Half the people in the world with Parkinson’s Disease have probably not been diagnosed – yet…

Richard Walker is a Consultant Geriatrician at North Tyneside General Hospital, and Honorary Professor of Ageing and International Health at Newcastle University. He has a research interest in non-communicable diseases in sub-Saharan Africa (SSA) and is Associate International Director for SSA for the Royal College of Physicians, London. He is the Clinical Lead for the Northumbria / Kilimanjaro Christian Medical Centre health link and Chair of the Movement Disorders Society African Task Force. In this blog article he discusses the growing challenge of Parkinson’s Disease in SSA.

I’ve recently got back from the 21st International Congress of Parkinson’s Disease (PD) and Movement Disorders in Vancouver where I chaired the African Task Force meeting. At the congress it was exciting to hear about all the new developments in the field, but it was perhaps unsurprising that there was very little research about the treatment of PD in lower and middle income countries (LMICs).

But is there much PD in LMICs?

Our team previously conducted the largest prevalence study of PD in Sub-Saharan Africa (SSA) via a house-to-house survey. We discovered that less than one quarter of people with PD in rural Tanzania had been diagnosed and even fewer were on regular treatment.  Extrapolating from these results, we estimate that, staggeringly, up to half of the people in the world with PD have probably never been diagnosed.

What did we do about our findings?

We have since followed up the cohort we identified.  We initially provided those not on drugs with cueing therapy and demonstrated that after 3 weeks of training from a Tanzanian physiotherapist, there was a dramatic improvement in mobility (Rochester et al 2011). We have subsequently provided them all with drug treatment, primarily with levodopa, and follow them up on a yearly basis with supervision by Tanzanian staff in the meantime.

What happened next…?

Based on this work, we held a special symposium about care for PD in SSA at the International Congress of Parkinson’s Disease and Movement Disorders in Paris in 2009. This led to the establishment of a SSA Special Interest Group and subsequently, in 2012, the establishment of the African Task Force. I’ve recently handed over chairperson duties of this group to Nigerian neurologist Professor Njideka Okubadejo, who has been vice-chair up until now.

Training the workforce

PD Nurse Specialists (PDNS) have a central role in the care of people with PD, yet are not available in LMICs. Working with Louise Ebenezer, who leads the PDNS training course in Wales, we’ve provided training for PDNS and other colleagues in Tanzania for East Africa (2012), Ghana for West Africa (2013), South Africa for Southern Africa (2014) and, most recently, in Ethiopia (2016). Participants from more than 20 countries have attended and each has been linked to a UK PDNS mentor.

We’ve also provided Fellowships for young African Neurologists to enable them to attend the annual European Movement Disorder Summer School. Hosts are asked to provide extra exposure to Movement Disorder training either before or after the course within their departments.  This year the course will run in Marburg, Germany.

There’s now also a European Summer School for physiotherapy. We’ve provided the same opportunity for physiotherapists from Africa and look forward to welcoming 4 more to the European Physiotherapy Summer School in Newcastle in September.

For the first time this year there will also be a Summer School for nurses. This will run in Portugal and we’ll be providing 4 places for nurses from Africa with further experience for the African participants in the UK following on from the meeting.

We’ve also tried to provide targeted movement disorders training for Neurologists attending conferences on other topics; most recently, for example, at an epilepsy conference in Dakar, Senegal (May 2017).

To keep this momentum, I’m hopeful that the newly formed African Academy of Neurology (AFAN), which had its first scientific meeting in Tunisia in March 2017, will be able to drive these initiatives forward working in conjunction with the MDS.

 Are mucuna beans the answer…?

As well as training health professionals we still need to do more to raise public awareness about PD in SSA. But the biggest problem is identifying a source of affordable and sustainable treatment. A survey in Kenya showed that drug availability for PD was very limited in government or private pharmacies.  With this in mind, a group in Ghana, in conjunction with an Italian research group, are about to do a trial of mucuna beans, which contain dopamine, to treat PD. We eagerly await the results of this, as if proven to be effective, this could offer an affordable and sustainable option, as mucuna beans grow throughout the tropics.  This treatment is already used on a small scale in places as far apart as Bolivia and India.

The future…

Huge challenges lie ahead. Given the lack of doctors, and particularly specialists, training PDNS and empowering them to treat and monitor patients could have a major impact in SSA.  This model of care is something that the UK has very much pioneered, with geriatricians at the forefront – maybe now is the time for us to facilitate such initiatives in lower and middle income countries too…?

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