Antonio Antela1, José Ignacio Bernardino2, Juan Carlos López-Bernaldo de Quirós3, Pablo Bachiller4, María José Fuster-RuizdeApodaca5,6, Jordi Puig7, Silvia Rodríguez8, Isabel Castrejón9,10, Beatriz Álvarez11, Marta Hermenegildo12. 1. Infectious Diseases Unit, Complejo Hospitalario Universitario de Santiago (CHUS), Santiago de Compostela, Spain. antonio.antela.lopez@sergas.es. 2. HIV Unit, Internal Medicine Department, Hospital Universitario La Paz, Madrid, Spain. 3. HIV and Infectious Diseases Unit, Hospital General Universitario Gregorio Marañón, Madrid, Spain. 4. Internal Medicine Department, Complejo Asistencial de Segovia, Segovia, Spain. 5. Faculty of Psychology, UNED, Madrid, Spain. 6. Spanish AIDS Interdisciplinary Society (SEISIDA), Madrid, Spain. 7. Hospital Universitario Germans Trias I Pujol, Fundació Lluita Contra La Sida I Les Malalties Infeccioses, Badalona, Spain. 8. Gilead Sciences, Madrid, Spain. 9. Rheumatology Department, Hospital Universitario Gregorio Marañón, Madrid, Spain. 10. Instituto de Investigación Sanitaria Gregorio Marañón (IiSGM), Madrid, Spain. 11. HIV and Infectious Diseases Unit, Hospital Fundación Jiménez Díaz, Madrid, Spain. 12. Pharmacy Service, Hospital Universitario Dr Peset, Valencia, Spain.
Abstract
INTRODUCTION: The aim of this study was to reach consensus on the use of PROs (patient-reported outcome measures) in people living with HIV (PLHIV). METHODS: A scientific committee of professionals with experience in PROMs methodology issued recommendations and defined the points to support by evidence. A systematic review of the literature identified the coverage, utility, and psychometric properties of PROMs used in PLHIV. A Delphi survey was launched to measure the degree of agreement with the recommendations of a group of practicing clinicians and a group of patient representatives. RESULTS: Four principles and ten recommendations were issued; however, the results of the Delphi showed significant differences in the opinion between health professionals and PLHIV, and polarization within collectives, hampering consensus. CONCLUSIONS: Despite a wealth of evidence on the benefit of PROMs, there are clear barriers to their use by healthcare professionals in HIV care. Intervention on these barriers is paramount to allow truly patient-centered care.
INTRODUCTION: The aim of this study was to reach consensus on the use of PROs (patient-reported outcome measures) in people living with HIV (PLHIV). METHODS: A scientific committee of professionals with experience in PROMs methodology issued recommendations and defined the points to support by evidence. A systematic review of the literature identified the coverage, utility, and psychometric properties of PROMs used in PLHIV. A Delphi survey was launched to measure the degree of agreement with the recommendations of a group of practicing clinicians and a group of patient representatives. RESULTS: Four principles and ten recommendations were issued; however, the results of the Delphi showed significant differences in the opinion between health professionals and PLHIV, and polarization within collectives, hampering consensus. CONCLUSIONS: Despite a wealth of evidence on the benefit of PROMs, there are clear barriers to their use by healthcare professionals in HIV care. Intervention on these barriers is paramount to allow truly patient-centered care.
Authors: Heidi M Crane; Paul K Crane; James T Tufano; James D Ralston; Ira B Wilson; Tyler D Brown; Thomas E Davis; Laurie F Smith; William B Lober; Justin McReynolds; Shireesha Dhanireddy; Robert D Harrington; Carla V Rodriguez; Robin M Nance; Joseph A C Delaney; Steven A Safren; Mari M Kitahata; Rob J Fredericksen Journal: AIDS Behav Date: 2017-11
Authors: K Bristowe; F E M Murtagh; P Clift; R James; J Josh; M Platt; J Whetham; E Nixon; F A Post; K McQuillan; C Ní Cheallaigh; M Kall; J Anderson; A K Sullivan; R Harding Journal: Health Qual Life Outcomes Date: 2020-07-06 Impact factor: 3.186
Authors: Ian Porter; Daniela Gonçalves-Bradley; Ignacio Ricci-Cabello; Chris Gibbons; Jaheeda Gangannagaripalli; Ray Fitzpatrick; Nick Black; Joanne Greenhalgh; Jose M Valderas Journal: J Comp Eff Res Date: 2016-07-18 Impact factor: 1.744
Authors: Jeffrey V Lazarus; Kelly Safreed-Harmon; Simon E Barton; Dominique Costagliola; Nikos Dedes; Julia Del Amo Valero; Jose M Gatell; Ricardo Baptista-Leite; Luís Mendão; Kholoud Porter; Stefano Vella; Jürgen Kurt Rockstroh Journal: BMC Med Date: 2016-06-22 Impact factor: 8.775