PMID- 33513209
OWN - NLM
STAT- MEDLINE
DCOM- 20210615
LR  - 20230906
IS  - 1932-6203 (Electronic)
IS  - 1932-6203 (Linking)
VI  - 16
IP  - 1
DP  - 2021
TI  - OPEX: Development of a novel overall patient experience measure to facilitate 
      interpretation of comparison effectiveness studies.
PG  - e0245598
LID - 10.1371/journal.pone.0245598 [doi]
LID - e0245598
AB  - OBJECTIVES: A measure that encompasses both benefits and harms at the individual 
      patient level may facilitate comparisons between treatment options and improve 
      shared decision-making. The objective of this study was to develop a patient 
      reported measure to capture overall experience (including both benefits and 
      harms) of treatment using rheumatoid arthritis (RA) as a case example. METHODS: 
      Hierarchies for treatment benefits are known. Therefore, we developed a hierarchy 
      of adverse events (AEs) using a series of trajectory mapping and paired 
      comparison surveys. We subsequently used these data to construct a paired 
      comparison survey, asking patients to compare options including both a specified 
      level of benefit and an AE. These data were used to generate a hierarchy of 
      overall experience on treatment. RESULTS: 782 participants completed a series of 
      three surveys. The trajectory mapping procedure and a paired comparison survey 
      led to the generation of a hierarchy of AEs with nine levels ranging from No AEs 
      to irreversible serious complications. In a third survey, in which AEs were 
      paired with benefits, participants' ratings generated a 6-level hierarchy of 
      overall experiences ranging from Major improvement + No, mild or manageable AEs 
      (Level 1) to No improvement + Irreversible AEs (Level 6). CONCLUSIONS: Using a 
      trajectory mapping approach, we developed a patient reported measure representing 
      the distribution of patients' overall experiences on treatment. The intent of 
      this measure is to enable patients and their physicians to compare the percentage 
      of patients experiencing each level of outcome, from most to least desirable, 
      across treatments.
FAU - Fraenkel, Liana
AU  - Fraenkel L
AD  - Department of Medicine, Section of Rheumatology, Yale University School of 
      Medicine, New Haven, Connecticut, United States of America.
AD  - Department of Medicine, Section of Rheumatology, Berkshire Health Systems, 
      Pittsfield, Massachusetts, United States of America.
FAU - Wei, Zhenglin
AU  - Wei Z
AD  - Department of Engineering Management and Systems Engineering, The George 
      Washington University, Washington, DC, United States of America.
FAU - Ramsey, Christine
AU  - Ramsey C
AD  - Mental Illness Research Education and Clinical Center, Corporal Michael J. 
      Crescenz VA Medical Center, Philadelphia, PA, United States of America.
AD  - Yale Center for Medical Informatics, Yale School of Medicine, New Haven, CT, 
      United States of America.
FAU - Wiedmeyer, Carole
AU  - Wiedmeyer C
AD  - Patient-Centered Research, Global Heathy Living Foundation, Upper Nyack, NY, 
      United States of America.
FAU - Michaud, Kaleb
AU  - Michaud K
AD  - Division of Rheumatology and Immunology, University of Nebraska Medical Center, 
      Omaha, NE, United States of America.
AD  - Forward, The National Databank for Rheumatic Diseases, Wichita, KS, United States 
      of America.
FAU - Neogi, Tuhina
AU  - Neogi T
AD  - Department of Medicine, Section of Rheumatology, Boston University School of 
      Medicine, Boston, MA, United States of America.
FAU - Nowell, W Benjamin
AU  - Nowell WB
AUID- ORCID: 0000-0002-4951-6476
AD  - Patient-Centered Research, Global Heathy Living Foundation, Upper Nyack, NY, 
      United States of America.
FAU - Venkatachalam, Shilpa
AU  - Venkatachalam S
AD  - Patient-Centered Research, Global Heathy Living Foundation, Upper Nyack, NY, 
      United States of America.
FAU - Broniatowski, David A
AU  - Broniatowski DA
AUID- ORCID: 0000-0002-3302-9497
AD  - Department of Engineering Management and Systems Engineering, The George 
      Washington University, Washington, DC, United States of America.
LA  - eng
GR  - K24 AR060231/AR/NIAMS NIH HHS/United States
GR  - P30 AR072571/AR/NIAMS NIH HHS/United States
GR  - UL1 TR001863/TR/NCATS NIH HHS/United States
PT  - Comparative Study
PT  - Journal Article
PT  - Research Support, N.I.H., Extramural
PT  - Research Support, Non-U.S. Gov't
PT  - Research Support, U.S. Gov't, Non-P.H.S.
DEP - 20210129
PL  - United States
TA  - PLoS One
JT  - PloS one
JID - 101285081
SB  - IM
EIN - PLoS One. 2021 Mar 9;16(3):e0248598. PMID: 33690654
MH  - Arthritis, Rheumatoid/*therapy
MH  - Female
MH  - Humans
MH  - Male
MH  - *Patient Outcome Assessment
PMC - PMC7846019
COIS- The authors do not have any conflicts of interest related to the content of this 
      manuscript.
EDAT- 2021/01/30 06:00
MHDA- 2021/06/16 06:00
PMCR- 2021/01/29
CRDT- 2021/01/29 17:09
PHST- 2020/06/24 00:00 [received]
PHST- 2021/01/04 00:00 [accepted]
PHST- 2021/01/29 17:09 [entrez]
PHST- 2021/01/30 06:00 [pubmed]
PHST- 2021/06/16 06:00 [medline]
PHST- 2021/01/29 00:00 [pmc-release]
AID - PONE-D-20-19439 [pii]
AID - 10.1371/journal.pone.0245598 [doi]
PST - epublish
SO  - PLoS One. 2021 Jan 29;16(1):e0245598. doi: 10.1371/journal.pone.0245598. 
      eCollection 2021.