The hereditary angioedema burden of illness study in Europe (HAE-BOIS-Europe): Background and methodology

BMC Dermatology

Volumn 12, Issue , 2012, Pages

  Bygum, Anette ^a   Aygören Pürsün, Emel ^b   Caballero, Teresa ^c   Beusterien, Kathleen ^d   Gholizadeh, Shadi ^d   Musingarimi, Patience ^e   Wait, Suzanne ^f   Boysen, Henrik ^g  

^a ODENSE UNIVERSITY HOSPITAL   (Denmark)

^b GOETHE UNIVERSITY   (Germany)

^c CENTRO DE INVESTIGACIÓN BIOMÉDICA EN RED DE ENFERMEDADES RARAS CIBERER   (Spain)

^d ICON PLC   (United Kingdom)

^e ViroPharma Chatsworth House   (United Kingdom)

^f SHW Health Ltd   (United Kingdom)

^g HAEi International Patient Organization for C1 Inhibitor Deficiencies   (Denmark)

Author keywords

[No Author keywords available]

Indexed keywords

ANGIONEUROTIC EDEMA; ARTICLE; BURDEN OF ILLNESS; CHILD; DISEASE COURSE; EDUCATION; EMOTION; EUROPE; HEALTH CARE COST; HEALTH CARE UTILIZATION; HOSPITAL ANXIETY AND DEPRESSION SCALE; HUMAN; INFORMATION PROCESSING; MEDICAL RECORD REVIEW; METHODOLOGY; PATIENT SATISFACTION; RETROSPECTIVE STUDY; SCHOOL CHILD; WORK DISABILITY;

ADOLESCENT; ADULT; ANGIOEDEMAS, HEREDITARY; CHILD; COST OF ILLNESS; CROSS-SECTIONAL STUDIES; DENMARK; FEMALE; GERMANY; HEALTH CARE COSTS; HUMANS; MALE; MIDDLE AGED; PATIENT SATISFACTION; PSYCHIATRIC STATUS RATING SCALES; QUALITY OF LIFE; QUESTIONNAIRES; RETROSPECTIVE STUDIES; SPAIN; YOUNG ADULT;

EID: 84862220879     PISSN: None     EISSN: 14715945     Source Type: Journal    
DOI: 10.1186/1471-5945-12-4     Document Type: Article

References (28)

1. Frank MM, Gelfand JA, Atkinson JP. Hereditary angioedema: The clinical syndrome and its management. Ann Intern Med 1976, 84:580-593.
2. Cicardi M, Bergamaschini L, Cugno M, Beretta A, Zingale LC, Colombo M, Agostoni A. Pathogenetic and clinical aspects of C1 inhibitor deficiency. Immunobiol 1998, 199:366-376.
3. Bork K, Ressel N. Sudden upper airway obstruction in patients with hereditary angioedema. Transfus Apher Sci 2003, 29:235-238. 10.1016/j.transci.2003.08.007, 14572815.
4. Bork K, Meg G, Staubach P, Hardt J. Hereditary angioedema: New findings concerning symptoms, affected organs, and course. Am J Med 2006, 119:267-274. 10.1016/j.amjmed.2005.09.064, 16490473.
5. Zuraw BL. Hereditary angioedema. N Engl J Med 2008, 359:1027-1036. 10.1056/NEJMcp0803977, 18768946.
6. Nzeako UC, Frigas E, Tremaine WJ. Hereditary angioedema: A broad review for clinicians. Arch Intern Med 2001, 161:2417-2429. 10.1001/archinte.161.20.2417, 11700154.
7. Bygum A. Hereditary angio-oedema in Denmark: a nationwide survey. Br J Dermatol 2009, 161:1153-1158. 10.1111/j.1365-2133.2009.09366.x, 19709101.
8. Agostoni A, Aygören-Pürsün E, Binkley KE, Blanch A, Bork K, Bouillet L, Bucher C, Castaldo AJ, Cicardi M, Davis AE, De Carolis C, Drouet C, Duponchel C, Farkas H, Fáy K, Fekete B, Fischer B, Fontana L, Füst G, Giacomelli R, Gröner A, Hack CE, Harmat G, Jakenfelds J, Juers M, Kalmár L, Kaposi PN, Karádi I, Kitzinger A, Kollár T, Kreuz W, Lakatos P, Longhurst HJ, Lopez-Trascasa M, Martinez-Saguer I, Monnier N, Nagy I, Németh E, Nielsen EW, Nuijens JH, O'grady C, Pappalardo E, Penna V, Perricone C, Perricone R, Rauch U, Roche O, Rusicke E, Späth PJ, Szendei G, Takács E, Tordai A, Truedsson L, Varga L, Visy B, Williams K, Zanichelli A, Zingale L. Hereditary and acquired angioedema: problems and progress: proceedings of the third C1 esterase inhibitor deficiency workshop and beyond. J Allergy Clin Immunol 2004, 114(3 Suppl):S51-S131.
9. Roche O, Blanch A, Caballero T, Sastre N, Callejo D, López-Trascasa M. Hereditary angioedema due to C1 inhibitor deficiency: patient registry and approach to the prevalence in Spain. Ann Allergy Asthma Immunol 2005, 94(4):498-503. 10.1016/S1081-1206(10)61121-0, 15875532.
10. Bowen T, Cicardi M, Farkas H, Bork K, Longhurst HJ, Zuraw B, Aygoeren-Pürsün E, Craig T, Binkley K, Hebert J, Ritchie B, Bouillet L, Betschel S, Cogar D, Dean J, Devaraj R, Hamed A, Kamra P, Keith PK, Lacuesta G, Leith E, Lyons H, Mace S, Mako B, Neurath D, Poon MC, Rivard GE, Schellenberg R, Rowan D, Rowe A, Stark D, Sur S, Tsai E, Warrington R, Waserman S, Ameratunga R, Bernstein J, Björkander J, Brosz K, Brosz J, Bygum A, Caballero T, Frank M, Füst G, Harmat G, Kanani A, Kreuz W, Levi M, Li H, Martinez-Saguer I, Moldovan D, Nagy I, Nielsen EW, Nordenfelt P, Rashef A, Rusicke E, Smith-Foltz S, Späth P, Varga L, Xiang ZY. 2010 International consensus algorithm for the diagnosis, therapy and management of hereditary angioedema. Allergy Asthma Clin Immunol 2010, 6:24. 10.1186/1710-1492-6-24, 2921362, 20667127.
11. Gower RG, Busse PJ, Aygoren-Pursun E, Barakat A, Caballero T, Davis-Lorton M, Farkas H, Hurewitz D, Jacobs J, Johnston D, Lumry W, Maurer M. Hereditary angioedema caused by C1-esterase inhibitor deficiency: A literature-based analysis and clinical commentary on prophylaxis treatment strategies. WAO Journal 2011, 4:S9-S21.
12. Lumry WR, Castaldo AJ, Vernon MK, Blaustein MB, Wilson DA, Horn PT. The humanistic burden of hereditary angioedema: Impact on health-related quality of life, productivity, and depression. Allergy Asthma Proc 2010, 31(5):407-414. 10.2500/aap.2010.31.3394, 20929608.
13. Caballero T, Caminoa M, Prior N, Gomez-Traseira C, Perez E, Forjaz MJ. Health-related quality of life in adult patients with hereditary angioedema due to C1 inhibitor deficiency (HAE-C1-INH) as measured by SF-36v2: preliminary results of an international study. Allergy 2011, 66(Suppl. 94):685. (Abstr.
14. Bewtra A, Levy R, Wasserman R, Jacobson K, Craig T. Patients receiving Cl-INH treatment for hereditary angioedema report few health-related limitations on quality of life survey. Ann Allergy Asthma Immunol 2009, 103(5 Suppl. 3):A115. Abstr.
15. Kreuz W, Martinez-Saguer I, Rusicke E, Aygören-Pürsün E, Klingebiel T. Impact of the Frankfurt HAE therapy protocol on Health-Related Quality of Life (HRQoL) in 50 patients with Hereditary Angioedema (HAE). J Allergy Clin Immunol 2009, 123:S116. Abstr.
16. Bygum A, Andersen KE, Mikkelsen CS. Self-administration of intravenous C1-inhibitor therapy for hereditary angioedema and associated quality of life benefits. Eur J Dermatol 2009, 19(2):147-151.
17. Prior N, Remor E, Gomez Traseira C, Pedrosa M, Lopez Serrano C, Caballero T. Development of a specific questionnaire for the assessment of health-related quality of life in adult patients with hereditary Angioedema due to C1 inhibitor deficiency (HAE) and cross-cultural validation proposal. J Allergy Clin Immunol 2008, 121:S106. Abstr.
18. Prior N, Caballero T, Gomez-Traseira C, Pérez E, Caminoa M, Remor E, . DV-IHAE QoL Group Development of an international specific questionnaire for the assessment of health-related quality of life in adult patients with hereditary angioedema due to C1 inhibitor deficiency (IHAE-QoL): pilot study preliminary results. Allergy 2011, 66(Suppl. 94):685. Abstr, DV-IHAE QoL Group.
19. Mallbris L, Nordenfelt P, Björkander J, Lindfors A, Werner S, Wahlgren CF. The establishment and utility of Sweha-Reg: a Swedish population-based registry to understand hereditary angioedema. BMC Dermatol 2007, 7:6. 10.1186/1471-5945-7-6, 2151953, 18053127.
20. Zingale LC, Bork K, Farkas H, Bygum A, Bouillet L, Caballero T, Longhurst H, Waage Nielsen E, Bilo B, Bucher C, Perricone R, Cicardi M. The European register of hereditary angioedema: experience and preliminary results. JACI 2007, 119(1):S276.
21. Weigl JA, Puppe W, Rockahr S, Schmitt HJ. Burden of disease in hospitalized RSV-positive children in Germany. Klin Padiatr 2002, 214(6):334-342. 10.1055/s-2002-35365, 12424681.
22. Tabolli S, Sampogna F, Di Petro C, Paradisi A, Uras C, Zotti P, Castiglia D, Zambruno G, Abeni D. Quality of life in patients with epidermylosis bullosa. Br J Dermatol 2009, 161(4):869-877. Epub 2009 May 11, 10.1111/j.1365-2133.2009.09306.x, 19624546.
23. Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006, 18(1):59-82.
24. McDowell I. Measuring health: A guide to rating scales and questionnaires 2006, Oxford University Press, Oxford, Third Edition.
25. National Institute for Clinical Excellence Guide to the Methods of Technology Appraisal (N0515) 2004, London, Briefing paper for methods review workshop on key issues in utility measurement; www.nice.org.uk/TAMethodsReview 2004, National Institute for Clinical Excellence.
26. Earp JA, Ennet ST. Conceptual models in health education research and practice. Health Ed Res 1991, 6:163-171.
27. Wilson I, Cleary P. Linking clinical variables with health-related quality of life A conceptual model of patient outcomes. J Am Med Assoc 1995, 273(1):59-65.
28. Wilson DA, Bork K, Shea EP, Rentz AM, Blaustein MB, Pullman WE. Economic costs associated with acute attacks and long-term management of hereditary angioedema. Ann Allergy Asthma Immunol 2010, 104(4):314-320. 10.1016/j.anai.2010.01.024, 20408341.