IBTA News

In the third in our series about the first formal meeting of the newly-formed Society for Neuro-Oncology Sub-Saharan Africa (SNOSSA), held in Abuja, Nigeria on 22-23 July, 2018, Ngong Jasino Tabali J, a public health specialist and brain tumour patient advocate with Jacob’s Hope Foundation (Cameroon) gives his reflections on the event:

The inaugural SNOSSA meeting saw the coming together of healthcare professionals in the field of neuro-oncology together with patients, patient advocates, caregivers and others. At this first gathering, in Abuja, Nigeria, we witnessed the bridging of the gap between care providers and caregivers and advocates – all brought together to the same platform to share experiences and best practices.

The problems discussed were wide-ranging and included those of a clinical nature, as well as issues surrounding advocacy, the caregiver’s perspective and public health policy as it relates to brain tumour management. Observing and learning about the issues faced in different sub-Saharan Africa countries showed that common topics were:

1. challenges of brain tumour and spinal surgeries
2. lack of baseline data on brain tumours
3. the ratio of patient to neurosurgeons/neuro-oncologists
4. missed diagnoses and the low rates of second opinion referral
5. under-availability of specialists (e.g. neuropathologists) in the diagnosis process
6. poor identification of a country’s needs by ministries of public health
7. misappropriation of funds
8. inadequate communication strategies and platforms
9. lack of necessary technical support for the maintenance of equipment such as radiotherapy machines and MRI
10. behavioural patterns of care providers and the relation to quality brain tumour care
11. the sharing of data on successes and failures in brain tumour care

Issues affecting brain tumour care, especially paediatric glioma, were the focus of much of the discussion, with different neurosurgeons sharing their experiences and explaining advanced techniques and technology that can improve care for brain tumour patients. Best practices were also shared from a variety of specialists from different countries.

It was recognised that multidisciplinary teams are very important in the fight against brain tumours, much like they are for other diseases affecting sub-Saharan Africa. Patient advocacy is neglected in brain tumour care, as it is in other public health problems.

Networking between all stakeholders is one of SNOSSA’s strengths. Different parties sharing their point of view is the catalyst for the provision of best care.

Multidisciplinary teamwork results in better communication, especially regarding the needs of patients. This could be done through:

• sensitisation to brain tumour issues and provision of adequate information, with improved links to care, second opinion and referrals
• providing information on therapeutic options (whether locally available or not) which allows patients and families to be fully informed and seek alternative therapeutic options
• challenging the stigma and discrimination associated with brain tumours in the African context, which causes communication difficulties
• building connections between other patient advocate groups in Nigeria and across sub-Saharan Africa and sharing best practice on how to confront common bottlenecks in relation to stigma.

The SNOSSA meeting delegates found that there is a need for change in behavioural patterns among brain tumour care providers in sub-Saharan Africa – towards one another and towards patients – to overcome major roadblocks in providing quality care. Additionally, certain care providers don’t share information and are slow to refer. A theme emerged at the conference that there can be an attitude for care providers to appear as ‘demigods’ in front of their patients and they are not always open to refer for a second opinion on diagnosis and therapy. These behaviours lead to a breakdown in communication and vital information is lost. Delegates highlighted that some patients die early as a result of these failings.

From a caregiver’s perspective, it was felt that once the diagnosis of a brain tumour is made, healthcare professionals, patients and caregivers should together discuss all of the treatment options thoroughly. For example, no information is often given on the risks involved with and without surgery.

Delegates also said that information is not the same as knowledge: the source of knowledge is experience, and this experience is better fortified and valued when shared. There is also a need for brain tumour care to be patient-centred. A change of attitude to reflect this improves quality of care, referral, use of available and affordable therapeutic options and optimisation of time for better decision making.

Communication between all stakeholders on different platforms and media channels was felt to be very important. Communications through scientific journals, which is where most information on brain tumours is found, are not accessible to everyone: some articles must be purchased, and the scientific language could be very difficult to understand for the layperson. There is, therefore, a great need to freely share information in understandable language that is available at easily accessible sites, thus offering a great benefit to those who are most in need.

I feel that SNOSSA is adopting the best way forward: getting everyone involved at different levels of brain tumour care for the benefit of patients and caregivers in terms of their quality of life, and for scientific advancement.

In the second in our series about the first formal meeting of the newly-formed Society for Neuro-Oncology Sub-Saharan Africa (SNOSSA), held in Abuja, Nigeria on 22-23 July, 2018, nurse and brain tumour patient advocate Derick Agbor gives his reflections on the event:

The first SNOSSA meeting was an event that brought great minds together to ponder on the achievements made so far and the way forward for brain tumour care. Improving the quality of care while equally advocating for people suffering from brain tumours/cancer was a key note of this meeting.

The first day of the SNOSSA conference was marked by presentations of different diagnostic and therapeutic procedures of gliomas. A high rate of success in diagnosing and treating these conditions was demonstrated by all the speakers, thanks to advanced techniques they employ. Notwithstanding, numerous situations still exist that make it difficult for patients to be diagnosed early and to access care.

Deliberating the challenges faced by brain tumour patients in Sub-Saharan Africa

Time and energy were focused on deliberating the challenges faced by brain tumour and cancer patients in various countries of Sub-Saharan Africa, whose cases often go unnoticed or are misdiagnosed. So many reasons were put forward by delegates, amongst which is the lack of knowledge about brain tumours and different types of cancer in sub-Saharan Africa communities

Poor health policies in some countries are making it difficult for people to access care, due to monopolies and bottlenecks. Moreover, in some countries there are very few publications that address brain tumours/cancers, which are a means by which individuals can enrich their knowledge on brain tumours. To some extent, advanced technology for the handling of cases is absent in many countries and even when it is available, paying for equipment maintenance is an ongoing issue. Financial difficulties are a key reason for these problems and very few citizens can afford this advanced care. This is a major reason why referred patients always can end up not going to treatment centers to receive care.

It was felt that individuals’ belief systems are equally a barrier to care, since many people will prefer traditional therapy or visit ‘men of God’ because they believe that brain tumours have a spiritual origin. Most importantly, there is always the tendency in the majority of cases for health care providers at the peripheral level to misinterpret the diagnosis of a brain tumour. This is seen in the numerous patients who visit many health facilities with their brain tumour going undiagnosed.

Attendees to the first SNOSSA meeting

Deliberations continued into the second day, which explored bridging the gap that keeps people away from care. Some major conclusions were made. These included making efforts to intensify communication in the community through social media and all avenues necessary. Getting stakeholders in brain tumour care to be part of this sensitisation movement may go a long way to bring an end to the bottlenecks that exist. It was felt that learning from brain tumour advocacy strategies practiced in other countries would make it easier to develop a model that will work across the region. Furthermore, it was highlighted that a multidisciplinary strategy is very important in the future fight against brain tumours and other cancers.

With the current challenges faced today in brain tumour care in Africa, this meeting was ideal ground for fruitful deliberation on the way forward.

In the first in a series about neuro-oncology in sub-Saharan Africa, Dr James Balogun, president of SNOSSA, gives his reflections on the new society’s first formal meeting.

Dr James Balogun, inaugural President of SNOSSA

The first meeting of the Society for Neuro-Oncology Sub-Saharan Africa (SNOSSA) was held at the Transcorp Hilton Hotel, Abuja on 22-23 July, 2018. SNOSSA was borne out of the first Sub-Saharan Africa Neuro-Oncology Collaborative (S-SANOC) planning meeting in London last year (read more here), which was facilitated by the International outreach committee of the Society for Neuro-Oncology (SNO) led by Dr. Gelareh Zadeh, the International Brain Tumour Alliance (IBTA), the Greg-Wilkins Barrick Chair of the Department of Surgery, University of Toronto and the Zimbabwe Brain Tumor Association (ZBTA) with the support of the European Association of Neuro-Oncology (EANO), Indian Society of Neuro-Oncology (ISNO) and the Asian Society of Neuro-Oncology (ASNO).

The meeting was attended by delegates from Sub-Saharan African countries as well as speakers drawn from the United States, United Kingdom, Canada, India and Greece.

There were a variety of sessions throughout the event, covering a range of topics. These included talks that considered the landscape of neuro-oncology in sub-Saharan Africa alongside discussions about gliomas. The highlight of this session was a keynote address by Dr Rakesh Jalali, in which he concisely addressed the WHO 2016 update of brain tumours and the practical recommendations in the clinics – particularly in low-medium income countries. The session ended with a great talk from Dr Evangelia Razis about palliative care for patients with brain tumours, in which she also noted the need for care providers to give psychological support.

The paediatric tumour session was kick-started by the President of the International Society of Pediatric Oncology (SIOP) Dr Eric Bouffet, who gave an exciting talk about the management of medulloblastomas. Discussion centred on adapting the care of medulloblastoma to sub-Saharan Africa and leveraging on the recommendations of SIOP. There were also insightful discussions on the challenge of caring for children with gliomas and craniopharyngiomas.

The second day of the meeting had a thrilling patient advocacy session, which was co-sponsored by the IBTA, with talks about “the physician as a patient advocate”, the challenges of advocacy in Nigeria and Sub-Saharan Africa, and the challenges faced by carers of brain tumour patients. The session brought to the fore the need for collaboration between physicians and patient advocates. the need for increased listening and empathy by providers, and the need to document the available neuro-oncology capacity in sub-Saharan Africa to facilitate access to services.

The event hosted panel discussions that looked at education, research and collaboration within and outside Africa. Chas Haynes, the executive director of the Society for Neuro-Oncology (SNO), explained more about the continuing support of SNO and the development of a resource to document neuro-oncology capacity in sub-Saharan Africa, which will also serve as an educational portal. He read a goodwill message from IBTA co-Director Kathy Oliver.

The meeting ended with a SNOSSA business meeting, where the Society’s Constitution was adopted and an Executive Council - to be led by Dr James Balogun - elected. Two patient advocates were elected to the Executive Council: Bonita Suckling of Rainbows and Smiles in South Africa and Irene Azong-Wara of Jacob’s Hope Foundation in Cameroon. The hosting for the 2019 SNOSSA meeting was awarded to Cape Town, South Africa with Professor Alan Davidson as the conference chair.