Palliative Care Research at the University of the Witwatersrand

Transcription

1 Palliative Care Research at the University of the Witwatersrand Dr Lindsay Farrant Acting Head of the Division of Palliative Care Department of Internal Medicine For Dr Natalya Dinat

2 The University of the Witwatersrand The Faculty of Health Sciences Established in In 2005 the Graduate Entry Medical Programme was launched. This was a great opportunity to start Palliative care. Dr Dinat served on the MBBCh committees from 2003 and got involved with the GEMP programme development. The vast network of full time academics, technicians and consultants constitute the largest Health Sciences Faculty in Africa and one of the largest in the world. The Faculty is sectioned into seven Schools on the basis of the various disciplines. They are the Schools of Anatomical Sciences, Clinical Medicine, Oral Health Sciences, Pathology, Physiology, Public Health and Therapeutic Sciences. Palliative Care is currently a Division in the Department of Internal Medicine, in the School of Clinical Medicine. As a Division it has a responsibility for undergraduate and postgraduate teaching, as well as research and clinical practice.

3 What we are A multidisciplinary, specialist clinical & academic centre Also a Gauteng Provincial Department of Health Centre of Excellence Fully integrated Nurse led specialist service Daily on site doctor involvement & support of nurses, Social Worker and administrative support. Services In hospital consulting & follow up Community Outreach Drop in Outpatients Telephonic advisory service to health care professionals 7000 consultations per year

4 Our vision Care, comfort and healing for all. We light the way for a pain free journey with dignity. Our mission Wits Palliative Care does collaborative research, training and service delivery to develop equitable and appropriate palliative care services. It promotes best practice for palliative care throughout the public health sector. Our supporting values Provide excellent care and strive for continuous improvement Ethical considerations Respect, value and appreciate patients and colleagues Respond to the needs of patients and families Challenge ourselves to learn from our mistakes Build people through sharing knowledge and experience Find time to celebrate life Our slogan Adding life to days, not just days to life.

5 Why we do research? To realize our mission and work toward our vision...develop equitable and appropriate palliative care services. It promotes best practice for palliative care throughout the public health sector. Our research is to inform policy, improve services and increase access to palliative care. It is also required if we are to live our values...provide excellent care and strive for continuous improvement Respond to the needs of patients and families Challenge ourselves to learn from our mistakes Build people through sharing knowledge and experience... What research do we do? In 2005, 2008 and 2010 we sat with stakeholders and colleagues to identify priority areas for us. This involved keeping up with the SA health services context and changes and assessing the burden of disease and constant evaluation of our services.

6 Research priorities we identified 1.What is the burden of disease in our setting and what are the future trends? HIV/AIDS, Cancer, Heart Disease? 2. What are the various service configurations, staffing norms which are appropriate for South Africa? is nurse led service effective? Is outreach feasible and how much does it cost? What is our role with the cancer services? Palliative approach vs Specialist Palliative Care Services? 3.Is it good to integrate into health systems? 4.Clinical guidelines What is the evidence and how appropriate is it in our setting? 5.What kind of teaching and training is required?

7 Specific areas we identified within these areas 1. What is the need of the community we serve? 2. Service evaluation and cost analysis 3. Integrating a palliative approach into primary health care and the role of specialist services 4. TB 5. Pain and symptoms in HIV, especially neuropathic pain because it is common 6. Increasing access to morphine nurse prescribing 7. Evaluation of teaching and training at Wits

8 The process started with asking the questions. First find the money and the collaborators total 89 million rand over the last 10 years Do the research, done but. where are the outputs? Lessons learnt A lot of luck, hard work, it takes money to find money. Can do high quality research in Africa, and we can do RCTs. We are so busy doing the palliative care building the ship as we sail that we have put aside little time and resources to write up. Need to actively seek the mentorship & do research & write up. Need to be able to read and discuss an academic community.

9 Research done Identifying need The Soweto Care Givers forum and community involvement in care of the dying. Health Systems Trust Paper Indian Journal of Palliative Care. Found that the health utility model of community involvement (home based care) is not effective and the use of the unemployed as volunteers is perceived as exploitation. Living with HIV and dying in a time of AIDS. PEPFAR Published by Lambert Academic Publishers. A qualitative piece of work which identified the main needs of people when they are dying. Main finding that patients do not want to dwell death, so do not want to talk about it and 2010 Morphine Gap in South Africa. Unpublished. Found a big gap between use and need.

10 Evaluation of services Developing and validating a palliative outcomes tool. Encompass collaboration. International collaboration. Published and well described. Impacted on policy led to the creation of the first fully integrated public sector Specialist Palliative Care Service in South Africa. Now 24 fully funded DOH posts for service delivery. Presented to the National Dept of Health Management Committee of all Chief Directors and Directors General for Health. Generated some interest, but no money! Centre for Health Policy studies looked at burn out of nursing staff. Palliative Care was shown to have the lowest level of burnout in the hospital. Conference presentation, not yet published. Presented service activity in various fora

11 Evaluation of palliative care Cost analysis Collaboration with a health economist. In press JPSM. Found that, consistent with findings over much of the world, our outreach services are cost saving. Impacted hugely on facility managers and chief financial officers (particularly at Bara) and led to the sustainability of the centre hooray! Standards of care. Based on service evaluation and clinical audit. Requested by the National Dept of Health, Office of Standards and Compliance. Evaluation of a Palliative Care Service. A large data set spanning 5 years with ethical approval and individual patient consent. Ongoing MPH Predictors of pain management outcomes. Cosupervisor Ongoing MPH Analysis of POS in Palliative Care. Co supervisor Ongoing Functional decline at the end of life in HIV/AIDS. Dinat

12 Clinical research Ranging from basic science collaboration to surveys to RCTs. Dr Dinat is a founder of the HIV Pain Research Interest Group, an interest group of SAPain, which is chapter of IASP. She is also a member of the Neuropathic Pain in Developing Countries Subcommittee of NeupSig of IASP. The mouth in AIDS RCT Andolex C School of Oral Health. Y Malele Morphine in Malawi. J Bates. Funded and co supervised. With Dr Gwyther. Published. Symptom prevalence and burden in a general adult HIV population. L Farrant. Funded and co supervising ongoing. Intraepithelial Nerve Fibre Density in HIV neuropathy. I Patel. Collaborating and co supervising. MSc HIV neuropathy risk factors. Pain descriptors in HIV neuropathy Prevalence of HIV neuropathy Morphine and HIV neuropathy collaboration in proposal stage Pharmaceutical sponsored trial HIV neuropathy just started screening Post doctoral scientist study on sleep and HIV

13 Sinakekele izinyawo helping the feet An investigator initiated RCT evaluating Amitriptylline in HIV neuropathy. Completed. In write up stage. Winner Best Poster at the 3 rd International Congress on Neuropathic Pain in Athens. Lessons learnt: It is possible to do a high quality trial. Making the placebo was difficult, but not impossible. If you are known and trusted in the community you serve and the HIV clinic is your friend a 98% retention rate is possible. The trial provided high grade evidence that amitriptyline is not effective for HIV DSN. Collaborations are fabulous. Ask for help and it shall be given. An adequate budget is required. The ethics committee are there to help you. Good IT infrastructure and a friendly biostatistician is essential.

14 Research in education All the below needs to be written up /or done Evaluation of student self confidence. BSc. B. Green Thompson. Used Thanotophobia Scale and worked with permission of Liverpool Marie Curie Centre. Evaluation of the curriculum Katy Newell Jones Teaching methods evaluation Student Portfolio evaluation to inform teaching Dr C Blanchard Impact of teaching Research methodological issues The GEMP III learning day Registrars in Family Medicine (Wits) As of January 2010 a compulsory one month rotation, and has been highly rated by registrars. What is the impact likely to be?

15 Future Training Registrars Primary Health Care Packages and Integration of Targeted Interventions National Dept of Health. Morphine access Nurse prescribing in progress. Policy research TB Continue with ongoing work HIV neuropathy HIV and Sleep and Fatigue Cancer and integration of care

16 The Big Lessons Learnt One foot in the reality of the clinic is essential. It s difficult to teach & do research in Palliative Care if one is not clinically involved. The trade off is fewer papers per year. Need time to first build a clinical service base Research can no longer be competitive, needs to be collaborative Need to allocate time and resources to write up Building up research expertise takes time Research Methods Courses such as KCL are valuable Peer Reviewed Publications are important, but government meetings can be very influential!