Stakeholders’ perspectives on the status of diabetic retinopathy and diabetes health service management systems in Uganda – Springer

The International Diabetes Federation estimates that the number of people living with diabetes in sub-Saharan Africa (SSA) will increase by 134% from 24 million in 2021 to 55 million in 2045 [1]. This notwithstanding, up to 54% of undiagnosed diabetics are from SSA, Uganda inclusive [1, 2]. Like other SSA countries, Uganda faces a worsening epidemic of diabetes and other Non-Communicable Diseases (NCDs), which are driven by urbanization, lifestyle, poor diet, smoking, environmental factors, and aging [3, 4]. Uganda, like may other low- and middle-income countries (LMICs), is currently dealing with a “dual epidemic” of NCDs and communicable diseases [5]. Yet, as evidenced by Nadir et al. [6], health systems in most LMICs are inadequately ready to address the growing NCD burden.

Diabetes mellitus (DM) is associated with several complications that can be prevented with early diagnosis and glycemic control. Diabetic eye disease is one such complication. It comprises mainly cataracts, glaucoma, diabetic macular edema, double vision, inability to focus, and diabetic retinopathy (DR). Diabetic retinopathy, which is one of the leading causes of blindness in the working-age population, despite being potentially preventable and treatable, has significant personal and socioeconomic consequences [4, 7,8,9]. However, in most sub-Saharan African countries, there is a lack of sufficient literature on the prevalence of DR due to inadequacies in the health management information systems [10]. Even in situations where the prevalence of DR has been determined [10, 11], this has been based on small geographical studies conducted in DR-prone regions or among patients attending highly specialized clinics, thereby affecting the generalizability of such findings at the general population level. Besides, due to the lack of data on the national burden of DR, DR services tend to be available only at the regional or tertiary level of care (e.g., at regional or national referral hospitals) at the expense of the lower level facilities that are accessible by a majority of the population.

In order to improve the management of diabetes and prevent irreversible blindness, it is important to ensure that diabetes and diabetic retinopathy services are readily available at various levels of the healthcare system. It is also important to ensure that the management of both diseases is provided synergetically, given the interrelationship between the two diseases. However, while these observations may seem obvious, in most low- and middle-income countries (LMICs), services for the management of diabetes and diabetic retinopathy tend to be available at the tertiary level with the lower levels of the health system not adequately covered [12,13,14,15]. The inadequate number of staff trained to offer ophthalmology services is one of the greatest hindrances in the management of DM and DR services in LMICs, including Uganda. The few available staff work at the regional or tertiary level of care or in the Capital City, far away from the populations in need. For instance, based on records from the Ministry of Health, more than half of the 51 Ophthalmologists, 15 Optometrists and five (5) Vitreoretinal Surgeons in Uganda are based in Kampala, the Capital City of Uganda. Besides, in most LMICs, while some data may be available regarding the provision of diabetes management, there is virtually no data available regarding the management of diabetic retinopathy. This scenario makes it difficult to plan for, let alone regulate, the provision of diabetes and diabetic retinopathy services in most countries.

This consultation was intended to document stakeholders’ perspectives on the status of health service management systems for DM and DR in Uganda in order to inform the generation and/or revision of relevant policies and guidelines, as appropriate, to improve the provision of services for the prevention, care and treatment of these eye diseases in Uganda. In this paper, the term ‘stakeholders’ is used to refer to health professionals working in the field of diabetes and diabetic retinopathy care. Stakeholders included healthcare providers and other health professionals drawn from entitites that support the management of DM and DR services in Uganda including the Ministry of Health, World Health Organization and Lions Clubs International Foundation.

This paper uses data collected as part of a national-level assessment of the status of DR and DM health service management systems in Uganda using the Tool for Assessment of Diabetic Retinopathy and Diabetes Management System (TADDS). The TADDS questionnaire was developed and validated by the World Health Organization [16]. The primary objectives of the assessment are to: (a) assess the existence, availability and accessibility of health care services for diabetes mellitus (DM) and diabetic retinopathy (DR) in a given territory or country based on selected stakeholders’ expert opinion and experience; (b) provide an accurate picture of the existence and effectiveness of links between management of patients with diabetes and management of diabetic retinopathy; (c) identify the challenges faced by different levels of a national health system in providing eye care for patients with diabetes; and (d) inform the government and DM and DR stakeholders of aspects of a health system that need to be prioritized for future research and development [16]. The TADDS questionnaire assesses the level of awareness and availability of services in the management of diabetes and diabetic retinopathy with use of both open and close-ended questions [16].

2.1 Stakeholders’ engagement

As shown in Table 1, we interviewed 40 healthcare professionals and staff representatives from the Ministry of Health, Lions Clubs International Foundation (Uganda), WHO country office, Mulago National Referral Hospital, ten public Regional Referral Hospitals, one public general hospital (Naguru) and six private-for-profit hospitals that offer DR and DM services in the country (Mengo, Kibuli, Nsambya, Rubaga, Ruharo, and Benedictine hospital). Stakeholders’ interviews were conducted in February 2019. The TADDS questionnaire includes close- and open-ended questions organized around seven thematic areas, namely: DR and DM priorities, policies, and programs; service delivery; health workforce; health technology; health information management system; health promotion for diabetes and diabetic retinopathy, and health financing. Completed copies of the TADDS questionnaire were returned to Kampala for data entry, data cleaning and analysis. Responses to the close-ended questions were analyzed using STATA, version 16.0 while responses to the open-ended questions were analyzed manually, following the seven TADDS thematic areas.

2.2 Validation meeting

After formal data analysis was completed, we convened a validation meeting with key stakeholders and healthcare providers, some of whom had not participated in the assessment, to obtain concurrence on the main findings but also to obtain any additional insights on DM and DR health service management systems in Uganda that had not been captured as part of the assessment. The meeting was held on April 17, 2019, at Hotel Africana in Kampala, Uganda, and was attended by 50 participants, some of whom had participated in completing the TADDS questionnaire. Participants were drawn from the Ministry of Health, World Health Organization (Uganda Country Office), Regional Referral Hospitals, Private Hospitals, Lions Clubs International Foundation, and international non-government organizations including Sightsavers, Christian Blind Mission, Light the World and Brian Holden Vision Institute. The objectives of the validation meeting were to: (a) review the main TADDS results for Uganda; (b) identify gaps and build consensus on priority actions based on the TADDS results; and (c) identify resources and key stakeholders needed to strengthen diabetes and diabetic retinopathy management in Uganda. The validation meeting was officially opened by a representative of the Director General of Health Services from the Ugandan Ministry of Health.

During the meeting, participants were divided into seven groups with each group assigned to discuss findings from a specified TADDS thematic area. Within each group, participants were instructed to review the findings and confirm if they truly depicted the situation at hand; reach consensus on the key priority actions needed to address the issues identified through the consultations, pick the most urgent and most feasible actions (list of top 3 priorities); assign responsibility for implementing each priority action (top 3), suggest potential funding sources; and agree on the frequency of reporting on DM and DR indicators, among other aspects. After the discussion, each group presented their deliberations and key recommendations to a plenary session facilitated by the lead author.

Results are presented in two inter-related sub-sections: (a) stakeholders’ perspectives on the current status of the DM and DR health service management systems in Uganda, and (b) recommendations from the national validation meeting.

3.1 Stakeholders’ perspectives on the current status of DM and DR health service management systems in Uganda

The perspectives from the healthcare providers and other stakeholders pertaining to the current status of the DM and DR health service management systems in Uganda are summarized below, based on the seven thematic areas of the TADDS questionnaire.

3.1.1 Thematic area 1. Priorities, policies, and programs for diabetes mellitus

This thematic area focused on determining the existence of and, if known, compliance with the guidelines currently used in the country for managing diabetes and diabetic retinopathy. The guidelines for the management of diabetes and diabetic retinopathy are contained in the 2016 Uganda Clinical Guidelines [17]. Of the 34/40 participants who responded to questions on whether DM is a ntional priority and whether there are any policies and programs for DM management, nearly three-quarters (73.5%, n = 25) believed that DM is listed as a national priority but disagreed as to whether there is a national plan or a national program formulated to cover the whole country. Of the 25 participants, 13 believed that although there is a national DM plan, there is no program that has been implemented in the country; 11 believed that although a national plan has been formulated and a program is in place, it does not cover the whole country while one participant believed that DM is not only a national priority but also there exists a national plan and program that covers the whole country exists.

Of the 35/40 participants who responded to questions on the existence of guidelines for the clinical management of DM, 28 participants (80%) believed that the Ministry of Health has formulated guidelines on diabetes management and that these guidelines are available (largely in print) but disagreed as to whether they are being followed or widely used. Of the 32/40 participants who responded to the question on the availability of guidelines for clinical management of DR, half (50%, n = 16) were unaware of their existence. Of the remaining half, only two participants believed that the guidelines are in place and that they are commonly followed. Nine believed that guidelines on DR management are available and are known to the appropriate audience but they are not widely followed while five participants believed that although guidelines have been formulated, health professionals are unaware about their availability. It is important to note that almost all participants (94%, n = 30) did not know how the DR guidelines were formulated.

3.1.2 Thematic area 2. Service delivery

This thematic area focused on availability and accessibility of DM services, location and accessibility of diabetic retinopathy services and linkage between diabetes and diabetic retinopathy management. Of the 37/40 participants who responded to questions on the availability and accessibility of DM services, 70% (26) reported that some diabetes management services, particularly for newly diagnosed patients, are available to part of the population, usually at the regional level of care. For the on-going care of people with diabetes, services are also mainly available at the regional level of care, at both private and public health facilities. When asked to estimate the proportion of the population that can access DM services, on average, participants estimated that less than half of diabetes patients have access to these services. The major barriers highlighted include a lack of awareness about diabetes screening services, long distances to the health facilities; challenges with the availability of consumables at the facilities, inadequate human resources that increase the workload, high patient costs for diabetes services, and lack of transport costs to reach health facilities, among other barriers.

Of all the 40 participants who responded to the question on awareness about the availability of specialist diabetes centers, only 18 (45%) were aware of their existence and the types of services available at these centers, including treatment of complications, health education, patient follow-up, blood pressure screening, and clinical assessment and management. On the other hand, of the 38/40 participants who responded to the question regarding the location of diabetic retinopathy (DR) services and their accessibility to the population in need, 73.7% (n = 28) agreed that some DR services were available to a part of the population, while 21.1% (n = 8) reported that such services were available in a few places and only to a few people. Slightly more than two-thirds (68%, n = 26) of the participants indicated that patients are referred only if they reported symptoms of vision loss while 95% (n = 36) reported that there are no community screening programs for DR. Eye examinations for DR are most commonly performed at the regional level of care, with only 34.2% (n = 13) of the participants believing that the population can easily access such services. Finally, regarding whether or not there is any linkage between DM and DR management, 35/40 participants responded to this question. Of these, 14 (40%) reported that there is no known collaboration between the providers of care for DM patients and those who provide care to DR patients. Of the remaining 21 participants, 13 (37.1%) agreed that some or most centers provide patient-centered care based on collaboration between DM and DR services while the remaining 8 participants reported that only a handful of centers provide patient-centered care. When asked if non-governmental organizations were involved in the management of DM and DR patients, slightly more than half (55%, n = 22) of the participants reported that they are involved but mainly focus on screening, health promotion and sensitization.

3.1.3 Thematic area 3. Availability of the health workforce

This thematic area focused on the categories of health professionals available for people with diabetes; availability of training opportunities to build the capacity of existing health workers in DM and DR management, which aspects of DM management are included in the teaching curriculum for primary health care workers, and how continuing medical education is provided to primary health care workers (see Table 2 for details). Regarding the categories of health professionals available for DM patients, the most common category of health professionals (mentioned by 50–70% of the participants) were ophthalmologists, primary care physicians, general health practitioners, and ophthalmic-trained nurses. Less than 5% of the participants reported the availability of optometrists, orthoptists and low vision therapists. However, we did not record how many of these healthcare providers were employed at the different levels of the healthcare system, as this was outside the scope of this assessment. This is an area that warrants further inquiry.

When asked about the existence of training opportunities to build the capacity of the health workforce in DR and DM management, half of the 40 participants reported that there were few training opportunities for the health workforce, which consequently results in the availability of fewer human resources than needed. When asked how continuing medical education is provided to primary health care workers, 57.5% (n = 23) reported that it is provided through formal training by government, university, and professional organizations while 52.5% (n = 21) reported that it is provided through regular informal updates or workshops. Participants believed that there are primarily three main aspects of diabetes management that are included in the teaching curriculum for primary health care workers in Uganda and these include: a) awareness of complications of diabetes (82.5%, n = 33), health education for patients (80%, n = 32) and the need for and timing of referral for eye examination (62.5%, n = 25).

3.1.4 Thematic area 4. Availability, accessibility, and use of health technology

As shown in Table 3, 24/40 (63.2%) participants reported that modern examination technology was available only in major public and private hospitals; of these, 36.8% (n = 14) reported that these technologies were not available to the majority of patients. Besides, when asked about the available equipment, the blood glucose meter was the most common equipment mentioned (97.5%, n = 39), followed by direct ophthalmoscope (80%, n = 32), slit lamp (75%, n = 30) and biochemical laboratory tests for glycated hemoglobin (72.5%, n = 29), in that order. The most common technology used to perform retinal examination for diabetic retinopathy is dilated eye examination by an ophthalmologist (80%, n = 32). As with the other services for DM and DR management, most of the technology to perform retinal examination for diabetic retinopathy is mainly available at the regional level of care (82.5%, n = 33) or in Kampala, the Capital City of Uganda. For instance, of the four Optical Coherence Tomography (OCT) machines available to diagnose DR in Uganda, three are based in Kampala.

3.1.5 Thematic area 5. Health management information system

Of the 37/40 participants who responded to questions on the health management information system, 54.1% (n = 20) indicated that the national prevalence of DR and DM is neither known nor estimated while 37.8% (n = 14) believed that while the prevalence of DM is known, the prevalence of DR is not known and patients’ records are not shared across related entities. Only three participants (8.1%) believed that the prevalence of both DM and DR is known and that patients’ records are shared across related entities. Qualitative insights from the participants suggest that health facilities are not willing to share their data with other entities for eventual use.

“Our hospitals are very uncooperative, and the majority of patients with DM are cared for in major hospitals that have advanced equipment, but these are very secretive of what they do, they do not furnish the Ministry of Health with data; the Diabetic Retinopathy Network reached out to them to share their data, but this did not take effect, they see a good number of clients, but this client load is neither known nor planned for, and the Ministry of Health needs to tighten its grip on them” (Key informant #1).

3.1.6 Thematic area 6. Health promotion for diabetes and diabetic retinopathy

Of the 34/40 participants who answered the question on health promotion for DM and DR, 58.8% (n = 20) reported that information to the community is provided occasionally and through national-level media; not all patients receive education. On the other hand, 35.3% (n = 12) reported that little information is provided to the community, and little education is provided to the patients. Of 40 participants who responded to the question regarding whether or not participants are informed about where to go if they have a problem, 47.5% (n = 19) reported that DM patients are made aware of any diabetic patients’ organizations. When asked how patients’ support organizations are made accessible to disadvantaged groups of the population such as those in rural locations, participants mentioned that this is done through diabetic clinics, by word of mouth through health centre staff and fellow disadvantaged groups, through joining existing associations, or through community outreach programmes.

3.1.7 Thematic area 7. Health financing for DM and DR management

DM and DR management is largely under-funded. No government funding is earmarked for DM and DR, except for drugs ordered by health centers and basic instruments. It is likely that the lack of data on the burden of DM or DR also challenges fund allocation, as reported by this participant:

“No data are collected on DM financing and our budget does not break down how much will go to what, so even if we wanted to support, we have no idea what is required” (Key informant #2).

For DM patients, close to two-thirds of the required finances for all interventions are funded by the patients themselves. For DR patients, close to two-thirds of the finances required for prevention (retinal screening) are funded by the patient, and more than two-thirds of the finances required for laser photocoagulation and vitreoretinal surgery are funded by patients.

3.2 Recommendations from the national validation meeting

At the national validation meeting, there was consensus that the findings were a true reflection of the DM and DR situation in Uganda. To address the situation and improve the management of DM and DR services in Uganda, participants made the following recommendations.

1. a)

   Priorities, policies, and programs: participants recommended the urgent implementation of the national program on diabetes, increased dissemination of DM and DR management guidelines through job and desk aids, updating the Uganda Clinical Guidelines (UCG) booklets, and training existing healthcare professionals in DR management. These priority actions should be implemented by the Ministry of Health with support from international NGOs, development partners, health care workers, and hospitals.

2. b)

   Service delivery: participants recommended that urgent attention be paid to the provision of screening tools at lower-level health facilities, raising awareness of the availability of specialized DM clinics, and promoting collaboration between DM and DR care services in the health facilities through sharing records and provision of DM and DR services on the same clinic day. Some participants suggested the need to share patient records between diabetic and eye care services, or vice versa. To support the implementation of these recommendations, research is needed to empirically document healthcare providers’, policymakers’, implementing partners’ and clients’ perspectives and resource needs to provide integrated DM and DR services in Uganda.

3. c)

   Health workforce: during the meeting, participants updated the list of the available workforce for diabetes management to include physicians, medical officers, clinical officers, and nurses. The workforce available for diabetic retinopathy was also updated to include ophthalmologists, ophthalmic Clinical Officers, Optometrists, and ophthalmic nurses. However, given the inadequencies in the health workforce especially outside the Capital City (for instance, as of 2020, there were only 15 Optometrists in Uganda; of these, more than half were based in Kampala, the Capital City), participants called for the need to focus on in-service training of existing health workers, equipping health facilities with the necessary equipment such as ophthalmoscopes and mydriatic drugs and strengthening the referral system. However, at the moment, it is difficult to tell how many of the essential DM and DR health workforce positions have been filled to-date. We receommend that a health workforce assessment be conducted to document the exact positions filled and those that are still vacant, as well as the training needs of existing staff with regard to DM and DR management to inform proper planning for continuous medical education.

4. d)

   Health technology: participants suggested that basic equipment should be made available to all mid-level eye care workers to screen DM patients for DR and that training and mentorship should be provided to physicians so that they can perform the screening. The basic equipment needed, as suggested by the participants, were direct ophthalmoscopes that use dry cells, mydriatics, torch, glucometer plus strips, and blood pressure machines. The most common procedure suggested was dilated fundus examination, which can be performed by mid-level eye-care workers. Participants called for the need to integrate technology into eye care, for example, the fundus photograph can be taken and sent to ophthalmologists. This can be achieved using fundus cameras, an innovation already in place at Mbarara University of Science and Technology.

5. e)

   Health information management system: because the prevalence of diabetes is known, the need to know the prevalence of DR was ranked first. The priority areas for action were: (1) non-communicable disease data should be separated from communicable disease data so as to have data on individual conditions such as diabetes, diabetic retinopathy, and hypertension; (2) continuous professional development on how to use the data collection tools should be provided to the health workers; and (3) there should be regular dissemination of data collected by the Ministry of Health and resource centers. In general, periodic surveys (e.g., after every five years) should be conducted to generate data on the prevalence of DM and DR in the country. When such data have been generated, they should be disseminated widely and used to inform adjustments in the provision of both DM and DR services in the country.

6. f)

   DM and DR health promotion: participants identified health workers (village health teams, clinicians, nurses, ophthalmologists, and physicians), community leaders, local councils and religious leaders, ministries [Ministry of Health, Ministry of Education and Sports, Ministry of Agriculture Animal Industry and Fisheries], mass media and local theatre as being at the center of DM and DR health promotion. They recommended that information, education, and communication materials be distributed in the communities in the language understood by community members and that information on DM and DR be given to all patients through health education and billboards.

7. g)

   Health financing: participants agreed with the finding that patients meet majority of the costs for DM and DR services. Participants recommended the integration of diabetic and diabetic retinopathy services (e.g., same-day visits to both clinics) so that patients do not have to pay separately for DM and DR services. Participants called for the increased availability of ophthalmic clinical officers, ophthalmologists, and specialized diabetic treatments such as laser photocoagulation and in vitro retinal surgery within government facilities as some of the cost-cutting measures. Given that the health expenditure reported in this report is based on the opinions of those interviewed, studies are urgently needed to determine patients’ catastrophic expenditure on DM and DR services in order to inform efforts to subsidize these costs. It becomes difficult to advocate for reductions in patient costs when the actual costs spent by the patients to receive these services are not known.

We assessed stakeholders’ perspectives on the status of DM and DR health service management systems in Uganda using the WHO-validated TADDS questionnaire. It is important to note that the opinions expressed in this paper are those of the respective stakeholders who were interviewed and do not represent official statistics or empirical data about the DM and DR health service management system in Uganda. For this reason, future research to quantify most of the programmatic issues that affect the provision of DM and DR services is urgently needed to guide proper planning and implementation of ophthalmology services in Uganda. In the meantime, however, our TADDS findings can provide a useful starting point to inform adjustments in the management of DM and DR patients in Uganda. In general, our findings show that although diabetes mellitus is a recognized non-communicable disease in Uganda, the country lacks a budget for the management of DM and there is no guiding program for its control and management. There is limited stakeholder involvement in diabetes mellitus programming. Also, while DR is a recognized complication of diabetes mellitus, its prevalence is unknown and information about its management is not readily available. Collectively, our findings suggest a need for urgent interventions to improve several aspects that affect the management of DM and DR services in Uganda. Some of these aspects are discussed below.

4.1 Access and availability of DM and DR services

While DM screening is largely available at many health facilities (both public and private), DM management is considered as a specialized service that is mainly offered in Regional Referral Hospitals, Mulago National Referral Hospital, big private hospitals and Private-Not-For-Profit hospitals. Access to this care is by referral from general physicians to a designated clinic (the Diabetic Clinic) when the required specialists are available. Only a small proportion of those in need can access the service, with the majority constrained by lack of transport to make separate and frequent clinic trips, the cost of the service (much of the cost is met by the patient in buying drugs and paying for investigations) and the limited number of providers (the management of DM is only done by specialists). Diabetic retinopathy is, on the other hand, a super-specialized service that is almost only available at Mulago National Referral Hospital, Mengo Hospital and two specialized large private hospitals (ASG Eye Hospital-Kampala and Agarwal Hospitals-Kampala). All the other centers do not have the required personnel and equipment and thus can only refer, but the cost of care remains the biggest challenge to access. The Ministry of Health should prioritize the need to expand DM and DR service availability through increased staffing at the lower-level health facilities, provision of the essential equipment and supplies, cross-training of existing staff in DM and DR management, and subsidization of patient costs through provision of integrated DM-DR services to reduce the frequency of patient visits to the health facilities.

4.2 Health information management

Although Uganda has made some efforts to establish the burden of diabetes [18], this information is not only old but is available only to a few stakeholders at the national level. The majority of those who would contribute to better programming do not have this information and thus are not part of any efforts to improve the DM health indicators. There are no documented data collection plans for DM care and its indicators are not part of the District Health Information Systems software, version 2 (DHIS-2). The common data collection tools found at health facilities are patient cards and/or books carried by clients, leaving no clear record at the facilities that can serve as a reference data source. On the other hand, hospitals also do not have any documented data collection plans thar they can use to collect DM data. The lack of data on DM and DR care and treatment makes it hard to plan and set up programs to manage these diseases [18]. There is a need to set up systems to manage these diseases through an integrated disease management system that incorporates other NCDs.

4.3 Financial management

Diabetes management is largely underfunded; no government funding is earmarked for DM care except for the provision of some drugs when ordered by health facilities, some basic equipment, and basic inpatient care. This is largely an out-of-pocket expenditure, and a large proportion of patients in need of these services seek them from private hospitals, private-not-for-profit hospitals, clinics, and pharmacies. Government facilities can screen for DM; however, further management is limited. The small funds that come through the NCD program are earmarked for Cancer and Heart Institutes, other NCDs are not prioritized. We recommend that the government of Uganda sets aside funding to support the strengthening of DM and DR management systems in order to improve access to and eventual utilization of these services by those in need of them.

4.4 Human resource management

There is a general scarcity of human resources to provide the required DM care to support the management of eye complications. For instance, as of 2023, Uganda had 51 Ophthalmologists and five Vitreoretinal Surgeons; most of whom are based in Kampala, the Capital City of Uganda, or in the Western Uganda where programs such as SightSavers operate. Opportunities for continuous professional development are also limited and depend on the innovativeness of the individual health facility. Scarcity of the human resources for management of DM and DR translates into inadequate care and management of these diseases. The Ministry of Health should aim to improve staffing levels for DM and DR services, conduct cross-training of existing staff to manage DM and DR services, and conduct a health workforce audit to determine filled and unfilled positions and plan to recruit essential staff to fill unfilled positions, especially at the lower-level of care.

4.5 DM-DR integration

Poor collaboration and stakeholder engagement is detrimental for DM patients given that some of the DM complications such as DR are handled by other specialists in the same care setting [19]. Yet, in Uganda, DM and DR services continue to be provided as parallel rather than integrated disease programs, even in cases where both diabetic and eye care clinics exist in the same hospital. It is important to note, however, that a few centres such as Mengo Hospital have initiated some collaboration and are working towards establishing a centre of excellence in eye care which will have a section focusing on diabetic retinopathy and will be working in close collaboration with the DM specialists in the Hospital. Similar efforts can be initiated in the other health facilities with support from development partners. To this end, research is urgently needed to document healthcare providers’ and clients’ perspectives on the provision of integrated DM and DR services so as to inform the design and implementation of integrated DM-DR services in Uganda.

4.6 Creating awareness on DR and DM

Increasing awareness of DM and DR leads to enhanced case identification of both diseases [20]. There is increasing awareness of DR and DM in Uganda, although this is still limited to flagship days such as the World Diabetes Day (WDD) and World Sight Day. The Ministry of Health runs a message in national newspapers, TVs, and radios to educate the public about DM and its complications and where clients should seek care. There are also awareness talks and service camps during the celebration week. However, most of the stakeholders thought that there is very little coverage about DR and DM, camps and walks are only done in the celebration districts, and the messages in the national media are only broadcast once a year. Several respondents reported that they were unsure of what happens on such days. They recommend more regular sensitization, rolling out the service camps to more districts, making use of the health facilities, and involving NGOs. There is also need for improved collaboration in the organization of the flagship days since, at the moment, the World Sight Day barely includes any awareness sessions on diabetes while the World Diabetes Day has a very limited involvement of ophthalmologists. There is also a need to assess the current knowledge of DM and DR in the general population as well as people’s preferred channels of communication. This will enable the stakeholders to develop targeted messages to improve the knowledge about DM and DR in the country.

4.7 Study limitations and strengths

This assessment had a number of limitations and strengths. First and foremost, the findings reported in this paper are based on the expert opinions of the stakeholders that responded to the questions in the TADDS questionnaire. Similarly, any other additional insights that emerged during the national validation meeting are also based on the expert opinions of those who attended the meeting. However, since the opinions were derived from experts involved in ophthalmology care, we believe that their opinions, although qualitative in nature, project an image of the status of the DM and DR health management systems and can help to inform critical areas for improvement. The strengths of this assessment lies in the fact that this is the first-ever assessment of the DM and DR health service management systems in Uganda, and we believe that the insights shared in this report can help to point out areas that require further research in this field. For instance, while key stakeholders referred to the categories of healthcare professionals available to offer ophthalmology services in Uganda, there is a need for a human resource audit to determine what positions are filled at the different levels of the health system to inform recruitments and revisions in the staffing norms. Also, a national health sector review that examines critical ophthalmology service packages including logistics/equipment available at each level of the healthcare system, services currently provided, client load, funding allocation, and health information management, among others, should be conducted as soon as possible to inform improvements in the provision of diabetes and diabetic retinopathy services in Uganda.