Current use of patient-reported outcomes in pediatric limb deformity surgery
- Authors:
- Amakoutou, K. and Liu, R. W.
- Abstract:
- Patient-reported outcome (PRO) instruments are critical to evaluate the natural history of conditions and treatment effects, but have not been well studied in pediatric limb deformity. The goal of this study was to identify and assess the most commonly used PROs in pediatric limb deformity surgery across a representative sample of the recent orthopedic literature. A review was performed from 1 January 2016 to 31 December 2018 in five orthopedic journals previously identified as having the greatest impact: Journal of Pediatric Orthopaedics, Journal of Pediatric Orthopaedics B, Journal of Children's Orthopaedics, The Journal of Bone and Joint Surgery, and The Bone and Joint Journal. Clinical research studies involving pediatric population, operative management of limb deformity, and PRO measures were reviewed. The initial search of 3489 publications found 130 clinical articles involving operative management of pediatric limb deformity. Thirty-one studies (24%) met inclusion criteria, in which a total of 23 different PRO instruments were used. An average of 1.5 PRO instruments was reported per study (range 1-4). No outcome instrument was used by more than five different studies in this review, and no instrument validated in the pediatric population was used by more than three different studies. PROs currently used in pediatric limb deformity surgery are highly heterogeneous, as well as underutilized. Future research is necessary to either validate a current PRO in pediatric limb deformity or to develop a new instrument using pediatric Patient-Reported Outcomes Measurement Information System or Pediatric Outcomes Data Collection Instrument as a benchmark.
- DOI:
- 10.1097/bpb.0000000000000782
- Journal:
- J Pediatr Orthop B
- issn:
- 1060-152x
- Publication year:
- 2021
- pages:
- 399-404
- Symptom status:
- Emotional state
Physical state - Functional status:
- Physical functioning
- General health perceptions / HRQoL:
- Health-related quality of life
- Age:
- Children (0-18)
- Disease:
- Congenital malformations, deformations and chromosomal abnormalities and related symptoms
Diseases of and symptoms related to the musculoskeletal system and connective tissue - PRO / non-PRO:
- Patient Reported Outcome
- Type of measurement instrument:
- 1 - Questionnaires
- Instrument:
- AKPS - Anterior Knee Pain Scale [alias: KPS - Kujala Patellofemoral Score; Kujala Score] (versions: AKPS-6)
Barnhöft questionnaire
CPCHILD - Caregiver Priorities and Child Health Index of Life with Disabilities
EQ-5D - EuroQoL-5 Dimensions (versions: EQ5D-VAS; Patient-Reported Health Score; EQ-5D-Pso - EQ-5D-Psoriasis)
EQ-5D-Y - European Quality of Life-5 Dimensions for youth (versions: EQ-5D-Y Proxy; EQ-5D-Y-3L; EQ-5D-Y-5L; EQ-5D-Y-VAS; EQ-5D-Y-VAS-e-version)
FAQ - (Gillette) Functional Assessment Questionnaire
HHS - Harris Hip Score (versions: mHHS)
HOOS - Hip disability and Osteoarthritis Outcome Score (versions: HOOS-12; HOOS JR - HOOS Joint Replacement)
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)
Marx Activity Score / Scale
NAHS - Non-Arthritic Hip Score
NCCPC - Non-communicating Children’s Pain Checklist (versions: NCCPC-PV - postoperative version; NCCPC-R)
OHS - Oxford Hip Score
OxAFQ - Oxford Ankle Foot Questionnaire (versions; OxAFQ-Children; OxAFQ for Parents)
Pain score of Hogan et al
PedsQL-CP - Pediatric Quality of Life Inventory-Cerebral Palsy module
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)
RSES - Rosenberg Self-Esteem Scale (versions: RSES-10)
SF-12 - 12-item Short Form Health Survey [alias: RAND-12] (versions: SF-12v2; VR-12 - Veterans SF-12; SF-12 MCS; SF-12 PCS)
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) | | also see: database.cosmin.nl
TAS - Tegner Activity Score (also: TAS - Tegner Activity Level Scale) (versions: TAS-e-version)
UCLA - University of California Los Angeles Activity Score
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)