Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes. (Record no. 2642)

MARC details
000 -LEADER
fixed length control field 03233nam a22004097a 4500
008 - FIXED-LENGTH DATA ELEMENTS--GENERAL INFORMATION
fixed length control field 170428s20172017 xxu||||| |||| 00| 0 eng d
022 ## - INTERNATIONAL STANDARD SERIAL NUMBER
International Standard Serial Number 1932-6203
040 ## - CATALOGING SOURCE
Original cataloging agency Ovid MEDLINE(R)
099 ## - LOCAL FREE-TEXT CALL NUMBER (OCLC)
PMID 28257414
245 ## - TITLE STATEMENT
Title Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes.
251 ## - Source
Source PLoS ONE [Electronic Resource]. 12(3):e0171114, 2017
252 ## - Abbreviated Source
Abbreviated source PLoS ONE. 12(3):e0171114, 2017
253 ## - Journal Name
Journal name PloS one
260 ## - PUBLICATION, DISTRIBUTION, ETC.
Year 2017
260 ## - PUBLICATION, DISTRIBUTION, ETC.
Manufacturer FY2017
266 ## - Date added to catalog
Date added to catalog 2017-05-06
501 ## - WITH NOTE
Local holdings Available online through MWHC library: 2006 - present
520 ## - SUMMARY, ETC.
Abstract The objectives of this study were to describe and demonstrate a new model of developing patient reported outcomes (PROs) that are patient-centered, and to test the hypothesis that following this model would result in a qualitatively different PRO than if the typical PRO development model were followed. The typical process of developing PROs begins with an initial list of signs or symptoms originating from clinicians or PRO developers; patient validation of this list ensures that the list (i.e., the new PRO) is interpretable by patients, but not that patient perspectives are central or even represented. The new model begins with elicitation from clinicians and patients independently and separately. These perspectives are formally analyzed qualitatively, and the results are iteratively integrated by researchers, supporting clinical relevance and patient centeredness. We describe the application of this new model to the development of a PRO for urinary signs and symptoms in individuals with neuropathic bladder, and test the hypothesis that the two processes generate qualitatively different instruments using a national validation sample of 300 respondents. Of its 29 items, the new instrument included 13 signs/symptoms derived from existing clinical practice guidelines, with 16 others derived from the patient/focus groups. The three most-endorsed items came from the patients, and the three least-endorsed items came from clinical guidelines. Thematic qualitative analysis of the elicitation process, as well as the results from our national sample, support the conclusion that the new model yields an instrument that is clinically interpretable, but more patient-centered, than the typical model would have done in this context.
546 ## - LANGUAGE NOTE
Language note English
650 ## - SUBJECT ADDED ENTRY--TOPICAL TERM
Topical term or geographic name entry element *Outcome Assessment (Health Care)/sn [Statistics & Numerical Data]
650 ## - SUBJECT ADDED ENTRY--TOPICAL TERM
Topical term or geographic name entry element *Patient Reported Outcome Measures
650 ## - SUBJECT ADDED ENTRY--TOPICAL TERM
Topical term or geographic name entry element *Patients/sn [Statistics & Numerical Data]
650 ## - SUBJECT ADDED ENTRY--TOPICAL TERM
Topical term or geographic name entry element Focus Groups
650 ## - SUBJECT ADDED ENTRY--TOPICAL TERM
Topical term or geographic name entry element Guidelines as Topic
650 ## - SUBJECT ADDED ENTRY--TOPICAL TERM
Topical term or geographic name entry element Humans
650 ## - SUBJECT ADDED ENTRY--TOPICAL TERM
Topical term or geographic name entry element Surveys and Questionnaires
651 ## - SUBJECT ADDED ENTRY--GEOGRAPHIC NAME
Institution MedStar National Rehabilitation Network
651 ## - SUBJECT ADDED ENTRY--GEOGRAPHIC NAME
Institution MedStar Washington Hospital Center
656 ## - INDEX TERM--OCCUPATION
Department Physical Medicine and Rehabilitation
657 ## - INDEX TERM--FUNCTION
Medline publication type Journal Article
700 ## - ADDED ENTRY--PERSONAL NAME
Local Authors Groah, Suzanne L
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Local Authors Ljungberg, Inger H
700 ## - ADDED ENTRY--PERSONAL NAME
Local Authors Schladen, Manon Maitland
790 ## - Authors
All authors Garver A, Groah SL, Ljungberg IH, Schladen MM, Tractenberg RE
856 ## - ELECTRONIC LOCATION AND ACCESS
DOI <a href="https://dx.doi.org/10.1371/journal.pone.0171114">https://dx.doi.org/10.1371/journal.pone.0171114</a>
Public note https://dx.doi.org/10.1371/journal.pone.0171114
942 ## - ADDED ENTRY ELEMENTS (KOHA)
Koha item type Journal Article
Item type description Article
Holdings
Withdrawn status Lost status Damaged status Not for loan Collection Home library Current library Date acquired Total Checkouts Full call number Barcode Date last seen Price effective from Koha item type
          MedStar Authors Catalog MedStar Authors Catalog 05/06/2017   28257414 28257414 05/06/2017 05/06/2017 Journal Article

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