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Utilization of a Wide Array of Nonvalidated Outcome Scales in Pediatric Orthopaedic Publications: Can't We All Measure the Same Thing?
Authors:
Truong, W. H., Price, M. J., Agarwal, K. N., Suryavanshi, J. R., Somasegar, S., Thompson, M., Fabricant, P. D., and Dodwell, E. R.
Abstract:
PURPOSE: Clinical changes are best evaluated with standardized, validated outcomes, including both patient-reported outcome measures and surgeon-reported outcome measures (PROMs and SROMs). The purpose of this study was to describe the spectrum of outcome measures used in pediatric orthopaedic publications over the past 10 years and to determine the proportion that are in fact age-appropriate, validated, and appropriately applied in terms of condition and population. METHODS: The Journal of Bone and Joint Surgery, The Bone and Joint Journal, Journal of Pediatric Orthopaedics A and B, and Journal of Children's Orthopaedics were systematically searched for studies including children aged 18 and below, over a 10-year period from January 2005 to December 2014. Economic evaluations, letters, editorials, review articles, and clinical guidelines were excluded. SROMs and PROMs used were extracted, as were details on subject age and condition for which they were used. Each outcome scale was assessed for validity, and the proportion of scales used appropriately was calculated. Cochrane-Armitage test of trend was used to determine changes in PROM and SROM utilization over the study period. RESULTS: A total of 4614 articles were identified, of which 2251 met inclusion and exclusion criteria. In total, 259 (11.5%) of studies used a PROM, whereas 326 (14.5%) used a SROM. A total of 230 different outcome scales were identified; 115 were patient reported and 115 were surgeon reported. However, only 18.7% of SROMs and 38.3% of PROMs were applied to an age and disease-appropriate demographic. Overall, there was a significant increase in the overall utilization of PROMs during the study period (P=0.004), but no corresponding increase in pediatric-validated PROMs (P=0.164). SROM utilization did not significantly change over the study period (P=0.337). CONCLUSIONS: Within the field of pediatric orthopaedics, an expansive variety of outcome scales are used, many of which have not been validated in children. Improved uniformity in reporting of outcomes and use of disease and age-validated outcomes scales is essential to improve multicenter research collaboration and data quality to generate appropriate evidence-based conclusions and treatment strategies in pediatric orthopaedics. LEVEL OF EVIDENCE: Level IV-systematic review.
DOI:
10.1097/bpo.0000000000001263
Journal:
J Pediatr Orthop
issn:
0271-6798
Publication year:
2018
pages:
Biological and physiological variables:
Biological and physiological variables
Symptom status:
Cognitive/mental state
Functional status:
Cognitive/mental functioning
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Age:
Children (0-18)
Disease:
Certain conditions originating in the perinatal period and related symptoms
PRO / non-PRO:
Non-patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
2PD - Two Point Discrimination ACFAS - American College of Foot and Ankle Surgeons Achenchack child behavior checklist Adelaar Scale AHA - Assisting Hand Assessment AKPS - Anterior Knee Pain Scale [alias: KPS - Kujala Patellofemoral Score; Kujala Score] (versions: AKPS-6) AMP - Amputee Mobility Predictor (versions: AMP no Pro - AMP-no Prosthesis) AMS - Active Movement Scale AOFAS - American Orthopedic Foot and Ankle Score (versions: AOFAS-DFQ - AOFAS-Diabetic Foot Q; AOFAS-AHES; AOFAS Midfoot Scale) ASES - American Shoulder and Elbow Surgeons Score (also: ASES Standard Shoulder Assessment Form) (versions: ASES-p - ASES-patient selfevaluation form; M-ASES; ASES-elbow) Asher and Olson Classification of Motor Paralysis ASK - Activities Scale for Kids Atar Scoring System BADS - Barry Albright Dystonia Scale Baecke questionnaire Bangla Clubfoot Tool Barrett et al Satisfaction Survey BASC - Behavior Assessment Scale/System for Children (versions: BASC-1; BASC-2; BASC-3; BASC‐SRP - BASC-Self‐Report of Personality; BASC-TRS = BASC-Teacher Rating Scale) BBQ - Brace Beliefs Questionnaire Bellemore Criteria Berkeley Clinical Assessment Borg Visual Analog Scale Burke-Fahn-Marsden Rating Caregiver Support (On Likert Scale) Cavendish outcome CDI - Children's Depression Inventory (versions: SCDI; CDI-SF) CDLQI - Childrens' Dermatology Life Quality Index Cheng and Tang Torticollis Score CHEOPS - Children’s Hospital of Eastern Ontario Pain Scale CHOHES - Children's Hospital Oakland Hip Evaluation Scale CHOP - Children’s Hospital of Philadelphia forearm fracture fixation classification CHQ-CF - Child Health Questionnaire-Child Form (versions: CHQ-CF45; CHQ-CF87; CHQ-CF-BREF) CHQ-PF - Child Health Questionnaire – Parent Form (versions: CHQ-PF27; CHQ-PF28; CHQ-PF50) CKRS - Cincinnati Knee Rating System (versions: Noyes-CKRS) Clarke and Curtis Score Constant Score [alias: Constant-Murley Shoulder Score] (versions: Adjusted Constant) Cooney Score Coughlin Score CP QOL - Cerebral Palsy Quality of Life (versions: CP QOL-Child; CP QOL-teenager; CP QOL-primary caregiver) CSQ - Client Satisfaction Questionnaire (versions: CSQ-8 items) CTSIB - Clinical Test of Sensory Interaction in Balance (versions: mCTSIB; i-mCTSIB - instrumented mCTSIB; PCTSIB - Paediatric CTSIB) Dahl Classification Daily Living Questionnaire about impact of cast
DASH - Disabilities of the Arm, Shoulder and Hand (versions: DASH Modified; M2-DASH - Manchester modified DASH) Dhillon Score Dimeglios Scoring Dindo-Clavien classifications Duclos and Gilbert functional Scale Dugdale and Renshaw classification
El Sobsky Scoring System EOSQ - Early Onset Scoliosis Questionnaire (versions: EOSQ-24) EPQ - Eysenck Personality Questionnaire (versions: EPQ-SV; EPQ-R) FAAM - Foot and Ankle Ability Measure (versions: Quick-FAAM; Quick-FAAM electronic) FACES - Wong-Baker FACES Pain Rating Scale (ook: WBFPRS, WBF, WBS) FAD - McMaster Family Assessment Device Fairbank et al Backpack Questionnaire FAOS - Foot and Ankle Outcome Score FAQ - (Gillette) Functional Assessment Questionnaire FFI - Foot Function Index (versions: FFI-17; FFI-18; FFI-5pt; FFI-r) FIM - Functional Independence Measure (versions: FIMm; FIM observation; FIM phone; Motor FIM; SV Motor FIM) Flynn Criteria FMS - Functional Mobility Scale (versions: FMS-RS - FMS-Rett Syndrome) FPS - Faces Pain Scale (versions: FPS-R; FPS-6; FPS-7; FPS-R; FPS-R; FPS-Smartphone) FTF - Five -to-Fifteen questionnaire Functional outcome (by Anderson) Garceau and Palmer system GAS - Goal Attainment Scale GCS - Glasgow Coma Scale Ghanem and Seringe classification Gilbert and Raimondi Scale (elbow) GMFCS - Gross Motor Function Classification System (versions: GMFCS-E&R - GMFCS-Expanded & Revised) GMFM - Gross Motor Function Measure (versions: GMFM-66; GMFM-high-functioning children module) Harter Self-Perception Profile HCQ - Hughston Clinic Questionnaire Heyman and Herndon Clinical Criteria
HHS - Harris Hip Score (versions: mHHS) Hospital for Sick Children AMS scores HSS - Hospital for Special Surgery (versions: HSS-1; HSS-2; HSS-SV; HSS-shoulder; HSS-knee; HSS-DDI - HSS-dysphagia and dysphonia inventory) HUI-3 - Health Utilities Index-Mark 3 IKDC-SKF - International Knee Documentation Committee-Subjective Knee Form (versions: IKDC-9; knee ligament standard evaluation form; Pediatric IKDC-SKF; Pediatric IKDC-SKF-e-version) International Clubfoot Study Group IOF - Impact on Family Scale [Alias: IFS] (versions: IOF-R) IOWA Hip Score JTHFT - Jebsen Taylor Hand Function Test (versions: MJTHFT) [alias: JTT] KIDSCREEN-52 items - Health Related Quality of Life Questionnaire for Children and Young People and their Parents-52 (versions: KIDSCREEN-52-e-version) Kim elbow performance index Kirkos and Papadopoulos Shoulder Function KJOC - Kerlan-Jobe Orthopaedic Clinic (versions: KJOCSE - KJOC Shoulder and Elbow) Kling Classification Knee Society Clinical Rating System KOOS - Knee injury and Osteoarthritis Outcome Score (versions: KOOS-Child; KOOS-JR - KOOS-Joint Replacement; KOOS-12; KOOS-PF - KOOS PatelloFemoral pain and osteoarthritis) Laaveg and Ponseti Score Lehman Foot Score Liu criteria LKS - Lysholm (Knee) Score (versions: LKS-M) LLD - Limb Length Discrepancy Questionnaire Locognosia LSS - Level of Sitting Scale MABC-2 - Movement Assessment Battery for Children-2 Magone classification Mallet Scale (shoulder) Manes, Costa, Innao grading Marx Activity Score / Scale McCarthy Scale for Total lower limb function McKay Classification MEPS/MEPI - Mayo Elbow Performance Score/Index Merle d’Aubigné score MFA - Musculoskeletal Function Assessment (versions: SMFA) Mitchell and Adams classification Modified House Functional Classification Morrey Elbow Score MRC Scale - Medical Research Council Scale MSTS - Musculoskeletal Tumor Society Scoring System MUUL - Melbourne Assessment of Unilateral Upper Limb Function (versions: MUUL-2) MWS - Mayo Wrist Score New York Longitudinal Study Temperament Scale NHPT - Nine-Hole Peg Test Non-communicating children’s pain checklist NRS - Numeric Rating Scale (versions: NRS-6; NRS-11; NRS-21; NRS-101; NPRS - NRS Pain) OAK - Orthopaedische Arbeitsgruppe Knie (Orthopedic Working group Knee (OAK) Knee Evaluation) ODI - Oswestry Disability Index (versions: ODI 2.0; ODI 2.1a; ODI AAOS/MODEMS; chir ODI - chiropractor ODI; revised ODI; modified ODI) Osterkamp, cailouette, and hoffer Oucher-NRS OxAFQ - Oxford Ankle Foot Questionnaire (versions; OxAFQ-Children; OxAFQ for Parents) PAQ - Physical Activity Questionnaire (versions: PAQ-8/9; Pre-PAQ - Preschool; EY-PAQ - Early Years; NPAQ - Nordic; NPAQ-short; ; PAQ-C - older children; PAQ-A - Adolscents; PAQ-13; cPAQ - computer-based; O-O-S PAQ - Out-of-School; ATLS-PAQ - Arab Teens Lifestyle
Study-PAQ) Parental Expectation Questionnaire about in-toeing Parent perception of toe-walking frequency Parent Questionnaire/Swedish Parent Questionnaire Parent report of post-traumatic symptoms Parent’s Acceptability Questionnaire Pediatric Trauma Score Pedi-IKDC - Pediatric International Knee Documentation Committee Subjective Knee Form PEDI - Pediatric Evaluation of Disability Inventory (versions: PEDI-CAS - PEDI-Caregiver Assistance Scale; PEDI-CAT - PEDI-Computer Adaptive Test; PEDI-CAT ASD-autism spectrum disorder) PedsQL 4.0 Generic Core Scales - Pediatric Quality of Life Inventory Generic Core Scales (versions: PedsQL 4.0 SF15; PedsQL 4.0 TODDLER; PedsQL 4.0 YOUNG CHILD; PedsQL 4.0 CHILD; PedsQL 4.0 TEENAGER; PedsQL 4.0 SF15 Toddler/Young Child/Child/Teen) PedsQL-parent version - Pediatric Quality of Life-parent version Pirani Score PODCI - Pediatric Outcomes Data Collection Instrument (versions: PODCI-v2; PODCI-UE - PODCI-Upper Extremity; PODCI-parent proxy form; Scoliosis Research Society PODCI; Scoliosis Research Society PODCI-e-version) Ponseti hip score PRS - Physician Rating Scale PSI - Parenting Stress Index (also: PSIQuestioonnaire) (versions: PSI-SF) PTQM - Parent total quality pain management Quality of Life Profile for Spinal Disorders Questionnaire about AIS and scoliosis Quick DASH - Quick Disabilities of the Arm, Shoulder and Hand (versions: Modified Quick DASH-9; Quick DASH sport) Raimondi Scale (hand) Rancho Scale Ratliff’s criteria Rett Syndrome Behavior Checklist RMDQ - Roland Morris Disability Questionnaire (versions: RMDQ-18) Rosén-Lundborg score Rosen Score Rowe Score (versions: Rowe Score Mod - Rowe Score Modification) Roye Clubfoot questionnaire Saleh and Scott classification SANE - Single Assessment Numerical Evaluation SAQ - Scoliosis appearance questionnaire SAQ - Sexual Activity Questionnaire SBHQ - Spina Bifida Hips Questionnaire SBSQ - Spina Bifida Spine Questionnaire Scaphoid outcome score SDQ - Strengths and Difficulties Questionnaire (versions: SDQ Children and Adolescents; SDQ Youth) SEI - Coopersmith Self-Esteem Inventory self-reported foot outcome (able to wear shoes, foot pain, foot hypersensitivity, cosmetic concerns) Semmes-Weinstein Aesthesiometer SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: MOS SF-36]] (versions: VSF-36 LoA - Visual Version of the SF-36 Limitations of Physical Activities domain; VR-36 - Veterans SF-36) database.cosmin.nl SHUEE - Shriners Hospital Upper Extremity Evaluation Simon classification Sleep/ activity survey SOQ - Short term outcomes questionnaire Southwick Scoring system SRS - Scoliosis Research Society (versions: SRS-7; SRS-22; SRS-22r; SRS-24; SRS-30) SST - Simple Shoulder Test [alias; Patte score] (versions: DSST) STAIC - State Trait Anxiety Inventory for Children St. Clair functional Hip score Steinberg and Rodriguez-Merchan classification Stockholm Clinical Score Strength Testing (versions: Kendall Strength test) Strickland classification (versions: adjusted; modificaton) Subjective opinion of appearance and function of thumb SWM - Semmes Weinstein Monofilaments (versions: 5-piece set; 6-piece set; 20-piece set; 450 g filament for localization) Symptom Score (Baca et al) Tada Scoring TAM - Total Active Motion Tegner Score TESS - Toronto Extremity Salvage Score (versions: TESS-UE - Upper Extremity; TESS-LE - Lower Extremity) Tibone elbow outcome scoring system Timmerman- Andrew Elbow Score Toronto Test Score TPM - Total Passive Motion VAS Parent Satisfaction - Visual Analog Scale for Parent Satisfaction VAS Satisfaction - Visual Analog Scale for Satisfaction VAS score of caregiver questionnaire VAS - Visual Analogue Scale (versions: vertical; horizontal; 0-10; 0-100) Venham Situational Anxiety Score VSP-A - Vecú de Santé Percué Adolescent (versions: VSP-A12; VSP-Ae - VSP-8-10 years; VSP-Ap - VSP-Parents of all ages) Wang criteria WeeFIM - Functional Independence Measure for Children [alias: PFIM - Pediatric Functional Independence Measure] WFH - World Federation of Hemophilia orthopaedic joint score [alias: Gilbert Score (or: Scale)] Withey’s modified classifications WOMAC - Western Ontario and McMaster Universities Osteoarthritis Index (versions: Individualized WOMAC; WOMAC-Likert Scale; WOMACsf; WOMAC-12; WOMACv3, foot and ankle; R-WOMAC - Reduced WOMAC; ShortMAC; Modified WOMAC) WOSI - Western Ontario Shoulder Instability Index Yoo Clinical Criteria Zancolli Classification
