Sayf S A Faraj1, Miranda L van Hooff2, Roderick M Holewijn1, David W Polly3, Tsjitske M Haanstra1, Marinus de Kleuver4. 1. Department of Orthopaedic Surgery, VU University Medical Center, Amsterdam, The Netherlands. 2. Department of Research, Sint Maartenskliniek, Nijmegen, The Netherlands. 3. Department of Orthopaedic Surgery, University of Minnesota, Minneapolis, USA. 4. Department of Orthopedics, Radboud University Medical Center, Huispost 611, 6500HB, Nijmegen, The Netherlands. marinus.dekleuver@radboudumc.nl.
Abstract
PURPOSE: Adult spinal deformity (ASD) causes severe disability, reduces overall quality of life, and results in a substantial societal burden of disease. As healthcare is becoming more value based, and to facilitate global benchmarking, it is critical to identify and standardize patient-reported outcome measures (PROMs). This study aims to identify the current strengths, weaknesses, and gaps in PROMs used for ASD. METHODS: Studies were included following a systematic search in multiple bibliographic databases between 2000 and 2015. PROMs were extracted and linked to the outcome domains of WHO's International Classification of Functioning and Health (ICF) framework. Subsequently, the clinimetric quality of identified PROMs was evaluated. RESULTS: The literature search identified 144 papers that met the inclusion criteria, and nine frequently used PROMs were identified. These covered 29 ICF outcome domains, which could be grouped into three of the four main ICF chapters: body function (n = 7), activity and participation (n = 19), environmental factors (n = 3), and body structure (n = 0). A low quantity (n = 3) of papers was identified that studied the clinimetric quality of PROMs. The Scoliosis Research Society (SRS)-22 has the highest level of clinimetric quality for ASD. CONCLUSIONS: Outcome domains related to mobility and pain were well represented. We identified a gap in current outcome measures regarding neurological and pulmonary function. In addition, no outcome domains were measured in the ICF chapter body structure. These results will serve as a foundation for the process of seeking international consensus on a standard set of outcome domains, accompanied PROMs and contributing factors to be used in future clinical trials and spine registries.
PURPOSE: Adult spinal deformity (ASD) causes severe disability, reduces overall quality of life, and results in a substantial societal burden of disease. As healthcare is becoming more value based, and to facilitate global benchmarking, it is critical to identify and standardize patient-reported outcome measures (PROMs). This study aims to identify the current strengths, weaknesses, and gaps in PROMs used for ASD. METHODS: Studies were included following a systematic search in multiple bibliographic databases between 2000 and 2015. PROMs were extracted and linked to the outcome domains of WHO's International Classification of Functioning and Health (ICF) framework. Subsequently, the clinimetric quality of identified PROMs was evaluated. RESULTS: The literature search identified 144 papers that met the inclusion criteria, and nine frequently used PROMs were identified. These covered 29 ICF outcome domains, which could be grouped into three of the four main ICF chapters: body function (n = 7), activity and participation (n = 19), environmental factors (n = 3), and body structure (n = 0). A low quantity (n = 3) of papers was identified that studied the clinimetric quality of PROMs. The Scoliosis Research Society (SRS)-22 has the highest level of clinimetric quality for ASD. CONCLUSIONS: Outcome domains related to mobility and pain were well represented. We identified a gap in current outcome measures regarding neurological and pulmonary function. In addition, no outcome domains were measured in the ICF chapter body structure. These results will serve as a foundation for the process of seeking international consensus on a standard set of outcome domains, accompanied PROMs and contributing factors to be used in future clinical trials and spine registries.
Authors: Michael L Pezold; Andrea L Pusic; Wess A Cohen; James P Hollenberg; Zeeshan Butt; David R Flum; Larissa K Temple Journal: JAMA Surg Date: 2016-10-01 Impact factor: 14.766
Authors: Caroline B Terwee; Sandra D M Bot; Michael R de Boer; Daniëlle A W M van der Windt; Dirk L Knol; Joost Dekker; Lex M Bouter; Henrica C W de Vet Journal: J Clin Epidemiol Date: 2006-08-24 Impact factor: 6.437
Authors: Lawrence G Lenke; Michael G Fehlings; Christopher I Shaffrey; Kenneth M C Cheung; Leah Carreon; Mark B Dekutoski; Frank J Schwab; Oheneba Boachie-Adjei; Khaled M Kebaish; Christopher P Ames; Yong Qiu; Yukihiro Matsuyama; Benny T Dahl; Hossein Mehdian; Ferran Pellisé-Urquiza; Stephen J Lewis; Sigurd H Berven Journal: Spine (Phila Pa 1976) Date: 2016-02 Impact factor: 3.468
Authors: Javier Z Guzman; Holt S Cutler; James Connolly; Branko Skovrlj; Thomas E Mroz; K Daniel Riew; Samuel K Cho Journal: Spine (Phila Pa 1976) Date: 2016-03 Impact factor: 3.468
Authors: Justin S Smith; Christopher I Shaffrey; Sigurd Berven; Steven Glassman; Christopher Hamill; William Horton; Stephen Ondra; Frank Schwab; Michael Shainline; Kai-Ming Fu; Keith Bridwell Journal: Neurosurgery Date: 2009-07 Impact factor: 4.654
Authors: Peter G Passias; Frank A Segreto; Kevin A Moattari; Renaud Lafage; Justin S Smith; Breton G Line; Robert K Eastlack; Douglas C Burton; Robert A Hart; Shay Bess; Christopher I Shaffrey; Christopher P Ames; Virginie Lafage Journal: Spine Deform Date: 2022-03-09
Authors: Peter G Passias; Katherine E Pierce; Oscar Krol; Tyler Williamson; Sara Naessig; Waleed Ahmad; Lara Passfall; Peter Tretiakov; Bailey Imbo; Rachel Joujon-Roche; Jordan Lebovic; Stephane Owusu-Sarpong; Kevin Moattari; Nicholas A Kummer; Constance Maglaras; Brooke K O'Connell; Bassel G Diebo; Shaleen Vira; Renaud Lafage; Virginie Lafage; Aaron J Buckland; Themistocles Protopsaltis Journal: Eur Spine J Date: 2022-01-11 Impact factor: 2.721
Authors: A F Mannion; A Elfering; J Bago; F Pellise; A Vila-Casademunt; S Richner-Wunderlin; M Domingo-Sàbat; I Obeid; E Acaroglu; A Alanay; F S Pérez-Grueso; C R Baldus; L Y Carreon; K H Bridwell; S D Glassman; F Kleinstück Journal: Eur Spine J Date: 2017-09-02 Impact factor: 3.134
Authors: Marinus de Kleuver; Sayf S A Faraj; Tsjitske M Haanstra; Anna K Wright; David W Polly; Miranda L van Hooff; Steven D Glassman Journal: Spine Deform Date: 2021-04-06