Brain tumors have one of the lowest survival rates of all types of cancer in Pakistan yet there is little research into the prevalence of the disease, success of different treatment options and ways to improve patient outcomes, said speakers at the inaugural symposium of the Pakistan Society of Neuro-oncology, PASNO, at Aga Khan University.
Members of PASNO – a multidisciplinary platform spanning researchers, surgeons, oncologists, allied health professionals and basic scientists in the field of neuro-oncology – discussed preliminary findings of a nationwide study that will gather data from close to 50 collaborating centers and will eventually include the treatment history of up to 10,000 patients.
Preliminary findings from the study suggest that Pakistan doesn’t have as many high-grade tumors as the developed world. However, patients of brain cancer tend to be of a younger age than in the West.
“Neuro-oncology has been largely ignored as a specialty in Pakistan,” said Professor Syed Ather Enam, a neurosurgeon who chairs the department of surgery at AKU and is the founding president of PASNO.
“As a result, not only do our patients continue to receive delayed or suboptimal care, but the skills of our teams remains deficient. Although the data being collected is only a fraction of what will be achieved in the next several months, besides several interesting demographic features it is becoming obvious that a large number of brain tumor patients are receiving fragmented care in Pakistan. This study will help us understand the true burden of brain cancer in Pakistan,” said Professor Enam.
Professor Enam stressed that a large number of brain tumor patients require a combination of surgery, radiotherapy and chemotherapy. While these different modalities of treatment can be carried out at different centers, it all needs to be orchestrated from one hub to obtain the best results, he added.
PASNO is the first venture of its kind in Pakistan. It aims to bring all specialists involved in the management of neuro-oncology to a common platform to improve not just the care of patients, but also improve education, training and research in the field. Such societies are now common in developed countries where they have been shown to improve the overall care of patients.
New developments in the field were also discussed at the meeting including precision medicine, molecular diagnosis, state of the art operative techniques and technologies, and the potential of artificial intelligence to improve the diagnosis of brain tumors. At present, neuro-oncologists have to conduct a series of tests and processes in addition to interpreting MRIs, or scans of the brain, to decide on whether to operate on a patient. Artificial intelligence could uncover hidden information in MRI scans, which are often missed by professionals, and help determine which patients really need surgery, speakers added.
Participants in the inaugural session of the seminar had the unique opportunity of hearing the perspective of brain tumor patients and caregivers.
One such patient, Mr Yasser Latif Hamdani, underwent awake brain tumor surgery in 2017 and then in 2020. After the first surgery, he went on to study at Harvard University and to publish a biography on Muhammad Ali Jinnah. Mr Hamdani’s wife, Ms Aisha Sarwari, described how he had faced two awake craniotomies, a surgery in which the patient is awake and alert to prevent damage to functionally important parts of the brain, and how he is dealing with the disease now. A caregiver, Ms Komal Syed, shared how she lost her husband, Mr Taha Rafi, to a malignant brain tumor a few years ago. She highlighted the problems the family and caregivers of patients with brain tumor have to deal with.
Speakers noted that platforms like PASNO are coming up in other parts of the world and play a key role in bringing together experts from various cancer specialties to ensure the patient receives comprehensive and optimum care. During the inaugural ceremony, PASNO received endorsements from many neuro-oncology societies across the world, including the Society of Neuro-oncology from North America, the European Association of Neuro-oncology, the Asian Society of Neuro-oncology, the World Federation of Neuro-oncology and the International Stereotactic Radiosurgery Society.
Over 50 speakers from 13 countries participated in the three-day virtual symposium.