Background

WHO Collaborating Centre for Palliative Care, Policy and Rehabilitation

TOPCare: A mixed methods study y of a nurse led palliative care intervention for HIV positive patients on ART Keira Lowther, Richard Harding, Irene J Higginson, Zippy Ali, Hellen Kariuki, Aabid Ahmed, Nancy Gikaara, GaudenciaAfuenda, FawzaZuhura, Eric Combo

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What is the best way to care for these patients on ART? Spiritual Range of prevalence of anxiety and depression on ART in recent systematic review 70 (Lowther 2014)

Prevalence

60

problems

50

Social problems

40 30 20 10 0 Anxiety

Depression

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The TOPCare study AIM:

Psychological problems

Physical problems

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Gonzalez et al (2011) Multi-country meta analysis. Association between depression and non adherence (p< 0.0001) www.csi.kcl.ac.uk

To evaluate the efficiency in terms of patient outcomes of training HIV nurses in palliative care including an assessment tool, for adults taking ART, using a randomised controlled trial (RCT) design. Protocol available at http://www.biomedcentral.com/content/pdf/1471-2334-12-288.pdf Clinicaltrials.gov no. 6594/3200 Follow us on twitter @csi_kcl

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TOPCare Study Min.  Min. appointments   appointments   intervention standard care

60

9

Baseline Within 1  week Within 2  weeks

9

9

9 9

Month 1

9

9

9

Month 2

9

9

9

Month 3

9

9

9

Month 4

9

9

9

Optional qualitative interview for  sub sample www.csi.kcl.ac.uk

Main outcomes: longitudinal analysis Variable POS Palliative care problems Pain (primary outcome) Symptoms Worry Ability to share Life worthwhile At peace Help & advice Psychological morbidity

GHQ

Quality of Life

MOS-HIV

Mental health Follow us on twitter @csi_kcl

Coefficient

P value

0.03(-0.33-0.40) 0.03(-0.33-0.39) -0.38(-0.87-0.11) 0.92 (0.28-1.56) 0 23( 0 48 0 94) 0.23(-0.48-0.94) 0.37(-0.18-0.96) 0.78(0.28-1.24) -0.50(-0.96- -0.03)

0.085 0.87 0.13 0.005* 0 524 0.524 0.189 0.002* 0.035*

0.44 (-0.02- 0.91)

0.06*

0.59(0.12-1.07)

0.015* www.csi.kcl.ac.uk

Multivariate ordered logistic regression

Coefficient (95% CI)

p value

Baseline (n=115)

0.05 (-0.63- 0.74)

0.88

Month 1 (n=113)

1.08 (0.37- 1.79)

0 003 0.003

Month 2 (n=111)

0.64 (-0.06- 1.34)

0.07

Month 3 (n=109)

0.70 (0.01-1.40)

0.05

Month 4 (n=109)

0.37 (-0.31- 1.05)

0.29

50 40

Standard care: Median Intervention: Median

30 20 10 0

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Physical health

70

MHSSS score

• RCT of palliative care intervention • Inc/Exc: Adult, HIV on ART, moderate to severe pain or symptoms t • 120 patients equally randomised to intervention and standard care • 30 patients for qualitative interviews post exit

Data  collection  appointments

Longitudinal quantitative findings – psychological quality of life

t0

t1

t2

t3

t4

Difference in area under the curve by study arm 9.55 (2.27-16.82) p=0.01 Follow us on twitter @csi_kcl

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Qualitative data – active ingredient described by both study arms Feeling heard

Feeling informed

Feeling valued

Feeling able to provide

Feeling not alone, but among friends Follow us on twitter @csi_kcl

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Mechanism of action. Feeling valued enabled patients to... ....rebuild self image

....be more self determining

To be honest when I first came It has changed my thought, here and sat down with you for a cleared my mind and my discussion I felt different different… the feelings also, I felt like one discussion we used to have who matters in the society made me feel at peace and I got rid of all the bad thoughts I had ID 135, female, 50 years, on my way home, so I started intervention helping myself to change step by step. ID 130, female, 42 years, control Follow us on twitter @csi_kcl

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Discussion

Qualitative

• Participation in the study was Quantitative therapeutic for both study arms • Palliative care most • Intervention patients attributed effective initially in this change to health education, population, with correct medication, and the improvement in intervention study t d tteam taking t ki time ti and d arm proven longitudinally showing interest. • Both study arms improve • Patients in standard care over the study period – is attributed change to the this due to regression to the therapeutic benefit of mean? communication and emotional and social support from their peers and the study team. Follow us on twitter @csi_kcl

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Recommendations

• Methodological issues – Nature of the population – Stigmatised – Did the research data collection interviews “contaminate” the standard care patients? Did it enable them to feel valued and rebuild their self image?

Goudge, J., et al., Stigma, identity and resistance among people living with HIV in South Africa. SAHARA J, 2009. 6(3): p. 94-104 Follow us on twitter @csi_kcl

Findings

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• Further research into possible effect of therapeutic communication on stigma response • Piloting of small scale psychosocial interventions: • Peer support groups or treatment monitors who track psychosocial concerns in addition to adherence, and provide health education Follow us on twitter @csi_kcl

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Acknowledgements If you hadn’t taught me and been open with me, I’m very sure that I’d have given up in life. Right now I’m okay. I’m okay sister. I can feel itit.

The staff and patients of Bomu Hospital Mombasa, Kenya and Coast Hospice

ID 138, female, 40 years, intervention

Diana Princess of Wales Memorial Fund

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The TOPCare study team team, in Kenya and London

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