College of Medicine and Health Sciences (CMHS), University of Rwanda, Kigali, Rwanda
College of Medicine and Health Sciences (CMHS), University of Rwanda, Kigali, Rwanda
Pub
in
et
c
li
ll
He u
alth B
1
College of Medicine and Health Sciences (CMHS), University of Rwanda, Kigali, Rwanda
ABSTRACT
Potential Conflicts of Interest: No potential conflicts of interest disclosed by all authors. Academic Integrity: All authors confirm their substantial academic
contributions to development of this manuscript as defined by the International Committee of Medical Journal Editors. Originality: All authors confirm this manuscript
as an original piece of work, and confirm that has not been published elsewhere. Review: All authors allow this manuscript to be peer-reviewed by independent reviewers
in a double-blind review process. © Copyright: The Author(s). This is an Open Access article distributed under the terms of the Creative Commons Attribution License
(CC BY-NC-ND), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Publisher: Rwanda Health
Communication Centre, KG 302st., Kigali-Rwanda. Print ISSN: 2663 - 4651; Online ISSN: 2663 - 4653. Website: https://rbc.gov.rw/publichealthbulletin/
damage. It commonly occurs between the ages of sectional observational study involving children and
4-15 years and takes place 2-3 weeks after GAS adolescents with RHD presenting to the outpatient
upper respiratory tract infection. Although ARF or inpatient pediatric departments at two public
has almost disappeared in the developed world tertiary hospitals in Rwanda [Kigali University
due to improved sanitation and socioeconomic Teaching Hospital (CHUK) and Butare University
conditions, it continues to be a serious public Teaching Hospital (CHUB)]. Data collection was
health problem in developing countries [3]. In conducted over five months, from January to May
Rwanda, RHD is a significant health problem, 2019. The study focused on children aged 5 to 18
with an estimated prevalence of 6.8 per 1000 years who had been diagnosed with RHD and had
schoolchildren [4]. been receiving secondary prophylaxis for at least
Prevention of ARF includes primordial prevention, six months. In Rwanda, the pediatric age range is
which involves improving socioeconomic defined as 0 to 15 years. Patients aged 15 years
conditions; primary prevention, which involves and older are typically treated in internal medicine.
prompt treatment of GAS pharyngitis; and However, those aged 15 to 18 years continue to
secondary prevention, which involves a continuous receive follow-up care in the pediatric department
administration of benzathine penicillin G to following cardiac surgery.
patients with a previous attack of ARF or well-
documented RHD [5]. Another intervention in Study population: The study included patients
the prevention of early mortality due to RHD is aged 5-18 years with confirmed RHD by
cardiac surgery, which is not accessible to many echocardiography, treated at the CHUK and
patients, especially in low-income countries [6]. CHUB OPD pediatric cardiology, who consent
Even after heart surgery, patients are exposed to to participate, receive monthly intramuscular
many complications, such as thrombo-embolic penicillin injections, and consult two tertiary level
events and severe bleeding, when using warfarin hospitals. Exclusion criteria include patients/
treatment [7]. The cost-effective strategy remains guardians who decline to sign consent forms,
the prevention of ARF and progression to severe patients on secondary prophylaxis for less than
rheumatic valvular heart disease [8]. 6 months, and patients on oral penicillin for
Although based on a low level of evidence, prophylaxis.
intramuscular penicillin was shown to be more
effective than oral penicillin [9]. The rate of Sample size calculation: A sample size calculation
adherence to secondary prophylaxis is unknown in has been calculated using the Raosoft formula as
many countries of sub-Saharan Africa, particularly follows:
in Rwanda. Different factors associated with
adherence have been reported in various regions X=Z(c/100)2r(100-r)
of the world. These include socioeconomic status, N=N x/((N-1)E2 + x)
knowledge about the disease, waiting time at the E=Sqrt[(N - n)x/n(N-1)]
clinic, the painful aspect of the injections, and
distance to the clinic [1,10]. Where:
Knowing different factors, beliefs, and barriers E is the margin of error and is of about 5%
associated with adherence would help clinicians N is the population size. In this case, it is 80,
find ways of improving adherence to secondary the total number of patients received in pediatric
prophylaxis and thus improve the quality of life outpatient in a period of 4 months
of our patients. This research project aimed to r is the fraction of response we are interested in, in
explore factors, beliefs, and barriers associated this case, 54%, based on a study done in Uganda
with adherence to injectable forms of penicillin [10].
in children and adolescents with RHD receiving Z(c/100) is the critical value for the confidence
secondary prophylaxis at public tertiary hospitals level c, 95% confidence interval.
in Rwanda. n is the minimum sample size and is equal to 67
Table 2: Patient Practices, Beliefs, and Awareness Regarding Prophylaxis and Management of Rheumatic Heart Disease
N %
Missed injections in last 6 months
No 30 44.8
Yes 37 55.2
Period of starting prophylaxis
Less than 1 year 8 11.9
1-2 years 20 29.9
2-5 years 24 35.8
>5 years 15 22.4
Action taken when missed appointment
I wait till next appointment 22 32.8
I go a few days later 45 67.2
Awareness of side effects
No 40 59.7
Yes 27 40.3
If no injections
May heart condition will get worse 51 76.1
It’s ok to miss some doses, nothing will happen 16 23.9
Awareness for need of surgery
No 11 16.4
Yes 56 83.6
Waiting time at the clinic
20-40 min 5 7.5
40-60 min 28 41.8
1-2 hours 29 43.3
>2 hours 5 7.5
Awareness on the stop of progression by the injections
No 8 11.9
Yes 59 88.1
Belief on effectiveness of traditional medication
No 64 95.5
Yes 3 4.5
Hospitalized due to this condition
No 7 10.4
Yes 60 89.6
Ever had severe side effects from injections
No 65 97.0
Yes 2 3.0
Time from home to the clinic
1 hour 27 40.3
1-3 hours 35 52.2
3-5 hours 4 6.0
>5 hours 1 1.5
Patient Practices, Beliefs, and Awareness prophylaxis. There is a strong association between
Regarding Rheumatic Heart Disease the employment status of the parent or guardian
Management and adherence, with participants who have an
The study revealed that 55.2% of participants employed parent or guardian showing significantly
missed at least one scheduled injection in the past better adherence (OR [95% CI]: 12.17 [1.42-
six months, with 67.2% attending a few days later 103.9], p=0.022). Additionally, living in an urban
and 32.8% waiting until the next appointment. area is associated with higher adherence to RHD
Awareness of side effects was low (59.7%), secondary prophylaxis compared to residing in
though severe side effects were rare (3.0%). a rural area (OR [95% CI]: 9.05 [2.28-35.91],
Most participants (76.1%) believed missing p=0.001). The table also indicates that a higher
injections would worsen their heart condition, and educational level of the parent or guardian is
88.1% trusted penicillin injections to halt disease positively associated with adherence (OR [95%
progression. Awareness of the need for surgery CI]: 3.4 [1.15-10.12], p=0.027).
was high (83.6%), and nearly all participants
(95.5%) distrusted traditional medicines. Long Barriers, beliefs, and behaviors associated with
waiting times (41.8%-43.3% waited 40 minutes to adherence
2 hours) and travel distances (52.2% traveled 1-3 Table 4 highlights various barriers, beliefs, and
hours) were noted challenges. Additionally, 89.6% behaviors linked to adherence to secondary
had been hospitalized, highlighting the disease's prophylaxis. A long distance to the clinic is strongly
severity (Table 2). associated with poor adherence (OR [95% CI]:
5.55 [1.94-15.89], p=0.001). Additionally, long
Socioeconomic factors associated with waiting times at the clinic are also significantly
adherence associated with poor adherence (OR [95% CI]:
Table 3 presents the socioeconomic factors 4.77 [1.69-13.43], p=0.003).
associated with adherence to RHD secondary
Self-reported adherence
Socio-economic variables OR (95% CI) P value
Adherent Non-adherent
Gender
Female 20 (46.5%) 23 (53.5%) 1.02 (0.37-2.79) 0.957
Male 11 (45.8%) 13 (54.2%)
Home address
Urban 14 (82.4%) 3 (17.6%) 9.05 (2.28-35.91) 0.001
Rural 17 (34.0%) 33 (66.0%)
Employment status of parent/guardian
Employed 8 (88.9%) 1 (11.1%) 12.17 (1.42-103.9) 0.022
Unemployed 23 (39.7%) 35 (60.3%)
Who accompanies the patient to the clinic?
None 5 (26.3%) 14 (73.7%)
Family member 26 (54.2%) 22 (45.8%) 3.31 (1.02-10.64) 0.044
Level of education of parent/guardian
Secondary/University 14 (66.7%) 7 (33.3%) 3.4 (1.15-10.12) 0.027
Primary/None 17 (37.0%) 29 (63.0%)
Economic class (Ubudehe)
Category 1 & 2 16 (37.2%) 27 (62.8%)
Category 3 15 (62.5%) 9 (37.5%) 2.81 (1.0-7.89) 0.049
Self-reported adherence
Barriers, beliefs, and behaviors OR (95% CI) P value
Adherent Non-adherent
Long distance to the clinic
Yes 9 (26.5%) 25 (73.5%)
No 22 (66.7%) 11 (33.3%) 5.55 (1.94-15.89) 0.001
Long waiting time at the clinic
Yes 10 (28.6%) 25 (71.4%)
No 21 (65.6%) 11 (34.4%) 4.77 (1.69-13.43) 0.003
Awareness of side effects of the injections
Yes 17 (42.5%) 23 (57.5%) 0.68 (0.25-1.83) 0.452
No 14 (51.9%) 13 (48.1%)
Consequences of not getting the injections
Worsening my heart condition 27 (52.9%) 24 (47.1%) 3.37 (0.95-11.87) 0.058
It’s ok, nothing will happen 4 (25.0%) 12 (75.0%)
Awareness of possible surgery
Yes 24 (42.9%) 32 (57.1%) 0.43 (0.11-1.63) 0.214
No 7 (63.6%) 4 (36.4%)
Knowledge of the role of secondary prophylaxis
Yes 26 (44.1%) 33 (55.9%) 0.63 (0.15-2.58) 0.521
No 5 (62.5%) 3 (37.5%)
Belief in traditional healers
Yes 3 (100%) 0 (0.0%) 8.96 (0.44-180.7) 0.152
No 28 (43.8%) 36 (56.3%)
Relationship between barriers and beliefs with poor adherence (M ± SE: 1.56 ± 0.54, t=2.878,
adherence p=0.005). Additionally, patients with higher
Table 5 compares adherent and non-adherent barrier scores are significantly less adherent than
patients based on their beliefs and barriers. It those with lower barrier scores (M ± SE: 4.6 ±
shows that patients with good adherence have 0.85, t=5.531, p<0.001).
significantly higher belief scores than those with
Mean beliefs score/5 4.03 ± 0.56 3.83 ± 0.04 0.19 ± 0.07 0.05-0.33 2.878 0.005
Total barriers score/45 26.58 ± 0.64 31.28 ± 0.56 4.6 ± 0.85 6.39-3.0 5.531 <0.001
Mean barriers score/5 2.95 ± 0.07 3.47 ± 0.06 0.52 ± 0.09 0.71-0.33 5.531 <0.001
M: Mean, SE: Standard error, CI: Confidence interval
A large proportion of patients in our study resided This is the first study to examine factors, beliefs,
in rural areas (74.6%), consistent with findings and barriers to secondary prophylaxis adherence
from India (69%) and Uganda (60%). In contrast, in children with RHD in Rwanda. However, it has
studies in Egypt have shown a predominance of limitations, including potential acquiescence bias
patients from semi-urban or urban areas [1]. Most due to self-reported adherence and interviewer-
participants (61.4%) came from low-income administered questionnaires. Although the
families, with many belonging to social class principal investigator completed the questionnaires,
Ubudehe categories 1 and 2, a finding similar questions were kept concise to minimize bias and
to the Indian study where 73.6% of patients had ensure participant understanding. Additionally,
low socioeconomic status [3]. In Uganda, 68.4% the small sample size and specific site limit the
of patients were unemployed [10], while in New generalizability of results.
Caledonia, Gasse et al. reported a substantial
number of households with a higher monthly CONCLUSION
income [12]. Only 13.4% of guardians in our study
had formal employment, contrasting with findings Adherence to secondary prophylaxis is the most
from Jamaica, where 35% were unemployed [11]. effective way to reduce RHD-related morbidity
Educational attainment was limited, with 46.3% and mortality. Our study found low adherence
of guardians having completed only primary to RHD secondary prophylaxis using injectable
education, similar to findings from Musoke et al. penicillin at the tertiary care level in Rwanda, with
in Uganda [10]. Conversely, the study from India rural residence and parental unemployment being
reported a much higher education rate among significant contributors to poor adherence. Long
participants (65%) [3]. distances and clinic wait times were the primary
Antibiotic prophylaxis is an effective, cost-efficient barriers. To enhance adherence to secondary
measure for preventing recurrent ARF episodes and prophylaxis among patients with rheumatic heart
reducing the burden of RHD. Our study revealed disease (RHD), several key recommendations
low adherence (46.3%) to secondary prophylaxis should be implemented. First, healthcare providers
with intramuscular penicillin, a trend consistent must prioritize education for RHD patients and
with similar studies in low-income settings. In the their parents or caretakers, emphasizing the critical
Philippines, Respicio and Sicat found adherence importance of adhering to secondary prophylaxis.
to be 46.6% [13], while adherence was 48.7% in Second, district hospitals should decentralize
Jamaica [11], 56% in Northern Australia [14], and RHD prevention activities by extending them
58% in Uganda [15]. A Brazilian study noted non- to health centers, ensuring greater accessibility
adherence among 35% of children [16]. and continuity of care. Third, health facilities
managing RHD patients should establish registries
In this study, poor adherence was significantly and Benzathine penicillin injection cards to better
associated with unemployed guardians, rural track adherence and identify patients who require
residents, and low educational levels (p=0.022, additional support to improve their adherence
p=0.001, p=0.027, respectively). Similar patterns levels. Lastly, the Rwanda Biomedical Center
have been observed in other regions, such as Egypt, (RBC) and the University of Rwanda should
where parental educational and occupational status conduct a comprehensive study on a larger sample
influenced adherence [17], and Uganda, where city size to accurately determine the level of adherence
residence and higher education levels were linked to secondary prophylaxis across the country.
Trop. Med. Int. Health, vol. 21, no. 12, pp. 1583– follow-up treatment for Rheumatic heart disease in
1591, 2016, doi: 10.1111/tmi.12796. Jimma , Ethiopia : A grounded theory analysis of
[20] K. Petricca, Y. Mamo, A. Haileamlak, E. Seid, the patient experience,” Ethiop. J. Health Sci., vol.
and E. Parry, “Original Article. Barriers to effective 19, no. 1, pp. 39–44, 2009.