1. Yuki Takao IGHI Student Challenges Competition 2013 – 27 th November Supervisor: Prof. Mark Thursz BARRIERS TO END OF LIFE CARE IN THE GAMBIA: How can we reduce unnecessary suffering?

2. Presentation Overview  Background  My BSc project with PROLIFICA  Objectives  Results  Future aims and further research

3. Background: Palliative Care in the African Setting  What is “end of life/palliative care”?  Largely neglected in Africa, lack of research… …less than 5% of Africans in need are benefiting from palliative care (Grant et al; 2011)  The rising cancer burden  Half a million deaths/year (Sepulveda et al; 2003 )  Over the next 50yrs, cancer rates are expected to grow by 400% (Morris K; 2003)

4. PROLIFICA PROLIFICA: Prevention of Liver Fibrosis and Cancer in Africa - Hepatocellular Carcinoma Case-Control (HC4) study Are patients receiving end of life care in The Gambia?

5. Survival and Pain: Unnecessary suffering Hepatocellular Carcinoma Case-Control Study (n=113) - Half the HCC patients dead by 3months - Median pain score for HCC patients: 4 (very severe pain) - No one had been prescribed oral morphine

6. Barriers to End of Life Care… 1) Opioid regulations and accessibility 2) Availability of essential drugs 3) Knowledge of healthcare professionals

7. Barrier One: Opioid Regulations Palliative Care Resources One palliative care institute Gambian National Policies -Import/Export License, renewed annually -Signature from the Ministry of Health -Central Medical Store distributes drugs once a year

8. Barrier Two: Essential Drug Availability GENERAL HOSPITAL, BANJUL MEDICAL RESEARCH COUNCIL PALLIATIVE CARE NGO

9. Barrier Two: Essential Drug Availability

10. 349 total healthcare workers 269 total responses Overall Response Rate 77% Barrier Three: Knowledge of Healthcare Professionals

11. Palliative Care Quiz for Nursing (PCQN) “Long-term use of opioids (morphine) can often induce addiction”  15 (6%) gave the correct answer “false” Factors associated with lower scores: -Less clinical experience -Lower number of terminal patients ever cared for -Lack of palliative care education EDUCATION & TRAINING

12. Discussion: To achieve effective end of life care… -Implementation of national policies that promote palliative care and pain treatment -Improved supply and distribution system for essential medicines -Education and training for healthcare workers, with emphasis on eradicating the negative perception towards opioid analgesics What we achieved… 1)Perspective on end of life care in West Africa 2)Identified major issues 3)Raised awareness 4)Provided pain relief What we achieved… 1)Perspective on end of life care in West Africa 2)Identified major issues 3)Raised awareness 4)Provided pain relief

13. Discussion: To achieve effective end of life care… -Implementation of national policies that promote palliative care and pain treatment -Improved supply and distribution system for essential medicines -Education and training for healthcare workers, with emphasis on eradicating the negative perception towards opioid analgesics

14. Further research… Palliative Care Workshop Objective : Will palliative care education and training improve the knowledge of healthcare professionals and consequently reduce the suffering of terminal cancer patients? Rationale : Palliative care training associated with better knowledge …How will this be implemented? ① High feasibility ② Sustainability ③ Raising awareness ④ Identify further issues ⑤ Cost effective

15. Further research… Palliative Care Workshop Workshop on End of Life/Palliative Care -Principles of palliative care -Pain and symptom management -Multi-disciplinary team approach to care -Cultural and spiritual issues -Grief and bereavement -Support for family and caregivers Pre- and post-workshop test of palliative care knowledge -PCKT -PCQN Pre- and post-workshop evaluation of patient QOL - APCA African Palliative Outcome Scale

16. Further research… Palliative Care Workshop Day 1 Organisatio n - Introduction - Materials - Consent Days 2-5 QOL Data Collection 2 sites Field workers Days 6-7 Workshop 1 site Pre and post knowledge test Week One

17. Further research… Palliative Care Workshop Day 1 Organisatio n - Introduction - Materials - Consent Days 2-5 QOL Data Collection 2 sites Field workers Days 6-7 Workshop 1 site Pre and post knowledge test Day 1 Organisatio n - Re-cap - Materials Days 2-6 QOL Data Collection 2 sites Field workers Day 7 Finish study Week Two

18. Acknowledgements Dr. Maud Lemoine Dr. Yusuke Shimakawa Dr. Gibril Ndow Dr. Saihou Sabally Mr. Saydiba Tamba Mr. Famara Bojang Mr. Alagie Sanneh Mr. Lamin Giana Mr. Yusupha Bah Prof Simon Taylor-Robinson Prof Mark Thursz THANK YOU

19. Breakdown of Costs  African Palliative Care Association (APCA)  Palliative care training & workshops  Hands On Care – Dr Saihou Sabally  Myself – palliative care training in Japan  Flights£500  Accommodation £500  Local Transportation £500  Field workers £750  Consumables £250 £2500 x 2 weeks = Total £5000