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2.
J Am Acad Orthop Surg ; 28(9): e395-e400, 2020 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-31436752

RESUMO

INTRODUCTION: The Oxford Ankle Foot Questionnaire for Children (OxAFQ-C) is validated for assessing the impact of foot and ankle conditions in pediatric patients. The purpose of this cross-sectional study is to assess child-parent concordance and identify patient factors that predict improved agreement. METHODS: Patients aged 8 to 16 years with foot and ankle conditions and their parents completed the OxAFQ-C during routine clinic visits over a 9-month period. Demographic and medical information was collected by chart reviews. Responses in each domain were compared using a Wilcoxon signed-rank test, and the comparisons of responses by sex were analyzed with Wilcoxon rank-sum tests. Concordance was assessed with intraclass correlation coefficients. RESULTS: There were 87 child-parent dyads with 50 female patients (57.5%) and 37 male patients (42.5%). Most parent responders were mothers (84%). The mean patient age was 12.4 (±2.2) years. The most common diagnosis was pes planus (17%). Child scores were significantly higher than their parents' in the school and play (P = 0.008) and emotional (P = 0.001) domains. When stratified by age, children younger than 13 years had significantly higher scores than their parents across all domains (P = 0.015 physical, 0.002 school and play, 0.001 emotional), although the concordance for the school and play and emotional domains was only moderate (0.73 and 0.58, respectively). Female patients and their parents reported significantly lower scores compared with their male counterparts only in the emotional domain (84.37 vs 93.75, P = 0.025). CONCLUSION: Concordance is good between child and parent scores of the OxAFQ-C for assessing the impact of foot and ankle conditions. When stratified by age, patients younger than 13 years of age had higher scores than their parents' in all domains with the lowest concordance for the school and play and emotional domains. Female patients and their parents reported significantly lower scores than their male counterparts in the emotional domain. LEVEL OF EVIDENCE: Level IV.


Assuntos
Tornozelo/fisiopatologia , Deformidades do Pé/fisiopatologia , Pé/fisiopatologia , Adolescente , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Pais , Qualidade de Vida , Inquéritos e Questionários
3.
Am J Med Genet A ; 173(7): 1792-1795, 2017 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-28488342

RESUMO

Costello Syndrome is a rare congenital condition characterized by failure-to-thrive, cardiac abnormalities, distinctive facial features, predisposition to malignant tumors, and developmental delay. In 1999, we analyzed the functional health in a cohort of 18 patients. Since then, a mutation in the HRAS gene has been found to be causative, medical management has been refined, and the level of awareness has increased. The purpose of this study is to compare the functional health outcomes from the 1999 cohort with data prospectively collected from a comparable cohort in 2015. The Pediatric Outcome Data Collection Instrument (PODCI) was administered to parents of children with Costello syndrome during the 2015 International Costello Syndrome Conference. The same instrument and setting were used in the 1999 study. We compared functional health scores from the two groups. A total of 21 participants were included in the 2015 cohort; 15 females (71%) and 6 males (29%). Average age was 5.8 years (range 2-16). When comparing functional health outcomes, we found that the 2015 cohort scored slightly higher in Upper Extremity and Physical Function (57 vs. 54) and Comfort scales (86 vs. 82). However, there was no significant difference in any of the PODCI scales between the two groups. When compared with normative scores, both groups scored significantly lower in every scale except for happiness (p = 0.2952). Despite recent advancements, functional health outcomes in 2015 were similar to those measured in a different cohort in 1999.

4.
J Pediatr Orthop ; 37(3): e192-e196, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-27603191

RESUMO

BACKGROUND: The purpose of this study was to test the validity of a consumer-oriented activity monitor in adolescents and young adults undergoing limb salvage for primary bone malignancies. METHODS: A cross-sectional population of participants with an average age of 16 (range 12 to 22) years produced 472 days of activity monitoring during 25 evaluations periods alongside patient-reported outcome measures. RESULTS: Average daily steps ranged from 557 to 12,756 (mean=4711) and was moderately associated with the short-form (SF) 36 physical component subscale (r=0.46, P=0.04) as well as the SF6D health state utility measure (r=0.48, P=0.04), but not the SF36 mental component subscale (P=0.66) or Toronto extremity salvage score (P=0.07). Time from surgery was strongly correlated with average daily steps (r=0.7, P<0.001). CONCLUSIONS: A made-for-consumer activity monitor provided real-world data regarding the outcome of adolescent and young adult limb salvage, and evidence of validity in this population. Such lower cost, user-friendly devices may facilitate assessment of free-living activity and allow novel comparisons of treatment strategies. LEVEL OF EVIDENCE: Level II-diagnostic.


Assuntos
Actigrafia/instrumentação , Neoplasias Ósseas/cirurgia , Exercício Físico , Salvamento de Membro/reabilitação , Extremidade Inferior/cirurgia , Adolescente , Adulto , Análise de Variância , Estudos Transversais , Feminino , Humanos , Masculino , Reprodutibilidade dos Testes , Resultado do Tratamento , Adulto Jovem
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