Type 1 Diabetes Youth Challenge

The T1D Challenges to Mount Kilimanjaro and Machu Picchu over the last two years have been a great success. The teams inspired young people living with diabetes to look beyond their physical conditions and take the advantage of their opportunities.
We are proud to announce that Sanofi is partnering with the World Diabetes Tour and SWEET e.V. to support the third edition which is called “Type 1 Diabetes Youth Challenge 2015” on Crete, Greece.

A team comprised exclusively of teens and young adults aged 15–20 with type 1 diabetes took part in the T1D YOUTH Challenge to the White Mountains of Crete, Greece. Their aim was to set a powerful example for the type 1 community around the world and show that diabetes does not have to be a limitation.

The expedition began on August 24, 2015 when the T1D YOUTH Challenge Team embarked on its journey through the Samaria Gorge in the White Mountains of Crete, ascending approximately 2,000m above sea level. This year’s team included eleven participants from Belgium, Brazil, Canada, France, Germany, Greece, India, Italy, Slovenia, Sweden and Portugal and demonstrated that with well managed diabetes – even under challenging conditions – young people living with type 1 diabetes can strive for control and dare to dream.

Please watch the video of the challenge:
https://www.youtube.com/watch?v=3QEbFry4kvY 

 

 

SWEET centres introduce themselves

Belgium

University Hospital Leuven (UZ Leuven) Gasthuisberg Campus, Department of Pediatrics

Prof. Dr. Kristina Casteels

Pediatric diabetes care in Belgium is well organized: there are 13 hospital-based multidisciplinary pediatric diabetes centers where children with diabetes are treated and cared for.

The diabetes center of UZLeuven (University Hospital Leuven) currently has 278 patients in its care: 252 with type 1 diabetes, 11 patients with MODY, 3 type 2 diabetes patients, 2 neonatal diabetes patients and 2 children with secondary diabetes. It boasts a multidisciplinary team consisting of 3 doctors, 3 nurses, 3 dieticians, one psychologist, a social assistant and a secretary. Team work is a key element and we are convinced that a good communication between the different team members is essential for optimal patient care.  The team meets twice a week and discusses all the patients that were hospitalized or seen at the outpatient clinic.

Newly diagnosed patients are hospitalized for at least 1 week and are educated in detail, also on diet and insulin titration. Afterwards patients are seen every three months.  All members of the team are present on consultation: this lowers the threshold to seek advice with the dietician or psychologist.  We are proud of our education system because we see that the effort to educate patients so thoroughly (which is time consuming) results in superior metabolic control. 

Since 2008, a Quality Improvement Initiative has been implemented among pediatric diabetes centers in Belgium (Initiative for Quality improvement and Epidemiology among Children and Adolescents  with Diabetes: IQECAD). It involves annual audits and feedback of performance indicators to the centers, aimed at improving care. Median HbA1c of our center in 2013 was 7.28 % (7.35% in patients with diabetes for more than 1 year).

Since 2013 our center is also member of SWEET (collaborative center).  Being a member of SWEET is a true enrichment as contact with other centers broadens our perspective by giving insight into the organization of diabetes care in different countries. The more centers are involved in this collaboration, the richer the exchange of data will become. It is hoped that improvement in pediatric diabetes care will thus be achieved.

Hungary

The Pediatric Departement, Semmelweis University, Budapest, Hungary

Prof. Dr. László Madácsy

The Pediatric Departement of the SemmelweisUniversity in Budapest, Hungary is a University affiliated, non-profit institute that cares for more than 600 patients. The Centre has 14 in-patient beds for children suffering of diabetes mellitus and of endocrinological diseases. It also has an out-patient clinic that is dedicated to the provision of education for patients. Last year 2500 patients were seen in this clinic. The Centre’s staff is multidisciplinary and consists of four Pediatric diabetologists, one pediatric endocrinologist, one pediatric resident, one pediatric psychologist, two diabetes nurse/educators, one dietician, and one social worker.

The 1st Department of Pediatrics of SemmelweisUniversity was founded in 1839, with the foundation of the Poor Children’s Hospital by Agost Schöpf-Merei. Since the middle of the 20th century a regional and nationwide Centre for children and adolescents with diabetes mellitus has been developed in the 1st Department of Paediatrics with the leadership of Professor Lajos Barta, who has written and published the first medical textbook on childhood diabetes in Hungarian in 1961. Following the political changes in Central and Eastern Europe, the very first ISPAD (ISGD) Postgraduate Course behind the formal „iron courtain” has been organised by the members of the Center with the leadership of Professor Bruno Weber (President of ISPAD) at Dobogókő, Hungary in January 1991. During the last 25 years an intensive cooperation in scientific research developed between the members of the Center and several famous foreign Pediatric Clinics as the Children’s Hospital of Helsinki, the Freie Universitat of Berlin, the Kinder- und Jungenkrankenhaus of Hannover and the Karolinska Institut of Stockholm. The average rate of scientific publications was 7 per year in the last ten years.

The representative of the Center has had the option to participate - as an active member of the Group - in the realization of the  Europroject SWEET (2008-2010). Then, in the year of 2011, the Center - by fulfilling the criteria and requirements for a SWEETCollaborativeCenter - obtained the certification.

The clinic benefits from being in the SWEET network by having access to standardized patient education programmes and pediatric training programmes for young pediatricians interested in diabetology and endocrinology. The opportunity to participate in international research projects is a great benefit as well. We strongly hope, that in the near future the developing SWEET network will be able to improve the care of children and adolescents with diabetes and to increase the efficacy of the prevention of long-term diabetic complications across Europe and beyond.

Italy

Regional Centre for Diabetes in Children and Adolescents, Marche Region, Ancona, Italy

Prof. Dr. Valentino Cherubini, Lucia Ferrito

The Regional Centre for Diabetes in Children and Adolescent of  “Salesi Hospital”, located in Ancona, East Coast, Central Italy, is a Complex Unit within the Department of Women’s and Children’s Health.  The Hospital includes many paediatric structures such as surgery, emergency, neuropsychiatry, oncology, cardiology, and nephrology. The Centre’s staff consists of two full time doctors, one medical student, two nurses, one dietician and one psychologist. The Centre continuously follows about 300 patients less than 18, and more than 150 for occasional consultation. We are proud to observe very low rates of acute complications and a good average metabolic control (mean HbA1c: 7.53%), with the target HbA1c reached by more than 45% patients. Currently more than one third of the patients are using insulin pumps, and 10% a glucose sensor. Our attention is also addressed to inpatients with critical conditions, diabetes-related education, organization of at least three camps per year, and arrangements of meetings in schools to facilitate the child readmission after the diagnosis. Clinical research is another consistent part of our interest. A regional server stores the electronic records of young and adult diabetic patients and allows data sharing among centres, also facilitating the transition of subjects to the adult centre. We manage the regional registry for diabetes in young patients and the national coordination of the "Registry for Type 1 Diabetes in Italy", established in 1997. The SWEET network gave us the opportunity to better analyse the current status of the diabetes care provided by our Centre, and comparing to other EU centres. We get significant information on weaknesses and strengths of treatment, on potential predictors of its success and possible measures of life quality. Since our inclusion in the network we tried to optimize diabetes care and outcome by further enhancing the general diabetes-related education, the skills training, the psychosocial issues and the behavioural and self-management component. We also strengthened the multidisciplinary approach, the electronic registries of patients and the participation in both clinical research and research into health service provision. We really feel that the SWEET network plays a key role in the continuous improvement of paediatric diabetes care and we are proud of being part of it.

Italy

Meyer Children Hospital, Diabetologic Unit

Dr. Barbara Piccini

Meyer Children’s Hospital is a national model for children’s care with a multidisciplinary approach that combines healthcare with scientific research and teaching. Pediatric diabetology activity started at Meyer in the early 80s (with about 10 patients). In 1991 we became Tuscany Regional Centre for Pediatric Diabetology and as such we coordinate the pediatric diabetologic activities in Tuscany.

Our goal is to take care of children with diabetes and their families. The patient is at the centre of the care process and our aim is the empowerment of the patient/family. We have an outpatient clinic for T1DM, T2DM, new technologies and T1DM (CGMS, SAP), obesity, CFRD, MODY and monogenic diabetes. We follow also children at increased risk of DM (IGT, IFG, stress hyperglycemia, familiar cases of DM), we are consultants for adults with cystic fibrosis. We manage patients with DKA and complex cases of diabetes and the diabetologist is on emergency call 24H  for hospitals and families.

We run group educational programs for  CHO counting (dieticians), CSII course, new diagnosis course, management of diabetes at school (for teachers) and we hold meetings with teenagers about special issues such as sex, alcohol and drugs education. Moreover we run 7 fieldtrips per year for family and toddlers, primary school children and teenagers.

We care for about 800 patients with different type of diabetes, around 700 affected by T1DM. During the last 12 months we had 88 new patients. The head of the diabetology unit is Dr. Sonia Toni. Our team includes five full-time pediatric diabetologists and one part-time, three specialist nurses, one full-time dietician and one part-time, one part-time psychologist and one part-time social worker. We also have a part-time  podiatrist in the team.

We would like to underline our patient centered model of care and our communication and educational programs. The strength of our diabetology unit comes from the multidisciplinary team and from the possibility to exchange ideas and motivation between the other specialist of the university hospital.

Moreover we are very proud of the global and continuous care we offer the patients from the beginning, when the diabetologist is immediately called in order to manage the DKA directly. We adhere to national and international guidelines for T1DM diagnosis, follow up and for the screening of comorbidities.

We are part of the diabetes study group of ISPED (Italian Society of Pediatric Endocrinology  and Diabetology).

We became part of the SWEET network  as  Collaborative Centre in 2014 and we are currently applying to become Centre of Reference in 2015. Participating in the SWEET network represented for us the opportunity to start an international collaboration with other diabetologic units. Furthermore the possibility to share and compare our data and results  was a challenge for us, providing the chance to take part in important research activities and collaborative initiatives to further research in diabetes.

We strongly believe that  international collaborations and the SWEET network are the cornerstone for reaching a standardized high level of care for patients with diabetes.

Sweden

Pediatric Diabetes Clinic, The Queen Silvia Children´s Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden

Prof. Dr. Gun Forsander

The Pediatric Diabetes Centre at the Queen Silvia Children´s Hospital, SahlgrenskaUniversityHospital in Gothenburg, Sweden, cares for around 500 children and adolescents with diabetes. The clinic serves all patients 0-18 years old in the region of Gothenburg. 97 % of the patients are diagnosed with Type 1 diabetes, the others with Type 2 diabetes, monogenetic diabetes, neonatal or secondary diabetes. All new patients are tested for HLA and diabetes specific antibodies to assure a correct diagnosis and treatment. Around 60 % of the patients are on insulin pump treatment. About half of the patients use CGM (continues glucose monitoring), either connected to the pump or as a separate system. The median HbA1c value of the patients at the clinic who are needing >0.5 U/day is 57.3 mmol/mol in Nov 2014, according to the day-by-day updated online Swedish Pediatric Diabetes Registry (SWEDIABKIDS). The diabetes team, consisting of 4 pediatric diabetologists (2.7 full-time), 4 diabetes specialized nurses, 2 dieticians (1.2 full-time), 1 psychologist (0.6 full-time) and 3 social workers (1.5 full-time) are working in accordance to ISPAD guidelines, SWEET guidelines and the Swedish National Pediatric Diabetes Guidelines. The research activity of the clinic is high with 15 peer reviewed publications during the last year. Members of the team are responsible for National diabetes team courses as well as National courses for paediatricians and National guidelines.

Being a part of SWEET study since 2008 and recognized as a SWEET CoR since 2011, our clinic has benefit a lot by the extended network all over Europe. The repeated meetings, creation of SWEET Guidelines and discussions on country differences in treatment traditions and options are stimulating and have led to further efforts to improve the pediatric diabetes care, both on a regional and national level. The opportunity to benchmarking the outcome data of different SWEET centres in Europe is very appreciated, also for the head of the hospital, who is very supportive to the new treatment possibilities.

SWEET Paediatric Diabetes Peer Review Process

NHS PR

The NHS has worked out the SWEET Paediatric Diabetes Peer Review Process for the certification of SWEET reference centres. The basis is a web based database system, which was developed according to the ones used in England (the paediatric diabetes peer review programme and the national cancer peer review programme).

The process consists of the following key steps:

1. Electronic applications: centres do a self-assessment against 10 SWEET centre of reference criteria and prove their self assessment by uploading the benchmark report and the SWEET centre information form to the website (http://sweet-project.mayden.co.uk/)

2. External validation of applications will be executed to check that all formalities are correctly met

3. Peer review visits for the accreditation of CC or COR: Newly applying centres undergo an audit; established ones can be recertificated after step 2 and will be revisited according to their 5 year cycle.

The certification process for all centres (the established and the new ones) will be arranged by this process. The centres have to do the self assessment at the SWEET Peer Review website with an upload of their benchmarking report and the SWEET centre information form until December 31st to get their certificate in spring 2015.

SWEET Meetings

The sixth legal entity meeting of SWEET e.V.

The  sixth legal entity meeting of SWEET e.V. was held March 19th – March 20th 2015 in Paris, France. 
SWEET would like to thank the participants for coming and contributing to a fruitful meeting. 
We hope to see you at our next official meeting in Tolochenaz, Switzerland on April 7th-8th, 2016. Please save the date!

SWEET e.V. funded travel costs and accommodation for all participants from SWEET centres (1 person/centre only, 1 night only). Travel costs are funded through reimbursement, therefore please do not forget to send the travel costs invoice to us.

The main topics at this meeting in Paris were:

  • New centres, current applications, future strategies
  • ISPAD and SWEET
  • Ongoing and New Scientific projects
  • Lessons from the SWEET Peer Review Process
  • European Reference Networks
  • Centers presentations
  • How to achieve meaningful data sets to be a participant in the scienctific projects
  • Benchmarking - learning from each other on the basis of SWEET data
  • Publications and abstracts
  • SWEET business plan and strategy
  • Elections (Executive Committee and SWEET Data, Publication and Presentation Committee)

The Executive Committee:

Name Function Institution
Thomas Danne  Chairman Kinder- und Jugendkrankenhaus AUF DER BULT
Peter Gerhardsson Vice-Chairman Lilly
Bärbel Aschemeier Treasurer  Kinder- und Jugendkrankenhaus AUF DER BULT
Ragnar Hanas Boardmember ISPAD 
Catherine Domenger Boardmember Sanofi
Natalie Papo Boardmember Medtronic
Imane Benabbad Boardmember Lilly
Michael Witsch Boardmember Pediatric Clinic CH de Luxembourg


The new SWEET Data, Publication and Presentation Committee (DPPC)

Name Institution
Olga Kordonouri Kinder- und Jugendkrankenhaus AUF DER BULT
Jannet Svensson Herlev University Hospital
Gun Forsander Queen Silvia Childrens Hospital
Kristina Casteels University Hospital Leuven 
Valentino Cherubini Salesi Hospital, University

 

Informal SWEET meeting at the ISPAD conference in Toronto

The first informal SWEET Meeting during ISPAD in Gothenburg was very well attended and fruitful, so we took the chance again and scheduled a meeting in Toronto. Some food and beverages helped to replace the official coffee brake at this time in the ISPAD program. 

The meeting took place at Sheraton Centre Toronto, 123 Queen Street West, 2. floor, conference room Elgin on Thursday, September 4th 2014, from 9.30 am until 11 amToronto floor map

 

 

 

 

The main topics at this meeting were:

  • SWEET News (involvement in European Initiatives)
  • Process of approving SWEET Data access
  • Introduction of the new SWEET IT-partner Prof. Reinhard Holl and presentation of software DPV
  • Evaluation of SWEET Data: Seasonality at onset of type 1 diabetes 

The fifth legal entity meeting of SWEET e.V.

The  fifth legal entity meeting of SWEET e.V. was held April 2nd to April 3rd in Berlin, Germany.

SWEET would like to thank the participants for coming and contributing to a fruitful meeting in Germanys capital city! The SWEET members will receive a report about the meeting. We hope to see you at our next official meeting on March 19th/20th 2015 in Paris. Please save the date!

SWEET e.V. funded travel costs and accommodation for all participants from SWEET centres (1 person/centre only, 1 night only). Travel costs are funded through reimbursement, therefore please do not forget to send the travel costs invoice to us.

The main topics at this meeting in Berlin were:

  • SWEET achievements in the past and SWEET Pillars in the future
  • Certification of Centres of Reference: progress of the peer review process, experiences of the first audit visits
  • The enhancement of our benchmarking reports
  • Implementation of centre collaboration for research purposes

Informal SWEET meeting at the ISPAD conference in Gothenburg

GothenburgSince many SWEET members attended the ISPAD conference in Gothenburg, Sweden, it was decided to schedule an informal SWEET meeting during the conference for all interested members.

The meeting took place at The Swedish Exhibition & Congress Centre, Gothenburg, Conference room R25 floor plan, on Thursday, October 17th, 12.30h -13.30h and included a light lunch (sandwiches and coffee/tea/soft drinks)

The main topics were:

  • Get together and get to know each other
  • Exchanging news and getting a feeling for additional SWEET issues and topics for the November meeting
  • Current Certification Process and the new centres
  • SWEET Paediatric Diabetes Peer Review Proposal (Audit) by the NHS

The fourth legal entity meeting of SWEET e.V.

HannoverThe fourth legal entity meeting of SWEET e.V. took place in Hannover, Germany on 19-20th November 2013. The “Hannoversche Kinderheilanstalt” was very pleased to welcome all during its 150th anniversary year.

SWEET would like to thank the participants for coming to Hannover and contributing to a very cheerful and fruitful meeting! We have discussed a lot of topics and defined how to move forward in the next year.

The main topics at this meeting in Hannover were:

  • Applying Centres / Certification
  • Certified Centres / Recertification
  • The SWEET Paediatric Diabetes Peer Review Programme
  • Benchmarking and data evaluation
  • Stategic planning for 2014: targets and measures