2021
Validation of the Radiographic Global Impression of Change (RGI-C) score to assess healing of rickets in pediatric X-linked hypophosphatemia (XLH)
Lim R, Shailam R, Hulett R, Skrinar A, Nixon A, Williams A, Nixon M, Thacher T. Validation of the Radiographic Global Impression of Change (RGI-C) score to assess healing of rickets in pediatric X-linked hypophosphatemia (XLH). Bone 2021, 148: 115964. PMID: 33878504, DOI: 10.1016/j.bone.2021.115964.Peer-Reviewed Original ResearchConceptsRickets Severity ScaleInter-rater reliabilityGlobal Impression of ChangeX-linked hypophosphatemiaIntra-raterImpression of ChangeRadiographic Global Impression of ChangeGlobal scoreRGI-CModerate to almost perfect agreementStandardized response meanIntra-rater reliabilityAlmost perfect agreementWeighted kappa valuesResponse meanChange scoresStanding heightBaseline to weekLeg scoreHealing of ricketsSeverity ScalePerfect agreementRickets severityBurosumab treatmentKappa values
2018
Goal Attainment Scaling for haemophilia (GAS‐Hēm): testing the feasibility of a new patient‐centric outcome measure in people with haemophilia
Roberts J, Lattimore S, Recht M, Jackson S, Gue D, Squire S, Robinson K, Price V, Denne M, Richardson S, Rockwood K. Goal Attainment Scaling for haemophilia (GAS‐Hēm): testing the feasibility of a new patient‐centric outcome measure in people with haemophilia. Haemophilia 2018, 24: e199-e206. PMID: 29626387, DOI: 10.1111/hae.13454.Peer-Reviewed Original ResearchConceptsGoal Attainment ScalingStandardized response meanGoal attainmentQOL measuresPatient-centred outcome measuresAnnualized bleeding ratePatient-reported outcomesProportion of participantsQuality of lifeSelf-defined goalsResponse meanContent validityPatients aged 5Construct validityOutcome measuresPrimary outcomeAged 5QoLLeisure activitiesParticipantsGoal areasScoresAttainmentNorth American centresJoint problem
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