Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study

Abstract

BackgroundQuality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool.MethodsA cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (Function, Symptom, Interpersonal, Well being, Transcendent) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the Total QOL score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda.Results285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean Total score 17.32 (possible range 0 to 30). Patients scored most poorly on Function (mean 0.21), followed by Well being (2.59), Symptoms (5.38), Transcendent (5.50), Interpersonal (9.53) (possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on Well being (Z = -2.778, p = 0.005), Transcendence (Z = -2.693, p = 0.007) and Total QOL (Z = -2.564, p = 0.01). Global QOL score was most weakly correlated with Total QOL (r = 0.37) and the Transcendent subscale was most highly correlated (r = 0.77) (both p < 0.001). Patients receiving palliative care in South Africa and Uganda exhibited significantly poorer QOL compared to similar populations in the USA.ConclusionsFeeling at peace and having a sense of meaning in life were more important to patients than being active or physical comfort, and spiritual wellbeing correlated most highly with overall QOL. It is therefore vital to identify and meet the psychological and spiritual care needs of patients, as well as to assess and treat pain and other symptoms. Our finding that patients scored most poorly on the Function domain warrants further research.

Suitability of quality-of-life outcome measures in palliative care in the South African setting

“…According to Selman et al (2011b), QoL assessment has become increasingly important in the developed world, supporting the following statement by McKinsey (Higginson et al, 2012): "If you can measure it, you can manage it." This drive to measure QoL is motivated by healthcare providers' attempts to understand how healthcare interventions influence the lives of patients rather than merely their physical outcomes.…”

Polygyny and Women's Health in Rural Mali

“…Over the past two decades, the important role of social mediators of women's health, including both the size and the composition of women's networks, has been emphasized in ethnographic and demographic studies (Adams, Madhavan and Simon, 2002; Haddad, Hoddinott and Alderman, 1997; Madhavan, 2002; Madhavan and Adams, 2003; Pick and Obermeyer, 1996; Simon, Adams and Madhavan, 2002). Thus, women's social connectedness has been linked to such outcomes as nutritional status (Ice et al ., 2011; Shayo and Mugusi, 2011), end of life care (Selman et al ., 2011), and protection against cognitive decline (Gureje et al ., 2011). …”

The “Spirit 8” successfully captured spiritual well-being in African palliative care: factor and Rasch analysis

“…Among 64 HIVþ patients attending a hospice in South Africa, symptoms that may relate to existential concerns were highly prevalent; for example, loneliness (50%), hopelessness (42%), an increased sense of guilt or punishment (39%), and a decreased sense of usefulness (27%) [30]. In a previous article, we reported that PC patients in South Africa and Uganda judged feeling at peace and having a sense of meaning in life more important than physical comfort [31]. The importance of the spiritual domain in recognized in the African Palliative Care Association (APCA)'s core standards for PC [18], and spiritual care recommendations have recently been launched [32].…”