Sickle cell disease places a significant burden on health systems in sub-Saharan Africa, including Ghana, where access to high-quality, patient-centred care remains limited. This study evaluated patient-perceived quality of sickle cell disease care at a tertiary-level facility in Ghana and explored process factors influencing perceived quality of care.

Cross-sectional, questionnaire-based study.

A tertiary-level healthcare facility in Accra, Ghana.

A total of 424 individuals with sickle cell disease were recruited using convenience sampling. Data were collected between 4 September and 16 October 2023 using pretested, interviewer-administered questionnaires. First-time clinic attendees and those requiring urgent medical intervention were excluded.

Primary outcome was patient-perceived quality of care. Secondary outcome measures included socio-demographic and process-related factors influencing patient-perceived care quality.

Participants’ ages ranged from 15 to 66 years, with a median (IQR) age of 32 (27–42) years. Most were female (67.4%), had the SS genotype (51.9%) and 68.6% were on hydroxyurea. Overall, 81.8% of respondents reported receiving good-quality care. Predictors of higher perceived care quality included age (adjusted OR (AOR)=8.9, (95% CI 3.3 to 24.3), p=0.001), hydroxyurea use (AOR=2.3, (95% CI 1.2 to 4.2), p=0.008), good health worker-patient communication (AOR=3.2, (95% CI 1.7 to 6.0), p=0.001), positive provider attitudes (AOR=3.1, (95% CI 1.7 to 5.7), p=0.001), receipt of health education (AOR=2.1, (95% CI 1.1 to 3.9), p=0.030) and shorter waiting times for emergency care (AOR=0.2, (95% CI 0.1 to 0.6), p=0.001).

This study provides context-specific evidence on process-level determinants of quality of sickle cell disease care in Ghana. Interventions to improve provider communication, enhance provider attitudes, strengthen patient education and reduce waiting times may improve patient experience and contribute to progress towards Universal Health Coverage in resource-limited settings.

Trauma, obstetric haemorrhage and severe anaemia lead to millions of deaths every year. Many of these deaths occur in regions known as ‘blood deserts’ where there is virtually no access to blood transfusions. A community or civilian walking blood bank (CWBB) is a low-resource strategy that can provide just-in-time, point-of-care tested blood transfusions in blood deserts when banked blood is not readily available and the alternative is almost-certain death. This protocol is designed to evaluate the effectiveness and implementation of a CWBB at Lodwar County Referral Hospital located in a blood desert in rural north-west Kenya.

We will use a mixed-methods approach relying on an implementation science design to evaluate effectiveness, acceptability, applicability and impact of a CWBB. The study will be conducted over 1 year in two parts: pre-emergency and post-emergency transfusion protocol (ETP) implementation. First, a previously developed ETP will be validated and finalised by key hospital stakeholders. Effectiveness will be assessed quantitatively and qualitatively. Prospective laboratory-based data collection will measure changes in blood ordering practices. We expect a sample size of approximately 140 (20/month) unmet blood transfusion requests, with 40 (5/month) of those being emergent (requiring blood in less than 2 hours). These cohorts will be compared pre-implementation and post implementation. Qualitatively, key informant interviews of hospital staff and the community will explore clinical blood demand and general understanding and perceptions about blood donation and transfusion. Lastly, we will determine the adaptability and scalability of a CWBB to other low-resource settings with in-depth interviews and a modified Delphi approach to achieve consensus regarding key components of a CWBB and its transferability to other settings.

Ethical approval was granted by the Strathmore University Institutional Scientific and Ethics Review Committee (SU-ISERC2234/24) and the Mass General Brigham (MGB) Hospital’s Institutional Review Board (#2024P001878; #2024P001879; #2024P001885; #2024P001887). The study team also secured a research licence from the National Commission for Science, Technology and Innovation (#168094) before initiating the study. Interviews will be voluntary and consent will be obtained prior to participation. Blood transfusion consent will be collected as per standard hospital process. The findings will be disseminated through academic publications, conference presentations and workshops, contributing valuable insights into emergency blood transfusion protocols. These findings will also be conveyed to Lodwar County Referral Hospital in order to facilitate quality improvement.

Sickle cell disease (SCD) is one of the most common inherited haemoglobinopathies worldwide and the most prevalent monogenic disorder in the UK. Real-world implementation of existing guidance remains variable particularly in emergency and community settings. The study aims to build national consensus among multidisciplinary stakeholders as a crucial first step towards standardising practice and improving outcomes.

Using a single-round modified Delphi methodology, a Steering Committee of six UK-based specialists identified key domains for discussion and generated 48 consensus statements relevant to the care of patients with SCD. Using a four-point Likert scale, a survey including all statements was disseminated among a wider audience of healthcare professionals (HCPs) to determine agreement. The threshold for agreement was set at ≥75%. Eligible participants for this study included National Health Service (NHS) haematologists (adult or paediatric) and clinical or community nurse specialists from across the UK.

In total, 112 completed surveys were received. Consensus (≥75% agreement) was achieved for 46 of 48 statements (96%), including 32 (67%) that reached ≥90% agreement. The strongest consensus (>95%) was observed in statements emphasising the need for: broader access to specialist clinics and multidisciplinary care, prioritisation of community-based management and prevention of end-organ damage, education of emergency department staff on acute SCD management and improved HCP understanding of the multisystem nature of SCD and its psychosocial impacts. Two statements (S37, S43) did not meet the threshold, both concerning variability in adherence to national guidelines and allocation of dedicated SCD funding.

A modified Delphi consensus achieved national multidisciplinary team expert recommendations to optimise NHS SCD care. These recommendations use expert opinion to clarify priorities, identify resource and education gaps, and aim to standardise practice for consistent, high-level patient care and robust outcome assessment.