PATIENT EXPERIENCES WITH HEALTH CARE TRANSITION IN YOUNG ADULTS WITH SICKLE CELL DISEASE
Author(s)
Gloria N. Odonkor, B.Pharm, MPH, MS1, Jamie C. Barner, PhD1, Hyeun Ah KANG, MEd, MS, RPh, PhD1, Kenneth A. Lawson, BS, MS, PhD1, Titilope Fasipe, MD, PhD2;
1University of Texas at Austin, College of Pharmacy, Austin, TX, USA, 2Baylor College of Medicine/Texas Children’s Hospital, Pediatrics, Houston, TX, USA
1University of Texas at Austin, College of Pharmacy, Austin, TX, USA, 2Baylor College of Medicine/Texas Children’s Hospital, Pediatrics, Houston, TX, USA
OBJECTIVES: Sickle cell disease (SCD) is a rare and severe disorder requiring consistent care. The transition period from pediatric to adult care is a vulnerable and high-risk time for continuity of care. Thus, understanding SCD care transition experiences is critical, especially where challenges exist in attaining optimal adult-provider relationships. This study assessed patient experiences among young adults (YAs) with SCD after transfer to adult care.
METHODS: We employed a prospective, cross-sectional, quantitative research design. Included individuals were diagnosed with SCD, aged 18 to 30 years, and had at least one SCD-related adult health care provider visit. An anonymous online survey using the Picker Patient Experience Transition Survey was used to assess overall quality of care and transition experiences of YAs with SCD after they transferred to adult care. Descriptive statistics were utilized.
RESULTS: Of the 86 respondents (mean age=20.6±2.9), a majority were female (84.8%) and black (90.7%). Patients rated their overall experiences on a scale of 0 (worst) to 10 (best), with a mean score of 6.8±2.4, indicating suboptimal care quality. For each experience domain, the proportions of patient-reported problems from highest to lowest were: transfer planning and involvement (86.1%); access to information, advice, and support (79.1%); experiences with outpatient clinic appointments (77.9%); disease self-management (73.3%); and experiences with inpatient care (53.5%). Themes that emerged from free-text responses included stigma, being labelled as drug addicts, long wait times in the emergency department, lack of empathetic and compassionate providers, and poor access to mental and emotional health support.
CONCLUSIONS: Suboptimal overall patient experiences of YAs with SCD after transfer to adult care highlight areas for quality improvement in the transition process. Patient involvement in treatment, effective and compassionate communication from health care providers, and better organization and care coordination are important in improving the quality of care and experiences of YAs with SCD.
METHODS: We employed a prospective, cross-sectional, quantitative research design. Included individuals were diagnosed with SCD, aged 18 to 30 years, and had at least one SCD-related adult health care provider visit. An anonymous online survey using the Picker Patient Experience Transition Survey was used to assess overall quality of care and transition experiences of YAs with SCD after they transferred to adult care. Descriptive statistics were utilized.
RESULTS: Of the 86 respondents (mean age=20.6±2.9), a majority were female (84.8%) and black (90.7%). Patients rated their overall experiences on a scale of 0 (worst) to 10 (best), with a mean score of 6.8±2.4, indicating suboptimal care quality. For each experience domain, the proportions of patient-reported problems from highest to lowest were: transfer planning and involvement (86.1%); access to information, advice, and support (79.1%); experiences with outpatient clinic appointments (77.9%); disease self-management (73.3%); and experiences with inpatient care (53.5%). Themes that emerged from free-text responses included stigma, being labelled as drug addicts, long wait times in the emergency department, lack of empathetic and compassionate providers, and poor access to mental and emotional health support.
CONCLUSIONS: Suboptimal overall patient experiences of YAs with SCD after transfer to adult care highlight areas for quality improvement in the transition process. Patient involvement in treatment, effective and compassionate communication from health care providers, and better organization and care coordination are important in improving the quality of care and experiences of YAs with SCD.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR25
Topic
Patient-Centered Research
Topic Subcategory
Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Rare & Orphan Diseases, SDC: Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)