Improving Access to Healthcare for Pediatric Sickle Cell Disease Patients and Their Families
Authors: Houwing Maite E. , Buddenbaum Marit , Verheul Thijs C.J. , de Pagter Anne P.J. , Hazelzet Jan A , Cnossen Marjon H. 
Published: November 2019

Introduction
Sickle cell disease (SCD) is a severe inherited red blood cell disorder with high morbidity requiring integrated comprehensive care. There are not many chronic diseases that primarily affect those from an often impoverished, minority background. Care delivery is complicated by disparities in healthcare regarding access. Cultural mismatches between providers and families also play a role. Healthcare access can be defined as the degree of fit between patients and the healthcare system (1, 2), and is described by four overlapping dimensions: physical accessibility, affordability, information accessibility and non-discrimination (3, 4). This qualitative study focuses on the challenges regarding the right to healthcare for children and adolescents with SCD and their families. The aims of this study were to (a) map the various perspectives and initiatives of SCD healthcare professionals, while focusing on existing best practices and lessons learned and (b) to provide practical recommendations relevant for high-income countries to improve accessibility of healthcare in SCD.
Methods
This qualitative study consisted of semi-structured, in-depth interviews which were conducted from February 1st to May 1st 2019 with SCD healthcare professionals, including (pediatric) hematologists, nurses, and psychosocial staff. Participants were affiliated with the SCORE (Sickle Cell Outcome REsearch) consortium which includes all SCD comprehensive care centers in the Netherlands (Fig 1). We identified eligible participants within SCORE and recruited participants using a combination of maximum variation and snowball sampling. Interviews occurred privately and were audio-recorded. The audio-recordings were transcribed verbatim and analyzed using the NVivoâ qualitative analysis software.
Results
Twenty-four healthcare professionals from different clinical sites participated in the study (Fig 1). Transcripts were coded into the four dimensions of health care access. Content analyses of the four dimensions in turn, revealed seven themes associated with best practices on topics related to improving accessibility of health care for children and adolescent SCD patients and their families (Fig 2). These themes included: 1) Cutting invisible costs: addressing the financial burden of a child with SCD; 2) Same-day appointments: reducing the amount of hospital visits; 3) Specialized and shared care: bridging the gap; 4) Optimizing methods of verbal and written communication: enabling mutual understanding between patients and healthcare professionals; 5) Building strong digital connections: improving the use of e-health while watching out for pitfalls; 6) Tools for patient empowerment and resilience: being aware of (self) stigmatization; and 7) Changing society: towards compassion and public awareness.
Discussion
The United Nations Convention on The Rights of the Child is the most widely signed and ratified human rights treaty and safeguards the right of the child to the enjoyment of the highest attainable standard of health. This right must be interpreted broadly, paying attention to all factors that may affect the realization of this right (5). Equity of access to healthcare for all patient populations requires the appreciation of intersecting vulnerabilities. This qualitative study provides best practices and solution-based recommendations from a grassroots-level to improve access to healthcare for children and adolescents with SCD and their families. Healthcare professionals experience a unique combination of intersecting vulnerabilities that characterize SCD patients and hampers their overall access to necessary healthcare. The seven key recommendations address these obstacles across all four dimensions of accessibility. Holistic implementation would positively impact the access to the highest attainable standard of healthcare for pediatric SCD patients and their families. These recommendations are built on local best practices that deserve wider implementation. They are especially relevant in the organization of SCD care, but all physicians will recognize these experiences with regard to healthcare in vulnerable patient populations in general.

Disclosures
Cnossen: Pfizer: Other: Travel Grants, Research Funding; Bayer: Other: Travel Grants, Research Funding; Novo Nordisk: Research Funding; Nordic Pharma: Research Funding; CSL Behring: Other: Travel Grants, Research Funding; Sobi: Research Funding; Baxter: Other: Travel Grants, Research Funding; Shire: Other: Travel Grants, Research Funding; Takeda: Other: Travel Grants, Research Funding; Roche: Other: Travel Grants; NWO: Other: Governmental grants , ZonMW, Innovation fund and Nationale Wetenschapsagenda 2018.