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Open Access Study protocol

Multi-centred mixed-methods PEPFAR HIV care & support public health evaluation: study protocol

Richard Harding1*, Victoria Simms1, Suzanne Penfold1, Paul McCrone2, Scott Moreland3, Julia Downing4, Richard A Powell4, Faith Mwangi-Powell4, Eve Namisango4, Peter Fayers5, Siân Curtis6 and Irene J Higginson1

Author Affiliations

1 King's College London, Cicely Saunders Institute Department of Palliative Care, Policy and Rehabilitation School of Medicine at Guy's, King's and St Thomas' Hospitals Bessemer Road, London SE5 9PJ, UK

2 King's College London Department of Health Service and Population Research Institute of Psychiatry Box P024, De Crespigny Park London, SE5 8AF, UK

3 Futures Group One Thomas Circle, NW, Suite 200 Washington DC 20005, USA

4 African Palliative Care Association PO Box 72518 Kampala, Uganda

5 University of Aberdeen Department of Public Health, School of Medicine Polwarth Building Foresterhill, Aberdeen AB25 2ZD, UK

6 MEASURE Evaluation Project Carolina Population Center University of North Carolina at Chapel Hill, CB 8120 Chapel Hill, NC 27599, USA

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BMC Public Health 2010, 10:584  doi:10.1186/1471-2458-10-584

Published: 29 September 2010

Abstract

Background

A public health response is essential to meet the multidimensional needs of patients and families affected by HIV disease in sub-Saharan Africa. In order to appraise curret provision of HIV care and support in East Africa, and to provide evidence-based direction to future care programming, and Public Health Evaluation was commissioned by the PEPFAR programme of the US Government.

Methods/Design

This paper described the 2-Phase international mixed methods study protocol utilising longitudinal outcome measurement, surveys, patient and family qualitative interviews and focus groups, staff qualitative interviews, health economics and document analysis.

Aim 1) To describe the nature and scope of HIV care and support in two African countries, including the types of facilities available, clients seen, and availability of specific components of care [Study Phase 1]. Aim 2) To determine patient health outcomes over time and principle cost drivers [Study Phase 2].

The study objectives are as follows. 1) To undertake a cross-sectional survey of service configuration and activity by sampling 10% of the facilities being funded by PEPFAR to provide HIV care and support in Kenya and Uganda (Phase 1) in order to describe care currently provided, including pharmacy drug reviews to determine availability and supply of essential drugs in HIV management. 2) To conduct patient focus group discussions at each of these (Phase 1) to determine care received. 3) To undertake a longitudinal prospective study of 1200 patients who are newly diagnosed with HIV or patients with HIV who present with a new problem attending PEPFAR care and support services. Data collection includes self-reported quality of life, core palliative outcomes and components of care received (Phase 2). 4) To conduct qualitative interviews with staff, patients and carers in order to explore and understand service issues and care provision in more depth (Phase 2). 5) To undertake document analysis to appraise the clinical care procedures at each facility (Phase 2). 6) To determine principle cost drivers including staff, overhead and laboratory costs (Phase 2).

Discussion

This novel mixed methods protocol will permit transparent presentation of subsequent dataset results publication, and offers a substantive model of protocol design to measure and integrate key activities and outcomes that underpin a public health approach to disease management in a low-income setting.