2025
Qualitative analysis of pain impact in adult patients with X-linked hypophosphatemia
Nishime N, Theriault C, Feinn R, Macica C. Qualitative analysis of pain impact in adult patients with X-linked hypophosphatemia. JBMR Plus 2025, 9: ziaf012. PMID: 40060917, PMCID: PMC11890110, DOI: 10.1093/jbmrpl/ziaf012.Peer-Reviewed Original ResearchHealth-related quality of lifeQuality of lifeDomains of health-related quality of lifePain self-management interventionShort Form Survey InstrumentX-linked hypophosphatemiaEffective pain management strategiesSelf-management interventionsHealthcare providers' lackHealth-related qualityPain management strategiesExperiences of adultsImprove quality of lifeAge-adjusted differencesSemi-structured interviewsPhysical inactivityProviders' lackQualitative analysis of interviewsHealthcare accessPhysical functionImprove carePhysical therapyEmotional burdenSF-36Healthcare services
2024
Perceptions of Care and Perceived Discrimination: A Qualitative Assessment of Adults Living with Sickle Cell Disease
Crusto C, Kaufman J, Harvanek Z, Nelson C, Forray A. Perceptions of Care and Perceived Discrimination: A Qualitative Assessment of Adults Living with Sickle Cell Disease. Journal Of Racial And Ethnic Health Disparities 2024, 12: 3521-3530. PMID: 39227547, DOI: 10.1007/s40615-024-02153-3.Peer-Reviewed Original ResearchSickle cell diseaseHealth care providersExperiences of adultsDiagnosis of sickle cell diseaseExperiences of discriminationAssessment of adultsCare providersExperiences of biasPublic health concernTertiary medical centerThematic analysisFocus groupsPoor communicationCell diseaseOutpatient clinicTeaching hospitalPerceived DiscriminationMedical CenterHealth concernAverage ageParticipantsCareEthnic groupsProvidersHealth
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