Barriers and Facilitators to Pediatric Sickle Cell Specialty Care: An Application of Conceptual Framework of Access to Care Model

Introduction: Routine comprehensive hematological care is critical for children with sickle cell disease (SCD) to prevent or mitigate complications and ensure optimal quality of life. Estimates of children with SCD with missed appointments or lost to care (no visit >1 year) range from 40-65%. Previously identified barriers to care include obstacles framed at the patient and provider levels including: forgetting appointments, competing demands, logistical challenges, health status, dissatisfaction with patient-provider relationships, and adverse clinic experiences. The Conceptual Framework of Access to Care Model proposes that access and engagement in health care involves a complex interaction of health care/systemic and patient/community factors. The purpose of this study was to apply this model to identify barriers and facilitators to SCD specialty care as part of the Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE) project.

Methods: Key informant interviews were conducted with a national sample of patient/caregivers as part of the DISPLACE study. DISPLACE is a large, multi-site study designed to examine stroke prevention practices and identify interventions to improve guideline-informed care. Due to the inclusion criteria for DISPLACE, all participants had sickle cell anemia (SCA) or a child with SCA. Participants were identified using purposive sampling with the goal of data saturation. Interviews included questions pertaining to barriers and facilitators to SCD specialty care, were audio recorded, and transcribed. Qualitative data were analyzed using a deductive-inductive approach with the Conceptual Framework of Access to Care Model as an initial coding framework. Themes were developed according to the theoretical model.

Results: Themes and frequencies are in tables 1 and 2. Participants were 26 caregivers of children/adolescents with SCA (mean age = 39; 21 mothers, 4 fathers, 1 aunt) and one young adult (age 18, female). At the health care/systems level, participants reported a range of facilitators to care, with most factors focused on positive qualities of care provided by hematologists, clinic staff, and the overall health care system (appropriateness of care). The ability of the health care system to be available and accommodate patient needs (availability and accommodation) with supports to schedule, remember, and attend the visit in a convenient and timely way were also noted. At the patient/community level, family experiences with care impacted their ability to perceive a health care need and seek services (ability to perceive and seek). In addition, community supports, such as transportation and social support, helped families obtain care (ability to reach). Additional facilitators included insurance and work supports (ability to pay) and family engagement with SCD-specific education (ability to engage). Fewer barriers were reported by participants. At the health care/systems level, barriers included negative health care experiences (appropriateness) and complex health care processes and clinic location (availability and accommodation). At the patient/community level, participants reported difficulties reaching care due to transportation problems or competing demands (ability to reach) and insurance challenges (ability to pay).

Conclusions: Health care access and engagement is complex and involves multi-level factors. As illustrated by patient perspectives in this study, a range of facilitators at the health care/systems level can promote access and engagement in care. Notably, participants predominantly focused on qualities of the provider and system that positively engaged them in care. At the patient/community level, clinics can provide support to mitigate complex health care processes and social determinants of health that impact care, such as through family navigators, psychosocial supports, transportation resources, and outreach clinics. Limitations included the focus on caregivers, the pediatric setting, and the lack of participants with other subtypes of SCD. In addition, while we attempted to reach participants with a range of health care experiences, our sample likely reflected families who were more adherent. Future work with families lost to care would contribute additional factors that can be targeted to promote consistent specialty care.

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