THE INTERNATIONAL FEDERATION FOR SPINA BIFIDA AND HYDROCEPHALUS CONFERENCE ON MULTIDISCIPLINARY CARE

Brussels, September 20 2021

The first online IF international Conference on multidisciplinary Care for Spina Bifida and Hydrocephalus taking place from September 14 to 17 2021 was a great success.

Together with the Conference Scientific Committee an ambitious programme has been conceived and designed with speakers from all around the world.

After the welcoming words of the IF president Cato Lie and the IF Secretary General and congress chair dr. Sylvia Roozen this four days conference started with an inspiring opening lecture.

The opening keynote lecture was provided by Prof. dr. Wladimir Wertelecki – ‘Spina Bifida Care – In Ideal, in Practice and in Reality’. In his keynote, Prof. dr. Wertelecki emphasised on prevention being the best care and the need to work towards standards of care. Three considerations were shared with the audience reflecting suggestions for the way forward: 1) the importance of a national standard of multidisciplinary care of SB 2) care for mothers and families immediately after being informed of Neural Tube Defects during pregnancy or after birth 3) prevention measures for woman of child-bearing age. Prof. Wertelecki set the scene for the coming days.

On the second day of the conference, we were treated to two keynote lectures.  One presentation given by Dr. Giovanni Mosiello and one by Dr. Andrea Manunta, respectively co-chair and chair of the ERN-ITHACA Working Group Spina Bifida.

Dr. Mosiello underlined the importance of pediatric guidelines related to neurogenic bladder and bowel dysfunction. In his lecture, he emphasized the importance of further adapting and developing of  neurogenic bladder and bowel dysfunction guidelines  for individuals with Spina Bifida, what to do to recognize it, and best possible management and treatment procedures.

Dr. Manunta presented on urological management for adults with Spina Bifida. In line with the keynote presentation by Dr. Mosiello, Dr. Manunta emphasised the need for guidelines to support evidence-based and medical decisions about the care of individuals with Spina Bifida. Existing guidelines on neuro-urology and urological management for both children and adults do exist, however, these are very general on all aspects of care for individuals with Spina Bifida at all ages. Therefore, together with Dr. Giovanni Mosiello and the International Federation for Spina Bifida and Hydrocephalus the ERN-ITHACA working group Spina Bifida focusses on European guidelines on urological management of Spinal Dysraphism.

Dr. Mosiello and Dr. Manunta emphasised that guidelines do not replace medical expertise nor multidisciplinary care. The field is complex and a lot of knowledge is still missing.  Most recommendations are based on expert consensus rather than on solid scientific evidence. Both keynote speakers pointed at the importance of further research on neuro-urology and urological management in order to respond as well as possible to the needs of people with Spina Bifida.

During the last day of the conference Dr. Marinus Koning (Reach Another Foundation, Ethiopia) provided a keynote lecture on ‘Building Capacity for Spina Bifida and Hydrocephalus Care in Ethiopia, a 12 Year Perspective, Lessons Learned and a Way Forward’. The presented journey showed the establishments of collaborations, centers of excellence for pediatric neurosurgery with multidisciplinary SBH care teams, and the challenges of providing care in Ethiopia. Dr. Koning clarified how ambitious goals with limited resources were achieved.  Dr. Koning together with his twin brother are now working towards a new challenge of high-risk prevention and the routes of food fortification to ensure newborn health.

The final keynote lecture was presented by Dr. Santosh Karmarkar (Spina Bifida Foundation India). Dr. Karmarkar gave an overview of the many players involved in multidisciplinary care for individuals with Spina Bifida and or Hydrocephalus and their families. He presented a journey of over 25 years as doctor treating individuals with Spina Bifida and made a comparison with music. The multidisciplinary care for individuals with Spina Bifida and or Hydrocephalus as well as their families requires a full orchestra of key musicians such as the urologist, fetal surgeon, nurse, etc. Integrated care, similar to a good musical concert, requires the determination of a conductor who has both the knowledge of each instrument and can bring the multidisciplinary orchestra together to provide optimal care. Dr. Karmarkar shared the suggestion to also be aware of the missing players in those centers providing multidisciplinary care and to pay close attention to the accessibility of care for individuals with Spina Bifida and or Hydrocephalus as well as their families.

In line with the words of the last keynote dr. Santosh Karmarkar “Each one of us have an important role to play and such meetings we have experiences this week can improve the conversations on very fundamental issues to practical applications – together”.

The presentations during the eight conference sessions by the many speakers around the world have shown the importance of stimulating the process of reflection on multidisciplinary care related to Spina Bifida and Hydrocephalus. The speakers gave an extra impulse and provided additional impetus for the process of multidisciplinary care. The conference also highlighted that more practical revenues can be achieved for the different teams in the different countries. For this, the work presented during the conference can be multiplied and results and practices implemented in other countries.

In particular IF will further facilitate the ‘twinning’ aimed at good practices exchange and connect research and innovations on multidisciplinary care between countries. During the conference many  inspiring examples were given by the speakers for starting this dialogue among others  by the IF working group on Ageing and the international  youth group. However, more can be achieved and based upon this inspiring conference IF will continue facilitating dialogues for fruitful learning experiences, exchange of knowledge and implementation of knowledge and practices.

To re-watch the Conference and Sessions, see also the links here:

Day 1: https://www.youtube.com/watch?v=C-po5ewerZ4&t=53s
Day 2: https://www.youtube.com/watch?v=xURPPumxTsE&t=589s
Day 3: https://www.youtube.com/watch?v=cPVp9yZ95rY
Day 4: https://www.youtube.com/watch?v=cZIuZhblg6k

Conference Program Book

Acknowledgement

We are extremely grateful to the wide range of people who contributed to this first online IF Conference on Multidisciplinary Care for persons with Spina Bifida and or Hydrocephalus.

A few specific acknowledgements are warranted:

• Our Sponsor: Rights, Equality and Citizenship programme of the European Commission
• The keynote speakers (Prof. dr. Wladimir Wertelecki, Dr. Giovanni Mosiello, Dr. Andrea Manunta, Dr. Marinus Koning, and Dr. Santosh Karmarkar) and presenters

Dr. Sylvia Roozen

IF Secretary General
Chair Scientific Committee

Watch below the video compilation of the Multidisciplinary Care Conference for SBH 2021: