Patient, Caregiver, and Provider Perceptions of Quality Care for Inpatient Sickle Cell Disease Care: A Scoping Review of Qualitative Literature

Background:

The experiences of patients with sickle cell disease (SCD) who receive care in the outpatient and emergency department settings have been well-explored, resulting in the implementation of guidelines ensuring that patients with SCD receive high-quality care in those healthcare settings. However, there remains limited guidance on what constitutes high quality inpatient SCD care despite most patients with SCD of all ages having at least one hospitalization per year. Our overall goal is to use mixed methods scoping review methodology to identify potential inpatient SCD quality of care indicators. The goal of this study is to identify qualitative research examining inpatient SCD care, focusing on the experiences of patients with SCD, their caregivers, and their healthcare providers that should inform inpatient SCD care quality of care indicators.

Methods:

We search seven databases including CINAHL, Embase, PsycINFO, PubMed, Scopus, Web of Science, and World Health Organization for relevant articles using a search algorithm developed by a research librarian. Using an online collaborative software designed for conducting literature reviews, a team of independent reviewers screened the titles and abstracts of 9,938 articles for inclusion, with two reviewers screening each article. Articles were selected for inclusion if they were qualitative in nature and related to the experiences of patients (or their family members/providers) with SCD while admitted to an inpatient service. Articles were excluded if they related to the care of patients with SCD solely within the ED, or if they related to the care of pregnant patients with SCD. We resolved discrepancies by discussion among reviewers, with final decisions on inclusion made by the senior author. We completed full text review of included articles with manual data extraction (Table). We plan to next conduct a thematic analysis by organizing all identified themes from the included articles into sub-themes, which will then be categorized into parent themes as defined by the Donabedian Model. Decisions for clusters of sub-themes will be reached by team consensus.

Results:

Initial literature search retrieved 20,819 studies with removal of 10,906 duplicates (Figure). Of the remaining 9,913 studies that underwent title and abstract review, we identified 186 for inclusion in full text review. Fourty-three studies were included in data extraction, of which only 13 were recent (published between 2013-2023).

The majority of studies explored patient perspectives on inpatient care of SCD (n=31), whereas a smaller number of studies included caregiver (n=12) and healthcare provider (n=10) perspectives. Several studies explored multiple stakeholder perspectives (n=8). Of the studies that explored healthcare provider perspectives, both nurses (n=7) and physicians (n=9) were represented. Only two studies included social workers in their study population, and none included case managers or pharmacists. Of the studies that explored caregiver perspectives, a majority focused on caregivers of children with SCD (n=10), while fewer focused on caregivers of adults with SCD (n=4).

The majority of studies addressed adult SCD care only (n=24), while 11 studies included only pediatric inpatient SCD care. 8 studies included both pediatric and adult patient populations. The most common study locations were the United States (n=25) and the United Kingdom (n=11). Other study locations included Brazil (n=3), Bahrain (n=2), Uganda (n=2), Canada (n=2), Cameroon (n=1), and Jamaica (n=1). Some studies included multiple countries.

Conclusions:

Existing qualitative literature about inpatient SCD care is concentrated on the patient experience. Studies regarding healthcare providers' perspectives primarily included nursing and physician perspectives with a notable absence or underrepresentation of other interdisciplinary team members. It is notable that while African countries have the highest global burden of SCD, only a small number of qualitative studies examined inpatient SCD care in those countries.

In next steps, we will use deductive thematic analysis of extracted qualitative data to identify potential structural, process, and outcome measures for inpatient SCD care from patient, caregiver, and healthcare provider perspectives.