Review question: How widely is the DLQI used in clinical guidelines and registries throughout the world?
Operational definitions for this study: Patient registries have been defined as “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s) [Gliklich R, Dreyer N. Registries for Evaluating Patient Outcomes: A User’s Guide. Rockville, MD: Agency for Healthcare Research and Quality; 2010. AHRQ Publication No. 10-EHC049]. A patient registry is a collection—for one or more purposes—of standardized information about a group of patients who share a condition or experience.
Terms such as clinical registries, clinical data registries, disease registries, and outcomes registries are also used to describe the same data collection method.
Clinical practice guidelines (or simply “clinical guidelines”) are recommendations on how to diagnose and treat a medical condition. They are meant to help ensure that patients receive appropriate treatment and care. Guidelines summarize the current medical knowledge, weigh the benefits and harms of diagnostic procedures and treatments, and give specific recommendations based on this information. [https://www.ncbi.nlm.nih.gov/books/NBK390308/]. Clinical guidelines may also assess whether treatments and ways of managing a condition are good value for money for the healthcare provider, providing advice for policy and reimbursement decisions.
Rationale: Since its publication in 1994, the DLQI has become the most widely used patient measurement tool in dermatology. It is used to measure the impact of skin conditions on a patient's quality of life in routine practice to inform clinical decision taking and as a patient reported outcome measure in clinical trials. A study in 2020 (reference. Singh Finlay) identified that it was embedded in national guidelines and disease registries in >45 countries. That survey was likely incomplete and
was not a systematic review. There is accumulating evidence of the DLQI’s application in additional national guidelines, registries and reimbursement guidelines.
Reference: Singh RK, Finlay AY. DLQI use in skin disease guidelines and registries worldwide. JEADV 2020 Dec; 34(12): e822-e824.
Working Objectives. This study will systematically review the use of the DLQI in guidelines and registries. Firstly, it will extract data from academic publications describing registries collecting DLQI data from routine clinical practice, and describing national or regional guidelines that encourage
or require the use of the DLQI in routine treatment and clinical decision making. Secondly it will survey country and regional dermatology organisations to determine the DLQI’s use in guidelines and registries.