Measurement of health‐related quality of life in dermatological research and practice: outcome of theEADVTaskforce on Quality of Life

Abstract

In the last decade, the importance of the measurement of health‐related quality of life (HRQoL) has grown significantly. Today, HRQoL measurement is generally considered to be important in clinical trials, in the assessment of disease severity, in patient management and in the field of health economics. Therefore, a good understanding of the concept of HRQoL and its measurement instruments is a prerequisite for both researchers and clinicians. The European Academy for Dermatology and Venereology (EADV) Taskforce on Quality of Life encourages the application of HRQoL instruments in research and clinical practice, and with this manuscript, the Taskforce aims to contribute to the quality of this application. In dermatology, a large number of HRQoL instruments exist and herewith, we summarize the most commonly used generic and dermatology‐specific HRQoL instruments. Information is given on the most important psychometric characteristics of these instruments, including: scale structure, reliability, validity and responsiveness. Furthermore, a flow chart is provided to support researchers and clinicians in selecting an existing instrument or, in case an appropriate instrument does not exist, in finding alternative solutions. The present manuscript is the first of a series of manuscripts to be written on behalf of the EADV Taskforce on Quality of Life, aiming to contribute to the scientific knowledge and measurement of patient reported outcomes in dermatological research and practice.

The Evolution of Quality of Life Assessment and Use in Dermatology

“…Validation characteristics of the QoL instruments is another important parameter. Both “basic” and “advanced” validation methods are in use at the moment [8]. Well-validated ­instruments have a better chance of being widely used.…”

“…While some measures have been developed using rigorous methodology, other instruments have been created and used in a single study without appropriate validation. QoL in dermatology has most commonly been assessed by means of generic instruments and/or dermatology-specific and disease-specific instruments [8]. Researchers and clinicians therefore have a wide choice of instruments.…”

Interpretation of the Skin Cancer Quality of Life Score: A Validated Quality of Life Questionnaire for Non-Melanoma Skin Cancer

“…No agreement has been made in the literature for a preferred statistical measure [29]. The most used is the standardized response mean (SRM) and the effect size (ES) [3]. Accordingly, to measure the responsiveness 2 different approaches were followed: (1) an anchor-based method using a global rating of change (GRC) scale; (2) a comparison between presurgery and postsurgery SCQoL scores expecting that the scores should have significantly changed over time and measuring SRM and ES.…”

“…Responsiveness has been defined as the extent to which the score of an instrument reflects changes in the patient's condition over time [3,27,28]. No agreement has been made in the literature for a preferred statistical measure [29].…”

“…This trend is also evident in dermatology [2], and the quantification of changes in health-related quality of life (HRQoL) is often required by the regulatory authorities as a secondary outcome measure when assessing the effect of new treatments [3]. In order to provide reliable data, patient-reported outcomes must be validated in a series of defined steps, and a guide for their interpretation provided.…”