title: Significance and rationale of studies of health-related quality of life in anaphylactic disorders.
abstract: OBJECTIVE
  Until recently, quality-of-life measures were only used in allergic diseases with ongoing symptoms, such as asthma and rhinoconjunctivitis. Anaphylaxis is a chronic disease without ongoing physical symptoms, but the problems concerning quality of life are related to the continuous vigilance required to prevent accidental exposure. This raises specific issues concerning the validation of quality-of-life instruments.
  
  
  RESULTS
  The preferred independent measure for validation generally is an objective measurement of the severity of disease (e.g. spirometry in asthma). In patients suffering from anaphylaxis, the perceived expectation of what will happen following exposure can be used as the key independent measure. Recently, a specific instrument measuring this expectation (the 'Expectation of outcome' questionnaire) has been developed, and successfully used in insect-venom anaphylaxis.
  
  
  CONCLUSIONS
  Also, in diseases without ongoing symptoms like anaphylaxis, quality of life can be measured and the disease-specific instrument validated. It is to be expected that many new instruments will be developed in the coming years to address important issues in anaphylaxis. They may provide a better understanding of the major problems of certain patient subgroups and may give direction to the kind of information that should be addressed and what kind of interventions could be important and whether they are useful or not.
authors.affiliation: Department of Allergology, University Medical Center of Groningen, University of Groningen, The Netherlands. j.n.g.oudee.elberrink@int.umcg.nl
authors.forename: Joanne N G
authors.initials: JN
authors.lastname: Oude Elberink
mesh_terms: D000707:Anaphylaxis / Q000276:immunology / Q000517:prevention & control / Q000523:psychology*; D006801:Humans; D011788:Quality of Life; D012107:Research Design