Improving current immunoglobulin therapy for patients with primary immunodeficiency: Quality of life and views on treatment

Patient Preference and Adherence

Volumn 8, Issue , 2014, Pages 621-629

  Espanol, Teresa ^a   Prevot, Johan ^b   Drabwell, Jose ^b   Sondhi, Seema ^c   Olding, Laurence ^d  

^a HOSPITAL UNIVERSITARI VALL D HEBRON   (Spain)

^b International Patient Organisation for Primary Immunodeficiencies   (United Kingdom)

^c Baxter Healthcare SA   (Switzerland)

^d Bryter   (United Kingdom)

Author keywords

Immunoglobulins; Patient; Patient needs; Primary immunodeficiency; Quality of life

Indexed keywords

IMMUNOGLOBULIN;

ADOLESCENT; ADULT; ARGENTINA; ARTICLE; AUSTRALIA; AUSTRIA; BELGIUM; BRAZIL; CANADA; CHILD; COLOMBIA; DRUG SELF ADMINISTRATION; EUROQOL 5 DIMENSION; FEMALE; FRANCE; GERMANY; HARDNESS AT INFUSION SITE; HEADACHE; HUMAN; HUNGARY; IMMUNE DEFICIENCY; INDIA; INJECTION SITE PAIN; INJECTION SITE PRURITUS; INJECTION SITE REACTION; INJECTION SITE SWELLING; ITALY; MAJOR CLINICAL STUDY; MALE; NEEDLESTICK INJURY; NETHERLANDS; NEW ZEALAND; PATIENT SATISFACTION; POLAND; PORTUGAL; QUALITY OF LIFE; QUESTIONNAIRE; SHORT FORM 12; SOUTH AFRICA; SPAIN; SWEDEN; SWITZERLAND; TREATMENT DURATION; TREATMENT OUTCOME; UNITED KINGDOM; UNSPECIFIED SIDE EFFECT; WELLBEING;

EID: 84899833620     PISSN: None     EISSN: 1177889X     Source Type: Journal    
DOI: 10.2147/PPA.S60771     Document Type: Article

References (31)

1. Al-Herz W, Bousfiha A, Casanova JL, et al. Primary immunodeficiency diseases: an update on the classification from the International Union of Immunological Societies Expert Committee for Primary Immunodeficiency. Front Immun. 2011;2:54.
2. McCusker C, Warrington R. Primary immunodeficiency. Allergy Asthma Clin Immunol. 2011;7 Suppl 1:S11.
3. Notarangelo LD. Primary immunodeficiencies. J Allergy Clin Immunol. 2010;125(2 Suppl 2):S182-S194.
4. Cunningham-Rundles C. Key aspects for successful immunoglobulin therapy of primary immunodeficiencies. Clin Exp Immunol. 2011;164 Suppl 2:16-19.
5. Misbah S, Sturzenegger MH, Borte M, et al. Subcutaneous immunoglobulin: opportunities and outlook. Clin Exp Immunol. 2009;158 Suppl 1:51-59.
6. Berger M. Subcutaneous immunoglobulin replacement in primary immunodeficiencies. Clin Immunol. 2004;112:1-7.
7. Gardulf A. Immunoglobulin treatment for primary antibody deficiencies: advantages of the subcutaneous route. Bio Drugs. 2007;21:105-116.
8. Skoda-Smith S, Torgerson TR, Ochs HD. Subcutaneous immunoglobulin replacement therapy in the treatment of patients with primary immunodeficiency disease. Ther Clin Risk Manag. 2010;6:1-10.
9. Wood P. Human normal immunoglobulin in the treatment of primary immunodeficiency diseases. Ther Clin Risk Manag. 2012;8:157-167.
10. Mohamed AF, Kilambi V, Luo MP, Iyer RG, Li-McLeod JM. Patient and parent preferences for immunoglobulin treatments: a conjoint analysis. J Med Econ. 2012;15:1-9.
11. QualityMetric. SF-12v2 health survey. Available from: http://www.qualitymetric.com/WhatWeDo/SFHealthSurveys/SF12v2HealthSurvey/tabid/186/Default.aspx. Accessed May 7, 2013.
12. QualityMetric. SF-10 Health Survey for Children. Available from: http://www.qualitymetric.com/WhatWeDo/PediatricHealthSurveys/SF10HealthSurveyforChildren/tabid/195/Default.aspx. Accessed February 28, 2014.
13. EuroQol Group. About EQ-5D. Available from: http://www.euroqol.org/about-eq-5d.html. Accessed December 23, 2013.
14. McFadden D, Train K. Mixed MNL models of discrete response. J Appl Econ. 2000;15:447-470.
15. Hauber AB, Mohamed AF, Johnson FR, Meddis D, Wagner S, O'Dowd L. Quantifying asthma patient preferences for onset of effect of combination inhaled corticosteroids and long-acting beta2-agonist maintenance medications. Allergy Asthma Proc. 2009;30:139-147.
16. Hauber AB, Mohamed AF, Watson ME, Johnson FR, Hernandez JE. Benefits, risks and uncertainty: references of antiretroviral-naive African Americans for HIV treatment. AIDS Patient Care STDS. 2009;23:29-34.
17. Mohamed AF, Hauber AB, Neary MP. Patient benefit-risk preferences for targeted agents in the treatment of renal cell carcinoma. Pharmacoeconomics. 2011;29:977-988.
18. Ware JE, Kosinski M, Turner-Bowker DM, Gandek B. How to Score Version 2 of the SF-12 Health Survey. Lincoln, RI, USA: QualityMetric Inc; 2002.
19. Gardulf A, Nicolay U, Math D, et al. Children and adults with primary antibody deficiencies gain quality of life by subcutaneous IgG self-infusions at home. J Allergy Clin Immunol. 2004;114:936-942.
20. International Patient Organisation for Primary Immunodeficiencies. Position statement: access to immunoglobulin therapies for patients living with a primary immunodeficiency; 2012. Available from: http://www.ipopi.org/index.php?mact=News, cntnt01, detail,0&cntnt01articleid=218&cntnt01origid=38&cntnt01detailtemplate=detalj&cntnt01returnid=63. Accessed May 7, 2013.
21. Abolhassani H, Sadaghiani MS, Aghamohammadi A, Ochs HD, Rezaei N. Home-based subcutaneous immunoglobulin versus hospital-based intravenous immunoglobulin in treatment of primary antibody deficiencies: systematic review and meta analysis. J Clin Immunol. 2012;32:1180-1192.
22. Gardulf A, Andersen V, Björkander J, et al. Subcutaneous immunoglobulin replacement in patients with primary antibody deficiencies: safety and costs. Lancet. 1995;345:365-369.
23. Chapel HM, Spickett GP, Ericson D, Engl W, Eibl MM, Bjorkander J. The comparison of the efficacy and safety of intravenous versus subcutaneous immunoglobulin replacement therapy. J Clin Immunol. 2000;20:94-100.
24. García JM, Español T, Gurbindo MD, Casas CC. Update on the treatment of primary immunodeficiencies. Allergol Immunopathol (Madr). 2007;35:184-192.
25. Bonilla FA. Intravenous immunoglobulin: adverse reactions and management. J Allergy Clin Immunol. 2008;122:1238-1239.
26. Immune Deficiency Foundation. Primary immunodeficiency diseases in America: 2007. The third national survey of patients; 2009. Available from: http://primaryimmune.org/about-primary-immunodeficiency-diseases/idf-publications?aid-1264&pid=275&sa=1. Accessed May 7, 2013.
27. Bonilla FA. IgG replacement therapy, no size fits all. J Clin Immunol. 2011;139:107-109.
28. Orange JS. Clinical update in immunoglobulin therapy for primary immunodeficiency diseases. Clinical Focus on Primary Immunodeficiencies. 2011;14:1-9. Available from: http://primaryimmune.org/wp-content/uploads/2011/04/Clinical-Update-in-Immunoglobulin-Therapy-for-Primary-Immunodeficiency-Diseases.pdf. Accessed December 23, 2013.
29. Crawford B, Dalal AA, Stanford R, Bayliss MS, Lim J, Philpot E. Validation of the Experience with Allergic Rhinitis Nasal Spray Questionnaire (EARNS-Q): a patient reported outcomes (PRO) questionnaire to measure experience and preference with nasal sprays. J Allergy Clin Immunol. 2008;121(2 Suppl):S106.
30. Fasth A, Nyström J. Quality of life and health-care resource utilization among children with primary immunodeficiency receiving home treatment with subcutaneous human immunoglobulin. J Clin Immunol. 2008;28:370-378.
31. Navarro RP, Ballow M, Fenrick B, Pezalla EJ. Considerations for the optimal use of immunoglobulin. Am J Manag Care. 2012;18(4 Suppl):S67-S78.