapy Overall 60% IVIG SCIG N=776 N=632 50% 51% 43% 40% 35% 30% 24% 16% 18% 5% 4% 2% 2% 0% Not Bothered at All Bothered a Little Bit Moderately Bothered Bothered Quite a Bit Extremely Bothered Q51B. Overall, how bothered is the patient when they get Ig Therapy? Base: Patients who currently use IVIG or SCIG

92 Prophylactic Antibiotic Therapy Less than 1 month 1 to 6 months Longer than 6 months Did not take any antibiotics 13% 17% 21% 49% Q61. In the past 12 months, how long has the patient taken antibiotics to prevent infections (prophylactically)? N=1,349 Base: Patients who currently use IVIG or SCIG

93 Prophylactic Antibiotic Therapy by Ig Therapy 50% 45% 40% 35% 30% Antibiotics and IVIG N=386 46% 42% 41% 31% IVIG Only N=334 Antibiotics and IVIG: 50% Completely or well controlled IVIG Only: 65% Completely or well controlled 60% 50% 40% Antibiotics and SCIG SCIG Only N=290 N=309 50% 42% 38% Antibiotics and SCIG: 53% Completely or well controlled SCIG Only: 68% Completely or well controlled 25% 15% 18% 30% 18% 26% 5% 0% 8% Completely controlled Well controlled Adequately controlled 8% 4% Less than adequately controlled 1% 0.3% Poorly controlled 0% 11% Completely controlled Well controlled Adequately controlled 7% 6% Less than adequately controlled 2% 0.3% Poorly controlled Q42. How well does immunoglobulin control the patient s immunodeficiency? Q61. In the past 12 months, how long has the patient taken antibiotics to prevent infections (prophylactically)? Base: Patients who currently use IVIG or SCIG

94 Antibiotics to Treat an Infection Less than 1 month 1 to 6 months Longer than 6 months Did not take any antibiotics 46% 34% 7% 13% Q62. In the past 12 months, how long has the patient taken antibiotics for an active infection? N=1,365 Base: Patients who currently use IVIG or SCIG

95 Current Health Insurance IVIG vs. SCIG 70% 60% 50% 55% 62% IVIG SCIG N=770 N=637 40% 30% 26% 0% 19% 11% 8% 11% 8% 9% 8% 7% 11% 9% 4% 3% 3% 3% 2% 2% 1% 1% 1% 1% 1% 0.5% 0.3% 0.5% 1% 1% Q63. What kind of health insurance does the PATIENT currently have? SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG

96 Problem Getting Regular Infusion IVIG Yes No SCIG 22% 26% 78% 74% N=769 N=637 Q64. In the past three years, due to health insurance, has the patient ever had a problem in getting his/her regular infusion? Base: Patients who currently use IVIG or SCIG

97 Last Time Patient Had A Problem Getting Their Regular Infusion 35% 30% IVIG SCIG N=162 N=158 31% 29% 29% 28% 25% 24% 23% 18% 18% 15% 5% 0% Past month Past six months Past year Two to three years ago Q65. When was the most recent time the patient had a problem getting his/her regular infusion due to health insurance? Base: Patients who currently use IVIG or SCIG

98 Problems Due to Health Insurance Yes No IVIG SCIG 40% 37% 60% 63% N=769 N=637 Q66. In the past 12 months, which of the following problems, if any, has the patient experienced due to health insurance? Base: Patients who currently use IVIG or SCIG

99 Problems Due to Health Insurance 50% 45% 40% 35% 30% 25% 15% 5% 0% 34% 43% 26% 24% 16% 14% 17% 13% IVIG SCIG N=302 N=230 19% 13% 9% 9% 9% 5% 1% 6% 5% 36% 34% 4% 3% 3% 3% 3% 0.4% Q66. In the past 12 months, which of the following problems, if any, has the patient experienced due to health insurance? SELECT ALL THAT APPLY Base: Patients who currently use IVIG or SCIG who experienced problems due to health insurance

100 Number of Times Patient Had a Problem Getting Regular Infusion 70% IVIG SCIG N=220 N=187 60% 60% 57% IVIG Mean: % SCIG Mean: % 30% 14% 16% 22% 19% 0% 4% 6% 0% 2% 1 to 2 times 3 to 5 times 6 to 10 times More than 10 times None Q67. How many times in the past 12 months has the patient experienced a problem getting his/her regular infusion? Base: Patients who currently use IVIG or SCIG

101 Patient or Parent/Caregiver PI Patient Parent/caregiver Both 18% 80% 3% Q1. Are you a patient with a primary immunodeficiency disease (PI) or parent/caregiver of a child in the household with PI? N=1,425 Base: Respondents that are currently receiving IVIG or SCIG

102 Age of Patient IVIG vs. SCIG and older IVIG SCIG 15% 21% 19% 15% 11% 23% 21% 33% 15% 29% Mean: 48.3 Median: 52.0 Mean: 43.0 Median: 47.0 N=780 N=644 Q2. What is the date of birth of the (adult patient/oldest child) in the household with a primary immunodeficiency disease? Base: Respondents that are currently receiving IVIG or SCIG

103 Years from Onset of Symptoms to Diagnosis At birth 1 to 5 years 6 to 20 years More than 20 years Symptoms presented after diagnosis 1% 7% 33% 28% Mean: 15.0 Median: % Q4. At what age (in years) was that person first diagnosed with a primary immunodeficiency disease? Q6B. At what age (in years) did these repeated, serious, or unusual infections begin? N=1,251 Base: Patients that are currently receiving IVIG or SCIG

104 Prior to Diagnosis: Repeated, Unusual or Serious Infections Yes No 95% 5% Q6a. Did the patient experience repeated, serious, or unusual infections prior to initial diagnosis as immune deficient? N=1,420 Base: Patients that are currently receiving IVIG or SCIG

105 Prior to Diagnosis: Age of Onset of Repeated, Unusual or Serious Infections IVIG vs. SCIG and older IVIG SCIG 64% 57% 18% 17% 14% Mean: 18.5 Mean: 15.6 Median: % 5% Median: 7.0 1% 4% N=684 N=573 Q6B. At what age (in years) did these repeated, serious, or unusual infections begin? Base: All patients who are currently taking IVIG or SCIG who experienced repeated, serious, or unusual infections prior to initial diagnosis

106 Years from Onset of Symptoms to Diagnosis by PI Diagnosis Average Median Specific Antibody Common Variable IgG Subclass IgA Deficiency Severe Combined Hyper IgM Syndrome Agammaglobulinemia Wiskott-Aldrich Other Deficiency Immunodeficiency Deficiency Immune Deficiency Syndrome N=12 N=908 N=66 N=7 N=14 N=5 N=58 N=1 N= Q4. At what age (in years) was that person first diagnosed with a primary immunodeficiency disease? Q5. What is the specific diagnosis of that person s immunodeficiency disease? Q6B. At what age (in years) did these repeated, serious, or unusual infections begin? Base: Patients that are currently receiving IVIG or SCIG with only 1 PI diagnosis 0.5 <

107 Take Aways Type of Ig Therapy 55% of patients currently use IVIG and 45% of patients currently use SCIG. Current SCIG users are younger (mean age: 43 years old) than current IVIG users (mean age: 48 years old). Patients who currently use IVIG overwhelming (83%) report IVIG as the only Ig therapy they have ever used. Conversely, a little more than a quarter of current SCIG users (27%) report only using SCIG for their Ig therapy. SCIG users were more likely to have used IVIG and SCIG (66%). Only 12% of current IVIG users used both IVIG and SCIG.

108 Take Aways No Longer Using Ig Therapy Patients that no longer use any form of Ig therapy were more likely to report their physician terminated their Ig therapy because it was no longer deemed medically necessary. This occurred more often with patients who used SCIG only versus patients that used IVIG only or both IVIG and SCIG.

109 Take Aways Other Chronic Conditions Asthma (55%), Arthritis (50%), Autoimmune Condition (37%), Digestive Disease (34%), and Malabsorption/Diarrhea (29%) were among the top five chronic conditions reported by current Ig users in the past 12 months. Chronic conditions such as Arthritis, Autoimmune Condition, Neurological Disease and Cancer all increased - by more than 2 percentage points - post diagnosis for current Ig therapy users while all other chronic conditions decreased.

110 Take Aways Infections The number of current Ig users reporting infections decreased post diagnosis. For example: Prior to Diagnosis 67% of IVIG users had Bronchitis 71% of SCIG users had Bronchitis 55% of IVIG users had Pneumonia 53% of SCIG users had Pneumonia In the Past 12 months 36% of IVIG users had Bronchitis 38% of SCIG users had Bronchitis 15% of IVIG users had Pneumonia 11% of SCIG users had Pneumonia In the past 12 months, current IVIG users reported more occurrences of Sinusitis, Ear Infections, Candia and Eye Infections than SCIG users. Current SCIG users reported more occurrences of Diarrhea and Skin Infections than IVIG users.

111 Take Aways Side Effects The top five side effects for current IVIG users were fatigue, headache, chills, weakness and nausea. Most common side effects for current SCIG users were redness at infusion site, swelling at infusion site, fatigue, headache, and blood in tubing. IVIG users were more likely to report not experiencing any side effects (13%) than SCIG users (). Ig therapy users reported serious side effects such as aseptic meningitis, blurred vision and blood clots.

112 Take Aways Perceived Effectiveness and Satisfaction 57% of current IVIG users reported their Ig therapy completely controls or well controls their PI vs. 61% of current SCIG users. 44% of current IVIG users always experience a wear off effect vs. 27% of current SCIG users 57% IVIG users report the wear effect lasts for 1 to 3 weeks vs. 90% of SCIG users who report less than 1 week. Both IVIG (77%) and SCIG (77%) are equally satisfied with the Ig product they currently use.

113 Take Aways Prophylactic Antibiotic Therapy 54% of IVIG users have taken antibiotics along with their Ig therapy to help prevent infections vs. 48% of SCIG users. When compared, IVIG users report better control of PI with Ig therapy alone (65% completely or well controlled) than IVIG and antibiotics (50%). Similar results were reported for SCIG users, 68% SCIG alone vs. 53% SCIG and antibiotics.