Capacity building for pediatric neuro-oncology in Pakistan- A project by my child matters programme

Naureen Mushtaq, Bilal Mazhar Qureshi, Mohammad Khurram Minhas, Gohar Javed, Fatima Mubarak, Salman Kirmani, Shahzadi Resham, Fatima Mustansir, A. Mistry, Aneela Darbar, A. Arif

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Background and Aims: The landscape of Pediatric Neuro Oncology (PNO) has changed in Pakistan since 2014, when a PNO twinning program was initiated between the Aga Khan University Hospital (AKUH) and the Hospital for Sick Children (SickKids), Toronto. This twinning initiative identified the dire need of broadening the PNO services in other centers of Pakistan.Methods: The project for the Capacity building of PNO services was initiated in 2019 with the support of a ‘My Child Matters’ grant by the Sanofi Espoir Foundation. The grant's main purpose was to enhance the capacity for PNO services in 13 public and private sector hospitals across Pakistan. Activities included establishment of National PNO tumor boards, educational workshops and fellowship to train and raise awareness of health care professional (HCP), patients and families.Results: Monthly tumor boards were started in 2019 covering all provinces of Pakistan. To date 223 patients have been discussed. Three PNO workshops attended by 154 HCP, 25 lectures as part of a lecture series were delivered by 13 international faculties with > 1800 participants from 48 countries. Most activities were virtual amongst the mayhem of the pandemic. This project also led to the establishment of Pakistan's first Pediatric neuro-oncology fellowship program at AKUH. In addition, Pakistan's National Guidelines for the management of Medulloblastoma were developed endorsed by the Pakistan Society of Pediatric Oncology (PSPO) and the Pakistan Society of Neuro-oncology (PASNO). Lastly AKUH was able to host the Pakistan`s First PNO Virtual Symposium in November 2020 which brought together 29 national and international luminaries in the field of PNO, it was attended by 1126 participants from 58 countries across the globe.Conclusions: This program has shown its capacity to transform the management of pediatric brain tumors in a low middle-income country with a very large pediatric population. Further follow-up is needed to assess the impact on survival.

Original languageUndefined/Unknown
JournalSection of Haematology/Oncology
Publication statusPublished - 1 Nov 2021

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