title: A qualitative study of the impact of severe asthma and its treatment showing that treatment burden is neglected in existing asthma assessment scales.
abstract: BACKGROUND
  People with severe asthma experience significant respiratory symptoms and suffer adverse effects of oral corticosteroids (OCS), including disturbed mood and physical symptoms. OCS impacts on health-related quality of life (HRQoL) have not been quantified. Asthma HRQoL scales are valid as outcome measures for patients requiring OCS only if they assess the deficits imposed by OCS.
  
  
  OBJECTIVE
  The aim of this study was to compare the burden of disease and treatment in patients with severe asthma with items in eight asthma-specific HRQoL scales.
  
  
  METHODS
  Twenty-three patients with severe asthma recruited from a severe asthma clinic were interviewed about the impact of their respiratory symptoms and the burden of their treatment. The domains from a thematic analysis of these interviews were compared with the items of eight asthma-specific HRQoL scales.
  
  
  RESULTS
  In addition to the burden caused by symptoms, ten domains of OCS impact on HRQoL were identified: depression, irritability, sleep, hunger, weight, skin, gastric, pain, disease anxiety, and medication anxiety. Some patients experienced substantial HRQoL deficits attributed to OCS. Although all HRQoL scales include some OCS-relevant items, all eight scales fail to adequately assess the several types of burden experienced by some patients while on OCS.
  
  
  CONCLUSIONS
  The burden of OCS in severe asthma is neglected in policy and practice because it is not assessed in outcome studies. Existing asthma HRQoL scales provide an overly positive estimation of HRQoL in patients with frequent exposure to OCS and underestimate the benefit of interventions that reduce OCS exposure. Changes to existing measurement procedures are needed.
authors.affiliation: School of Psychology, Plymouth University, Plymouth, PL4 8AA, UK, m.hyland@plymouth.ac.uk.
authors.forename: Michael E
authors.initials: ME
authors.lastname: Hyland
authors.forename: Ben
authors.initials: B
authors.lastname: Whalley
authors.forename: Rupert C
authors.initials: RC
authors.lastname: Jones
authors.forename: Matthew
authors.initials: M
authors.lastname: Masoli
mesh_terms: D000305:Adrenal Cortex Hormones / Q000009:adverse effects* / Q000627:therapeutic use*; D000328:Adult; D000368:Aged; D001007:Anxiety / Q000139:chemically induced; D001249:Asthma / Q000188:drug therapy*; D017281:Cost of Illness; D003863:Depression / Q000139:chemically induced; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010024:Osteoporosis / Q000139:chemically induced; D010146:Pain; D036301:Qualitative Research; D011788:Quality of Life; D012044:Regression Analysis; D012893:Sleep Wake Disorders / Q000139:chemically induced; D011795:Surveys and Questionnaires
chemical_list: D000305:Adrenal Cortex Hormones