2025
Functional Outcomes for Patients With Congenital Anorectal Malformations: A Systematic Review and Evidence-based Guideline From the APSA Outcomes and Evidence Based Practice Committee
Rialon K, Smith C, Rentea R, Acker S, Baird R, Beres A, Chang H, Christison-Lagay E, Diesen D, Englum B, Gonzalez K, Gulack B, Ham P, Huerta C, Kulaylat A, Levene T, Lucas D, Mansfield S, Pennell C, Ricca R, Sulkowski J, Tashiro J, Wakeman D, Yousef Y, Kelley-Quon L, Kawaguchi A, Committee A. Functional Outcomes for Patients With Congenital Anorectal Malformations: A Systematic Review and Evidence-based Guideline From the APSA Outcomes and Evidence Based Practice Committee. Journal Of Pediatric Surgery 2025, 60: 162243. PMID: 40023107, DOI: 10.1016/j.jpedsurg.2025.162243.Peer-Reviewed Original ResearchQuality of lifeSystematic reviewStructured care planFunctional outcomesAnorectal malformationsOptimal patient counselingComplex patient populationTransitional careLevel of evidenceCare planningImprove carePatient transitionsPsychosocial issuesAdult careAmerican Pediatric Surgical Association OutcomesPsychosocial functioningCareConstipation ratePractice CommitteeAnorectal malformation patientsAssociated outcomesCongenital anorectal malformationsMulti-institutional registryPatient counselingLong-term outcomes
2024
Social support dynamics within parent-AYA cancer survivor dyads in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region.
Lewinsohn R, Benedict C, Smith M, Boynton H, Schapira L, Smith S. Social support dynamics within parent-AYA cancer survivor dyads in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region. Journal Of Clinical Oncology 2024, 42: 10071-10071. DOI: 10.1200/jco.2024.42.16_suppl.10071.Peer-Reviewed Original ResearchSource of emotional supportChildhood cancer survivorsCommunity-based organizationsSources of informal supportSocial supportAdolescent/young adultCancer survivorsSocial support dynamicsEmotional supportAYA childhood cancer survivorsFear of recurrenceReducing psychological distressInstrumental social supportYears post-diagnosisPost-traumatic growthInformation supportUnmet emotional needsPopulation of familiesSurvivorship careAYA survivorsSocioeconomic disparitiesPediatric carePsychological distressAdult carePost-diagnosisPerspectives of Adolescents and Young Adults With Sickle Cell Disease and Clinicians on Improving Transition Readiness With a Video Game 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 With a Video Game Intervention. Journal Of Pediatric Hematology/Oncology 2024, 46: e147-e155. PMID: 38237001, DOI: 10.1097/mph.0000000000002810.Peer-Reviewed Original ResearchConceptsVideo game interventionPediatric to adult careOptimize self-efficacyGame interventionPatient engagementSelf-EfficacyAdult careIdentified 4 main themesMedical decisionsImprove transition readinessYoung adultsExperiences of cliniciansQuaternary-care hospitalSickle cell diseaseData saturationTransition readinessMultilevel determinantsSemistructured interviewsClinician experienceHome managementCareInductive analysisCell diseaseDecision-makingIntervention
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 perspectiveHealth literacy correlates with abbreviated full‐scale IQ in adolescent and young adults with sickle cell disease
Bhatt N, Calhoun C, Longoria J, Nwosu C, Howell K, Varughese T, Kang G, Jacola L, Hankins J, King A. Health literacy correlates with abbreviated full‐scale IQ in adolescent and young adults with sickle cell disease. Pediatric Blood & Cancer 2023, 70: e30281. PMID: 36861391, PMCID: PMC10425156, DOI: 10.1002/pbc.30281.Peer-Reviewed Original ResearchConceptsSickle cell diseaseFull-scale intelligence quotientAdequate health literacyHealth literacyCell diseaseNeurocognitive deficitsInadequate health literacyLow health literacyCross-sectional studyDevelopment of interventionsChronic conditionsAdult careHigh school educationSign toolHealth outcomesYounger ageLogistic regressionAge 15Young adultsYoung adulthoodHealthcare decisionsAYAsIntelligence quotientWechsler Abbreviated ScaleDisease
2022
Transitions of Care in Cystic Fibrosis
DeFilippo E, Talwalkar J, Harris Z, Butcher J, Nasr S. Transitions of Care in Cystic Fibrosis. Clinics In Chest Medicine 2022, 43: 757-771. PMID: 36344079, DOI: 10.1016/j.ccm.2022.06.016.Peer-Reviewed Reviews, Practice Guidelines, Standards, and Consensus StatementsRacial and ethnic differences in barriers to care among US adults with chronic inflammatory skin diseases: A cross-sectional study of the All of Us Research Program
Nock MR, Barbieri JS, Krueger LD, Cohen JM. Racial and ethnic differences in barriers to care among US adults with chronic inflammatory skin diseases: A cross-sectional study of the All of Us Research Program. Journal Of The American Academy Of Dermatology 2022, 88: 568-576. PMID: 36244557, DOI: 10.1016/j.jaad.2022.09.054.Peer-Reviewed Original ResearchConceptsChronic inflammatory skin diseaseInflammatory skin diseaseCross-sectional studyHispanic patientsUS adultsSkin diseasesUs Research ProgramEthnic differencesEthnic minority patientsHealth care workforce diversityWhite patientsAdult careMinority patientsMultivariable regressionPatientsDermatologic careCareDiseaseRepresentative sampleAdultsEthnic groupsStructural barriersEthnicityRural areasPrevalence
2021
Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center: A Multilevel Perspective on Barriers, Facilitators, and Future Directions
Calhoun C, Luo L, Baumann AA, Bauer A, Shen E, McKay V, Hooley C, James A, King AA. Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center: A Multilevel Perspective on Barriers, Facilitators, and Future Directions. Journal Of Pediatric Hematology/Oncology 2021, 44: e872-e880. PMID: 35731941, PMCID: PMC9218344, DOI: 10.1097/mph.0000000000002322.Peer-Reviewed Original ResearchConceptsSickle cell diseaseAdult careCell diseaseSCD providersInherited red blood cell disorderIntervention characteristicsYoung adultsDomains of CFIRRed blood cell disordersEmergency department providersBlood cell disordersPain controlImplementation science frameworkLarge hospital systemHigh morbidityAdult clinicEmergency departmentSpecialized careCell disordersMultilevel barriersPatient experienceOuter settingInner settingHealth disparitiesConsolidated Framework
2020
Continued Statural Growth in Older Adolescents and Young Adults With Crohn’s Disease and Ulcerative Colitis Beyond the Time of Expected Growth Plate Closure
Gupta N, Liu C, King E, Sylvester F, Lee D, Boyle B, Trauernicht A, Chen S, Colletti R, Adler J, Ali S, Al-Nimr A, Ayers T, Baron H, Beasley G, Benkov K, Cabrera J, Cho-Dorado M, Dancel L, Di Palma J, Dorsey J, Gulati A, Hellmann J, Higuchi L, Hoffenberg E, Israel E, Jester T, Kiparissi F, Konikoff M, Leibowitz I, Maheshwari A, Moulton D, Moses J, Ogunmola N, Palmadottir J, Pandey A, Pappa H, Pashankar D, Pasternak B, Patel A, Quiros J, Rountree C, Samson C, Sandberg K, Schoen B, Steiner S, Stephens M, Sudel B, Sullivan J, Suskind D, Tomer G, Tung J, Verstraete S. Continued Statural Growth in Older Adolescents and Young Adults With Crohn’s Disease and Ulcerative Colitis Beyond the Time of Expected Growth Plate Closure. Inflammatory Bowel Diseases 2020, 26: 1880-1889. PMID: 31968095, DOI: 10.1093/ibd/izz334.Peer-Reviewed Original ResearchConceptsInflammatory bowel diseaseGrowth plate closureUlcerative colitisCrohn's diseaseAge 15 yearsPlate closureStatural growthHeight gainNutrition Examination SurveyFinal adult heightHeight velocity curvesTotal height gainBowel diseasePediatric patientsExamination SurveyPatient transitionsNational HealthAdult carePatientsDisease statusAdult heightDiseaseYoung adultsGrowth plateRadiographic closure
2019
Neurocognitive Impairment Predicts Poor Transition Outcomes Among Patients with Sickle Cell Disease
Saulsberry A, Partanen M, Porter J, Podila P, Hodges J, King A, Wang W, Zhao X, Kang G, Jacola L, Hankins J. Neurocognitive Impairment Predicts Poor Transition Outcomes Among Patients with Sickle Cell Disease. Blood 2019, 134: 519. DOI: 10.1182/blood-2019-121617.Peer-Reviewed Original ResearchSickle cell diseaseEconomic Hardship IndexSt. Jude Children's Research HospitalLast paediatric visitAdult careFurther clinical developmentResearch HospitalCare retentionAmbulatory servicesPediatric visitsCell diseaseClinical developmentExact testFirst adult visitSickle Cell ResearchPatients' cognitive levelAdult-centered careFisher's exact testLong latency periodWilcoxon rank sum testChi-square testNeurocognitive screening batteryGene therapyRank sum testAgios PharmaceuticalsImplementation of an educational intervention to optimize self‐management and transition readiness in young adults with sickle cell disease
Calhoun CL, Abel RA, Pham HA, Thompson S, King AA. Implementation of an educational intervention to optimize self‐management and transition readiness in young adults with sickle cell disease. Pediatric Blood & Cancer 2019, 66: e27722. PMID: 30907500, PMCID: PMC6529244, DOI: 10.1002/pbc.27722.Peer-Reviewed Original ResearchConceptsSickle cell diseaseTransition readinessEducational handoutAdult careCell diseaseYoung adultsSingle-center studyPeriod of morbiditySelf-management skillsType of interventionPediatric settingStudy coordinatorsHealthcare skillsEducational interventionMultidisciplinary approachBaselineCarePatientsInterventionPostinterventionAreas of deficitDiseaseAdolescentsRegression modelsMost improvement
2018
Understanding Health Knowledge Gaps to Optimize Transitions of Care for Young Adults with Sickle Cell Disease
Calhoun C, Luo L, Baumann A, James A, King A. Understanding Health Knowledge Gaps to Optimize Transitions of Care for Young Adults with Sickle Cell Disease. Blood 2018, 132: 2274. DOI: 10.1182/blood-2018-99-113150.Peer-Reviewed Original ResearchSickle cell diseaseDisease-specific knowledgePatient-provider communicationAdult careYoung adultsOccupational settingsDisease complicationsCell diseaseHealth knowledgeEmergency department providersTransitions of careHealth knowledge gapsQuality of lifeUse of diseaseAfrican AmericansCommon genetic conditionYoung adult periodProphylactic penicillinPneumococcal vaccinationLarge hospital systemHealthcare utilizationSCD patientsHigh morbidityED providersTreatment optionsTransfer is not a transition – voices of Jamaican adolescents with HIV and their health care providers
DeSouza F, Paintsil E, Brown T, Pierre R, Keene D, Kim N, Christie C. Transfer is not a transition – voices of Jamaican adolescents with HIV and their health care providers. AIDS Care 2018, 31: 293-297. PMID: 30345791, PMCID: PMC7224964, DOI: 10.1080/09540121.2018.1533226.Peer-Reviewed Original ResearchConceptsHealth care providersResource-limited settingsPediatric clinicCare providersAdult-centered servicesInductive content analytic approachAntiretroviral therapyAdult careBetter outcomesHIVContent analytic approachClinicJamaican adolescentsAdolescentsSemi-structured interviewsProvidersTherapyCare
2017
Current Healthcare Utilization Patterns and Most Common Reasons for Admission Amongst Patients with Sickle Cell Disease
Calhoun C, Keller M, Olsen M, King A. Current Healthcare Utilization Patterns and Most Common Reasons for Admission Amongst Patients with Sickle Cell Disease. Blood 2017, 130: 866. DOI: 10.1182/blood.v130.suppl_1.866.866.Peer-Reviewed Original ResearchSickle cell diseaseVaso-occlusive crisisSCD patientsState Inpatient DatabasesIndex hospitalizationRespiratory infectionsHealthcare utilizationSCD populationAge groupsAdult careCell diseaseCommon reasonHuman Research Protection OfficeICD-9-CM diagnosis codesICD-9-CM diagnosisUtilization Project State Inpatient DatabasesYoung adult age groupPrimary insurance typeVaso-occlusive episodesAnnual healthcare costsChronic lung diseaseHealthcare utilization patternsHospital resource useYears age groupHigher mortality risk
2016
Implementation of an Educational Intervention to Optimize Self-Management and Transition Readiness in Adolescents with Sickle Cell Disease
Calhoun C, Abel R, Pham H, Thompson S, King A. Implementation of an Educational Intervention to Optimize Self-Management and Transition Readiness in Adolescents with Sickle Cell Disease. Blood 2016, 128: 3536. DOI: 10.1182/blood.v128.22.3536.3536.Peer-Reviewed Original ResearchSickle cell diseaseEducational handoutAdult careCell diseaseTransition readinessSilent cerebral infarctsEnd-organ damageSubsequent clinic visitsEducational interventionHistory of strokeMajority of patientsPediatric hematology clinicYear oldsFormal transition programAge group 13Institutional review boardUniversity Institutional Review BoardCerebral infarctsChart abstractionClinic visitsStandard careIndependent livingHematology clinicMedical managementOrgan damageAchieving Quality Health Services for Adolescents
Adelman W, Braverman P, Alderman E, Breuner C, Levine D, Marcell A, O’Brien R. Achieving Quality Health Services for Adolescents. 2016, 138: e20161347. PMID: 27432849, DOI: 10.1542/peds.2016-1347.Peer-Reviewed Reviews, Practice Guidelines, Standards, and Consensus StatementsUtility of Psychological Screening of Young Adults with Type 1 Diabetes Transitioning to Adult Providers
Quinn SM, Ambrosino JM, Doyle EA, Weyman K, Tamborlane WV, Jastreboff AM. Utility of Psychological Screening of Young Adults with Type 1 Diabetes Transitioning to Adult Providers. Endocrine Practice 2016, 22: 1104-1110. PMID: 27295017, DOI: 10.4158/ep151190.or.Peer-Reviewed Original ResearchConceptsChart reviewEating Problem SurveyDiabetes distressAdditional patientsYoung adultsDepressive symptomsProblem SurveyPoor glycemic controlDiabetes Eating Problem SurveyBody mass indexDiabetes Distress ScalePatient Health QuestionnaireType 1 diabetesTransition clinicGlycemic controlMass indexPHQ-8Formal screeningAdult providersGlycated hemoglobinSymptomatic depressionAdult careHealth QuestionnaireMetabolic controlPatients
2015
Knowledge and perceptions of sexual and reproductive health and HIV among perinatally HIV-infected adolescents in rural China
Mu W, Zhao Y, Khoshnood K, Cheng Y, Sun X, Liu X, Xu W, Wang S, Ma Y, Zhang F. Knowledge and perceptions of sexual and reproductive health and HIV among perinatally HIV-infected adolescents in rural China. AIDS Care 2015, 27: 1137-1142. PMID: 25894204, DOI: 10.1080/09540121.2015.1032206.Peer-Reviewed Original ResearchConceptsHIV knowledgeReproductive healthDescriptive cross-sectional studyRural HIV clinicActive antiretroviral therapyHIV treatment programsMultivariable logistic regressionCross-sectional studyLong-term careAntiretroviral therapyHIV clinicHIV statusMedical visitsSRH servicesAdult careComprehensive carePuberty developmentEarly deathHIVPsychosocial supportTreatment programLogistic regressionVulnerable populationsMore childrenPHIVA
2014
Challenges contributing to disrupted transition from paediatric to adult diabetes care in young adults with Type 1 diabetes
Pyatak E, Sequeira P, Whittemore R, Vigen C, Peters A, Weigensberg M. Challenges contributing to disrupted transition from paediatric to adult diabetes care in young adults with Type 1 diabetes. Diabetic Medicine 2014, 31: 1615-1624. PMID: 24798586, PMCID: PMC4221576, DOI: 10.1111/dme.12485.Peer-Reviewed Original ResearchConceptsType 1 diabetesYoung adultsStressful life circumstancesEmergency department utilizationAdult diabetes careHealthcare system barriersLow socio-economic statusHealth system challengesHistory of lossTransition clinicHigher HbA1cDiabetes careAdult careHigh riskHealth providersSystem barriersHealth outcomesPsychosocial needsSocio-economic statusPsychosocial measuresClinical settingType 1Poor healthDiabetesPsychosocial challenges
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