Interviewer(s): Interviewer
Interviewee(s): Respondent

Interviewer: Okay, we are in cardiology room at Mbarara regional referral hospital, nice to meet you Doctor, you are welcome and thanks for giving us your time, so this study is to determine how to provide better care for RHD, that is for rheumatic heart disease, and there are no right or wrong answers, please frank and share your opinion, the data we gather here is confidential and we shall not link it to your identity or to any of your comments, to any reports we produce, so tell me about yourself doctor, how old are you?

Respondent: I am 38 years old

Interviewer: okay, what are your qualifications and where did you train

Respondent: I trained in school of clinical officers, I came out in 2005, I have been working in hospital based care, mainly hospital based care, clinical work, along the way of course, I did another diploma in health administration, I did another one in HIV management, added on a bachelors, added on another bachelors in HIV management and a bachelors with Mild May recently but that is not clinical, project planning and management, certificates along the way, quite a number of them, in administrative law, health administration and other areas, during that time, that is about 14years, of hospital based clinical care, I have been seeing, inpatients and out patients cases, quite a number of them, out patients cases being between 30-60 patients a day, on the wards of course those are inpatients care, that is following up the management of patients that have been admitted in more severe cases or diseases and discharged as they improve, this has been mainly facility based care, but rolling out also to outreach programs where we have been seeing, following up cases, case identification, supervision of policy implementation and various activities, and as well of course also subscribed to me by my superiors

Interviewer: okay, so how long have you been working at the regional referral here?

Respondent: I have been here since 2010

Interviewer: okay, so those are nine years?

Respondent: yah nine years.

Interviewer: okay, so you talked about the patients you see, you talked about the numbers you see 30 to 60 patients, how about their age, which age do you see specifically and what are the common illnesses you see in these patients?

Respondent: this facility is a regional referral hospital, being a regional referral hospital we see a combination of patients that are referred from other lower facilities but also patients that are walk in from the nearby environment or the nearby catchments that are served by the hospital, on that basis, the outpatients care, the department in which I am in, is more of general practice, general practice means we see every patient as and when they come in, and that is very broad, we also see these patients, regardless of their age, so every patient that enters the hospital regardless of age sex regardless of the disorder they have, they are seen in the outpatients department. The only exclusions after is for patients who are severely ill and have to go straight to the emergency section because they cannot sit in the waiting line at the outpatients department, on that basis means I see patients from virtually two days of age to the eldest, yah so some of these patients for example neonates are brought by their mothers who had actually delivered them either in the village or in the lowest facility and have a problem and comes straight to OPD of course it is our duty to identify very fast during the triage that these are babies or neonates that are very sick or children who are very sick with different disorders, we see all illnesses, all the illnesses, the common infections, the common bacterial protozoa infections, viral infections that affects many parts of the bodies, so we are looking at diarrhoea infections, chest infections, we are looking at malaria, brucellosis and enteric fevers, skin disorders, so we are looking at all bacterial infections whether mild or chronic, we are also seeing increased number of non communicable diseases amongst the patients usually these are valid and also vary depending on the age, the non communicable diseases include those that are cardiovascular, hypertension, heart failure, diabetes, usually paediatric, adolescent and adult diabetes, we are seeing age related disorders, they are quite a number, very many, the list could be endless

Interviewer: okay, so now tell me a bit about your training in rheumatic heart disease; did you receive any specific training during school about rheumatic heart disease, in the school time?

Respondent: of course during study in the medical school, we are taught about diseases like rheumatic heart disease, and because frequently in the field, we have heard of course being a hospital care a number of CME Have come up and quite often not occasionally, diseases like rheumatic heart disease are have been mentioned, probably the CME could have been cough of which rheumatic heart disease was a differential or rheumatic heart disease itself or heart diseases in general where rheumatic heart disease was a differential diagnosis, so I have had training in school but also occasionally as CMEs

Interviewer: so occasionally the CMEs that is after graduation, have you had a specific training on rheumatic heart disease after school?

Respondent: No, I have not had a specific training for rheumatic heart disease and so to say if it has been a training that is specific it has, I think I will end there that I have not had the training that is specific for rheumatic heart disease.

Interviewer: okay, so how many patients of rheumatic heart disease do you see per day or per week or in a month?

Respondent: it’s quite a hard question because one, of the many patients we see, many times we end at, speculative diagnosis, and because we do not get the return result, to tell us whether this diagnosis was rheumatic heart disease, I cannot quantify the number of patients that have a rheumatic heart disease I have seen either in a day or in a week, I can only end up telling you, how many I have suspected to have heard rheumatic heart disease, that is one. Two, the figure is also variant, the figure also varies because it depends on whether in the out patients department I am seeing the adult outpatients or the paediatric out patients, there are more cases of on rheumatic heart disease in the paediatric OPD than in an adult OPD. On that basis I would say if I was in the paediatric unit, the Mondays are heavier than the Fridays or the Wednesdays, Mondays, Tuesdays are usually heavier days, I would base my diagnosis or my differential for rheumatic heart disease on how many cases I see for cough, and how many cases I see for cough with the major criteria, the diagnostic criteria, I think it’s called Jone’s criteria, the triage of fever, joint pains, nodular, migratory nodular pains, swellings, also sore throat, so on that basis, how many children would I see in a day in the paediatric OPD presenting with the major diagnostic criteria, I believe on a Monday those would be five, on Tuesday, a similar number 5, Wednesday fewer, about three or two, Thursday the same, so Monday to Friday that would make it five five, that would make it 16 to 17 cases a week.

Interviewer: okay, right now I want us to focus on rheumatic heart disease, in the past recent have you encountered any whose diagnosis has been made a rheumatic heart disease patient whether inpatient or outpatient?

Respondent: definitely yes, and I think that yes has been augmented by the fact that you have been here doing this research, initially we were incapacitated with having the ability to do Echos, the ability to do ECGs the ability to do, Aso-titers and many patients were financially incapacitated and were not able to do CBC or hemogram so some of the tests that would request for, so I think in your presence with this study, there has been an increase in our ability to diagnose effectively a rheumatic heart disease

Interviewer: now I am interested in what you were taught maybe in school about rheumatic heart disease, what's your understanding of the causes of rheumatic heart disease?

Respondent: rheumatic heart disease it doesn’t come inherently as, I would say, rheumatic heart disease is not actually caused immediately by a pathogen, the patient gets down with a bacterial infection from streptococci organisms which presents with an acute flue like illness, with fevers, sore throat, joint paints, sometimes swellings that are migratory around different aspects of the body and those are the major clinical signs along with others minors like vomiting, body weakness and others. This infection resolves with or without some treatment in some children, the infection usually affects children not adults but is not limited to children, some adults can get down with a streptococcal B infection that will be, so during that phase we call this an acute rheumatic fever, its either acute, the term acute is relative, because it could be sub acute it could be acute depending on how severe and how fast the symptoms come following that infection as the disease weighs out with or without treatment, and depending on the host’s immunity, there is formation of an antibody complex, it is this antibody complex that begins to erode and damage the capillary bed of the different target structures in the body, more specifically the heart, so it’s more notable with the heart and the kidney, so the patients manifest with rheumatic heart disease when they begin to manifest with the signs resulting from valvular damage. Those would be, difficulty in breathing, body swelling, heart palpitations, at that time they are still either having the fevers or the Febrile illness that initially came up with rheumatic fever.

Interviewer: so, are you aware of a link between a sore throat and RHD?

Respondent: yah, aah repeat that, I am really not so sure

Interviewer: are you aware of the link between a sore throat and rheumatic heart disease?

Respondent: I believe a sore throat is one of the main signs of someone having a streptococcal B infection and of course one of the signs of streptococcal B infection is sore throat, but from the sore throat, it’s also one of the clinical diagnostic manifestations we use to know that this person could be having acute rheumatic fever or not.

Interviewer: and what were you taught can be done to prevent RHD

Respondent: RHD, of course for starters, prevention is better than cure, the first thing would be prompt treatment of any cough, or sore throat with penicillin, basically that is it. Prompt treatment but even then increasing the awareness of the communities on diseases like rheumatic heart disease and rheumatic fever.

Interviewer: so what were you taught are the treatment options of rheumatic heart disease?

Respondent: I was giving that as a general one, the first one of course is early diagnosis, and early diagnosis means if the patient has been treated in a health facility, and the facility is not able and the patient is not improving on penicillin, and they have been referred upwards, so the healthy worker has to refer the patient upwards for more investigations at a health facility, the patient is seen and emphasis is put on being able to do some blood test of which aso titre is a basis. Antistreptolysin titre is one of them, is the major one, then the others are a full hemogram that would show features of bacterial infections the other one is ESR, because remember there are differential diseases that would also cause the signs that manifest like rheumatic heart disease, so at that point of diagnosis, we move into the treatments, the main treatment is of course specific, we treat acute rheumatic fever or rheumatic heart disease with penicillin, and a long term penicillin, you give Benzathine, that is penicillin G, but we used to give pen V which seems to be weaker now, we can also give Amoxicillin but depending on the patient’s ability to adhere to treatment we tend to stick to long term injectable like penicillin G, if a person is penicillin sensitive we can go down to Erythromycin . That is more specific treatment, the supportive treatment of course is analgesics and supportive treatment also targets the heart, where we give digitalis, we give beta blockades, we give various treatment that are specific to the condition of the heart. Then of course with severe, while we treat the infection we also move on to prophylactics to prevent endocarditis, so this patient stays on long term penicillin to prevent further valvular damage but with severe valvular damage then we begin to consider referral for surgery.

Interviewer: okay, that's really great and what is your understanding about the long term prognosis of rheumatic heart disease?

Respondent: understanding of the long term prognosis, this is a relative term depending on one, the access to care and two the capacity of the patient to consistently afford the health care interventions so initially the prognosis would be a life long illness, a lifelong debilitating illness with between five to ten years but again depending on the onset so if we are talking of childhood onset of about five to six years of age, rheumatic heart disease does not have prognosis of over 20years in a typical African setting where the patient has poor access to health care, that one, so 20years, we are looking at if a child is 5 to 6 years, we are looking at 10 to 15 years from the onset of the disease and again that is affected by the severity of the illness and the extent of the valvular damage, so prognosis basically is a relative term and it is case dependant on those factors onset of the disease at what age, the severity of the disease and the extent of valvular damage in the heart and if there was rheumatic heart disease anyway and also the timing of when was the diagnosis made, when that illness came up

Interviewer: okay, that's great, now I want us to recall the very last patient you saw of rheumatic heart disease, do you recall any, the very last patient you saw with rheumatic heart disease just of recent.

Respondent: like I said, it is hard to recall because I have been operating on the basis of differential diagnosis so it is hard to tell but the last patient I saw if it’s okay for me to say this in this interview, was a case I sent to you, it was an 11year old boy, I saw and met your criteria, he had fevers, he had sore throat, he had joint pains, he had been treated on and off but without improvement, so I referred him to you, you started the tests good enough you came back and told me that he met the criteria, some tests have been done, the echo and ECG were highly suggestive and of course we were waiting to have an aso titer done , this has been an interesting case because he had been treated several times, I mean with the penicillin which are the main treatment for rheumatic heart disease, unfortunately these have been short treatments, five dates treatment for the cough but without the target intention for the treatment of rheumatic heart disease so the boy kept coming down with the joint pains and fevers, that's the case I remember.

Interviewer: okay, so you said he was 11years old, was he in school?

Respondent: No, he had been in school the previous term but this term, he had studied for a week or two and came down with an attack on this febrile illness.

Interviewer: okay, kindly summarise for me signs and the symptoms he had, you had talked of the sore throat, how did he present when you received him?

Respondent: actually he presented as a case of recurrent joint pains and tonsillar hypertrophy and as I took my history I noted from the parents that he had recurrent episodes of oral pharyngitis manifesting as a sore throat, pain on swallowing and hyper salivation, these episodes were associated with fevers, being a child it had been difficult for him to talk about the joint pains, so the mother, when she found out the joint pains she was being keen and another time she really found out when she was telling him to walk and run faster and he was saying he had some pains which she could not allocate at that time, so it was basically presentation of recurrent tonsillitis.

Interviewer: so are these our patients generally aware of the link between sore throat, rheumatic fever and rheumatic heart disease?

Respondent: definitely not, at that time when they come in the diagnosis sense of; because when the patient is brought, usually a child is brought by the mother, the awareness is on the connection of co-currency, either co-currency or precision, a mother will tell you that this child first developed a fever, had sore throat around the same time and cough with flue and later got joint pains, but sometimes between this time and a few months later when they manifest with a heart symptoms, the mother might not easily correlate, so the correlation a mother or patient says is just by a fact of how some symptoms follow each other or how some symptoms are related to each other but not as part of the diagnosis that this fever, is rheumatic heart fever or rheumatic heart disease in that sense.

Interviewer: okay, so do you think these patients are good at follow up and adherence, you have talked about giving them penicillin for this disease, so what do you comment about the follow up visits and adherence to the drugs?

Respondent: that is case dependant, it is very case dependant on many factors, one, if a patient has had a severe illness and they are really scared and anxious about the disease they are more often going to be serious about coming back for a follow up or adhering to their treatments, so however or even when they are serious and are committed to their treatment that has been given or a management plan a healthy worker has given out, they have incapacitation in various ways, the main one has always been the financial incapacitation, when the person cannot afford either the treatment, the second one has always been the distance, the distance from the current facility where the diagnosis for rheumatic heart disease has been made and to couple along with that, the distance, again the work, what we call the work home environment. These patients are usually children who are brought by their parent, their parents are working, even when they want to come to hospital, they are not able to come, even when you tell them, reason being there is a negative influence, there is what we call control influence from their work stations, so even despite these, we try our best to schedule the appropriate days for the patients to come back for follow up. The biggest challenge is along those parameters. One the financial, two, distance and three the access to other factors that affect their access to care. For starters access to care can also be affected in this facility by a long patient waiting line so the patient is more often going to be hesitant to come back if he or she knows that there is going to be a long waiting line, so on top of financial issues the distance, the fact that many of these children are brought by their parents who are working and cannot afford to have them brought back every day or every time they are told to come. There are also those factors, long patient waiting time

Interviewer: so are these barriers, the ones you have started, are they the barriers patients tell you actually or they are the barriers you think?

Respondent: these are specifically patient based. These are patient based barriers that are a cross between what I see and what the patient says

Interviewer: okay, and what sorts of barriers do you passive, let’s add on those ones you have told us, there are these ones they tell you they face but there are those you think you as the health worker, what are the barriers you think would affect the patient while getting care?

Respondent: the barriers that would affect a patient coming for getting care, if am to look at it from these views, I would say there are barriers that are patient based and those that are healthy worker based there are those that are facility based, there are those that are national, within the policy based, there are also those that are coming from the environment, so when you are at the patient based, the factors, I would believe that the one thing that the patient would tell me that is going to affect the ability either to come for the first time or the second time for follow up is going to be the financial aspect that they cannot afford the transport to come back or they cannot afford the money to do the follow up tests, it could be a full hemogram, it could be the second ECG, it could be a second echo. Sometimes you might not be able to afford the drugs when they are not in a hospital and we need to send them to buy the drugs either in the nearby or external facility so that is a patient reported barrier that I always receive, the main one.

Interviewer: okay, so now let us look at the local health system barriers which is where you were actually going, so I am going to mention here some pieces you tell me which pieces are working for you and which are not working for you so we have...

Respondent: by the way, sorry if I would take you back, on the patient other barrier that I have not talked about is poor health seeking behaviour, superstition, patience bias for political reasons, and there is also what we call dependency syndrome it’s a big barrier, dependency syndrome in the African setting is having a child or a woman who cannot go to the hospital when the husband or a father or mother has allowed them to go to the hospital, the other one is of course ignorance and lack of knowledge about the disease, which makes them have late decision to go to the hospital and also resulting to late diagnosis, I am sorry to take you back, I had forgotten that one.

Interviewer: it’s okay actually, elaborate more about superstition what do you mean by superstition?

Respondent: superstition, different cultures, different villages, different communities is the term I would say for what the scope and the communities we have that are served by a regional referral hospital, the diversity of the communities we serve basically is the one that tells us that there are people who come from all different sorts of religions, different levels of education, different backgrounds, now it has been common in the past for different communities to have different superstitions, I would call it superstitions or how do they call it when someone thinks about, if someone has a wrong perception about a disease or a behaviour or an activity, I don’t classically call it superstition but basically they are the myths, we call the myths about the disease in the community. Regarding sore throat and the fever in relation to the differential diagnosis of mumps, the different communities, people in different communities believe that if someone has mumps and sore throat, if you laugh at them, you also acquire the sore throat. In one way or another, it prevents further spread of the illness because children are not going to share a cup with this person who is sick but again they are also not going to go near this child and therefore laugh at them, so this myth of course prevents in one way reduces the transmission rate for a bacterial sore throat because the children are not allowed to interrupt with each other, they are not allowed to drink and share from the same cup and things like that but there are different myth, I wouldn’t call it superstition, there are different myth about sore throat, about cough, about fevers, sometimes its extreme that if a child keeps getting the chronic illness, the recurrent fevers and then their health starts to deteriorate especially if they have rheumatic heart disease, the mother or the parent of this child might put a pointing finger to the neighbour accusing that neighbour for having indulged in witchcraft and bewitching this other person’s children, so these are things we cannot ignore in cases of chronic care, endemic chronic diseases, diseases that have recurrent illnesses or recurrent episodes of illnesses

Interviewer: okay, that's really great, so looking back at the local health system barriers, we had talked about the administration and leadership at the district, here in this hospital, is it working for you? You are going to tell me which one of these pieces is working for you and which one is not working for you and you tell me why, so the first one is administration and leadership of the entire hospital, is it working for you?

Respondent: in relation to...

Interviewer: to providing care

Respondent: yes, yes it does

Interviewer: okay, explain for me because we are looking at the local health system barriers so we are starting with the administration at the hospital, is this piece working for you, you said yes, how is it enabling you to give the care that you are giving or how is it a barrier to the care that you are giving patients at the hospital?

Respondent: it is two forward because I would say yes and no, administration leadership it is a yes because one, we as staffs in this institution we are working and some of the things that we need are provided, we have furniture, we have lighting, we have a reporting mechanism, we have a good referral system internally, our lab is up but there are some system challenges especially one regarding the responsiveness of the administration or the leadership to certain gaps when they are reported so it would be a yes and no, administration and leadership with in the hospital has provided facility and the instruments that we need, the challenge is that this is not consistent when it comes to the drug side and the lab side

Interviewer: okay, so how about the funding for health care in general and rheumatic heart disease in particular, is the funding working for you?

Respondent: of course at a more national level policy implementation, the approach has always been to do the smaller things that won’t serve the greater population, so all services coming in into the hospital are more of PHC based, when you go to the drugs, the drugs are what we call essential drug list, so this is for the bigger or a wider population and it’s the same when it comes down to the lab what we call a diagnostic activity that are the basic capacity for drugs for treatment, for diagnosis is always offered out or ruled out by the ministry at a basic level and there after the funding is wanting so we are able to find out that we could do ESR, we could do throat swabs, we could give amoxicillin, or penicillin which are drugs on the essential drugs list, we could give health education sessions, all of these are primary basic health care provisions but at a certain point, when it comes to doing full hemogram let’s say in the lab, when it comes to giving penicillin that have Clavunate like Amoxiclave, when we come to doing Echos, ECGs and other diagnostic tests, when it comes to ruling out health education sessions, repeatedly into the community or through a media platform like a radio where we have to pay for that, these are gaps that are lacking, inherently, in part this comes from administration but it also comes from the higher leadership of the country and the commitment what we call the will, politically

Interviewer: Okay, so looking at the medications, you talked about the essential drugs, so medications particularly these ones for rheumatic heart disease, Benzathine penicillin, anti- coagulation drugs, heart failure drugs, are they enough, do you think they are enough, is that piece of medicines working for you?

Respondent: in theory these drugs are working in practice there are gaps, one, in the consistency of provision or availability of these drugs, two on the basis of awareness of the health worker that is prescribing of the drugs, I personally find that I get gaps at times in the congenital medication either because there is no refresher course that would update my knowledge about either the side effects or the importance, medications or the mechanism of how the drugs should be given especially in respect to children, so drugs work for me in theory, in practice there are issues about consistency, availability and also for some of those medications, like I told you, the anti-coagulants.

Interviewer: Okay and you had talked about the diagnostic, so let us particularly look at echo cardiograph, and how is it available for these patients who have rheumatic heart disease at this facility?

Respondent: that is relative because they are either children or adults, for the adults there are is an echo cardiogram in which a patient has to pay 50,000ugshs. That is quite a lot of money, I would say only 50% of the patients can afford that amount on the day when they come on the few weeks when they come and present. On the very day when they present in the hospital and the reference for echo is done, only 25% of the patients I send can afford to have an echo, many can afford to come back, that's one, and two the echo is being done by one of our physician and this is only done on specific days of the week, which is only two days I think that is on a Tuesday and a Thursday and this greatly hinders this basically puts a big barrier on access to the echo cardiogram services, that's for the adults, for the children there is an echo cardiogram some paediatricians have been trained on the paediatric ward, I am not conversant with the days when they work but I think it is a similar challenge when it comes to the costs and affordability of having an echo, ruling out free echo services on a daily basis or more frequently during a week will be a long way in health treat and manage of patients with rheumatic heart disease I definitely think.

Interviewer: okay, and let us look at the health care workers in terms of numbers and the qualifications and the waiting time and the quality of care, so let us start with the numbers and the qualifications and the waiting time and the quality of care, so let us start with the numbers and the qualifications in this facility, is it working for you?

Respondent: numbers and qualifications, by department or by hospital in relation to the what?

Interviewer: in relation to the care of rheumatic heart disease and the general health care at large

Respondent: when it comes to numbers, when it comes to numbers, definitely the numbers are short, there is a severe shortage, there are severe shortages in certain areas of the hospital, in general we need to have more staffs for each of the institutions and for some of the departments the urgency and need depends on the area, for example the outpatient department needs more clinicians than the nurses, that's one, two as the qualifications goes higher, the need actually and the shortage becomes more drastic, there is a need for more health workers that have a higher cadre, a higher qualification, paediatricians, physicians and specialists and as we know theoretically, the ratio of the physicians or the higher the qualification is to the patients is far much worse, is far much bigger, on that note I would also say that there is a need to scale up speciality in relation to the management of rheumatic heart disease, virtually no health workers that are specific to the treatment of rheumatic disease in Uganda, so rheumatic disease as one of the diseases is treated by a general specialist not a specialist that is meant to have studied higher up and specialized in management of that disease in particular

Interviewer: okay, and let us look at the waiting time of our patients how is it?

Respondent: like any other institution, the waiting time is bad, it’s always above 30 minutes, on a Monday it goes to three hours, 4 hours. In the paediatric section, paediatric out patients in this hospital, the waiting time is also bad, it is far worse off because of the lack of triage mechanism, that would triage a child with a minor complaint versus a child with chronic complaint, some children come from very far, they are referred into this facility with suspect of rheumatic heart disease and unfortunately they sit in the same line with a child that has developed a cough yesterday, so the inability to triage out such cases is of concern and again this is made worse because there are many children and many children with a long waiting time it affects the ability for a case of rheumatic heart disease to be seen promptly, coupling on a previous point we had four numbers where a health worker is over strained, sometimes there is little time for a health worker to give a clear assessment and evaluation of this patient with rheumatic heart disease when they get to the station, it’s a general problem.

Interviewer: so averagely you think a patient waits for how long before they get to see a clinician?

Respondent: like a said it depends whether we are talking on the paediatric section or the adult section, we had an assessment survey on patient waiting time, and patient waiting time seems to be fluctuant, its worse on a Monday and Tuesday but it’s lighter on the other days of the week, that's one comment I would make, two, it’s also worse during certain seasons, so the patients attendance to the health facilities, fluctuates with the seasons when they are high, malaria cases, when there are rainy seasons, I think its relative I can’t give one figure for patients waiting time, the average right now in this month would be 45 minutes.

Interviewer: okay, how about the quality of care you give to patients, do you think it’s working for you?

Respondent: quality of care is a broad term, it’s a very broad term in terms of what the patient wants, what the patient should receive and what the health worker should give and what the institution should give, so quality embraces so many things but I would say it in general that in terms of competence of the health workers to do their work from the basis of skill set and knowledge I think I have no problem with the quality, in terms of the health workers having the necessary requirements to perform their duties well, I have some concern, if I would give you the percentage of the bad to good side, I would say we are on the bad side, if bad is 0 and good is 100, we are at 40% regarding health workers having the requirements to do their work in the clinical sense, when it comes to the lab, health workers do not have the requirements to do certain tests, and on the zero to 100 bad to good, I would say 35. In terms of the institution providing an environment for care I would say we are doing very well because patients come, they are directed where they go, they have sitting slots, the departments are there, wards are available, for those who are admitted, the space is there though sometimes there are issues about the bed numbers or if the numbers of patients are over whelming, so quality of care in general is fair.

Interviewer: okay, so let us look at the health medical information systems in these patients for both out patients and in patients, is it working for you, Medical record system?

Respondent: it was not working one year ago, we have a big problem with the data system within the institution, there is a lot of duplication of data, various data collection points that are not centralized, the system is not working in unison within the hospital, however there are steps that are being taken to streamline a complete robust data system within the hospital, at OPD currently we are phasing from a manual to an online patient registration system and we having definitely challenges with this system because it is still a trial system so I am not comfortable with it right now within our department, the outpatients department. In the hospital in general, there is a basic what we call HMIS system, it’s a reporting system where all wards and departments report information to the central records office and this is ongoing and we are comfortable with that, the data is collected. The challenge has been the fact that patients enter this institution at different points, and if a patient entered going to the outpatient department was given a number 001 and another patient went to emergency was also given 001 and another patient was entering the hospital straight to the obstetric care to the labour ward for delivery was also given 001, you would have three patients with one number 001 but no one would be able to know which patient is which because we do not have a patient identifier, a unique identifier number for these patients when they enter the hospital

Interviewer: so talking about registration, do we have specific ARF and rheumatic heart disease registers in this hospital for patients?

Respondent: we do not have these registers in the other departments I am not aware about whether there is one in the paediatric department, I am not aware, but with the system based tools, data collecting tools, there is no unique identifier tool for ARF or rheumatic heart disease.

Interviewer: so how about the guidelines and protocols for rheumatic heart disease care and also comment about the referral pathways of how you refer these patients from one specialist to another, do we have guidelines and protocols for rheumatic heart disease care?

Respondent: yes we have, all clinicians in their rooms have the Uganda clinical guidelines so treatment goes according to the Uganda treatment guidelines, however while these guidelines give suggestions and protocol on how the cases should be managed they are the practical incapacitation at one making a diagnosis so if one is not making a clear diagnosis on the basis of either aso titer , on the basis of echo and we are only making diagnosis on the basis of clinical suspicion, definitely I believe that this one is a hindrance, however within this institution, I am comfortable with the clinical diagnosis criteria we are using and I am also comfortable with a referral system because we refer as general clinicians, we refer all children under 12 years of age to the paediatric clinic which works one a week on Wednesday and here there is a paediatrician to see and attend to these patients. From there on, the paediatrician might decide to send to a senior paediatrician or to send to a senior health worker at that cadre level and admit for inpatient care, so I am comfortable with the referral system and the protocol we are using

Interviewer: so now looking back in these things we discussed, so you are saying that the guidelines and the protocols and referral systems are working for you, right? We are going through them again to see which ones are working which ones are not working and which ones are fair.

Respondent: and we need to be specific, I wish I had the Uganda clinical guideline here because it’s the one I used, but if I have my UCG or my table and I met a patient who I thought had a rheumatic heart disease or acute rheumatic fever and I read through those guidelines on my table, I believe they would help me a lot in helping my patient, two after the decision is taken to help these patients according to the Uganda clinical guidelines, I would start to meet challenges, one when I order for a test let’s say an aso titer , a CBC and Echo or any other of these tests and the patient cannot afford to pay for either of the tests, at a later stage, the patient might not be able to afford the treatment if we don’t have that treatment available at a tertially stage the patient might not be able to come back for follow up on a day that was subscribe either to see a specialist or referral or to be reviewed, so the system challenges begin to come up at a practical side but not from the theoretical side of the protocol and guidelines.

Interviewer: so in other wards you are saying that the guidelines are working for you but the diagnostics are not working for you

Respondent: but the diagnostics are not working

Interviewer: okay, the health information system and the records you said they are 50, 50.

Respondent: I cannot say 50, 50. I know these are things where it’s a black or white position, if data is meant to be useful, it should be full data, complete data consistently generated, consistently assimilated and analysed for it to be of any use, so I cannot say 50, 50. I would say our data is not complete, our data is porous, our data is not well assimilated and analysed, and our data is not collected on time so data is not working for me

Interviewer: so it’s not working for you, and for medications, BPG anti-coagulation drugs, anti failure drugs, you said they are working for you?

Respondent: some

Interviewer: you would give it 50?

Respondent: that question is relative on whether I am comfortable with the drugs as prescribed in theory, that one I am but availability no

Interviewer: so it’s working for you

Respondent: some are working for me, some of the drugs are working for me but the challenge is I don’t have consistent refresher on the category of drugs that are written there, what we call the anti-coagulants.

Interviewer: and the funding in general of the health care system, it is working or it’s not working?

Respondent: it works at a basic level, at a basic level where provision of basic services are provided, at a higher level, that falls short

Interviewer: so you give it a yes or no?

Respondent: I cannot give it a yes or a no because I have told you at a basic level, provision of health care at a basic level, the staffing but when you begin to go into specialized care the health service delivery falls short

Interviewer: and the administration you said that one is working

Respondent: the administration is too forward, the administration is working but there are also some leadership challenges but I would still say the administration and leadership within the hospital is okay

Interviewer: so let us go to the last batch of the questions, the perception of patient outcome generally do you think these patients get the care they need, clearly we are talking about RHD patients, especially surgery, and do you think they get the care they need?

Respondent: our patients get the initial treatment, but when it comes to surgery, our patients do not get the care totally but a very small percentage, I can’t quote anything but in subjectively I can say under five percent can afford the surgery in this area, can afford the surgery required for management of rheumatic heart disease.

Interviewer: and let us look at the patient’s safety, do you think there are any patient’s safety and quality of care concerns for example have you heard preventable deaths in the hospital, have you seen a death occurring and you are like for sure this shouldn’t have happened?

Respondent: okay, in relation to rheumatic heart disease or in general?

Interviewer: in general

Respondent: no, I saw one maybe, I saw one, the patient had severe hypoglycaemia in diabetes and well these are factors that are out of the hospitals control because this is a person who gave themselves an injection with insulin, forgot to eat and taken some alcohol, slept thought they would wake up, they did not and by the time they found out that the person was unconscious they were in the village, the first primary health care worker did not respond to the diagnosis that this could be hypoglycaemia, managed different things and added the quinine and referred the patient here, by the time the patient came, they were very comatose and I thought that this was a problem with diagnosis, it was a preventable death. That one, there are also others that have happened but I have not been there, neither at the emergency section or down on the wards, I cannot speculate to say something which I have not been there present, that one is one case that I saw.

Interviewer: but do you think there are many patients dying in the community without actually presenting to the hospital for care?

Respondent: in regard to rheumatic heart disease or in general?

Interviewer: generally

Respondent: definitely yes

Interviewer: why do you think so?

Respondent: it has always been a barrier of ignorance, lack of knowledge, poor access to health care, poor health seeking behaviour, and financial incapacity, if we become more specific and go to either obstetric care, paediatric care, then that's where I will be more specific

Interviewer: okay, so as we wind up now, in your own opinion, are there one or two most important things you think ministry of health can do to actually improve the outcomes of our patients?

Respondent: if it is regarding rheumatic heart disease, I think the ministry of health needs to secure funding internally, but it will secure funding after prioritizing and ruling out a basic treatment care package for rheumatic heart disease nationwide, this care package should include, one, an Aso titer, the ability to have echo to probably attaching a CBC test and then ensuring that basic treatment for rheumatic heart disease is available. If this is going to be very expensive, some facilities have these on a private basis, it will become easier for the ministry of health to ensure that all facilities have prioritized RHD by creating a department for management of rheumatic heart disease or acute rheumatic fever in their institutions. Having a department also increases the ability for sensitization and awareness job creation among the communities, rolling out other facility based and community based facilities, I think that is the one biggest thing, prioritizing through policy formulation by the ministry, prioritizing the need to create a rheumatic heart disease department within the ministry and then following all the system tyre downwards and it is then these departments that will prioritize how and when tests can be done and then health workers will be trained and refresher courses done how and when patients can be sensitized and referred through a system that would help patients get managed better and faster.

Interviewer: any other?

Respondent: that's the main one, because once this one is there, then the political need will come up. Of course it will secure secondary funding and the other but it still starts with prioritization

Interviewer: do you think you have any other thing you want to comment about before we close?

Respondent: I will say, I am very happy to have taken part in this interview but again I am even more happy that your presence here as an ARF study has greatly helped the patients that have been seen during the time, because I am very sure that 90% of the patients you saw, would not have afforded to have some of the research study interventions that you rolled out especially the aso titers, the treatment and care, the Echos and ECG tests. And I am most very happy that the staffs in this research study have been very supportive to us, they have been very good, they have been very professional and I would say good luck to them and also say thank you to the study investigators because this is a critical area that has been lacking and the need is there to have this intervention rolled out regarding rheumatic heart disease, prevention and control, yes.

Interviewer: okay, thank you so much doctor for your time, we are grateful

Respondent: you are welcome.