Five minutes into a conversation with Dr Naureen Mushtaq, one feels to have known her forever. With her office tucked away behind the hustle and bustle of patients in the Ibn-e-Zuhr Building at the Stadium Road Campus, it is still a place where a lot of active problem-solving takes place: Dr Mushtaq is improving the outcomes of children suffering from neurological cancers in Pakistan.
“Many times, through the course of my career, the enormity of the task is pointed out to me. I always tell people that one has to at least try [to solve big problems] and apply our knowledge and expertise to improve healthcare in our country.”
Walking into her office, one can’t help but notice the board on the right side of her desk. There are photographs, trinkets, flowers, birthday cards, heartfelt notes by patients, tiny bells, ribbons, medical notes-presenting a snapshot of Dr Mushtaq’s life and how she views the world. It also gives one a sense of how her work is so personal, diverse in its meaning and form, and gigantic in nature.
The Problem
Brain tumours are the leading cause of cancer-related deaths in children, representing twenty percent of all childhood cancers. One of the challenges in treatment and care of paediatric neuro-oncology is the establishment of paediatric neuro-oncology services and severe dearth of specialists dealing with this super subspecialty in Pakistan.
Out of the 26 paediatric oncologists present in the country, Dr Mushtaq is the only trained paediatric neuro-oncologist in the country. With over 10 years of experience at AKU and currently serving as an Associate Professor and Section Head of Paediatric Oncology, she recognises that the solution is beyond producing specialists in the field. A good standard of care for patients is a complex endeavour dependent on large, multidisciplinary teams of highly specialised individuals, including neurosurgeons, neurologists, radiologists, radiation oncologists, pathologists, palliative care specialists, oncology nurses, physical therapists, and many more individuals who look after the needs of patients. In Pakistan, there are few healthcare centres that have the capacity to enact this complex framework of care.
Other factors at play, effecting outcomes of children with brain tumours include:
- Significant delays in diagnoses
- Poor socioeconomic status hindering access to healthcare facilities
- Disease at an advanced stage on presentation
- Inadequate histopathology or radiology diagnoses
- Lack of understanding and coordination between specialists, including endocrinologists, nurses, radiation oncologists, neurosurgeons, etc.
To fill the gap between demand and delivery in low and middle-income countries like Pakistan, a collaborative approach between experienced specialists is the need of the hour. Thus, Dr Mushtaq initiated a ‘twinning’ programme between Aga Khan University and The Hospital of Sick Children, Toronto, where the team in Toronto would look at samples sent from Pakistan and advise on course of treatment for patients. The partnership was supported by her mentor, Dr Eruc Bouffet, Head of Section of Neuro-oncology at Sick Kids, including a team of highly enthusiastic experts in neuro-oncology, neurosurgery and neurpathology.
The joint efforts of the two organization paved the way for Pakistan’s first-ever Paediatric Brain Tumour Board – a panel of multidisciplinary experts jointly looking at paediatric neurological patients’ cases through video conferencing. The collaboration has helped more than 400 patients by virtue of bringing together children from other hospital centres in the country.
Thus, began Dr Mushtaq's journey of scaling this partnership by extending this multidisciplinary approach to other healthcare facilities to improve lives of children in the region.
Solving the Problem Nationally
Dr Mushtaq believes that the first crucial step towards establishing neuro-oncology programmes is by defining the need. At present, there are only two healthcare centres, both based in Karachi, that have multidisciplinary teams to counter the disease burden.
“We are talking about incidences as high as four per 100,000 population annually so one centre was definitely not enough to make a difference. AKU alone receives around 70 patients every year,” she said.
“AKU is fortunate to have experts in subspecialities so it is really our competitive advantage to disseminate expertise through education and capacity building,” said Dr Mushtaq. Her highly competent team that drives this mission includes Dr Bilal Mazhar Qureshi, Assistant Professor and Section Head of Radiation Oncology in the Department of Oncology, Dr Khurram Minhas, Assistant Professor in the Department of Pathology and Laboratory Medicine, Dr Fatima Mubarak, Associate Professor in the Department of Radiology, Drs Ather Enam, Dhair and Professor, Gohar Javed, Associate Professor and Section Head of Neurosurgery, Ehsan Bari, Associate Professor, Shahzad Shamim, Associate Professor and Service Line Chief and Altaf Alilaghari, Senior Instructor, Department of Surgery, Drs Salman Kirmani, Chair and Professor, Shahzadi Resham, Assistant Professor, Department of Paediatrics and Child health, Anum Salman Mistry, nursing, AKUH.
The next step was to minimize the neglect in the paediatric oncology speciality and extend the support by establishing national ‘twinning’ programmes with private-public sector hospitals dealing with childhood brain tumors. “The idea was to establish an environment of learning and training across the country for paediatric neuro-oncologu speciality across public and private hospitals having basic infrastructure so it would create a ripple effect in respective facilities to build their own multidisciplinary centres,” she said.
To propel the initiative, Dr Mushtaq secured a Sanofi Espoir Foundation My Child Matters grant and has since started a series of nationwide training programmes composed of training workshops, lecture series and tumor boards in thirteen different hospitals across Pakistan to develop their capacity in paediatric neuro-oncology speciality.
At least 35 percent of Pakistani population is under 14 years of age and with the disease burden so high, Dr Mushtaq expects many children will be benefitted by the capacity building of paediatric neuro-oncology multidisciplinary teams in the collaborating centers.
With the establishment of a postgraduate fellowship more dedicated individuals will join in her vision to deal with this highly complex but neglected field.
“More than capacity building and setting the bar of paediatric neuro-oncology care higher in the country, I want to instill it in our healthcare professionals and the public that treatment is possible and lives can be saved. Lives must be saved at all cost.” she said.