2023
Perspectives of Adolescents and Young Adults with Sickle Cell Disease and Clinicians on Improving Transition Readiness and a Videogame Intervention
Aronson P, Nolan S, Schaeffer P, Hieftje K, Ponce K, Calhoun C. Perspectives of Adolescents and Young Adults with Sickle Cell Disease and Clinicians on Improving Transition Readiness and a Videogame Intervention. Blood 2023, 142: 5116. DOI: 10.1182/blood-2023-173310.Peer-Reviewed Original ResearchAdult careSickle cell diseaseTransition readinessPatient engagementClinician experienceVideogame interventionCell diseaseMedical decisionsYoung adultsDisease-specific knowledgeQuaternary care hospitalYoung SCD patientsSuccessful home managementHigh rateParents/caregiversPain crisisCare hospitalPatient factorsSuccessful disease managementHealthcare utilizationSCD patientsClinical manifestationsEmergency departmentProvider judgmentClinician's perspective“I’d like more options!”: Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis
Toupin-April K, Gaboury I, Proulx L, Huber A, Duffy C, Morgan E, Li L, Stringer E, Connelly M, Weiss J, Gibbon M, Sachs H, Sivakumar A, Sirois A, Sirotich E, Trehan N, Abrahams N, Cohen J, Cavallo S, Hindi T, Ragusa M, Légaré F, Brinkman W, Fortin P, Décary S, Lee R, Gmuca S, Paterson G, Tugwell P, Stinson J. “I’d like more options!”: Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis. Pediatric Rheumatology 2023, 21: 74. PMID: 37491246, PMCID: PMC10369758, DOI: 10.1186/s12969-023-00849-0.Peer-Reviewed Original ResearchConceptsPain management optionsHealth care providersParents/caregiversPain managementIdiopathic arthritisPediatric health care providersBackgroundJuvenile idiopathic arthritisPain management discussionsPediatric rheumatic conditionsOttawa Decision Support FrameworkHealth-related qualityJuvenile idiopathic arthritisQualitative descriptive study designYears of ageDecision support interventionsBetter health outcomesDescriptive study designEvidence-based informationManagement optionsQuality improvement networkRheumatology nursesRheumatology consultationJoint painHCP trainingNonpharmacological approachesThe Impact of COVID-19 on Families With Pediatric Muscular Dystrophy Patients
Zubair A, Scharer K, Lembeck P, Ionita C, Roy B. The Impact of COVID-19 on Families With Pediatric Muscular Dystrophy Patients. Cureus 2023, 15: e41138. PMID: 37519528, PMCID: PMC10386847, DOI: 10.7759/cureus.41138.Peer-Reviewed Original ResearchPediatric patientsCOVID-19 pandemicMuscular dystrophyCoronavirus disease 2019 (COVID-19) pandemicDisease 2019 pandemicParents/caregiversMuscular dystrophy patientsChart reviewCaregiver burdenHome ordersPerson visitsLong-term effectsNeuromuscular conditionsProvider careNeuromuscular disordersPatientsPsychosocial impactDystrophy patientsSchool closuresNeuromuscular disabilitiesMajority of familiesHealthcare servicesSocial distancing measuresCOVID-19Daily activities
2022
Parenting boys with conduct problems and callous-unemotional traits: parent and child perspectives
Roberts R, McCrory E, Joffe H, Phillips H, Gaule A, Viding E. Parenting boys with conduct problems and callous-unemotional traits: parent and child perspectives. European Child & Adolescent Psychiatry 2022, 32: 2547-2555. PMID: 36374342, PMCID: PMC10682176, DOI: 10.1007/s00787-022-02109-0.Peer-Reviewed Original ResearchConceptsCP/HCUCallous-unemotional traitsConduct problemsParents/caregiversTD boysInconsistent disciplineChildren’s perspectivesAlabama Parenting QuestionnaireParenting QuestionnaireChild monitoringMore difficultyLittle researchParentingQualitative reportsFamily engagementParentsSame perceptionCaregiversChild safetyBoysChildrenQualitative methodsDifficultiesExperienceCP intervention
2019
The Lifelong Impact of X-Linked Hypophosphatemia: Results From a Burden of Disease Survey
Skrinar A, Dvorak-Ewell M, Evins A, Macica C, Linglart A, Imel E, Theodore-Oklota C, San Martin J. The Lifelong Impact of X-Linked Hypophosphatemia: Results From a Burden of Disease Survey. Journal Of The Endocrine Society 2019, 3: 1321-1334. PMID: 31259293, PMCID: PMC6595532, DOI: 10.1210/js.2018-00365.Peer-Reviewed Original ResearchPatient-reported outcomesActive vitamin DParents/caregiversVitamin DMean ageExcess fibroblast growth factor 23Joint pain/stiffnessFibroblast growth factor 23Pain/stiffnessGrowth factor 23History of fractureSubstantial disease burdenBurden of diseaseHuman monoclonal antibodyTibia/fibulaAssistive device useSymptom onsetFactor 23Spinal stenosisPhysical functionDisease burdenDisease manifestationsPhysical functioningCurrent treatmentAbnormal gait
2017
Living with conduct problem youth: family functioning and parental perceptions of their child
Roberts R, McCrory E, Joffe H, De Lima N, Viding E. Living with conduct problem youth: family functioning and parental perceptions of their child. European Child & Adolescent Psychiatry 2017, 27: 595-604. PMID: 29204740, PMCID: PMC5945745, DOI: 10.1007/s00787-017-1088-6.Peer-Reviewed Original ResearchConceptsConduct problemsFamily functioningParents/caregiversAffective involvementParental perceptionsConduct problem youthMcMaster Family Assessment DeviceFamily Assessment DeviceParents of childrenTD childrenShallow affectProblem youthFamily interventionsChild behaviorSpecific difficultiesAssessment DeviceFamily rolesExperience differencesMultiple domainsSpecific presentationFunctioningQualitative analysisGood rapportParentsChildren
2014
Effects of the child–perpetrator relationship on mental health outcomes of child abuse: It's (not) all relative
Kiser LJ, Stover CS, Navalta CP, Dorado J, Vogel JM, Abdul-Adil JK, Kim S, Lee RC, Vivrette R, Briggs EC. Effects of the child–perpetrator relationship on mental health outcomes of child abuse: It's (not) all relative. Child Abuse & Neglect 2014, 38: 1083-1093. PMID: 24661693, DOI: 10.1016/j.chiabu.2014.02.017.Peer-Reviewed Original ResearchConceptsPhysical traumaChildren's mental health centerPrimary treatment focusMental health centersParents/caregiversMental health outcomesTrauma onsetClinical evaluationHealth centersOutcome measuresPsychiatric symptomsSevere symptomsBehavior problemsProblem rating scaleClinical practiceHealth outcomesTrauma characteristicsSymptomsRating ScaleTreatment focusTrauma typesTraumaCaregivers resultsInternalizing behavior problemsHigher posttraumatic stress
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