title: Patient participation in a Clinical Guideline Development for Systemic Lupus Erythematosus.
abstract: OBJECTIVE
  To incorporate patients' perspective in the design of a clinical practice guideline (CPG) for Systemic Lupus Erythematosus in Spain.
  
  
  METHODS
  A systematic review (SR) of literature and a Delphi-based consultation to patients were carried out.
  
  
  RESULTS
  From the SR, most relevant health problems are classified as physical, psychological, familial, and socio-economic. Dissatisfaction is mainly due to unmet information needs and limited access to care. In the consultation (n=102), most frequently reported health problems were pain, fatigue, photosensitivity, mood disorders, renal damage, poor concentration, and memory loss. Dissatisfaction with poor coordination between primary and specialized care was reported. Information to improve self-management and on alternative therapies was requested. Relevant topics from both sources were merged and discussed by the guideline development group (including a patient representative) to set the key questions underpinning the CPG.
  
  
  CONCLUSIONS
  Patient involvement in CPG development by a combination of methods can enhance patient-centered care by achieving clinical practice responsive to their needs.
  
  
  CONCLUSIONS
  Involving patients in CPG development is feasible and useful to improve the advance of Health Services toward patient-centered care. A multicomponent strategy for involvement is suggested to address the gap between the available evidence and contextual current patient needs and preferences.
authors.affiliation: Evaluation Service of the Canary Islands Health Service (SESCS), Santa Cruz de Tenerife, Spain; Spanish Network of Health Services Research for Chronic Diseases (REDISSEC), Madrid, Spain. Electronic address: pseragu@gobiernodecanarias.org.
authors.forename: Pedro
authors.initials: P
authors.lastname: Serrano-Aguilar
authors.affiliation: Spanish Network of Health Services Research for Chronic Diseases (REDISSEC), Madrid, Spain; Canary Foundation for Health Care Research (FUNCANIS), Canary Islands, Spain.
authors.forename: Maria del Mar
authors.initials: Mdel M
authors.lastname: Trujillo-Martin
authors.affiliation: Canary Foundation for Health Care Research (FUNCANIS), Canary Islands, Spain.
authors.forename: Abraham
authors.initials: A
authors.lastname: Pérez de la Rosa
authors.affiliation: Canary Foundation for Health Care Research (FUNCANIS), Canary Islands, Spain.
authors.forename: Leticia
authors.initials: L
authors.lastname: Cuellar-Pompa
authors.affiliation: Canary Foundation for Health Care Research (FUNCANIS), Canary Islands, Spain.
authors.forename: Hugo
authors.initials: H
authors.lastname: Saavedra-Medina
authors.affiliation: Spanish Network of Health Services Research for Chronic Diseases (REDISSEC), Madrid, Spain; Canary Foundation for Health Care Research (FUNCANIS), Canary Islands, Spain.
authors.forename: Renata
authors.initials: R
authors.lastname: Linertova
authors.affiliation: Evaluation Service of the Canary Islands Health Service (SESCS), Santa Cruz de Tenerife, Spain; Spanish Network of Health Services Research for Chronic Diseases (REDISSEC), Madrid, Spain.
authors.forename: Lilisbeth
authors.initials: L
authors.lastname: Perestelo-Perez
authors.affiliation: Canary Foundation for Health Care Research (FUNCANIS), Canary Islands, Spain.
authors.forename: Jeanette
authors.initials: J
authors.lastname: Perez-Ramos
authors.affiliation: Spanish Network of Health Services Research for Chronic Diseases (REDISSEC), Madrid, Spain; Canary Foundation for Health Care Research (FUNCANIS), Canary Islands, Spain.
authors.forename: Amado
authors.initials: A
authors.lastname: Rivero-Santana
mesh_terms: D000328:Adult; D005260:Female; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000145:classification / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D017060:Patient Satisfaction; D018802:Patient-Centered Care; D017410:Practice Guidelines as Topic; D012017:Referral and Consultation; D012648:Self Care; D013030:Spain
keywords: Clinical Practice Guideline; Delphi method; Patient centered outcomes research; Patient involvement; Spain; Systematic review; Systemic Lupus Erythematosus; Unmet needs