Comparative evidence: the multidimensional palliative care burden of HIV disease

1. Comparative evidence: the multidimensional palliative care burden of HIV disease Dr Richard Harding Associate Professor of Palliative Care Cicely Saunders Institute Department of Palliative Care, Policy & Rehabilitation King’s College London www.kcl.ac.uk/palliative

2. WHO definition 2002 • “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

3. HIV/TB pt experience: the relevance • Estimates from IDSA 2007 • one-third of HIV+ are co-infected • majority in sub-Saharan Africa, up to 80 % TB pts co-infected • India, TB most common OI (Int J Tuberc Lung Dis 2000;4:839-44) • 22% AIDS patients in China (PLoS ONE 5(5): 2010) • Health services research is a global TB research priority (Lancet Infect Dis. 2010 Nov 1)

4. Is palliative care appropriate & necessary? • Appropriate? THROUGHOUT disease trajectory • PAIN high prevalence and inadequate control Breitbart 1996; Larue 1997 • SYMPTOMS Fatigue, anorexia, weight loss, depression, agitation anxiety, nausea vomiting, diarrhoea, fever, sweats, pruritus Fantoni 1996; Selwyn 2003 • Necessary? UNAIDS estimates • 33m infected, 2m deaths, 2.7m new infections • Life-limiting, progressive (Sabin 2003, Keiser 2004) *Palliative care for all according to need not diagnosis or prognosis*

5. Palliative care alongside treatment • Mortality still higher than uninfected (Sabin 2003, Keiser 2004) • ARVs assoc with toxicities & side effects • Peripheral neuropathy, gastrointestinal, lipodystrophy (Heath 2003) (Harding 2006) • Variable access to treatment, remaining incurable • New emerging co morbidities: cerebrovascular and end stage liver disease, malignancies, neurological and cognitive impairment (Harding CID 2010) • High symptom prevalence regardless of therapy (Silverberg 2004, Harding 2006 + 2010) • Sig prop present late and with advanced disease

6. HIV and palliative care: evolving roles • Non-cancer agenda: ensure best outcomes for patients and families • Advent of HAART/ARVs • sig affected mortality • focus on palliation lost. • loss of terminal skills Selwyn 1998 Greenberg 2000, “curative” paradigm in ascendance • What is the evidence of effectiveness in HIV? • Systematic review (STI 2005) • Most pre-ART • Sig improves pain, symptom control, anxiety, insight

7. Living with diagnosis • Physicians detect 1/3 of symptoms (Justice 2001/2010) • Sherr & Harding (AIDS 2008, JAIDS 2009, AIDS Care. 2008, Int J STD & AIDS 2007, STI 2010); Wakeham et al J Pall Med 2010 ); Harding Toronto 2008 • : 7 day period prevalence using MSAS-SF ; 10 most prevalent symptoms Uganda: outpatients N=212 <200 CD4 Pain 76% Weight loss 70% Itching 67% Drowsy/tired 61% Lack energy 61% Numbness/tingling 57% Cough 53% Skin problems 52% Worry 51% Lack appetite 49% UK outpts, n=778; 86%RR 63.1% feeling drowsy/tired 55.5% worrying 51.2% diarrhoea 50% pain 47% changes in skin 46% numbness/tingling in hands/feet 32.2% suicidal thoughts

8. ENCOMPASS STUDY n=224, South Africa+Uganda • Most prevalent pain (82.6%) feeling sad (75.4%) feeling drowsy (74.1%) worrying (73.2%) lack of energy (71.9%) • Most burdensome hunger (36.2%) pain (35.3%) weight loss (27.7%) numbness (26.3%) lack of energy (25.0%)

9. Barriers & inequalities • Inequalities and barriers to access (Harding Pall Med 2005) • achieve through dialogue with providers, establishing referral criteria, service must promote its role • evidence for need & effectiveness (Silverberg 2004) • Multi service approach: objectives and partnerships, clinical skills, treatment strategies, patient diversity in need, stigma, access • Communication • Patients fewer conversations on end-of-life care than do their doctors (Curtis 1993) • Doctors see their patients as not “sick enough” or “ready” for the conversation (Curtis 2000) • Cultural taboos exist on conveying bad news (Adamolekun 1998)

10. Requires appropriate measurement -PROMS Across settings, cultures, diseases, multidimensional 5 African Universities, UNC, Columbia, U of Maryland , USG Harvard Vietnam South/South India

12. Application of tool in 5-centre full clinical audit:n= 1001 pts, 772 carers Each site 100 new pts 6 visits for each of 2 cycles • Targets: • Statistically significant improvement in symptom score by T2 • Achieved • Mean patient worry andfamily worry score of ≤2 by T2 • -  Exceeded

16. Unmet needs/challenges SOCIO-ECONOMIC “you can really feel it if you have starved for two days. If they can give us some posho at least because after spending on transport you cannot again spend on food” PHYSICAL-PSYCHOLOGICAL “my biggest problem is about my future. I have no child and my dreams are shuttered down and it hurts lots. It is an inner most pain which I can’t explain to anybody” FACILITY [staff] “Lack of motivation, in fact we have lost very many, they have gone saying they cannot withstand and continue with the work they are doing”

17. Exploring spiritual dimensions of care from care providers and patients • Pan African expert group • Endorsed & foreword by Archbishop Desmond Tutu

19. Further evidence in African care & support • High multidimensional symptom burden at diagnosis (J Palliative Med 2010) • Tanzanian HIV outpatients- 51% would benefit from palliative care irrespective of ART use (AIDS Care 2007) • Beyond HIV there is interraction with other settings e.g. Cancer with physical and psychological burden (Euro J Cancer 2010) • A fundamental challenge to palliative care and support is drug availability (JPSM 2010)

20. ADVOCACY – providing the evidence • Proving palliative care needs are prevalent & their nature • Newly diagnosed HIV symptoms (LSTM/MRC) (J Palliative Medicine 2010) • The ART/palliative care interface in adults & paediatrics (AIDS Care, Harding et al 2008; Int J Pall Nurs 2009) • Cancer symptoms (European Journal of Cancer, Harding et al in press) • Multidisciplinary strategies • Global Human Rights Legislation (J Pain Symptom Manage 2009) • Evaluating African postgrad medical education (South Afr Med J 2010)

21. Essential palliative care for care & support

22. Policy • Evaluation of the Ugandan Opioid public health programme and demonstrating its success (Logie and HardingBMC Public Health 2005, 5:82) • Declaration of Venice, Adoption of a Declaration to Develop a Global Palliative Care Research Initiative. Progress in Palliative Care 2006, 14(5):215-217. (Radbruch et al, promoting EU funding of palliative care) • Provision of pain and symptom-relieving drugs for HIV/AIDS in 12 PEPFAR African countries (Harding, Powell RA, Kiyange F, Downing J, Mwangi-Powell F.JPSM 2010; 40(3):405-415) • With INCB/Ministry of Health data • How to improve palliative care patient outcomes in low- and middle-income countries? Successful outcomes research in sub-Saharan Africa. (Harding R, Gwyther L, Mwangi-Powell F, Powell AP, Dinat N. JPSM, 2010. 40:23-26).

23. Simple solutions • Identifying symptom profiles + care preferences (pt + family) • Seeing patient holistically • Understanding interraction of dimensions in pt need • Drug availability • Enhancing assessment, communication • Referral criteria for complex cases

24. Conclusion • We CAN manage problems- if we ask about them • Need clinical research in this neglected population • Simple integrated palliative care can work