Status of Health-care Systems for Diabetes Mellitus and Diabetic Retinopathy in Jordan: Stakeholders and Health-care Providers Survey

Abstract

PURPOSE:

The purpose of the study was to evaluate the status of health services for diabetes mellitus (DM) and diabetic retinopathy (DR) in Jordan in terms of availability and accessibility by interviewing people engaged with health-care process including decision makers, professional providers, and community representatives.

METHODS:

This is a qualitative study where participants were invited to respond by direct interview to a standard questionnaire that is validated by the World Health Organization (WHO), “Tool for Assessment of Diabetic Retinopathy and DM Management Systems”. The questionnaire casts out of the WHO Health Systems Framework concept, assessing the presence of programs, guidelines, health technology and workforce, health promotion, and financing of DM and DR care in Jordan.

RESULTS:

Forty-two participants were included. DM is considered as priority in Jordan, but no programs are implemented. National guidelines are present for DM but not for DR. Networking should be improved between different disciplines caring for DM and DR. Human resources for DM and DR care were found insufficient and inadequately distributed. Health technology is only present in major cities and central hospitals. There is no nationwide data on disease burden nor a screening program for DR. More collaborated efforts should be spent on health education and raising awareness among people living with diabetes about the risk of DR.

CONCLUSION:

Advanced DM and DR care is not accessible to most people. Programmatic efforts from the government and NGOs must formulate a national action plan to reduce the human and financial impact of the disease in Jordan.

Introduction

Diabetes mellitus (DM) is a global health issue with significant mortality and morbidity. It is estimated by the International Diabetes Federation to have more than 600 million patients with DM in 2040.[1] Diabetic retinopathy (DR) is one of the most important microvascular complications of DM.[2,3,4] In Jordan, DM is estimated to affect 23.7% of the population,[5] whereas DR is estimated to be present in 34.1% of patients with diabetes.[6] DR is found to be a major cause of blindness and visual impairment in Jordan according to different studies.[7,8,9]

Jordan is a middle- to low-income country where about 82% of the population is covered by formal health insurance. The Ministry of Health (MOH) is the largest health-care provider in the country, with additional services provided by other specific bodies such as Royal Medical Services, university hospitals, and private sector. Eye care is provided at secondary and tertiary health-care level by dedicated eye care centers and hospitals. At the primary health-care centers, the eye examination is poorly offered, and there is no eye health promotion provided. Eye surgery is mainly done at eye departments of major tertiary hospitals, whereas other smaller hospitals do not have adequate equipment and facilities for advanced eye surgery such as vitreoretinal surgery for DR.

The purpose of the current study is to evaluate the status and accessibility of health services for DM and DR in Jordan by interviewing people engaged with health-care process at various levels including stakeholders, endocrinologists, ophthalmologists, and community representatives. We utilized a special questionnaire designed by the World Health Organization (WHO), “Tool for Assessment of Diabetic Retinopathy and DM Management Systems” (TADDS)[10] to obtain participants’ insight into different aspects of health-care process.

Methods

This project aims at assessing the availability and accessibility of management services for diabetes and DR in Jordan and to evaluate the level of cooperation and synergy between these two branches of health care. WHO has designed TADDS assessment tool to assess the level of awareness and level of service of Diabetes and DR in Jordan. The study was approved by the Institutional Review Board of our institution, and it adhered to the guidelines of the Declaration of Helsinki.

TADDS survey items include the following themes, which were guided by the WHO Health Systems Framework: service delivery, health workforce, health information management systems, medical products and technologies, health financing, and leadership and governance. The primary objectives of the TADDS are to assess the level of DM and DR care in terms of availability and accessibility for patients in need in a specific region. In addition, it evaluates the effectiveness of the linkage between different disciplines caring for DM and DR, the possible challenges exist, and how to overcome them. All that information is gathered and conveyed to policymakers and health planners to formulate action plans and improve the level of care.

Data from the TADDS tool were gathered by conducting interviews with various categories of people taking care of Diabetes and DR in Jordan. A comprehensive list of interviewees was formulated that included people at different levels of care: administrative, decision-makers, physicians, and NGO across the whole Jordan. Interviewees were contacted by phone first to inform them about the project, set an appointment for the interview, and get initial approval to be invited to the final workshop. A copy of the TADDS tool is sent by e-mail, when appropriate, before the interview to give the interviewee time to read TADDS questions and prepare answers. All participants signed a written consent before conducting the interview. Interview was conducted by two investigators by direct face-to-face encounter with an average duration of 1 h, during which several aspects of the TADDS questionnaire were discussed and answers to questions were transcribed into TADDS form at the same time. Data were analyzed, and scores were figured out by a specialized independent investigator. All results and scores were shared among participants, and a comprehensive workshop was held to discuss the outcome of the survey, set up priorities, and formulate an action plan.

Results

A total of 50 participants were contacted to participate in the study. Forty-three (86%) agreed to respond to our questionnaire. Table 1 shows the number of participants and distribution among categories. The final scores given to each category were studied for all the cohorts and for each category of participants.

Table 1.

Participants per categories

Participants		n (%)
Policymakers		9 (21)
Endocrinologist		11 (25.5)
Ophthalmologist		11 (25.5)
Family medicine		7 (16)
NGO		5 (12)
Total		43 (100)

NGO: Nongovernmental Organizations

Fifty-six percent of respondents reported that DM is considered a national priority, with national plans set but no programs are implemented. Furthermore, 47% reported that MOH guidelines have been set but caregivers are unaware of their existence, and so they are not utilized in practice. Some participants mentioned “Guidelines for Management of Diabetes in Primary Health Care” as their clinical guidelines in the management of DM. However, regarding DR guidelines, more than 50% of participants mentioned that there are no MOH-recommended guidelines [Table 2]. Most ophthalmologists use international guidelines such as the International Council of Ophthalmology guidelines or European guidelines.

Table 2.

Percentage of participants among all categories who agreed with the conclusion of the study during the workshop

Findings as the study cohort agreed on in the final workshop		Policy makers (%)		Endocrinologists (%)		Ophthalmologists (%)		Family medicine (%)		NGO (%)
DM is a priority; there is a national plan, but no specific program is implemented		33.3		63.6		63.6		85.7		60
MOH guidelines have been set but health professionals are unaware of them, and they are not widely followed		22.2		45.4		27.2		100		60
There are no MOH-recommended guidelines		44.4		77.7		63.6		57.1		0
Services for DM do not reach all people although they are available everywhere		55.5		70		36.3		14.2		25
Services for DR do not reach all people although they are available everywhere		44.4		80		0		60		50
Patient-centered care is provided by a few centers		55.5		33.3		50		100		33.3
Few human resources are available due to lack of training		44.4		33.3		36.3		66.6		33.3
Proper examination equipment is available only in major hospitals and private clinics		33.3		60		83.3		63.6		33.3
Either the prevalence of DM or DR is not, and patient’s records are not used		44.4		77.7		60		45.4		66.6
Education and health-related information about DM and DR are provided to the community occasionally on national media mostly		50		40		60		50		50

^aThese findings were derived from the TADDS Questionnaire designed by WHO.[10] DM: Diabetes mellitus, DR: Diabetic retinopathy, NGO: Nongovernmental Organization, MOH: Ministry of Health, TADDS: Tool for Assessment of DR and DM Management Systems

In the service delivery section, 86% of our cohort reported that the service for DM is not available everywhere or not accessible to everybody when it is available. Rural areas have been reported to suffer the most from either lack of services or the inability of people there to easily reach medical services. Concerning DR screening services, 50% of the participants reported that services for DR do not reach some of the population. They are available in most areas providing care at different levels; however, costs and transport are barriers for some patients. A significant percentage (40%) of participants reported that DR service is not available everywhere, and certain areas such as rural areas are deprived of such services. Most ophthalmologists (64%) do not think that there is any screening program for DR that is implemented in Jordan. Most of the respondents (55%) believe that few centers provide patient-centered care where both physicians and ophthalmologists collaborate actively to provide optimum patient care.

Regarding the Health workforce section, we asked participants about the availability of training opportunities for DM and DR caregivers. 42% believe that the training of medical staff is inadequate, which results in fewer than needed medical personnel. Most responding physicians (ophthalmologists/endocrinologists/family doctors) fall within that group. Another 42% of participants considered training opportunities to be available but only in large hospitals and major cities.

We asked our cohort about the availability and accessibility of health technology. Participants agreed that certain laboratory tests such as fasting blood sugar and HgA1c are available in addition to basic ophthalmologic examinations such as slit lamp and dilated fundus examination. Fifty-six percent of them reported that such examination technology, including retinal imaging and sophisticated laboratory testing, is not available in all hospitals but only in major private clinics and hospitals [Table 3].

Table 3.

Barriers against providing patients with proper service for diabetes mellitus and diabetic retinopathy

Transport

Insurance

Cost of service

Availability of specialties

Over-crowded clinics

Concerning the health management and information systems which assessed the presence of good evaluation of the disease burden of DM and DR, in addition to assessment of available tools to follow-up on patients. 57% of our cohort reported that information about the prevalence of DM and DR in Jordan is lacking. Furthermore, they mentioned that patients’ records are not utilized for assessment of the prevalence of DM or tracking patients for the development of DR. Forty-nine percent of respondents mentioned that education and health-related information provided to patients and the community on DM and DR are limited to national level media, with inadequate coverage for all areas of Jordan.

Discussion

DM and DR are two major health problems in Jordan with high prevalence. More than two-thirds of the countries worldwide and almost half of the countries in the Eastern Mediterranean Region have guidelines for the management and prevention of DM.[11] According to an official report by WHO named "The Strategic plan of MOH"; Jordan considers DM as a priority and has developed a national strategy and an action plan against DM.[12,13] According to our cohort, the majority of respondents agreed on the presence of a national plan against DM; however, no programs are implemented, and physicians are not aware. This is similar to the situation in other countries such as Cameron and Nepal.[14,15] Despite being the second cause of blindness in Jordan,[7] there are no guidelines for the management of DR and its complications. In countries where DR guidelines are available, ophthalmologists are still unaware of those guidelines.[11] Establishing clear guidelines for the management of DR is crucial in Jordan to evaluate the standard of quality of services provided in diagnosis and treatment.

There is a considerable shortage of medical services for both DM and DR in Jordan according to our study. Most medical services are centered in urban areas, whereas people in remote rural communities find it difficult to reach out to those advanced services. Barriers to reaching medical services were mostly related to cost and transportation issues. This is a common situation in other countries with similar socioeconomic situation.[14,15] Furthermore, Jordan lacks a community-based screening program for DR, and patients with DM are not routinely referred for ophthalmic examination as recommended. This is related to lack of effective equipment, inadequate staff, and lack of proper education of both care provider and patient and lack of such requirement in national DM care guidelines. To mitigate the urban– rural divide, the use of teleophthalmology could be considered while developing required human resources. This has been utilized extensively in other countries and has shown a huge benefit in cutting costs and maximizing early detection of DR.[16,17,18,19] The other issue that was considered importance in the proper management of DM and DR is the relationship between DM care and DR care. It has been shown by several studies the importance of multidisciplinary approach for the management of DM and its complications.[20,21,22,23] According to our study, most participants believe that there is a poor referral cycle between endocrinologists and ophthalmologists for proper management of DR. We believe that this relationship should be strengthened, and comprehensive DM management centers should be established in different areas of the country. Currently, Jordan has few such centers and most of them are in one city, Amman. To explore the advantages and costs of creating such DM patient-centered care centers, national NGOs can play the role of exploring and piloting them and share the results of their outcomes.

In addition, proper management of DR and DM needs enough number of trained staff. The physician-to-population ratio is 24.5 per 10000, one of the highest among countries in the region. However, human resource development assessments supported by WHO (1998) and USAID (2004) showed defects in human resources management, including recruitment, hiring, transfer, promotion, job description, and performance management. In addition, a continuous education system is not available, and the relationship between health service provision and pre-service training institutions is not strong.[12] Our results strongly highlight the importance of providing healthcare professionals with proper training and educational support, especially in non-central areas where the provision of medical services is still weak.

The prevalence of DM has been studied in Jordan previously.[5,24,25] However, large-scale, community-based studies to estimate the prevalence of DR are lacking in Jordan. Over the past 10 years, public hospitals are shifted to electronic medical records, which will help in conducting studies to capture requests for services, effective service provision, quality of follow-up care, need for intervention, and establish a recall system for eye examination.

Raising awareness among patients is key to reducing the impact of DM and DR. There is a considerable lack of awareness and knowledge about DR. Both patients and physicians need to be educated about the necessity of regular eye examination and the importance of early referral. Media campaigns, educational sessions at clinics during routine visits, flyers and brochures, and direct patient communication should be implemented to raise awareness levels.

The majority of patients in Jordan (82%) have some kind of medical insurance. However, the wide-scale availability of medical insurance, especially the public one, will overload the public sector and create long waiting lists for clinic appointments and surgery scheduling. It will also exhaust personnel and accelerate the depreciation of medical equipment that is available in public hospitals which are already suffering. To ensure that timely retinal examinations are done in patients with diabetes, involving the private sector in treating government-insured patients and providing them with fair reimbursement. That will allow patients to benefit from advanced technology available in private hospitals and reduce the burden on government-run hospitals by improving clinics and surgery scheduling.

This study has several limitations. This is a qualitative survey where answers are provided by respondents based on personal experience and beliefs. Although various categories are represented, but number of participants is small to comfortably generalize the results. Further large-scale, nationwide research is needed to validate our results and initiate an action plan to combat the risk of DR and DM in the Jordanian population.

Conclusion

This study aimed at assessing the situation of DM and DR care in Jordan as visioned by people that are involved and stakeholders. To improve care for patients with DM and DR, the participants of the final workshop recommend to formulate and implement an action plan that may include: providing the main comprehensive health centers and peripheral hospitals with nonmydriatic fundus camera systems to start screening diabetic patients and grade the photos remotely (real-time reading, artificial intelligence assisted reading, etc.), establishing mobile clinics that are equipped with the necessary equipment to test for DM and retinopathy covering all three regions of Jordan, formulating a task force under the auspices of the MOH and supported by the WHO to prepare a plan and do the required actions for health promotion and screening, and finally, collaborated efforts of endocrinologists and ophthalmologists to establish training programs to train GPs and nurses on how to communicate with patients with DM and increase the awareness about the importance of retinal examination.

Financial support and sponsorship

This research is funded by Lions Club International Foundation/UAE, Premier Lions Club Diabetic Retinopathy Initiative.

Conflicts of interest

There are no conflicts of interest.