Quality of Life Measurement in Autoimmune Blistering Diseases: Mutual Position Statement of the European Academy of Dermatology and Venereology Task Forces on Quality of Life and Patient Oriented Outcomes and Autoimmune Blistering Diseases

The European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on Quality of Life (QoL) and Patient Oriented Outcomes and on Autoimmune Bullous Diseases (AIBD) collaborated on a position statement regarding the QoL instruments that could better evaluate the health-related (HR)QoL in different phases of the course of these chronic diseases. Position statements were formed and accepted by voting of all authors. The ability to use a measure that has a validated system to interpret scores and has a known minimal clinical important difference (MCID), such as the Dermatology Life Quality Index (DLQI), is an important aspect when choosing which HRQoL instrument to use. The EADV TFs encourage the use of the DLQI as a dermatology-specific instrument and Autoimmune Bullous Disease Quality of Life (ABQOL) and Treatment of Autoimmune Bullous Disease Quality of Life (TABQOL) as AIBD-specific instruments for HRQoL assessment in AIBDs. The EADV TFs encourage the use of the oral health-specific instruments Oral Health Impact Profile-14 (OHIP-14) or Chronic Oral Mucosal Disease Questionnaire (COMDQ) in AIBD patients with severe oral involvement. OHIP-14 has fewer items and that may influence the choice for practical use. The EADV TFs encourage the study, where appropriate, of family QoL of AIBD patients by using dermatology-specific family QoL instruments, such as the Family Dermatology Life Quality Index (FDLQI) or general measures such as the Family Reported Outcome Measure (FROM-16). The EADV TFs recommend that HRQoL instruments be used in randomized controlled studies of new therapeutic approaches. The EADV TFs encourage researchers and clinicians to validate and use HRQoL instruments in patients with AIBDs.