Examining Barriers to Care, Adherence, Quality of Life and Health Outcomes in Pediatric Sickle Cell Disease

Sickle cell disease (SCD) is an inherited genetic disorder that affects approximately 1 outof every 500 African Americans. Managing SCD requires adherence to very specific medicalregimens to ensure positive health outcomes. If we are to improve treatment adherence inpediatric SCD, we must first understand patient and family barriers to care and adherence and therelationship to daily functioning, healthcare utilization, and quality of life.The current study explored barriers to care as it relates to pediatric quality of life,functional disability, healthcare utilization and adherence. The study also sought to determinewhether adherence can be considered a mediator between barriers to care and emergent healthcare utilization and quality of life. Data showed that the families in this study reported fewerbarriers to care as compared to previously researched averages. Additionally, data showed thatbarriers to care did not present a significant relationship to families’ adherence to prescribedclinic appointments or the other health related outcome variables. Data indicated adherence ratesfor patients in this study are within normative ranges for clinic attendance. Adherence did notmediate the relationship between barriers to care and health care utilization or quality of lifeContinued examination of other confounding barriers to adherence may be warranted for theSCD population, as adherence remains an area that needs continued improvement to ensureoptimal health outcomes. Future research is needed to better understand health outcomes inpediatric SCD.

Name thesis:degree_name

PhD

Level thesis:degree_level

doctoral

Discipline thesis:degree_discipline

Arts and Sciences: Psychology

Grantor dc:publisher

University of Cincinnati

Year dc:date

2012

Author dc:creator

• Hines, Janelle

Contributors dc:contributor

• Mitchell, Monica

• Behavioral Sciences
• sickle cell disease
• barriers to care
• adherence

Statement dc:rights

• unrestricted
• This thesis or dissertation is protected by copyright: all rights reserved. It may not be copied or redistributed beyond the terms of applicable copyright laws.

Language dc:language

English

Repository record dc:identifier

http://rave.ohiolink.edu/etdc/view?acc_num=ucin1353950330

OAI identifier oai:identifier

oai:etd.ohiolink.edu:ucin1353950330