The lack of clinical and research activity to enhance care of the dying among those HIV-infected is a global challenge. Despite two million deaths during 2007, with emerging international data reporting high mortality even as access to therapy increases, very little scientific attention is paid to improving the experience of death and dying .
The burden of progressive, life-limiting disease in Sub-Saharan Africa is reflected in the epidemiology of HIV [2, 3] and cancer . In sub-Saharan Africa during 2007 there were 22.5 million people living with HIV infection; 1.7 million adults and children became infected with HIV; and 1.6 million died of AIDS . Based on GLOBOCAN 2002 cancer rates and UN population predictions, there were an estimated 7.6 million new cancer cases and 6 million deaths from cancer in Africa in 2007 , and malignancies are a common presentation of HIV progression. The burden of other progressive non-malignant diseases is unknown.
Significant advances have been achieved in African palliative care provision to manage the highly prevalent and burdensome problems experienced by those with incurable terminal disease. However, there is very little evidence for outcomes of effectiveness of this care, a common problem in developing country contexts, where health systems research is under-funded [6, 7]. A primary reason for this dearth of evidence is the lack of appropriate and validated outcome tools , among other logistical and methodological challenges in this setting and population .
Advanced care clinicians in Africa identified the need for appropriate outcome tools , and suggested that these tools should be appropriate for both HIV and cancer patients, address family and patient outcomes, be locally validated , and be relevant to all stages of the disease trajectory . In addition to validity and reliability, key principles of outcome tools are brevity and multidimensionality, i.e. addressing physical, emotional, spiritual and social problems of both patients and families. Self-completion tools are often inappropriate for patients with advanced illness, and may not be feasible in populations with limited literacy.
To date, only one palliative measure has been validated in Africa . The Missoula Vitas Quality of Life Index (MVQoLI) is a 25-item measure developed in the USA and validated in Uganda. However, the tool was originally designed for use in clinical care, and was not studied comprehensively as an outcome measure. Psychometric testing of a revised version of the tool concluded that it does not have appropriate properties for outcomes research in patients with advanced illness .
The original Palliative Outcome Scale (POS) is a 10-item multidimensional tool , adapted and validated globally in a number of cultural and linguistic versions [16–18]. Independent assessments of the utility of the POS have identified it as useful and valid in clinical audit, training and research [19, 20]. This study reports the validation (i.e. investigation of the degree to which the instrument accurately and reliably measures what it intends to) of the APCA African POS, a tool developed by a multi-professional expert panel and piloted in 11 sites in 8 Eastern and Southern African countries (Botswana, Kenya, Malawi, South Africa, Tanzania, Uganda, Zambia and Zimbabwe). The developmental pre-clinical phase has been reported previously (i.e. content and consensus validity) , and tested whether the measure could: (a) yield information of clinical relevance to palliative care, (b) cover those domains considered to be important to this type of care and nothing more, and (c) achieve a consensus among specialists that (a) and (b) had been met. Subsequent consultation was undertaken with a panel of African clinicians . During this developmental phase, sensitivity to change was also reported on the original pool of potential items.
In this paper we report the full, international, multi-centre clinical validation of the tool.