SUDANESE JOURNAL OF PAEDIATRICS

2021; Vol 21, Issue No. 2

ORIGINAL ARTICLE

Establishing paediatric endocrinology services in a limited resource country: experience from Sudan

Mohamed Ahmed Abdullah (1), Ghada H.A. Elhassan (2)

(1) Department of Paediatrics and Child Health, Faculty of Medicine, University of Khartoum, Sudan

(2) Gaafar Ibnauf Children’s Hospital, Khartoum, Sudan

Correspondence to:

Mohamed Ahmed Abdullah

Department of Paediatrics and Child Health, Faculty of Medicine, University of Khartoum, Sudan

Email: mohameabdullah [at] hotmail.com

Received: 14 January 2021 | Accepted: 3 October 2021

How to cite this article:

Abdullah MA, Elhassan GHA. Establishing pediatric endocrinology services in a limited resource country: experience from Sudan. Sudan J Paediatr. 2021;21(2): 116–122.

https://doi.org/10.24911/SJP.106-1610648000

ABSTRACT

Non-communicable diseases including paediatric endocrine disorders are becoming another health burden in the developing countries. No published data on the magnitude of the problem and pattern of cases is available from Sudan as there was no organised paediatrics endocrinology service before 2005.The objective of this study was to see the number and pattern of cases which were seen over the first 10 years in our unit which was established from scratch in 2006. Before starting the unit, a situational analysis was made, and proposal showing the objectives and needs was written. Staff was trained, equipment, investigative facilities and medication were secured gradually, management guidelines and protocols were written taking into consideration the available facilities. A unit registry was created. The unit registry and medical records of patients seen between 2006 and 2015 were reviewed. During this period a total of 7,306 cases were seen, 4,735 endocrine and 3,131 diabetics. A separate unit solely devoted to paediatric endocrinology was established, and multidisciplinary staff including 13 paediatric endocrinologists, were trained. Nationwide diabetes program was established. Research work is being done. Currently, we have started a local paediatric endocrinology fellowship program. Pediatric endocrine problems are common in Sudan. We plan to make services available, accessible and affordable in all of the states of Sudan. This needs collaboration between the government and local and international societies.

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KEYWORDS

Paediatrics; Endocrinology; Sudan.

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INTRODUCTION

Current literature indicates that non-communicable diseases are becoming another important health burden in the developing countries including Africa [1]. Childhood diabetes and other endocrinological disorders are among these problems [1]. Therefore, a lot of efforts are being made to help these countries to establish these services [1], including securing facilities, training, writing books and management guidelines to suit practice in such settings [2,3].

Sudan

The Republic of Sudan is located in North East Africa south to Egypt and north of Southern Sudan. Its area is 670 thousand square miles inhabited by 43.2 million people; one-third of whom are urbanised and the rest live in the rural areas. It has 18 states [4]. The Sudanese people boast major ethnic groups, including Nilo-Saharan, Afro-Asiatic and Niger-Congo [5] with hundreds of subgroups. The consanguinity rate is 60%-80%. The main languages are Arabic and English with hundreds of tribal languages and dialects. It is considered as a low-income country particularly after the secession of Southern Sudan which took most of the petroleum resources. The health budget is less than 6% of the total budget, per year [4]. The health system is composed of primary, secondary, and tertiary care centres. Children under five are supposed to have free service and the health insurance overage varies from 30% to 70% [4].

Diabetes and paediatric endocrinology services in 2005

Apart from two small diabetes clinics which were run by general paediatricians, there was no paediatric endocrinology clinic as no paediatric endocrinologist was staying in the country and cases were seen either by general paediatricians or adult endocrinologists. There were no multidisciplinary teams, management guidelines or protocols, or laboratory facilities. Drugs including insulin were difficult to get and were paid for. There was no data on the magnitude of the problem. All services except for one diabetic clinic were located in the capital city. Adolescents were at a loss. To the government, non-communicable diseases was not a health-care priority. Many capable families used to travel abroad seeking medical care.

This article tries to share the experience of establishing paediatric endocrinology services from scratch in Sudan, a resource limited country, with emphasis on how to overcome barriers; hoping it to be useful for our colleagues who work in similar settings. Our detailed experience with diabetes will be addressed elsewhere.

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MATERIALS AND METHODS

Based on the situational analysis, a proposal was submitted to the administration of the main referral children’s hospital (Gaafar Ibnauf), including justification, objectives, requirements of space, staff, equipment, laboratory facilities, basic medications, the scope of care and plans. The idea was welcomed. However, there was no special budget, space, ward, trained staff and laboratory facilities for endocrine tests or medications. Also, we had to do general paediatrics and take general paediatrics on calls. The options were either to get frustrated and leave the country again (which is called the new corner’s syndrome) or stay back and face the challenge. For many reasons, the option was for the latter.

At the beginning, we were offered a ward with two beds, a small office, an- unventilated outpatient clinic room with an adjacent verandah for residents to sit and clerk patients. Staff-wise a newly graduated general paediatrician (GHAE, the co-author), four residents, three interns and three nurses were appointed. There were no laboratory facilities for endocrine investigations or medications in the hospital.

The whole team was put together and given a 2-week intensive course on diabetes and endocrinology. Anthropometric equipment including infantometers, stadiometers, and orchidometers was made locally using wood and aluminium. Locally adapted protocols, management guidelines, and health education materials were written. An endocrine laboratory was set through the help of the World Diabetes Foundation (WDF). Investigations including haemoglobin A1c, microalbumin, thyroid functions, bone profile, growth hormone, cortisol, luteinising hormone (LH), follicle-stimulating hormone and sex hormones were made available either free or at an affordable cost. Through approaching the State Government insulin was secured free of charge. Radiology imaging facilities including magnetic resonance imaging, computerised tomography scan, ultrasound scan and nuclear scans were available in the private sector. Poor children were helped through fundraising and opening a bank account. Other investigations such as karyotyping were done locally in the private sector or abroad. We still face problems securing some medications, such as fludrocortisone and diazoxide.

By discussion with the Government and Federal Ministry of Health, some expensive medications such as growth hormone, LH-releasing hormone, and vitamin D analogues were secured free of charge to the children. Facilities were not locally available for molecular genetics; however, we managed to make links with some international centres to do it for us either free (e.g., Exeter genetic centre for rare diabetes) or on a research basis.

Almost 13 paediatric endocrinologists were trained in Paediatric Endocrine Training Centre for Africa in Nairobi (Kenya) and one in Saudi Arabia. Eight of them immigrated to the Gulf due to poor salaries. To overcome this, we recently started a local Pediatric Endocrinology Fellowship Training Program of 2 years duration in Sudan Medical Specialisation Board. Training is done by local and international tutors. The first batch of three graduated in February 2020. Nurses’ dieticians, social workers, and others are trained locally through short courses. This allowed us to open a second paediatric endocrinology clinic in another city and hopefully, soon we will open and/or be able to run out-reach clinics in other parts of Sudan.

Also, we now have subspecialty clinics such as disorders of sex development and bone disorders as well as adolescent and transition clinics. In the unit, we train rotating general paediatric residents, paediatrics and adult endocrine fellows in addition to undergraduates. Our staff has access to the European Society of Paediatric Endocrinology (ESPE) e-Learning website, Health Inter-Network Access to Research Initiative (HINARI), and others. With the help of the European Society of Pediatric Endocrinology and Pediatric Endocrine Society, our fellows had opportunities to spend some time in centres of excellence in Europe and the USA.

Table 1. Guidelines for raising funds.

* Form board of trustee.

* Select a project.

* Write a clear proposal.

* Communicate with donors and be selective.

* Utilise the media.

* Give follow-up and progress reports.

* Write clear management policies - but don't spend too much money on this part.

* Document your work clearly and be honest and transparent.

* Give feedback and thank the donors and invite them to see what you have done.

Overcoming barriers

One of the major barriers was poverty. Two societies were established, the Sudanese Childhood Diabetes Association (a non-governmental organisation) and Sudan Society for Paediatrics Endocrinology and Diabetes. We opened a bank account to help the poor and secure facilities. Funds were raised from local and international donors. Guidelines for raising funds are shown in Table 1. Many references show how to raise funds [6]. Various community groups including women and youth groups were involved. The government is an important stakeholder. Politicians including members of the parliament were approached. Table 2 shows how to deal with government officials and politicians.

It is very important to create links with similar and relevant local, regional and international societies. They are very helpful. We have links and collaboration with the ESPE, International Society for Pediatric and Adolescent Diabetes, Paediatric Endocrine Society in the USA, Global Paediatric Endocrinology and Diabetes Group, African Society for Paediatric and Adolescent Endocrinology, and Arab Society for Paediatric Endocrinology and Diabetes.

Table 2. Dealing with politicians and government officials.

* Find out an influential person who knows them including their families.

* Use the media and community groups.

* Behave politically and be respectful.

* Show the problem and your needs clearly and support that with figures.

* Give clear answers to the problem.

* Don’t get frustrated if you face a delay or obstruction; be tolerant.

* Give progress reports.

* Be thankful; show that personally and in media.

* Give feedback and thank the donors and invite them to see what you have done.

Many foundations including WDF, Save a Child Program, Changing Diabetes in Children, in addition to many drug companies such as Novo and Lilly, gave us great help. International bodies such as WHO and The United Nations Children’s Fund are helpful. Variable research institutions and universities such as Exeter genetic have helped us a lot in training and research work. We have got many regional and international expert visitors including Sudanese endocrinologists in the diaspora who mostly come voluntarily to teach, see patients, and examine the candidates.

Research work

A lot of research work is done by the residents, fellows and staff in addition to the other multidisciplinary team members in collaboration with local and international bodies, including molecular genetics, e.g., on congenital hypothyroidism [7,8].

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RESULTS

Clinic profile

From January 2006 to December 2015, 7,366 cases were registered in our clinic, 4,735 endocrine, and 3,131 with diabetes. This number has reached almost 10,000 now. Table 3 shows the types of endocrine cases. Growth disorders, particularly short stature, are the commonest cause of referral including some cases of Laron syndrome.

We do not have a neonatal screening program for congenital hypothyroidism; therefore, we see many missed cases (total 321). Unlike the experience in the West and due to high consanguinity rate, more than 50% of our cases are due to dyshormonogenesis [5] with some novel mutations [7,8]. We had 91 cases of hyperthyroidism. Although tests for antibodies are available, they are expensive and therefore quite often differentiation between Graves and Hashitoxsicosis is made on clinical grounds. Treatment facilities including medications, radio ablation, and surgery are available. Endemic goitre is an important cause of congenital and acquired hypothyroidism in Sudan, both due to iodine deficiency and consumption of millets [9,10]. Thyroid carcinoma is rarely seen. Disorders of sex development are quite common. Therefore, we established a separate clinic run by a multidisciplinary team. Our experience of this has been published elsewhere [11]. Apart from congenital adrenal hyperplasia (152 cases), we encountered 75 cases of primary adrenal insufficiency including genetic forms such as Allgrove syndrome and adrenal leukodystrophy. The aetiology of many cases is not yet established because of the lack of facilities including molecular genetics. Cushing syndrome due to adrenocortical carcinoma is not uncommon. Facilities to treat Cushing syndrome including trans-sphenoidal surgery are available. However, we do not have access to petrosal sinus sampling. The prevalence of nutritional obesity and type 2 diabetes is increasing [12], in addition to monogenetic forms of obesity. In a country with high consanguinity rate, it is not surprising to see high numbers of metabolic disorders and syndromes. Though Sudan is a sunny country, many cases of vitamin D deficiency rickets are seen [13,14], because of urbanisation and more people living in flats and also city slums. This is in addition to various forms of genetic rickets and other bone disorders such as osteogenesis imperfecta and skeletal dysplasia. For that reason, we have established a bone clinic in collaboration with paediatric orthopaedic surgeons.

Table 3. Categories and numbers of endocrine disorders.

Category	Number	Percentage
Growth and puberty	1,060	22.4
Thyroid	860	18.2
Disorders of bone and bone mineral metabolism	600	12.7
DSD	234	4.9
Adrenal	266	5.6
Anterior pituitary	121	2.5
Posterior pituitary	9	0.2
Obesity	323	6.8
Metabolic disorders and syndromes	1,262	26.7
Total	4,735	100

DSD; Disorders of sex development.

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DICUSSION

Non-communicable diseases, including endocrine disorders, are becoming another health burden in developing countries. Nevertheless, data on this subject are scarce. This is the first report of its kind from Sudan where organised paediatric endocrine services were not existent therefore our clinic was started from scratch; a situation that will be faced by many of our colleagues in Africa.

On starting such subspecialty service, one is likely to be faced by resistance as general paediatric problems including communicable diseases and malnutrition are usually given priority and there is hardly any budget that is allocated to non-communicable diseases. However, by writing proposals showing justification, clear objectives, and needs in addition to starting with whatever available resources it is not difficult to convince the administrators as we have done. Some tools like anthropometric equipment can be made using cheap local materials. Staff can be trained locally to meet the immediate needs until more properly trained and certified cadres are made available.

In a poor country where there is no specific budget for such services, it is very important to find means of overcoming barriers as mentioned above, raising funds, establishing non-governmental organisations, involving the community, collaborating with the government and politicians in addition to creating a link with relevant international societies and institutions is very important both for helping in securing facilities, training and doing research work. This was of great help to us.

The commonest endocrine problem is diabetes which we have not discussed in detail here as that was a national program which covered all the country that we executed and will be addressed elsewhere. Growth disorders are the next commonest. This is because of more public awareness, height consciousness and perhaps the availability of growth hormone which was provided free of charge. However, many of these cases could have been handled by general paediatricians with more training, securing anthropometric tools and growth charts and this is what we are trying to do now.

Thyroid disorders come next. Unfortunately, we do not have a neonatal screening program for hypothyroidism. For many reasons including cost, high rates of home deliveries and accessibility to patients, it would be very difficult to establish a national program now. However, a proposal has been submitted to establish one in Khartoum State. Endemic goitre is still a major problem in many parts of Sudan and attempts are being made to make iodised salt available in these places.

In a country with a high consanguinity rate (60%-80%), it is not surprising to see many autosomal recessive disorders such as congenital adrenal hyperplasia and variable syndromes. However, we do not have facilities for molecular genetics though we are getting some help from international institutes such as Exeter Genetic Center for Diabetes in the UK. Moreover, we are now starting to see problems resulting from urbanisation such as obesity and vitamin D deficiency rickets

We plan to improve on the quality of the current services, make endocrinology services available, accessible and affordable to people in all states. We hope to train more staff, secure facilities, and do more relevant research work include epidemiological, clinical, and genetics as Sudan with its multi-ethnic population is a virgin soil for research.

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CONCLUSION

Non-communicable diseases including diabetes and other endocrine disorders are becoming another health burden in limited-resource countries and thus need to be addressed. When planning to start such services many barriers are faced. To overcome these one has to be tolerant and should not grumble or get frustrated. The best way is to do situational analysis, write a clear proposal identifying needs and plans, and to start with whatever available resources. Identifying problems, giving figures and practical answers are important without depending totally on the government. Know the techniques of fund-raising, involve the local community and create links with both national and international societies and institutions which are usually very helpful. With determination and will there is nothing impossible as we have shown from our experience.

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ACKNOWLEDGEMENTS

This is to acknowledge the help of the endocrinology team members, all the hospital staff and administrators. The authors are grateful to all societies and institutions that are mentioned in the article, the donors and our children and their families, and Mrs. Zeinab Abdulla for typing the manuscript. Last but not least our families for supporting us doing this work.

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CONFLICT OF INTEREST

The authors have no conflicts of interest to declare.

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ETHICAL APPROVAL

The study is a retrospective (record-based) study. No names were used for data collection. Participants’ consent is not required according to the approved research guidelines, and confidentiality was ensured at all levels.

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