Background: Paediatric endocrinology became recognised in Western European countries in the 1960s and 1970s. It is now a thriving paediatric sub-speciality in many countries but remains non-existent or in its infancy in others. We have had the privilege to work in Western centres of excellence, and this review outlines the key stages in the development of modern centres, discussing the human and organisational issues that have underpinned progress in the establishment of this paediatric sub-speciality. Summary: Human determination, vision, and ambition to create a modern centre and become a national flag bearer in the field are key components of success. The realisation that learning by spending time as a fellow away from one’s home institution, so that knowledge can be acquired and brought back home, is also a key factor. Career structures should be designed to mentor and guide the trainee returning from a fellowship abroad. Scientific societies such as the European Society for Paediatric Endocrinology (ESPE) are key resources for networking, support, and discussion with experienced colleagues who may have faced similar challenges. Training and acquisition of knowledge through on-site or e-learning initiatives are beneficial and numerous examples exist, including the telemedicine model of store-and-forward consultations. Leadership skills can be learnt, and good working relationships with adult endocrinology colleagues result in benefits and political support. Key Messages: The development of paediatric endocrinology in a region with hitherto no such facilities constitutes a major contribution to local, regional, and, in all likelihood, national patient care.

Modern paediatric care depends on the existence of many sub-speciality divisions, such as cardiology, neurology, neonatology, and gastroenterology, which have developed over the past 50 years to provide a more sophisticated insight into organ- or system-based diagnosis, clinical management, and specialist training. In Western Europe, general paediatrics is a recognised training pathway; however, many paediatricians in training also follow sub-specialities of their choice, aligned with their chosen clinical and research interests. In the case of paediatric endocrinology, a small number of specialist consultant/faculty posts created in the 1970s have grown to represent the speciality within the majority of university centres and most government-funded hospitals, where one or more named consultants are designated to see new referrals and assume clinical responsibility for patients with endocrine disorders.

The aim of this review was to identify the key stages and guiding principles in the development of this sub-speciality. Paediatric endocrinology is a thriving field in most Western countries, but unfortunately, several countries still lack this fundamental speciality. We will suggest a template for the staged development of the speciality in those countries, for example, in Central Europe, Africa, and Asia, seeking to emulate this model.

Paediatric endocrine disorders embrace multiple pathological endocrine mechanisms. Classical endocrinology involves disorders, namely, deficiency or excess of or resistance to hormone secretion by the endocrine glands. In terms of patterns of clinical referral, problems of growth and puberty predominate. These are followed by thyroid and adrenal disorders together with abnormalities of bone and calcium metabolism. Diabetes care can essentially be regarded as requiring its own personnel and facilities but is an integral component of endocrinology. In addition to the above disorders, obesity is now becoming an important challenge. There is a major drive to set up obesity clinics or complications of excess weight clinics for more severe and complex patients. Due to the breadth of pathology and referrals, it is likely that only a few centres in each country will have expertise in all areas such as growth, puberty, adrenal, bone health, and complex obesity. The need for expert care requires the sharing of particular experience between centres and the establishment of national commissioned services with multi-disciplinary teams.

Before the emergence of paediatric endocrinology as a recognised speciality, children with hormonal disorders were generally under the care of adult physicians. Adult endocrinology was established considerably earlier than paediatric endocrinology. It was the formation of organisations such as European Society for Paediatric Endocrinology (ESPE) in Europe [1] and the Lawson Wilkins Pediatric Endocrine Society in the US [2] that focused on the importance of paediatricians becoming sufficiently trained to adopt these responsibilities. In some countries, notably in Eastern and Central Europe, care of a child with an endocrine disorder still remains predominantly under the care of adult physicians. This situation is more likely in countries where there is a lack of paediatric sub-speciality development. Close working relationships are extremely beneficial to patient care, and clinician collaboration can be very positive in the care of rare disorders such as paediatric Cushing’s syndrome, which has been personally experienced in our institution [3]. It is therefore extremely important to avoid a schism or competition between paediatric and adult physicians when developing paediatric endocrine services. Such positive relationships are also needed for the development of cross-speciality expertise to optimise outcomes, for example, between paediatric endocrinology, paediatric urology, and psychology for children with differences in sex development.

The practice of clinical endocrinology depends on the existence of laboratory support for determination of hormone concentrations which are interpreted to diagnose excess, normal, or insufficient endocrine function. Hormone determination is necessary if effective replacement therapy is to be used. Endocrine reference laboratories are established in most tertiary referral units and operate with a validated system of quality control of hormone assays. Determination of key hormones such as GH, insulin, T4, TSH, cortisol, oestradiol, testosterone, LH, and FSH is widely available, whereas assays for more niche hormones such as IGF-I vary considerably between laboratories [4]. It is essential that assay-specific reference intervals for different paediatric age groups are available for determination of hormones such as IGF-I. Fundamental measures such as screening for congenital hypothyroidism must be a priority.

The arrival of molecular investigations to determine possible genetic variants has made an enormous contribution to the diagnosis of rare endocrine disorders [5]. For example, in the field of growth disorders, numerous genetic variants have been identified in the pathway of GH action [6] with a relatively high rate of positive variants identified in selected populations [7]. Apart from genetic analysis for potentially life-threatening familial disorders such as multiple endocrine neoplasia which is established in named reference laboratories [8], next-generation genetic sequencing remains predominantly a grant-dependent research activity. Diagnostic genetic panels are now available for a range of disorders in some countries. The presence of certain “red flags” which point to increased likelihood of a genetic pathogenesis is now recognised in fields such as growth, puberty, thyroid, and adrenal disorders, in addition to cases of hyperinsulinism [9].

The ESPE: A Truly European Initiative

Specialisation is a phenomenon which pervades all walks of life and professional organisations. Expertise is at a premium when it comes to resolving problems and moving forward. However, the acquisition of valid expertise is a challenging process dependent on well-developed training pathways. An ethos of sharing experience and finding common intellectual ground would have diffused through the atmosphere of a meeting of thirty-two paediatricians and endocrinologists, from European countries and Israel, convened by Professor Andrea Prader at the Kinderspital, Zurich, in July 1962. All attendees were paediatricians with responsibilities in the new field of endocrine disorders, and Prader’s aim was to create a group of specialists with a common interest to discuss science and clinical problems. The meeting contained a scientific agenda and it was agreed that the participants of this unofficial “Paediatric Endocrinology Club” should meet once a year, always in a different European country. The “Club” soon blossomed into a scientific society, and the ESPE was born [1]. A similar society was founded in the USA in 1972 carrying the name of Dr. Lawson Wilkins. ESPE became the European cradle of paediatric endocrinology and a reference point for clinicians seeking contacts for clinical advice and training experience.

Broadly speaking, ESPE has developed four main roles. Firstly, it is an educational forum, providing opportunities for presentation of new data and for reviews of clinical experience across the speciality and developing international schools in paediatric endocrinological disorders. Secondly, fellowships, largely sponsored by pharmaceutical companies, were developed, allowing trainees to travel abroad and spend time in host institutions for research, mentorship, and experience of clinical practice in a culture and environment different from their own. Thirdly, ESPE stimulated research projects which are largely international and collaborative. Fourthly, it created its own welcoming atmosphere for delegates, furthering collegiate exchange, which generated contacts, collaboration, discussion, and friendship among its members. Above all, ESPE is a point of reference for a geographically diverse group of both established and aspiring paediatric endocrinologists and allied professionals.

The Need to Gain Experience Outside the Home Institution: Flag Bearers for the Speciality

Any scientific discipline will advance more rapidly in institutions with a critical mass of brain power linked to research structure and facilities and funding for new and imaginative projects. In the 1960s and 1970s, paediatric endocrinology soon established its centres of excellence. Sponsored research fellowships hardly existed, and young, ambitious European endocrinologists made personal arrangements to spend time for research and clinical training in established centres outside their home country. These physicians became the flag bearers who returned home having learnt new techniques of research, the fundamental principles of the organisation of a clinical paediatric endocrinology service, and frequently a more international language. Such an experience remains equally valid today. Most European countries can attribute the development of paediatric endocrinology to a handful of physicians, who gained experience outside their own centre of excellence and became the leaders of the next generation.

Such a model of learning skills outside one’s home institution and bringing expertise home remains of crucial importance today. Acquired skills include research and clinical abilities, together with overall organisational expertise. Countries that have not sent trainees abroad will by definition lag behind in learning new approaches to diagnostic assessment and indications for new therapeutic advances. This is a key training aspect for developing a framework of progress for the speciality with many successful examples throughout Europe and other Western European countries, South America, Japan, Southeast Asia, and Australasia.

Training Fellowships

The principles of sending trainees abroad to learn and bring expertise home can be complex and need to be thought through and addressed. Pharma has played a key role in sponsoring short- and long-term fellowships from home to host countries and institutions. ESPE and national scientific societies also play a key role in supporting such fellowships, which, by creating links and bonds through the visiting fellow, can foster successful ongoing collaborations in terms of research activities, friendship, and personal ties. A working relationship between the two centres, designed to last longer than the duration of the fellowship, can be of mutual benefit in terms of continued training, e-learning, and exchange visits.

Despite the many advantages of such arrangements, there may be challenges when the trainee returns from a successful fellowship. The experience gained may engender conflict with senior personnel or with other trainees at the home institution who have not had the opportunity to travel. It is helpful to consider these potential issues in advance including strategies to ensure the development of the trainee’s subsequent career path in their home country and to maximise the benefit to the institution from the successful fellowship. In particular, strategies that recognise and promote future leaders can be vital in the building of successful paediatric endocrinology departments.

Educational Initiatives

ESPE has become a powerful force for education. In addition to its annual meetings, it organises international schools in postgraduate paediatric endocrinology, diabetes, obesity, and metabolism courses and also faculty teaching to regions such as Eastern Europe, the Caucasus, the Maghreb, Arab countries, Central Asia, and countries such as Kenya and Nigeria. The new sub-Saharan African initiative Programme d’enseignement en Endocrinologie-Diabétologie pédiatrique pour l’Afrique Francophone is a further example. Evidence from ESPE “Winter School” indicates that a high proportion of its previous trainees go on to develop a career with paediatric endocrinology as a major interest [10]. ESPE-driven teaching in Africa is also embraced by the Paediatric Endocrine Training Centres for Africa initiative. Full details are available on the ESPE website, https://eurospe.org. Distance learning is delivered through the e-learning global website www.espe-elearning.org[11]. Although the contribution of these courses to local expertise has been very successful, on-site education from “imported” experts is also critical to cement the development of the speciality in resource-poor countries, such as these.

A discussion about the establishment of a paediatric sub-speciality in a resource-poor country should include mention of the telemedicine model of store-and-forward consultations as a training device. This was proposed by Collegium Telemedicus (www.collegiumtelemedicus.org) and consists of a consultation platform that is available on the web, offering the opportunity to confidentially discuss clinical cases [12]. As opposed to real-time consultation, so-called store-and-forward consultations imply that the referring physician creates a consultation request that is stored on the digital platform until forwarded to a consultant. Communication without the need for a scheduled appointment avoids real-time video conferencing and its technical disadvantages and allows the practitioner to return to the consultation document at will, which facilitates follow-up communication.

Store-and-forward consultations were a key component of an education initiative launched in Haiti in 2015. The internal relations council of the PES introduced a comprehensive training programme in association with ESPE to develop the Pediatric Endocrinology Education Program for Haiti (www.peephaiti.org) with the aim of establishing paediatric endocrinology as a speciality in Haiti. Paediatric endocrinology consultation services were established using the store-and-forward online platform with positive participation by referring physicians, with appropriate advice given by consultant paediatric endocrinologists, mostly from the USA, in 100% of cases. The diagnosis was clarified in 88% and management improved in 77% of cases. The store-and-forward system of consultations is therefore an alternative to face-to-face teacher visits and provides clinical and educational benefit to local medical staff [12].

How do we define a centre of medical excellence? This well-used term can have numerous dimensions. Firstly, excellence is underpinned by quality medical, nursing, and technical personnel who are able to deliver state-of-the-art care in a caring, compassionate, and efficient environment. Secondly, facilities for investigation, diagnosis, and treatment of complex cases follow, with development of other paediatric sub-specialities. Thirdly, a track record of research activities is leading to publication of key data in high-impact peer-reviewed journals. Fourthly, delivery of training in both medical and nursing care is paramount. The development of such an institution might appear to be out of the reach of resource-poor countries, yet the benefits to the local, regional, and national population can be immeasurable.

In the UK, there has been agreement between paediatricians and the government about which institutions are designated tertiary centres. Tertiary paediatric endocrine services are usually co-located with other tertiary specialities (e.g., neurosurgery, PICU, and paediatric urology), and specialist multi-disciplinary teams are developed to enable clinical decisions related to detailed investigations or procedures. Where a child is managed depends on the complexity of the endocrine condition and the need for other specialist services. In the UK, there is now a settled view for which endocrine conditions are managed at the tertiary centre, which conditions can be managed in an outreach clinic, sharing care with the local team, and which endocrine conditions do not require input from a tertiary centre. A pattern of regular, perhaps every 3–6 months, visits to these “centres” or “outreach” clinics by the tertiary specialist has been developed. The advantages of this approach are that patients are managed as close to home where possible (thus reducing the need for families to travel), health resources are used effectively at each centre, and clinical experience from the tertiary centre is devolved. Complex cases still need to be referred to and stay under the care of tertiary centres, where more experience exists. There is also a requirement for a very few quaternary centres to care for rare life-threatening disorders such as congenital hyperinsulinism. National societies in paediatric endocrinology can play an important role in establishing how care should be delivered and commissioned for children as well as advising the government on referral pathways for different endocrine conditions.

A positive outcome of this model of care is the development of regional networks composed of network centres (non-tertiary district general hospitals) and a tertiary centre covering a population of 1–5 million [13]. Close communication established between all clinicians in the network is beneficial to medical care, particularly in emergencies, but can also facilitate research collaboration. A notable example of the power of a regional network to generate outstanding research was demonstrated in the field of childhood obesity by the University Children’s Hospital (Universitätskinderklinik) in Leipzig, where regional liaison has facilitated analysis of key population data, offering predictions of obesity with important public health consequences [14].

An international syllabus for training in paediatric endocrinology has recently been developed and was co-designed by ESPE [15]. The syllabus includes the requirements for trainers, training centres, and the facilities that should be available to trainees. In the UK, the requirements for future appointments at consultant/faculty level in each region of the country are overseen by an administrative resource such as the regional deanery funded by the Government Department of Health. Linked to these requirements is a system of national GRID appointments which are highly competitive and provide successful applicants with specialist national training numbers. A specialist national training number allows the trainee to access quality-assured training in paediatric endocrinology at a designated tertiary training centre. Completion of the training programme enables the trainee to apply for a substantive consultant post in paediatric endocrinology. This system provides dual accreditation in paediatrics and paediatric endocrinology. Training in paediatric endocrinology follows a mandatory period of 4 years in general paediatric training and then 2–3 years of clinical training in the speciality. In addition to clinical training, trainees are encouraged to undertake a formal period of clinical or laboratory research aimed at the acquisition of a research degree.

The roles and responsibilities of nurses across continents such as Europe are highly diverse. They vary from the appointment of highly specialised nursing professors with major clinical responsibilities and ability to run their own outpatient clinics and prescribe medications to nursing personnel performing only general paediatric nursing care. Paediatric endocrinology is a field where trained specialist nurses can play a major role in patient care and become integral and valued members of the clinical team. Responsibilities such as accurate measurement of height and assessment of growth, together with performing dynamic hormonal tests and close patient contact for non-judgemental questioning related to adherence to therapies such as human growth hormone, are examples of effective nursing involvement in clinical endocrine care. A dedicated nursing component would be considered a vital asset for any emerging paediatric endocrinology departments.

We are writing this review because of our enthusiasm for quality paediatric endocrine care and not as a criticism of the lack of its development in certain cultural settings. We are fully aware of the challenges that the creation, development, establishment, and durability of a high-quality paediatric sub-speciality pose. The combination of digital and human training techniques can accelerate and secure progress. The template and guiding principles for the creation of a sub-specialty referral centre have been described and are underpinned by the vision, enthusiasm, and ambition of the present and future leaders, together with national funding and community support. Advice and support from a national or regional scientific society, such as ESPE, can also make a major contribution. Determination to succeed will attract like-minded professionals to join the challenge. Good working relationships between colleagues, not only within a single institution, but with other institutions, will result in unexpected benefits and key political support.

M.O.S. has had consultancy agreements with Merck Healthcare KGaA, Darmstadt; Pfizer; Sandoz; Visen; GenSci; OPKO; and Springer Healthcare IME and has received honoraria for lectures from Novo Nordisk, Ipsen, and Ascendis. M.D.C.D. has received honoraria for lectures and webinars from Novo Nordisk and Sandoz. J.H.D. has received travel bursaries from Pfizer, Ipsen, Sandoz, and Novo Nordisk; has received honoraria for lectures; and had consultancy agreements with Kyowa Kirin. H.L.S. received a travel bursary from Novo Nordisk, honoraria for lectures/educational meetings from Novo Nordisk, Pfizer, Ipsen, and Sandoz and for educational articles from Pfizer.

None of the authors received any funding related to the preparation of this manuscript.

M.O.S. conceived the idea of the review and wrote the first draft. M.D.C.D., J.H.D., and H.S.L. made major contributions to the text and reviewed the final version.

1.
Illig
R
,
Laron
Z
,
Visser
HKA
.
From the Paediatric Endocrinology Club to the European Society for Paediatric Endocrinology: the early years of ESPE
.
Pediatr Endocrinol Rev
.
2011 Sep
9
1
417
21
.
2.
Oberfield
SE
,
Rogol
AD
,
Miller
WL
.
A brief history of the Pediatric Endocrine Society (PES)
.
Horm Res Paediatr
.
2022
;
95
(
6
):
510
4
.
3.
Storr
HL
,
Alexandraki
KI
,
Martin
L
,
Isidori
AM
,
Kaltsas
G
,
Monson
JP
.
Comparisons in the epidemiology, diagnostic features and cure rate by transsphenoidal therapy between paediatric and adult Cushing’s disease
.
Eur J Endocrinol
.
2011 May
164
5
667
74
.
4.
Bidlingmaier
M
,
Gleeson
H
,
Latronico
A-C
,
Savage
MO
.
Precision medicine in endocrinology disorders
.
Endocr Connect
.
2022 Sep 2
11
10
e220177
.
5.
Dauber
A
,
Rosenfeld
RG
,
Hirschhorn
JN
.
Genetic evaluation of short stature
.
J Clin Endocrinol Metab
.
2014 Sep
99
9
3080
92
.
6.
Storr
HL
,
Chatterjee
S
,
Metherell
LA
,
Foley
C
,
Rosenfeld
RG
,
Backeljauw
PF
.
Non-classical growth hormone insensitivity (GHI): characterization of mild abnormalities of GH action
.
Endocr Rev
.
2019 Apr 1
40
2
476
505
.
7.
Shapiro
L
,
Chatterjee
S
,
Ramadan
D
,
Davies
KM
,
Savage
MO
,
Metherell
LA
.
Whole exome sequencing gives additional benefits compared to candidate gene sequencing in the molecular diagnosis of children with growth hormone or IGF-1 insensitivity
.
Eur J Endocrinol
.
2017 Dec
177
6
485
501
.
8.
Rattenberry
E
,
Vialard
L
,
Yeung
A
,
Bair
H
,
McKay
K
,
Jafri
M
.
A comprehensive next generation sequencing-based genetic testing strategy to improve diagnosis of inherited pheochromocytoma and paraganglioma
.
Clin Endocrinol Metab
.
2013 Jul
98
7
E1248
56
.
9.
Savage
MO
,
Storr
HL
.
The balanced assessment of growth disorders using clinical, endocrinological and genetic approaches
.
Ann Pediatr Endocrinol Metab
.
2021
;
26
(
4
):
218
26
.
10.
Donaldson
MDC
.
Outcome of doctors attending the European society for paediatric endocrinology winter schools 2008–2014
.
Horm Res Paediatr
.
2017
;
87
(
6
):
396
9
.
11.
Ng
SM
,
Kalaitzoglou
E
,
Utari
A
,
van Wijngaard-deVugt
C
,
Donaldson
MDC
,
Wolfsdorf
JI
.
10 years’ experience of a global and freely accessible e-Learning website for paediatric endocrinology and diabetes
.
Horm Res Paediatr
.
2022 Nov 8
12.
Von Oettingen
JE
,
Craven
M
,
Duperval
R
,
Sine St Surin
F
,
Eveillard
R
,
Saint Fleur
R
.
Experience with store-and-forward consultations in providing access to pediatric endocrine consultations in low- and middle-income countries
.
Front Public Health
.
2019 Sep 25
7
272
.
13.
UK standards for paediatric endocrinology
. https://www.bsped.org.uk/media/1580/uk-standards-for-paediatric-endocrinology-2019.pdf.
14.
Geserick
M
,
Vogel
M
,
Gausche
R
,
Lipek
T
,
Spielau
U
,
Keller
E
.
Acceleration of BMI in early childhood and risk of sustained obesity
.
N Engl J Med
.
2018 Oct 4
379
14
1303
12
.
15.
The 2021 European training requirements in paediatric endocrinology and diabetes
. https://www.uems.eu/__data/assets/pdf_file/0007/133990/UEMS-2021.17-European-Training-Requirement-in-Paediatric-Endocrinology.pdf.