Background: Childhood tumours of the hypothalamic pituitary axis (HPATs) are very rare and hence any single centre experience is limited. Without evidence-based guidance, treatment is individualised on a case basis. Survival rates are high, but at the expense of significant morbidity. Centralised care or wider multi-professional consultation may improve neuroendocrine and visual outcomes.
Objective and hypotheses: i) To facilitate multi-professional dialogue across centres nationally (including adult pituitary specialists) in a videoconference format. ii) To enhance diagnostic and treatment decision making through education and sharing audits, knowledge and experience.
Method: From April to October 2010, a live, monthly videoconference was piloted across three sites. Pituitary physicians and surgeons, paediatric neurooncologists, neuroradiologists, neurosurgeons, neuropathologists and clinical oncologists all contributed. Having overcome initial technical limitations, monthly meetings continued over the next 2 years.
Results: In 27 meetings spanning 2.5 years, the clinical cases (including quality imaging) of 67 HPAT patients were discussed in relation to formulating management plans. Of these, 16 were discussed on multiple occasions. Of the 67 cases, craniopharyngiomas (17) were the most common tumour type. In addition, three guest lectures and five new audits of centre experience in craniopharyngiomas (3), prolactinomas (1) and suprasellar gliomas (1) were presented. To date, there are seven participating centres, increased attendees and 34 case discussions per month, even attracting international participation from centres in Ireland and Australia.
Conclusion: A national, regular, multidisciplinary consultation for discussing rare HPATs is feasible and welcomed, facilitating dialogue amongst a wide specialist professional grouping and influencing management. With appropriate funding, such collaborative experience with outcome monitoring, regular on-going audits and an educational programme should enhance the management of this rare group of patients, resulting in better outcomes and shaping the national standard of care.
20 - 22 Sep 2014
European Society for Paediatric Endocrinology