Process-related determinants of quality of care for individuals with sickle cell disease in a tertiary facility in Ghana

Abstract

Objective

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.

Design

Cross-sectional, questionnaire-based study.

Setting

A tertiary-level healthcare facility in Accra, Ghana.

Participants

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 and secondary outcome measures

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

Results

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).

Conclusion

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.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• The study included a relatively large sample size, enhancing the precision of the estimates.

• The use of multivariable logistic regression enabled adjustment for potential confounding factors, thereby strengthening the validity and robustness of the findings.

• The cross-sectional design limits the ability to establish causal relationships between patient characteristics, process of care factors and perceived quality of care.

• The single-centre tertiary study setting may limit the generalisability of the findings to other healthcare settings, particularly primary and secondary care facilities.

• The use of convenience sampling and self-reported data introduces the potential for selection bias, recall bias and social desirability bias.

Introduction

Sickle cell disease (SCD) affects over 7.74 million people worldwide, and it is associated with chronic pain, organ dysfunction and increased morbidity and mortality.¹ The condition results from a mutation in the beta-globin chain of human haemoglobin and disproportionately affects individuals of African descent. The burden is greatest in low- and middle-income countries (LMICs), with nearly 80% of global cases occurring in sub-Saharan Africa.¹ In Ghana, SCD affects an estimated 2% of newborns annually.² Globally, an estimated 4.6 billion people were living in fragile settings as of 2023, where access to essential health services remains limited.³ In LMICs, up to 15% of all deaths are attributable to poor quality of care.⁴ As countries strive towards Universal Health Coverage (UHC), ensuring equitable access to quality health services without financial hardship has become increasingly urgent.⁴ Quality of care is broadly defined as the extent to which health services for individuals and populations are aligned with evidence-based professional standards and effectively increase the likelihood of achieving desired health outcomes.⁴

Therapeutic advances have significantly improved SCD survival, with over 90% of affected individuals now reaching adulthood and many living into their fifth decade and beyond.⁵ However, the expanding adult SCD population faces complex challenges, including multiorgan system dysfunction, chronic pain and neurocognitive impairment, which reduce productivity and quality of life. Despite improvements in care, many individuals in resource-constrained settings still lack access to optimal services, worsening the multidimensional impact of SCD.⁶ Delivering high-quality, patient-centred care is therefore critical to addressing this burden.⁷ A recent report noted that, despite support from the WHO, global progress in strengthening SCD care remains limited, particularly in LMICs,⁸ further increasing the strain on patients, families and health systems.⁹

Beyond clinical outcomes, patient experience is increasingly recognised as a key determinant of healthcare utilisation, especially in low-resource settings.¹⁰ In LMICs such as Ghana, it is often used as a proxy for healthcare quality, reflecting system responsiveness, accessibility, trust and continuity of care.¹⁰ Patient satisfaction has similarly become a widely accepted measure of healthcare quality globally.¹¹ For chronic conditions like SCD, which require repeated care encounters, assessments of quality must consider patients’ cumulative experiences over time.¹⁰ Perceptions of care quality are shaped by interrelated community, health system and individual factors, all of which influence patient experience.¹² For individuals with SCD who require lifelong, multidisciplinary care, consistent delivery of high-quality, patient-centred services is both essential and potentially lifesaving.¹³

Donabedian’s framework conceptualises healthcare quality in terms of structure, process and outcomes.^{14 15} Among these, process elements, which are the interactions between patients and providers, including diagnosis, treatments, preventative care and patient education, are particularly crucial for chronic disease management.¹⁴ In Ghana, the Ministry of Health identifies affordability, prompt attention, respectful staff attitudes, access to information and essential medicines as critical components of quality of care.¹⁶ International research on SCD highlights several process-related challenges, including poor health worker-patient communication, limited health education, negative provider attitudes, previous unfavourable care experiences and long waiting times.^{13 17–20} However, evidence on these factors in Ghana, particularly at the Ghana Institute of Clinical Genetics (GICG), the country’s leading SCD treatment centre, is limited.²

This study aimed to address this gap by examining process-level factors influencing the quality of SCD care at the GICG. Specifically, it explored the following research questions: (1) What is the level of patient-perceived quality of SCD care? (2) How do individual patient factors relate to perceived quality of SCD care? and (3) Which process factors influence the quality of SCD care? Understanding these dimensions is crucial for identifying barriers to high-quality care and advancing progress toward UHC in Ghana and similar resource-constrained settings.¹⁰

Methods

Study design and setting

The study employed a cross-sectional design with a quantitative approach to collect data for analysis and interpretation. The study was conducted at GICG, situated within the Korle-Bu Teaching Hospital (KBTH), Accra, Ghana. Established in May 1974 under the Ministry of Health, GICG provides comprehensive care for adolescents and adults with SCD, while also promoting education, research and outreach. Operating as an outpatient clinic, GICG is staffed by a multidisciplinary team comprising haematologists, medical officers, nurses, laboratory scientists, nutritionists, pharmacists and administrative staff and offers services from 08:00 to 15:00 on weekdays only.² GICG was selected due to its position as the leading SCD care facility in Ghana, managing the largest SCD population nationwide. The clinic serves clients from all 16 regions of Ghana and neighbouring countries, maintains a registry of over 25 000 patients with SCD and records approximately 10 000 clinical visits annually.²

Study population and sampling

The study population comprised individuals living with SCD and receiving care at GICG. Eligible participants included patients with at least one prior clinic visit in the year preceding data collection and who were present during the study period. First-time clinic attendees and patients requiring urgent medical intervention were excluded. The minimum sample size of 424 was calculated using the precision method, with a 5% margin of error, a 50% estimated outcome proportion and a 10% allowance for non-response.²¹ During the data collection period, 1225 patient visits, involving 886 unique patients, were recorded. Convenience sampling was used to recruit participants during clinic visits until the required sample size of 424 was achieved. All participants who consented to participate completed the questionnaire. Study information was provided in English or the participants’ preferred local language.

Data collection and survey tool

Data were collected from 4 September to 16 October 2023 using a structured interviewer-administered questionnaire, developed by the research team. The questionnaire comprised three sections: Section A captured socio-demographic characteristics, including age, sex, genotype, age at SCD diagnosis, level of education and hydroxyurea use. Section B assessed process-related factors, including provider-patient communication, healthcare provider attitudes, receipt of health education on SCD and waiting times for both general and emergency care. Participants rated the attitudes of health workers (courtesy and respect) and the quality of communication as either ‘poor’ or ‘good’. They also reported the longest times experienced for both general and emergency care in the year preceding the study, with response categories of ‘less than 30 minutes’, ‘30 to 59 minutes’ and ‘60 minutes or more’.

Section C measured patient-reported quality of care, adapting components of the Adult Sickle Cell Quality of Life Measurement survey tool, which has a well-established reliability.¹³ Participants reported how often they were satisfied with emergency and non-emergency care (never to always) and rated overall satisfaction with care received at the clinic within the past year on a scale of 1–10 (extremely dissatisfied to extremely satisfied). Two trained research assistants who were independent of the clinical care team conducted exit interviews in a neutral and confidential manner to reduce the possibility of social desirability biases, with each interview lasting approximately 10–15 min. Participants were approached after receiving care and were provided with a clear explanation of the study objectives, procedures, potential risks and benefits. They were informed that participation was entirely voluntary and that refusal or withdrawal would not affect future care or services they may receive at the clinic. Only participants who provided informed consent were enrolled. No preferential treatment was provided to participants or non-participants.

Data handling and analysis

Data were entered in Microsoft Excel V.2021 (Microsoft, Redmond, Washington, USA). Following data cleaning, analysis was performed using Stata V.17.0 (StataCorp, College Station, Texas, USA). There was no missing data, and all 424 participants were included in the analysis. Descriptive statistics were generated for categorical variables. Participants’ ages were grouped into five categories: <20, 20–29, 30–39, 40–49 and ≥50 years. Quality of care was determined using participants’ overall satisfaction scores. Consistent with methods applied in recent regional studies,^22–24 participants’ overall satisfaction scores were dichotomised using a mean split approach. Due to the absence of a validated threshold for this locally developed instrument, the mean was used as a pragmatic cut-off to classify respondents into relatively lower (‘poor’) and higher (‘good’) satisfaction groups for subsequent analyses. Associations between dependent and independent variables were assessed using Pearson’s χ² and Fisher’s exact tests, as appropriate. Multivariable logistic regression analysis was applied to identify factors independently associated with quality of care and to control for confounding. A p value of <0.05 was considered statistically significant at a 95% CI.

Data quality assurance and ethical considerations

The questionnaire was pretested among 20 patients with SCD at the GICG 1 month prior to data collection and refined based on feedback; these participants were excluded from the main study. Data were anonymised at entry, stored securely and accessed only by study investigators. Administrative permission was granted by GICG management. Participants received a detailed information sheet describing the study’s purpose, potential benefits and risks and were informed of their right to withdraw from the study at any time. Written informed consent was obtained from adult participants (≥18 years), while minors provided informed assent alongside parental or caregiver consent.

Results

Relationship between patient factors (socio-demographic characteristics) and the quality of SCD care

A total of 424 participants completed the questionnaire. The socio-demographic profile of the respondents revealed that the majority (286 (67.4%)) were females. The age range of respondents was 15–66 years, with a median (IQR) age of 32 (27–42) years. The largest proportion (159 (37.5%)) of respondents were aged 20–29 years. More than half (243 (57.3%)) had completed secondary education.

Regarding genotype distribution, (220 (51.9%)) had SS genotype, while (204 (48.1%)) had SC genotype. Furthermore, more than three-quarters (180 (42.4%)) were diagnosed with SCD after age 10 years, and more than two-thirds (289 (68.6%)) used hydroxyurea therapy. There were statistically significant associations between quality of care and the following individual patient factors: age (p=0.001), genotype (p=0.020) and hydroxyurea use (p=0.005) (table 1).

Table 1. Relationship between patient factors (socio-demographic characteristics) and the quality of SCD care.

Variable	Quality of care			P value
	Poor N (%)	Good N (%)	Total N (%)
Age (years)
<20	15 (19.4)	17 (4.9)	32 (7.5)	0.001*†
20–29	19 (24.7)	140 (40.3)	159 (37.5)
30–39	23 (29.9)	79 (22.8)	102 (24.1)
40–49	15 (19.5)	71 (20.5)	86 (20.3)
≥50	5 (6.5)	40 (11.5)	45 (10.6)
Sex
Male	26 (33.8)	112 (32.3)	138 (32.6)	0.800‡
Female	51 (66.2)	235 (67.7)	286 (67.4)
Educational level
None	19 (24.7)	70 (20.2)	89 (21.0)	0.840‡
Primary	7 (9.1)	36 (10.4)	43 (10.1)
Secondary	42 (54.5)	201 (57.9)	243 (57.3)
Tertiary	9 (11.7)	40 (11.5)	49 (11.6)
Genotype
SC	46 (59.7)	158 (45.5)	245 (57.8)	0.020‡†
SS	31 (40.3)	189 (54.5)	179 (42.2)
Hydroxyurea use
No	35 (45.5)	100 (28.8)	135 (31.8)	0.005‡†
Yes	42 (54.5)	247 (71.2)	289 (68.2)

Column percentage

^*Fisher’s exact test.

^†p<0.05.

^‡Pearson’s χ2 test.

SCD, sickle cell disease.

Perception of quality of SCD care

The overall participant satisfaction scores demonstrated a moderate negative skew (skewness=−0.68) and ranged from 4 to 10, with a median score of 8 (IQR 4–10). The mean satisfaction score was 7.8 (SD=1.5), which was used as the cut-off for categorising participants into relatively lower and higher satisfaction groups. Based on this classification, 347 (81.8%) respondents reported higher satisfaction, reflecting good perceived quality of care over the past 12 months, while 77 (18.2%) reported lower satisfaction, reflecting poor perceived quality of care.

Relationship between process factors and the quality of SCD care

Of the 424 respondents, 308 (72.6%) reported good communication with healthcare providers, and 321 (75.7%) experienced positive staff attitudes. Only 185 (43.6%) received health education on SCD during clinical visits. While 275 (64.9%) waited 60 min or more for general care, 340 (80.2%) had less than 30 min wait for emergency care.

There were significant associations between the following process factors and quality of care: provider-patient communication (p=0.002), healthcare provider attitudes (p=0.001), receipt of health education on SCD (p=0.003) and waiting time for emergency care (p=0.001) (table 2).

Table 2. Relationship between process factors and the quality of SCD care.

Variable	Quality of care			P value
	Poor N (%)	Good N (%)	Total N (%)
Health worker-patient communication
Poor	32 (41.6)	84 (24.2)	116 (27.4)	0.002*†
Good	45 (58.4)	263 (75.8)	308 (72.6)
Provider attitudes
Poor	35 (45.5)	68 (19.6)	103 (24.3)	0.001*†
Good	42 (54.5)	279 (80.4)	321 (75.7)
Health education
No	55 (71.4)	184 (53.0)	239 (56.4)	0.003*†
Yes	22 (28.6)	163 (47.0)	185 (43.6)
Waiting time for general care, minutes
<30	15 (19.5)	41 (11.8)	56 (13.2)	0.070*
30–59	11 (14.3)	82 (23.6)	93 (21.9)
≥60	51 (66.2)	224 (64.6)	275 (64.9)
Waiting time for emergency care, minutes
<30	49 (63.6)	291 (83.9)	340 (80.2)	0.001*†
30–59	13 (16.9)	32 (9.2)	45 (10.6)
≥60	15 (19.5)	24 (6.9)	39 (9.2)

Column percentage

^*Pearson χ2 test.

^†p<0.05.

SCD, sickle cell disease.

Factors associated with the quality of SCD care

The multivariate logistic regression analysis identified factors significantly linked to the overall quality of SCD care after adjustment. Among socio-demographic variables, age and hydroxyurea use remained significant predictors. Respondents aged 20–29, 30–39, 40–49 and ≥50 years had notably higher odds of reporting good care compared with those aged <20 years (adjusted OR (AOR)=8.9, (95% CI 3.3 to 24.3), p=0.001). Hydroxyurea users were more than two times as likely to report good care compared with non-users (AOR=2.3, (95% CI 1.2 to 4.2), p=0.008).

Process-related factors also showed significant associations. 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) and receipt of health education on SCD (AOR=2.1, (95% CI 1.1 to 3.9), p=0.030) were significantly associated with perceived quality of care.

Conversely, longer waiting times for emergency care significantly decreased the odds of reporting good quality care. Respondents who waited 30–59 min had 60% lower odds (AOR=0.4, (95% CI 0.2 to 0.8), p=0.020), while those who waited 60 or more minutes had 80% lower odds (AOR=0.2, (95% CI 0.1 to 0.6), p=0.001) compared with those who waited less than 30 min (table 3).

Table 3. Factors influencing the quality of sickle cell disease care.

Variable	Crude OR			Adjusted OR
	OR	P value	95% CI	OR	P value	95% CI
Age (years)
<20	Ref			Ref
20–29	6.5	0.001*	2.8 to 15.1	9.0	0.001*	3.3 to 24.3
30–39	3.0	0.009*	1.3 to 7.0	3.8	0.007*	1.4 to 10.1
40–49	4.2	0.002*	1.7 to 10.2	5.5	0.001*	2.0 to 15.5
≥50	7.1	0.001*	2.2 to 22.5	8.0	0.002*	2.1 to 30.5
Genotype
SC	Ref			Ref
SS	1.8	0.030	1.1 to 2.9	1.5	0.180	0.8 to 2.8
Hydroxyurea use
No	Ref
Yes	2.1	0.005	1.2 to 3.4	2.3	0.008*	1.2 to 4.2
Health worker-patient communication
Poor	Ref			Ref
Good	2.2	0.002*	1.3 to 3.7	3.2	0.001*	1.7 to 6.0
Provider attitudes
Poor	Ref			Ref
Good	3.4	0.001*	2.0 to 5.8	3.1	0.001*	1.7 to 5.7
Health education
No	Ref			Ref
Yes	2.2	0.004*	1.3 to 3.8	2.1	0.030*	1.1 to 3.9
Waiting times for emergency care
<30 min	Ref			Ref
30–59 min	0.4	0.020*	0.2 to 0.8	0.4	0.020*	0.2 to 0.8
≥60 min	0.3	0.001*	0.1 to 0.5	0.2	0.001*	0.1 to 0.6

^*p<0.05.

Discussion

This study provides important insights into the quality of care experienced by individuals living with sickle cell disease, a complex, lifelong condition marked by recurrent acute complications and progressive organ damage. Despite advances in disease-modifying therapies and growing recognition of SCD as a public health priority in LMICs, including Ghana, substantial gaps in care delivery and patient experience persist.²⁵

The present findings contribute to the expanding literature by highlighting key dimensions of quality of care, including access to timely services, continuity of care and patient-provider communication, underscoring that quality extends beyond clinical outcomes to encompass patient-reported experiences and process-level factors. Positive associations between specific care processes and reported outcomes suggest that targeted interventions, such as enhanced provider education and effective health worker-patient communication, may meaningfully improve perceived quality of care. Importantly, this study emphasises the value of incorporating patient perspectives when evaluating healthcare performance in SCD, as traditional clinical metrics alone may not fully capture the burden of disease.

Although patient satisfaction levels are generally low in many LMICs,^{22 24} this study found that about 4 in 5 (81.8%) respondents were satisfied with the care they received at GICG. This finding is consistent with studies in the USA, where satisfaction among patients with SCD ranged from 79% to 87% across various healthcare settings.^{13 26}

Most respondents reported receiving good-quality SCD care. Significant associations were observed between the quality of care and socio-demographic characteristics of respondents, including age and hydroxyurea use. Age emerged as a significant predictor of quality of SCD care, aligning with findings from the USA, where about 9 in 10 individuals with SCD are adults,²⁷ and supporting evidence from Ghana indicating improved survival into adulthood.² The predominance of female patients is consistent with both local and international studies^{2 13} and may reflect gender-based differences in health-seeking behaviours, with females more likely to use healthcare services.²⁸

Although genotype was initially associated with quality of care, the minimal difference between respondents with SS genotype (51.9%) and SC genotype (48.1%) likely explains why this association was not significant in the multivariable analysis. The slight predominance of SS genotype may be attributable to the more severe clinical course of this genotype, which increases the likelihood of healthcare utilisation.⁵ Other studies have reported substantially higher proportions of individuals with SS genotype (64–83.6%), highlighting variability in study populations and care-seeking patterns.^{13 26 27}

Hydroxyurea use was significantly associated with higher perceived quality of SCD care, with users being 2.3 times more likely to report good care. This underscores hydroxyurea’s role as a disease-modifying therapy with well-established benefits, including reduced morbidity, fewer pain crises, improved haemoglobin levels, lower hospitalisation rates and enhanced quality of life.^{8 29 30} Improved access to hydroxyurea through inclusion in Ghana’s National Health Insurance Scheme benefit package may have contributed to improved patient perceptions and improved clinical outcomes.^{31 32} Hydroxyurea uptake (68.6%) in this study was lower than the 83.6% reported in the USA,²⁶ likely reflecting systemic, provider-related and patient-level barriers.^{30 33–35}

Process-related factors were also significantly associated with a higher perceived quality of SCD care. Effective health worker-patient communication, respectful provider attitudes, receipt of health education and shorter waiting time for emergency care all contributed to higher patient-reported quality. Almost three-quarters of respondents reported good communication with healthcare providers, consistent with findings from other global studies.^{13 27} Effective communication, characterised by active listening, empathy and clear explanations, improves satisfaction, adherence, shared decision-making and outcomes.¹⁸

Conversely, communication gaps have frequently been identified as barriers to high-quality care in SCD populations.²⁰ A previous study found that about one-fifth of surveyed participants felt excluded from decisions about their treatment plans, and many expressed a desire for providers to better understand their feelings, experiences and preferences.²⁰ In this study, respondents who reported good communication were 3.2 times more likely to rate their care as good, compared with those who reported poor communication. These findings underscore the vital role of provider-patient interactions in shaping perceived quality of care. Thus, training healthcare workers in communication skills and respectful care provision, especially within the context of chronic disease management, should be prioritised as a strategy to enhance the quality of SCD care in Ghana. In resource-limited settings, where systemic issues may constrain service delivery, strong interpersonal communication becomes even more crucial in bridging care gaps and fostering better health outcomes.

Similarly, positive provider attitudes were associated with a threefold increase in perceived care quality. About three-quarters of respondents reported receiving respectful, courteous and empathetic care, a finding consistent with a similar study in which 76% of patients with SCD perceived their providers’ attitudes positively.²⁷ That study further demonstrated that respectful treatment, acknowledgement of pain and genuine concern were key contributors to more positive care experiences among patients with SCD.²⁷ Stigma, judgemental attitudes and the perception of disbelief during pain episodes have been widely documented as barriers to care for people living with SCD.^{13 17 20} These findings emphasise the critical role of provider attitudes in shaping patient trust, satisfaction and care-seeking behaviour.

Less than half of respondents had received health education on SCD, yet those who did were two times as likely to report good-quality care. Health education empowers individuals to understand their condition, adhere to treatment plans, recognise complications and seek timely care.^{36 37} Strengthening patient education through structured interventions is therefore critical to improving both clinical outcomes and overall care experiences.

Timely care is a widely recognised determinant of patient satisfaction and an established quality of care indicator, particularly in outpatient and emergency settings.^38–41 Although waiting time for general care showed no statistically significant relationship with perceived quality of care, emergency wait times emerged as particularly significant. Most respondents reported receiving emergency care within 30 min, with fewer than 1 in 10 patients waiting for 60 min or longer. This contrasts with findings from other settings where nearly two-thirds of respondents reported waits exceeding 60 min,¹³ and about one-third waited over 120 min for emergency care.²⁷ This suggests that patients at the GICG generally receive prompt emergency care, contributing to more favourable perceptions of the quality of the service. Sustained efforts to minimise emergency wait times will remain essential for improving clinical outcomes and patient experiences, particularly in the management of acute SCD complications.

These study findings have broader implications for Ghana’s National Healthcare Quality Strategy, which seeks to build a coordinated, patient-centred and community-centred health system by sustaining efforts to improve patient safety, enhance satisfaction and integrate patient perspectives into quality improvement initiatives.¹⁶ By highlighting key leverage points for strengthening health service delivery, this study offers actionable insights for clinicians, health administrators and policymakers seeking to reduce disparities and enhance quality of chronic disease care.

Given the large number of individuals registered with the KBTH sickle cell clinic, the emerging PEN-Plus model for non-communicable diseases proposed by the WHO Africa Region⁴² and currently being piloted in Ghana presents an opportunity to improve equitable access to specialised SCD care while maintaining quality. However, achieving meaningful impact will require scale-up beyond pilot implementation, supported by investments in health infrastructure, trained personnel, essential medicines, diagnostics and functional referral systems at participating facilities. Within its hub-and-spoke model, tertiary SCD centres (hubs) could support secondary-level and primary-level facilities (spokes) through provider training, standardised clinical protocols, referral pathways and dissemination of patient education resources. Such an approach could extend essential SCD services to patients’ communities, particularly for those facing geographical or financial barriers to accessing tertiary clinics, while preserving specialist input for complex cases requiring higher-level care.

This study has several important strengths. It addresses process-level determinants of quality of SCD care in Ghana, an underexplored but policy-relevant area. Methodological strengths include a relatively large sample size, a clearly defined sampling approach and the use of multivariable logistic regression to enhance analytical rigour and minimise confounding. By linking patient perceptions to systemic challenges, the study offers important insights into barriers to high-quality SCD care.

Nonetheless, there are limitations. The study was conducted in a single tertiary SCD centre, which may limit generalisability. However, as the largest SCD centre in Ghana with national catchment, findings provide useful system-level insights despite being single-site. The use of convenience sampling and self-reported data may have introduced selection bias, recall bias and social desirability bias. The dichotomisation of the quality-of-care score using the sample mean, although pragmatic and consistent with previous regional studies, may have reduced the statistical power of the study. Additionally, the study did not assess other system-level factors such as staffing capacity, workflow, clinical competence or broader governance structures, all of which may influence the quality of SCD care.

Future research should span multiple SCD centres, including secondary and primary-level facilities, to improve representativeness and capture variations in access and quality of care across different healthcare settings. Future studies should also consider strategies to include patients who attend tertiary SCD services less frequently, as they may experience unique barriers to accessing specialist care. Additionally, incorporating measures of geographical access, such as distance to the care centre, travel time and transportation-related costs, would provide further insight into structural barriers affecting utilisation of specialised SCD services. Mixed-methods approaches, clinical outcome measures and provider perspectives should also be incorporated to validate and extend these findings. Such work will support the development of more comprehensive, evidence-based strategies to enhance the quality of SCD care in Ghana.

Conclusion

A high proportion of respondents reported good quality of care, suggesting that the GICG largely meets patients’ expectations. Both individual characteristics and process-related factors significantly influence the quality of SCD care. Effective provider-patient communication, respectful provider attitudes, receipt of health education and shorter waiting times for emergency care were significantly associated with higher patient-reported quality of care. These findings highlight the importance of patient-centred care, stigma reduction and continuous quality improvement as essential components of high-performing SCD services. Strengthening these domains is critical for improving health outcomes and enhancing the care experiences of individuals living with SCD in Ghana and similar resource-limited settings.

Data availability statement

Data are available upon reasonable request.