Article Text

Original research
Non-communicable disease care in Sierra Leone: a mixed-methods study of the drivers and barriers to retention in care for hypertension
  1. Yusupha Dibba1,2,
  2. Chiyembekezo Kachimanga1,
  3. Joseph Gassimu1,
  4. Alexandra V Kulinkina1,3,
  5. Gene Bukhman2,4,
  6. Hannah N Gilbert2,
  7. Alma J Adler2,5,
  8. Joia S Mukherjee2,6
  1. 1Clinical, Partners In Health, Freetown, Kono, Sierra Leone
  2. 2Harvard Medical School Blavatnik Institute, Boston, Massachusetts, USA
  3. 3Swiss Tropical and Public Health Institute, Allschwil Switzerland, Basel, Switzerland
  4. 4Center for Integration Science, Brigham and Women’s Hospital, Boston, MA, USA
  5. 5Division of Global Health Equity, Brigham and Women's Hospital, Boston, Massachusetts, USA
  6. 6Clinical, Partners In Health, Boston, Massachusetts, USA
  1. Correspondence to Dr Yusupha Dibba; ydibba{at}pih.org

Abstract

Objective To retrospectively analyse routinely collected data on the drivers and barriers to retention in chronic care for patients with hypertension in the Kono District of Sierra Leone.

Design Convergent mixed-methods study.

Setting Koidu Government Hospital, a secondary-level hospital in Kono District.

Participants We conducted a descriptive analysis of key variables for 1628 patients with hypertension attending the non-communicable disease (NCD) clinic between February 2018 and August 2019 and qualitative interviews with 21 patients and 7 staff to assess factors shaping patients’ retention in care at the clinic.

Outcomes Three mutually exclusive outcomes were defined for the study period: adherence to the treatment protocol (attending >80% of scheduled visits); loss-to-follow-up (LTFU) (consecutive 6 months of missed appointments) and engaged in (but not fully adherent) with treatment (<80% attendance).

Results 57% of patients were adherent, 20% were engaged in treatment and 22% were LTFU. At enrolment, in the unadjusted variables, patients with higher systolic and diastolic blood pressures had better adherence than those with lower blood pressures (OR 1.005, 95% CI 1.002 to 1.009, p=0.004 and OR 1.008, 95% CI 1.004 to 1.012, p<0.001, respectively). After adjustment, there were 14% lower odds of adherence to appointments associated with a 1 month increase in duration in care (OR 0.862, 95% CI 0.801 to 0.927, p<0.001). Qualitative findings highlighted the following drivers for retention in care: high-quality education sessions, free medications and good interpersonal interactions. Challenges to seeking care included long wait times, transport costs and misunderstanding of the long-term requirement for hypertension care.

Conclusion Free medications, high-quality services and health education may be effective ways of helping NCD patients stay engaged in care. Facility and socioeconomic factors can pose challenges to retention in care.

  • hypertension
  • patient satisfaction
  • blood pressure
  • health services accessibility
  • health equity
  • quality in health care

Data availability statement

Data are available on reasonable request.

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STRENGTHS AND LIMITATIONS OF THIS STUDY

  • The study is the largest study done in Sierra Leone, comprising one of the largest cohorts of hypertension patients in a very large non-communicable disease clinic, looking at care-seeking behaviours.

  • For the quantitative analysis, we relied on routine clinic data; as such, the quality and completeness of data depended on the healthcare workers providing care in the clinic.

  • For predictors of adherence, we were not able to include other predictors that might influence adherence to clinic appointments, such as a patient’s financial income and educational level, which were not recorded in the clinic charts.

Introduction

Non-communicable diseases (NCDs) are the leading cause of morbidity and mortality in poor and vulnerable populations.1 2 Up to 70% of global deaths are due to NCDs, with 80% of the deaths occurring in low-income and middle-income countries (LMICs).3 4 In 2010, hypertension was reported as a leading contributing factor to the global burden of disease (GBD), with 14% of all deaths attributable to the consequences of hypertension occurring in LMICs. The risk of dying from consequences of hypertension in an LMIC is double the risk of death due to the consequences of hypertension in high-income countries.5

Amid the high burden of hypertension in the LMICs, the awareness of and access to treatment for hypertension is low. A review of 17 LMICs indicated only 46.5% of people with hypertension were aware of their status, and that rate decreased to 31.2% in rural regions.6 In Sierra Leone, the prevalence of hypertension was estimated at 22% in a 2021 study. Among those with hypertension, 23% were diagnosed, 11% were treated and only 5% had controlled blood pressure (BP).7

Health systems in LMICs historically were focused on prevention and population-wide interventions.8 With the advent of HIV care and a focus on health systems strengthening,9 10 longitudinal care became more feasible.11 Yet, in much of Sierra Leone, general outpatient care is structured as acute care for episodic illness and is not structured to provide the longitudinal care that NCD patients require. The situation was made worse during the 2014–2016 Ebola outbreak in Sierra Leone when patients’ confidence in the safety of health facilities declined, leading to a further decline in longitudinal care services.12 13

As the world commits to Universal Health Coverage to meet the 2030 United Nations Sustainable Development Goals, maintaining patients on lifelong treatment for hypertension is critical to decrease morbidity due to stroke, heart disease and kidney failure, and to improving life expectancy. Effective programme design for longitudinal care programmes demands attention to and mitigation of barriers to patient adherence and an understanding of what elements of a programme can best support maintaining patients in long-term care.

This study seeks to measure adherence to NCD care over a 1-year period and to describe the factors that enable or limit patients’ access to care for hypertension. Here, we describe the results of a mixed-methods study examining drivers of and barriers to retention in care of patients with hypertension at the new NCD clinic of Koidu Government Hospital (KGH), in Kono District, Sierra Leone.

Methods

Study setting

KGH is the only secondary-level referral hospital in Kono, serving a catchment area of 506 100 people.14 It has a total bed capacity of 200 with an annual admission rate of 8000 patients. Since 2018, KGH has a structured NCD clinic offering free care for patients with hypertension. It is run by the Ministry of Health and Sanitation and supported by the non-profit healthcare organisation called Partners In Health. The patients are referred from the general outpatient clinic and medical and other wards at KGH. Once the patients are referred, they are registered, undergo diagnostic testing and are provided with longitudinal care as well as educational sessions, all at no cost. At the time of the study, the clinic provided longitudinal care for patients with hypertension and diabetes, with other NCDs added over time. This clinic was the only free and structured NCD clinic in Kono District. At the time, we were not aware of any clinic providing free longitudinal care in a rural secondary care facility, as structured NCD clinics were only available at tertiary facilities, and few selected urban facilities and the care was provided at a cost according to government policies. The clinic care model and operation have been documented in our previous work.15

Study design

We conducted a convergent mixed-methods study to assess adherence to clinical protocol for NCDs and analyse the drivers of and barriers to adherence to clinic appointments among patients with hypertension enrolled in care at the NCD clinic between February 2018 (when the clinic opened) and August 2019.

Quantitative data collection

We conducted a retrospective cross-sectional study of routinely collected data for all the patients with hypertension who were seen in the NCD clinic during the study period. We included both new patients who were diagnosed and started on treatment during the study period and patients who were normotensive on antihypertensive medication during their enrolment. The patient’s charts were reviewed to extract the variables of interest.

The variables of interest in this study are listed in table 1. Data were collected from unstructured patient charts, and the cross-sectional data collection was done between October and December of 2019. The way these variables were measured were protocol based.

Table 1

Variables of interest (at enrolment)

Quantitative data analysis

Discrete demographic data were collected by the frequency of occurrence in the cohort. For characteristics captured with continuous variables, means and standard deviations (SD) were calculated. We used patients’ fidelity to the prescribed clinical schedule as a proxy for adherence to medications. Most patients received monthly appointments initially, but after a couple of months (usually until after 6 months) and depending on BP control, some patients received 2–3 monthly appointments. Adherence to clinic visits was defined as attending 80% or more of scheduled appointments over the study period. Loss-to-follow-up (LTFU) was defined as consecutively missing appointments for 6 months. Patients who attended <80% of clinic appointments but not LTFU were considered engaged in the clinic but not adherent to the prescribed regimen of care. Sociodemographic and clinical characteristics were summarised by adherence category. For univariate logistic regression analyses, associations of sociodemographic and clinical characteristics with adherence were reflected in ORs, 95% CIs and p values. Multivariable logistic regression was also conducted.

Analysis was undertaken in Stata IC V.16.0.

Qualitative data collection

We conducted 28 semi-structured individual interviews with participants from three populations: 13 adherent patients, 8 LTFU patients and 7 clinic staff. Patients were purposefully sampled to ensure variation of age, sex and length of time enrolled in care, and the sample size was based on the saturation of data.16 No participant refused or dropped out.

Following informed consent, interviews took place in a quiet, confidential place of the participant’s choosing, averaged 60–90 min and were audio-recorded with permission. YD (male), who was a master’s student conducted all interviews in Sierra Leonean Krio (patients) or English (staff), using a semi-structured patient interview guide (online supplemental file 1) and staff interview guide (online supplemental file 2). The topics discussed are listed in table 2. Participants were not compensated for the interview, but transportation cost was refunded to those who had incurred cost going to the interview meeting place. There were no repeat interviews, or another session with participants.

Table 2

Topics covered in the interview guide

Qualitative data analysis

All interviews were transcribed and, where necessary, translated into English by a trained research assistant. The qualitative dataset was reviewed and analysed using an inductive, thematic, conventional content analysis approach.17 Following a complete review, a subset of transcripts was open coded to identify relevant content, which was named, and described to generate an initial set of codes. Codes were reviewed with HNG, refined and formulated into a final codebook, which was used to code the entire dataset, using the qualitative software package Dedoose.

Using an inductive approach, coded data were examined and an initial set of descriptive categories were developed.18 Using an iterative approach, initial categories were reviewed with HNG and AJA, refined and updated with added details. Categories were labelled, described and supported with evidence drawn from interview transcripts.

Reflexivity

YD reviewed transcripts for accuracy. YD is an international staff who worked at the clinic and was one of the founding clinical staff of the clinic. He knows the clinic systems and the local context of the healthcare services in Sierra Leone.

Mixed methods

After quantitative and qualitative data analyses, findings were merged. We examined similarities and differences in factors associated with adherence and LTFU from quantitative and qualitative analyses.19

Patient and public involvement

Patients and the public were not involved in the design or conduct of the study. However, there are plans to disseminate the study results to the clinic staff and stakeholders at national and district levels, as well as in national and international conferences.

Results

Quantitative results

From February 2018 to August 2019, 1628 patients with hypertension were enrolled in the study. The age ranged from 12 to 100 years, with a mean and SD of 54.8 and 15.2 years, respectively. Thirty-eight per cent of participants were over 60 years of age, and 8% were under 40 years. The majority of the patients were females (63.2%) (table 3).

Table 3

Sociodemographic and clinical characteristics of patients with hypertension receiving healthcare at the NCD clinic at KGH, Kono District, in 2018/2019 (n=1628)

Mean systolic BP (SBP) and diastolic BP (DBP) at enrolment were 170.6 mm Hg and 104 mm Hg, respectively. Mean body mass index was 28.0 kg/m2 with 999 patients (61.3%) being overweight or obese, and 56 patients (3.4%) being underweight (table 3). When adherence, engagement and lost to follow-up were measured against the definitions of the study, over half the population (n=924, 56.8%) were adherent, 19.6% (n=319) were engaged and 21.7% (n=353) were LTFU (table 3). Two-hundred people (12.3%) had comorbidities of whom 56 (8.0% of the total cohort) had diabetes (online supplemental file 3).

We identified a positive association between higher SBP and DBP at enrolment and adherence to clinic appointments, in the unadjusted variables (OR 1.005, 95% CI 1.002 to 1.009, p=0.004; OR 1.008, 95% CI 1.004 to 1.012, p<0.001, respectively) (online supplemental file 4). The odds of adherence to clinic appointments were 1.75 times higher when a patient had stage 3 hypertension at enrolment (OR 1.753, 95% CI 1.184 to 2.589, p=0.005) as compared with patients whose BP was under control (online supplemental file 4). Comorbidities were not associated with adherence to clinic appointments at intake (OR 0.959, 95% CI 0.557 to 1.648, p=0.876). No other characteristics were associated with adherence to clinic appointments (table 4).

Table 4

Univariate and multivariate (adjusted) logistic regression analysis results of the variables showing the association between adherence to chronic care of the patients with hypertension receiving care at the NCD clinic at KGH with some of their demographic and health variables (n=770)

We found a decrement in adherence with time, however. There were 14% lower odds of adherence to appointments associated with each month increase in duration in care (OR 0.862, 95% CI 0.801 to 0.927, p<0.001), in the adjusted variables, suggesting that the longer patients stay in the NCD programme, the less adherent they were to clinic appointments (table 4).

Qualitative results

Participant characteristics

Most interviewed participants were aged between 40 and 60 years. There were more female than male participants. Few patients had monthly-paid jobs and most were either working in the informal sector or unemployed. The demographic characteristics of patients in the qualitative study is found in online supplemental file 5.

Presentation of categories/themes

Themes identified in the study are presented in table 5. Qualitative findings identified key barriers and drivers to remaining in care at the NCD clinic (categories A and B). The final category (C) describes key barriers that patients who are LTFU face in returning to care.

Table 5

Qualitative analysis in themes

Drivers to remaining in care: patient satisfaction

Interpersonal interactions

Study participants valued the cordial relationships they had with clinicians, and those relationships increased their comfort at the clinic. Participants described key behaviours of clinicians and staff that fostered these positive relationships. Notably, clinicians at the NCD clinic spoke to patients in a manner perceived as caring and respectful. Instead of shouting at patients, the staff used regular, gentle voices:

I sincerely like the clinic for one specific reason: when I am at the clinic, no one shouts at me or embarrasses me. I like the kind attitude of staff at the clinic. (Adherent patient, male, aged >60 years)

Feeling comfortable around clinicians helped patients talk openly about their condition, which helped them to see themselves as partners in their hypertension management. Clinicians did not simply tell patients what to do; they asked them questions about their unique needs and struggles, transforming clinic consultations into ‘two-way streets’. Patients noted that clinicians gave them time to share their concerns and tailored subsequent recommendations to their specific needs.

I like the way doctors interview you to know the appropriate medicine to prescribe for you. When they prescribe the medicines, they tell you to let them know in your next visit if the medicines [have] any effects on you. (Adherent patient, male, aged >60 years)

Patients noted that clinic staff’s demeanour helped them overcome feelings of disease-associated distress. In addition to delivering physical care, patients noted that staff attended to their emotional well-being. If they arrived at the clinic feeling distressed, the clinic staff would try to cheer them up with reassurance or even jokes.

When I come to clinic, all the nurses see me as their grandfather, and when I am feeling bad, they would have fun [joke] with me until I feel happy. They encourage me a lot. (Adherent patient, male, aged >60 years)

Health education sessions

Many patients praised the health education provided during clinic visits. Some patients who could afford to purchase their medications elsewhere chose to attend clinic because of the advice provided during clinic health talks. Health talks provided specific advice on managing lifestyle challenges in a way that enabled patient self-management.

I want them to continue giving us medicines with the usual health talk. They should keep advising us on what or what not to eat… on the expected lifestyle of a pressure patient.

Having these sensitisations helps. It’s not only medicine that helps control our pressure. (Adherent patient, female, aged 40–60 years)

I like going to the clinic because it is like a school [for] us. If you do not come to school, you will not be educated. So, when we come to the clinic, we are educated about our pressure and advised on what and what not to do. This helps us a lot. (Adherent patient, male, aged >60 years)

Free medications

For some patients, the clinic was the only place to obtain free medication. Patients explained that while antihypertensive medications could be purchased at other pharmacy outlets, they lacked sufficient money to purchase them. Patients prioritised attending the clinic, and were willing to walk long distances, and endure long wait times at the clinic to obtain free medication.

It is sometimes difficult to afford transportation; therefore, I sometimes have to walk. I live far from the clinic, so I need to walk long distances to the clinic just to have free medication. But I think whatever way, it is worth it to access the clinic because all that we will be given at the clinic is free of cost. (Adherent patient, female, aged 40–60 years)

As for the NCD pharmacy, where we are being provided free medication, you have to wait for [a] long time before being attended to. I know that being at the clinic for the rest of the day is frustrating, but we have no option. We will stay to have our free medications. (Adherent patient, male, aged 40–60 years)

Several months’ supply of medication

While participants had to wait in long queues to receive their medications, they were pleased with the supply of medication that they received. The 3-month supply provided during a single clinic visit was an important reason for overcoming obstacles.

Yes, for the rest of the day we will have to be there at the pharmacy. One day, we were there until 4 pm. I was very angry, and I even said I [would] not come again after waiting so long. But when it was time to receive the medications, they gave me plenty of medication. That made me happy and…looking at the plenty of medicines given to me, while going home, I was happy. (Adherent patient, male, aged >60 years)

I normally pay three thousand Leones (USD 0.3) [to travel] from my residence to the clinic… The medicines given to us are free, and they give us plenty of medicines…. they give us medicines that will last us up to three months before returning. (Adherent patient, male, aged >60 years)

Good health

Ultimately, the reason participants sought care at the clinic was to ensure improved health and functioning. Good health motivated them to adhere to their follow-up visits:

I do not see anything that will make me miss my appointment. I want to continue having good health and long life, so that is the more reason why I do not joke with my follow-up date. (Adherent patient, male, aged >60 years)

Challenges to remaining in care

Long wait times

Participants faced long wait times at the clinic. They left their homes early in the morning and often had to spend the whole day at the clinic. This posed a significant challenge for many, and they often had to go without food. Wait times were attributed to insufficient staffing, which some patients attributed to the widespread need for free hypertension care.

I have already mentioned the challenges, particularly the duration of the clinic, the time frame is too long. Imagine people coming early without eating anything; they would have to buy food here while waiting. They just think if they come early, they would have to return early, only for them to be here for the rest of the day. …that is why I said they should increase the staffing so that they will be able to attend to patients quickly. (LTFU patient, male, aged >60 years)

Long wait times meant that patients were often unable to work on a clinic day. A loss of a days was particularly challenging for daily wage earners, who had to choose between earning their wage—sometimes even feeding their family—or attending their clinic visit.

When I sell my agricultural produce, people would come buying. The sum of money that I would raise from those sales of my produce is what I use for food and my children’s lunch. If I visit the clinic, some of my customers might come, and they will not buy because I am not around. (LTFU patient, male, aged >60 years)

My job is another factor stopping me from coming here continuously because most of my work schedule coincides with my follow-up dates. The only time that I do forgo my work for my follow up is when I am feeling sick. As long as I am feeling okay, I won’t leave my job to attend the clinic because my job is important to me. (LTFU patient, male, aged 40–60 years)

Transportation costs

Transportation costs made it difficult for some to attend clinic appointments. This was particularly challenging for patients who could not walk to the clinic—either because they lived far, or because their age or illness prevented them from walking.

One thing I will like you to know is that our people living in the villages can’t afford transportation costs to come here to access this facility. (LTFU patient, male, aged 40–60 years)

One thing is the transport cost, you see…We, the old men, are challenged with transportation fees. We are also unable to walk a long distance like the younger ones. (LTFU patient, male, aged >60 years)

Misunderstanding the long-term management of hypertension

Several patients noted that they would not seek care when they were asymptomatic. While ongoing health education at the clinic addressed this topic, several patients in the study linked clinic attendance with clinical symptoms.

I never knew you should continue taking the drugs, even if you got better. I just felt that if the pressure gets normal, then the drugs should be stopped. If I knew that the treatment was life-long, I would not have skipped my visits, and I would continue fighting my way to the clinic. (LTFU patient, male, aged 40–60 years)

Everybody is hoping to always have good health. I’m not thinking of coming back again [to the clinic], and that has been my prayer, that nothing bad would happen for me to have to return. If my pressure becomes worse, I will be left with no choice but to come back. So, I am praying to God for that not to happen. (LTFU patient, male, aged 40–60 years)

Challenges to returning to care: compounding effects of a missed appointment

When participants missed an appointment, they described feeling ashamed because they failed to fulfil provider’s expectations. This shame at having missed their appointment—in some cases by several months—gave way to fear and concern of negative repercussions if they returned to the clinic, such as withholding medication.

I had one patient at the NCD—I can remember him, yeah! We gave him an appointment in two months, and he was gone for like four months—without medications. His medications got finished. One night, he called me, saying [I] really am afraid to come to the clinic. So, I asked him what went wrong. He explained that the date given to him has passed. (Staff, male, aged <40 years)

When the 20th reaches, I will come. If that 20th passed, I fail to come because they will not agree to give me medicines. (Adherent patient, female, aged <40 years)

According to clinic protocol, patients who have missed appointments will only be seen after regularly scheduled patients. Patients with missed appointments were segregated from other patients and were subjected to long wait times. Participants perceived this as a punishment, and felt frustration and anger:

For some of the patient after missing their appointment for long time, they would be the first person to come on a clinic day. We would meet them quietly sitting down holding on to their appointment cards. But we tell them that they would only be seen after attending to those that have their appointment dates fall on that date. Some of them are annoyed about that. (Staff, aged <40 years)

Some patients who had disengaged for longer periods of time feared that clinic protocols might have changed during their absence, and they worried about being lost in the new system:

Since it has been a while away from the clinic, I seem to be scared a bit because I don’t know what the current systems in place at the clinic has been…I actually don’t know what the current systems in place that is making me scared of coming back to the clinic. (LTFU patient, male, aged 40–60 years)

Discussion

Summary of key findings

Our study found that increases in SBP and DBP and stage 3 hypertension at enrolment were associated with better adherence to clinic visits than patients with lower BP. Individuals enrolled longer in the NCD care programme had reduced adherence to clinic appointments with time. No demographic variables were associated with adherence or loss to follow-up in our study. Women made up 62.3% of our study population.

The qualitative interviews help us understand challenges patients faced accessing care. These include clinic-based challenges, such as staffing and clinic organisation, as well as broader socio-economic and structural challenges including lost revenue, transportation costs and fulfilment of social responsibilities. Despite widespread satisfaction with the quality of care received at the clinic, these challenges make it difficult for patients to return for their clinic appointments, pitting clinic attendance against patients’ ability to fulfil key social and financial responsibilities.

In our qualitative findings, participants highlighted several reasons for regularly attending clinic. Some of these factors relate to patient satisfaction with care and good clinical outcomes. We also identified mechanisms that explained why patients who had missed an appointment were reluctant to re-engage in care including fear, extra-long wait-times and feeling judged. The clinic staff highlighted that some of the challenges patients have result from the clinic expansion, due to the increased utilisation of the care being provided. Finally, our qualitative findings indicated that patients appreciated learning about overall lifestyle modification. However, we also identified a key misunderstanding that patients did not realise that long-term clinical management of their hypertension was required once BP was controlled.

Comparison with other studies

Our study reported a comparative low LTFU rate of 22%. A recent study from Ghana reported an LTFU rate of 53% among the 1339 participants enrolled in the study.20 Another study in Kenya reported a 31% LTFU among 1465 patients with hypertension or diabetes in a study in three primary care clinics in Kibera.21

Our qualitative findings suggest that the provision of high-quality care, free medications, regular health education and a satisfying patient experience of care contributed to a low LTFU rate, and that concerns about repercussions and unfavourable clinic protocols may explain why patients who missed appointments are not returning to care. A qualitative study examining disengagement from an HIV treatment and care programme in Nigeria, Tanzania and Uganda, similarly reported that patients were reluctant to return to care after missing appointments because they felt a sense of shame, and were apprehensive about the response that they would receive from care providers should they return to care.22 This insight from the qualitative data is essential for designing future interventions that can devise outreach approaches for the 22% who dropped out of the clinic.

Most participants depend on daily wages for survival. Therefore, continued time off work due to clinic appointments poses a significant challenge to appointment adherence. These findings are similar to the recent Childhood Cancer Survivor study in Canada that indicated that LTFUs rate increases as a patient’s length of stay in care increase.23

The high female prevalence of hypertension in our study is similar to the 2019 Kenya study, where over 70% of patients seeking NCD care across nine counties in the study were females.24 One hypothesis for this finding is that women have more frequent engagement with the medical system including pregnancy, childbirth and child care. This makes them more used to visiting a hospital and, therefore, the NCD clinics.

Our study population has a higher rate of overweight and obesity (60%) than other studies.25 The 2013 Sierra Leone national Demographic and Health Survey reported only 18% prevalence of overweight and obesity among individuals aged 15–49 years.26 A 2009 WHO national multistage cross-sectional population-based (STEPS) survey of 5483 participants in Sierra Leone reported a 22% prevalence of overweight and obesity among people aged 25–64 years.27 The high overweight and obesity in our study population could be attributed to the fact that our study was limited to enrolled patients with hypertension in the clinic.

Strengths and limitations

A strength of this study was the large sample size of 1628. The study involved the entire population of patients with hypertension seeking care in the only NCD follow-up clinic in Kono. This is the largest study done in Sierra Leone looking at the care-seeking behaviours of patients with hypertension.

We recognise that there are limitations to our study. The interviewer was a one-time healthcare provider, possibly contributing to social desirability effect. Despite this association, participants still shared important critiques of the clinic and the care provided at the clinic.

Since the data were a secondary clinic data, there was substantial missing data in patient files, registers and electronic excel sheet entry. The quality and completeness of the data were beyond our control, even though we tried to minimise its effects in our study by reviewing some of the charts with the staff that were present during our analysis.

We were not able to include other predictors that might influence adherence to clinic appointments such as a patient’s financial income, educational level, which were not recorded in the clinic. Future studies designed to examine factors associated with adherence to hypertension treatment should take these variables into account. We are aware that adherence to clinic appointment can be a proxy but does not directly translate to good BP control. Further studies should look at how adherence to appointments influences clinical outcomes, including good BP control.

Implications for research and practice

No national hypertension registries exist in Sierra Leone. We hope that this study will spur the interest of the Sierra Leone national government, and the international community to better appreciate the drivers and barriers to retention in care, as highlighted in this study, and possible ways to addressing them. Also, it will be useful to look at the cost-effectiveness of offering free NCD care and medications (removing all the financial barriers to the care) at a national level as compared with the cost of increasing hospitalisation.

The study also discovered data quality issues during our study. This was being improved during our study period through our routine chart reviews and feedback to the clinic staff. More work needs to be done to improve data collection, record keeping and data quality at the NCD clinic.

Our quantitative analysis indicates that nearly half of the population (45.2%) are in severe hypertension stages and are more likely to be adherent to clinic appointments than patients with mild hypertension. This indicates good overall utilisation of the clinical services for the patients with severe hypertension. We encourage the clinic to concentrate on these high-risk populations to prevent morbidities, and decentralisation to peripheral clinics is recommended for the management of mild hypertensive cases, and patients whose BPs are controlled.

Patients in the study appreciated the health education offered at the NCD clinic. However, the content needs to be assessed and improved, as many patients in the study misunderstood that hypertension requires long-term clinical management. Patients’ appreciation for the health talk format suggests that this could be an effective format for educating patients about the importance of long-term clinical management from the earliest moments in their enrolment.

While patients in the study highlighted good interpersonal relationships with clinic staff, nurses and clinicians need to understand patients’ fears of being reprimanded for missed appointments. A change in this behaviour might mitigate and reduce LTFU. A key finding from our study was that the data records clerks, also known as the Monitoring, Evaluation, and Quality officers, find it challenging to recognise clinician’s writing on the charts. They also mentioned that specific essential data are not recorded by the clinicians during their encounters with patients. Therefore, training of clinicians at the NCD clinic is imperative to improving the data quality. Finally, mitigating long wait time at clinic visits will help the patients stay engaged by eliminating the financial losses associated with missed work. Targeted social support interventions may also help to reduce this effect.

Conclusion

The study shows that adherence to NCD care is possible in Sierra Leone. Free medications, high-quality care services and health education may be effective ways of helping NCD patients stay engaged in care. However, for a long-term effective follow-up healthcare programme, we need to consider at the patient-level, the socioeconomic and clinical factors that essentially function as barriers in their long-term care retention, as highlighted in this study.

Data availability statement

Data are available on reasonable request.

Ethics statements

Patient consent for publication

Ethics approval

The study protocol was approved by the Institutional Review Board at Harvard Medical School (IRB19-0517) and the Sierra Leone Ethics and Scientific Review Committee. Participants gave informed consent to participate in the study before taking part.

Acknowledgments

We thank the Koidu Government Hospital (KGH) management team and staff for supporting this research work to be conducted at the facility. We appreciate the NCD patients that participated in this study and recognise the tremendous work of the staff at the NCD clinic whose work is reflected in this work. All those who supported this work in one way or the other, including the KGH M&E team, clinical team, etc, are appreciated.

References

Supplementary materials

Footnotes

  • Contributors YD, JSM, AJA and HNG developed the study concept and study design. AJA and HNG created the database collection tool with input from YD, CK, GB and AVK. YD performed the data collection with support from CK. YD and JG tabulate the data into the various tables. YD and AJA did the quantitative data analysis. YD and HNG did the qualitative data analysis. YD had the primary responsibility to perform data analysis, data interpretation and final manuscript review. All the coauthors reviewed and approved the findings. YD is the author acting as the guarantor.

  • Funding This work was conducted with support from the Master of Medical Sciences in Global Health Delivery program of Harvard Medical School Department of Global Health and Social Medicine, and financial contributions from Harvard University and the Ronda Stryker and William Johnston MMSc Fellowship in Global Health Delivery

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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