Challenges of C1-Inhibitor Concentrate Self-Administration

被引:20
作者
Boysen, H. B. [1 ]
Bouillet, L. [2 ]
Aygoeren-Puersuen, E. [3 ]
机构
[1] HAEi, Aarhus, Denmark
[2] Grenoble Univ Hosp, Natl Reference Ctr Angioedema, Grenoble, France
[3] Johann Wolfgang Goethe Univ Hosp, Frankfurt, Germany
关键词
Hereditary angioedema; Self-administration; Barriers; Challenges; Quality of life; QUALITY-OF-LIFE; HEREDITARY ANGIOEDEMA; QUESTIONNAIRE;
D O I
10.1159/000351238
中图分类号
R392 [医学免疫学];
学科分类号
100102 ;
摘要
Self-administration of therapy can help hereditary angioedema (HAE) patients regain control of their disease or reduce its impact and improve the quality of their lives. However, data from a self-administration survey, and subsequent discussion at an international HAE expert meeting, identified several barriers to self-administration therapy. These barriers include difficulty in administration technique, availability of nursing resources and the mental capacity of the patient. Encouragingly, international HAE experts identified that once a patient has acquired self-administration skills, they generally retain them in the long-term. As patient uptake increases, it was recommended that follow-up management plans should be established to address any issues from the patient's perspective. Copyright (C) 2013 S. Karger AG, Basel
引用
收藏
页码:21 / 25
页数:5
相关论文
共 10 条
[1]   Asphyxiation by laryngeal edema in patients with hereditary angioedema [J].
Bork, K ;
Siedlecki, K ;
Bosch, S ;
Schopf, RE ;
Kreuz, W .
MAYO CLINIC PROCEEDINGS, 2000, 75 (04) :349-354
[2]   The hereditary angioedema burden of illness study in Europe (HAE-BOIS-Europe): background and methodology [J].
Bygum, Anette ;
Aygoren-Pursun, Emel ;
Caballero, Teresa ;
Beusterien, Kathleen ;
Gholizadeh, Shadi ;
Musingarimi, Patience ;
Wait, Suzanne ;
Boysen, Henrik .
BMC DERMATOLOGY, 2012, 12
[3]   Self-administration of intravenous C1-inhibitor therapy for hereditary angioedema and associated quality of life benefits [J].
Bygum, Anette ;
Andersen, Klaus Ejner ;
Mikkelsen, Carsten Sauer .
EUROPEAN JOURNAL OF DERMATOLOGY, 2009, 19 (02) :147-151
[4]   Current Status of Implementation of Self-Administration Training in Various Regions of Europe, Canada and the USA in the Management of Hereditary Angioedema [J].
Caballero, T. ;
Sala-Cunill, A. ;
Cancian, M. ;
Craig, T. J. ;
Neri, S. ;
Keith, P. K. ;
Boccon-Gibod, I. ;
Bethune, C. ;
Bork, K. .
INTERNATIONAL ARCHIVES OF ALLERGY AND IMMUNOLOGY, 2013, 161 :10-16
[5]   HAE international home therapy consensus document [J].
Hilary J Longhurst ;
Henriette Farkas ;
Timothy Craig ;
Emel Aygören-Pürsün ;
Claire Bethune ;
Janne Bjorkander ;
Konrad Bork ;
Laurence Bouillet ;
Henrik Boysen ;
Anette Bygum ;
Teresa Caballero ;
Marco Cicardi ;
John Dempster ;
Mark Gompels ;
Jimmy Gooi ;
Sofia Grigoriadou ;
Ursula Huffer ;
Wolfhart Kreuz ;
Marcel M Levi ;
Janet Long ;
Inmaculada Martinez-Saguer ;
Michel Raguet ;
Avner Reshef ;
Tom Bowen ;
Bruce Zuraw .
Allergy, Asthma & Clinical Immunology, 6 (1)
[6]   The humanistic burden of hereditary angioedema: Impact on health-related quality of life, productivity, and depression [J].
Lumry, William R. ;
Castaldo, Anthony J. ;
Vernon, Margaret K. ;
Blaustein, Marc B. ;
Wilson, David A. ;
Horn, Patrick T. .
ALLERGY AND ASTHMA PROCEEDINGS, 2010, 31 (05) :407-414
[7]   Is there a need for clinical guidelines in the United States for the diagnosis of hereditary angioedema and the screening of family members of affected patients? [J].
Lunn, Michael L. ;
Santos, Carah B. ;
Craig, Timothy J. .
ANNALS OF ALLERGY ASTHMA & IMMUNOLOGY, 2010, 104 (03) :211-214
[8]   Development of a disease-specific quality of life questionnaire for adult patients with hereditary angioedema due to C1 inhibitor deficiency (HAE-QoL): Spanish multi-centre research project [J].
Prior, Nieves ;
Remor, Eduardo ;
Gomez-Traseira, Carmen ;
Lopez-Serrano, Concepcion ;
Cabanas, Rosario ;
Contreras, Javier ;
Campos, Angel ;
Cardona, Victoria ;
Cimbollek, Stefan ;
Gonzalez-Quevedo, Teresa ;
Guilarte, Mar ;
Fernandez de Rojas, Dolores Hernandez ;
Marcos, Carmen ;
Rubio, Maria ;
Angel Tejedor-Alonso, Miguel ;
Caballero, Teresa .
HEALTH AND QUALITY OF LIFE OUTCOMES, 2012, 10
[9]   Practical Approach to Self-Administration of Intravenous C1-INH Concentrate: A Nursing Perspective [J].
Symons, C. ;
Rossi, O. ;
Magerl, M. ;
Andritschke, K. .
INTERNATIONAL ARCHIVES OF ALLERGY AND IMMUNOLOGY, 2013, 161 :17-20
[10]   Development and construct validation of the angioedema quality of life questionnaire [J].
Weller, K. ;
Groffik, A. ;
Magerl, M. ;
Tohme, N. ;
Martus, P. ;
Krause, K. ;
Metz, M. ;
Staubach, P. ;
Maurer, M. .
ALLERGY, 2012, 67 (10) :1289-1298