PMID- 28914116
OWN - NLM
STAT- MEDLINE
DCOM- 20171109
LR  - 20181113
IS  - 1745-3682 (Electronic)
IS  - 1745-3674 (Print)
IS  - 1745-3674 (Linking)
VI  - 88
IP  - 6
DP  - 2017 Dec
TI  - Defining a core outcome set for adolescent and young adult patients with a spinal 
      deformity.
PG  - 612-618
LID - 10.1080/17453674.2017.1371371 [doi]
AB  - Background and purpose - Routine outcome measurement has been shown to improve 
      performance in several fields of healthcare. National spine surgery registries 
      have been initiated in 5 Nordic countries. However, there is no agreement on 
      which outcomes are essential to measure for adolescent and young adult patients 
      with a spinal deformity. The aim of this study was to develop a core outcome set 
      (COS) that will facilitate benchmarking within and between the 5 countries of the 
      Nordic Spinal Deformity Society (NSDS) and other registries worldwide. Material 
      and methods - From August 2015 to September 2016, 7 representatives (panelists) 
      of the national spinal surgery registries from each of the NSDS countries 
      participated in a modified Delphi study. With a systematic literature review as a 
      basis and the International Classification of Functioning, Disability and Health 
      framework as guidance, 4 consensus rounds were held. Consensus was defined as 
      agreement between at least 5 of the 7 representatives. Data were analyzed 
      qualitatively and quantitatively. Results - Consensus was reached on the 
      inclusion of 13 core outcome domains: "satisfaction with overall outcome of 
      surgery", "satisfaction with cosmetic result of surgery", "pain interference", 
      physical functioning", "health-related quality of life", "recreation and 
      leisure", "pulmonary fatigue", "change in deformity", "self-image", "pain 
      intensity", "physical function", "complications", and "re-operation". Panelists 
      agreed that the SRS-22r, EQ-5D, and a pulmonary fatigue questionnaire (yet to be 
      developed) are the most appropriate set of patient-reported measurement 
      instruments that cover these outcome domains. Interpretation - We have identified 
      a COS for a large subgroup of spinal deformity patients for implementation and 
      validation in the NSDS countries. This is the first study to further develop a 
      COS in a global perspective.
FAU - de Kleuver, Marinus
AU  - de Kleuver M
AD  - a Department of Orthopedic Surgery , Radboud University Medical Center , Nijmegen 
      , the Netherlands.
FAU - Faraj, Sayf S A
AU  - Faraj SSA
AD  - b Department of Orthopedic Surgery , VU University Medical Center , Amsterdam , 
      the Netherlands.
FAU - Holewijn, Roderick M
AU  - Holewijn RM
AD  - b Department of Orthopedic Surgery , VU University Medical Center , Amsterdam , 
      the Netherlands.
FAU - Germscheid, Niccole M
AU  - Germscheid NM
AD  - c Research Department , AOSpine International , Davos , Switzerland.
FAU - Adobor, Raphael D
AU  - Adobor RD
AD  - d Section for Spine Surgery, Department of Orthopedic Surgery , Oslo University 
      Hospital-Rikshospitalet.
FAU - Andersen, Mikkel
AU  - Andersen M
AD  - e Center for Spine Surgery & Research , Middelfart Hospital , Middelfart , 
      Denmark.
FAU - Tropp, Hans
AU  - Tropp H
AD  - f Department of Spinal Surgery, Faculty of Health Sciences , Linkoping University 
      , Linkoping , Sweden.
FAU - Dahl, Benny
AU  - Dahl B
AD  - g Spine Unit, Department of Orthopaedic Surgery, Rigshospitalet , University of 
      Copenhagen , Copenhagen, Denmark & Department of Orthopaedic Surgery , Texas 
      Children's Hospital and Baylor College of Medicine , Houston , Texas , USA.
FAU - Keskinen, Heli
AU  - Keskinen H
AD  - h Department of Paediatric Orthopaedic Surgery , University of Turku and Turku 
      University Hospital , Turku , Finland.
FAU - Olai, Anders
AU  - Olai A
AD  - f Department of Spinal Surgery, Faculty of Health Sciences , Linkoping University 
      , Linkoping , Sweden.
FAU - Polly, David W
AU  - Polly DW
AD  - i Department of Orthopaedic Surgery , University of Minnesota , Minneapolis , 
      USA.
FAU - van Hooff, Miranda L
AU  - van Hooff ML
AD  - a Department of Orthopedic Surgery , Radboud University Medical Center , Nijmegen 
      , the Netherlands.
AD  - j Department of Research , Sint Maartenskliniek , Nijmegen , the Netherlands.
FAU - Haanstra, Tsjitske M
AU  - Haanstra TM
AD  - a Department of Orthopedic Surgery , Radboud University Medical Center , Nijmegen 
      , the Netherlands.
AD  - b Department of Orthopedic Surgery , VU University Medical Center , Amsterdam , 
      the Netherlands.
LA  - eng
PT  - Journal Article
PT  - Multicenter Study
DEP - 20170915
PL  - Sweden
TA  - Acta Orthop
JT  - Acta orthopaedica
JID - 101231512
SB  - IM
MH  - Adolescent
MH  - Adult
MH  - *Consensus
MH  - Delphi Technique
MH  - Endpoint Determination/*methods
MH  - Female
MH  - Humans
MH  - Male
MH  - Orthopedic Procedures/*methods
MH  - *Patient Satisfaction
MH  - *Quality of Life
MH  - Retrospective Studies
MH  - Scandinavian and Nordic Countries
MH  - Spinal Curvatures/psychology/*surgery
MH  - Surveys and Questionnaires
MH  - Treatment Outcome
MH  - Young Adult
PMC - PMC5694805
EDAT- 2017/09/16 06:00
MHDA- 2017/11/10 06:00
PMCR- 2017/11/01
CRDT- 2017/09/16 06:00
PHST- 2017/09/16 06:00 [pubmed]
PHST- 2017/11/10 06:00 [medline]
PHST- 2017/09/16 06:00 [entrez]
PHST- 2017/11/01 00:00 [pmc-release]
AID - iort-88-612 [pii]
AID - 10.1080/17453674.2017.1371371 [doi]
PST - ppublish
SO  - Acta Orthop. 2017 Dec;88(6):612-618. doi: 10.1080/17453674.2017.1371371. Epub 
      2017 Sep 15.