Vol. 44 No. 1 July 2012 Journal of Pain and Symptom Management 1

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1 Vol. 44 No. 1 July 2012 Journal of Pain and Symptom Management 1 Original Article Prevalence, Burden, and Correlates of Physical and Psychological Symptoms Among HIV Palliative Care Patients in Sub-Saharan Africa: An International Multicenter Study Richard Harding, BSc, MSc, DipSW, PhD, Lucy Selman, BA, MPhil, PG Cert Pall Care, Godfrey Agupio, RN, Natalya Dinat, MD, FCOG, MPhil Pall Med, Julia Downing, RN, PhD, Liz Gwyther, MB, ChB, FCFP, Dip Pall Med, MSc, Thandi Mashao, RN, Keletso Mmoledi, CPN, MPH, BTech, Tony Moll, MB, ChB, BSc, Lydia Mpanga Sebuyira, BM, BCh, BA (Hons), MA, FRCP, Barbara Ikin, RN, BA, and Irene J. Higginson, BMedSci, BM BS, FFPHM, FRCP, PhD Department of Palliative Care, Policy, and Rehabilitation and The Cicely Saunders Institute of Palliative Care (R.H., L.S., I.J.H.), King s College London, London, United Kingdom; Hospice Africa Uganda (G.A.), African Palliative Care Association (J.D.), and Infectious Diseases Institute (L.M.S.), College of Health Sciences, Makerere University, Kampala, Uganda; Division of Palliative Care, Department of Internal Medicine (N.D., K.M.), University of the Witwatersrand, Johannesburg, South Africa; Hospice Palliative Care Association of South Africa (L.G., B.I.) and Palliative Medicine Unit (L.G., T.M.), University of Cape Town, Cape Town, South Africa; and Philanjalo Hospice (T.M.), KwaZulu Natal, South Africa Abstract Context. Despite HIV remaining life limiting and incurable, very little clinical research focus has been given to the prevalence and related burden of physical and psychological symptoms for those accessing palliative care. Despite evidence of problems persisting throughout the trajectory and alongside treatment, scant attention has been paid to these manageable problems. Objectives. This study aimed to measure the seven-day period prevalence and correlates of physical and psychological symptoms, and their associated burden, in HIV-infected individuals attending palliative care centers in sub-saharan Africa. Methods. Consecutive patients in five care centers across two countries completed the Memorial Symptom Assessment Scale-Short Form, with additional demographic and disease-oriented variables. Results. Two hundred twenty-four patients participated. The most common symptoms were pain in the physical dimension (82.6%) and worry in the Address correspondence to: Richard Harding, BSc, MSc, DipSW, PhD, Department of Palliative Care, Policy, and Rehabilitation, King s College London, Cicely Saunders Institute, Bessemer Road, Denmark Hill, Ó 2012 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. London SE5 9PJ, United Kingdom. richard.harding@kcl.ac.uk Accepted for publication: September 1, /$ - see front matter doi: /j.jpainsymman

2 2 Harding et al. Vol. 44 No. 1 July 2012 psychological dimension (75.4%). Interestingly, 71.4% reported hunger. Women, and those with worse physical function, were more likely to experience burden. However, being on antiretroviral therapy (ART) was not associated with global, physical, or psychological symptom burden. Conclusion. This study is the first to report physical and psychological symptom burden in HIV-infected populations receiving palliative care in sub-saharan Africa. Despite increasing access to ART, these burdensome and manageable problems persist. The assessment of these problems is essential alongside assessment of ART virological outcomes. J Pain Symptom Manage 2012;44:1e9. Ó 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words HIV, palliative care, symptoms, Africa Introduction During 2008, there were an estimated 22.4 million people living with HIV infection in sub-saharan Africa, and 1.4 million deaths. 1 Palliative care has been identified as an essential component of care services for people with HIV disease because of the variety of problems that may be experienced. 2 HIV palliative care has been shown to be effective in the management of pain, symptoms, and anxiety in a systematic review of evidence, 3 although the identified data were almost exclusively generated in highincome settings and prior to the advent of antiretroviral therapy (ART). A dearth of evidence of palliative care needs and outcomes has been identified for sub-saharan Africa 4 and the development of appropriate interventions is hampered by a lack of data. Although some data have been generated on the needs and symptoms of African HIV populations 5,6 and evidence suggests a high burden of problems in the palliative phase, 7 populations with advanced disease have been rarely investigated using well-validated outcome measures. Further, as a result of the challenges of opioid availability and prescribing in Africa, the palliative care research agenda has been dominated by the study of pain and analgesia. 8e12 This risks the reduction of palliative care to pain relief, to the detriment of a broader understanding of the pain, other symptoms, and psychological dimensions that constitute HIV symptomatology. This study aimed to determine the seven-day prevalence and associated burden of physical and psychological symptoms among HIV patients receiving palliative care in sub-saharan Africa, and to identify correlates of symptom burden. Methods This study used an international, multicenter, cross-sectional design, and used a wellvalidated symptom scale. Participating Sites The study was undertaken in five palliative care facilities, four in South Africa, and one in Uganda. The facilities serve periurban and urban areas with a range of home care, day care, hospital consulting, and palliative inpatient services. Recruitment Inclusion criteria were adult patients (at least 18 years old) with a confirmed HIV diagnosis known to the patient, receiving palliative care, with sufficient physical and cognitive ability to participate in interviews. Patients with a known HIV diagnosis were recruited consecutively. All information and consent forms and tools were translated from English (forward and back) into the principle languages of Luganda, Runyankole, SeSotho, Runyoro, SeTswana, isixhosa, and two isizulu dialects (Gauteng and KwaZulu Natal). Informed consent was obtained from all the participants. The study was reviewed and approved by the Ethical Review Boards of the Universities of Cape Town, KwaZulu Natal, and Witwatersrand; the Ugandan National Council for Science and Technology; Hospice Africa Uganda; and the

3 Vol. 44 No. 1 July 2012 HIV Symptoms in Sub-Saharan African Palliative Care 3 Hospice Palliative Care Association of South Africa. Translation and Data Collection The following patient demographic and clinical data were collected: age, gender, household size, number of children responsible for, location of home (urban, periurban, rural), primary place of palliative care (home, inpatient/outpatient unit, day care facility), physical functional status (using the Eastern Cooperative Oncology Group [ECOG] functional status score 13 ), time under care in weeks, current ART use, whether the patient had received a prior AIDS diagnosis, and most recent CD4 count. We elected to collect data on the number of children that respondents were responsible for, rather than number of biological children. This was because adults may often care for children other than their own, for example, grandchildren, nephews, and nieces, a situation that has been exacerbated by AIDS-related deaths. The Memorial Symptom Assessment Scale-Short Form (MSAS-SF) was used to measure the seven-day period prevalence and associated burden of multidimensional symptoms. The MSAS-SF offers three subscale indices: Physical Symptom Distress Index (MSAS-Phys), Psychological Symptom Distress Index (MSAS-Psych), and Global Distress Index (MSAS-GDI). 14 Each of these three subscales has a possible score range of 0e4. This well-validated, multidimensional instrument captures the presence and distress of 26 physical and four psychological symptoms. It has good psychometric properties, with subscale Cronbach s alpha coefficients of 0.76e0.87, and one-day test-retest reliability correlation coefficients of 0.86e Its use has been well reported among HIV and African populations. 5,15e19 Time to complete the MSAS was recorded. Following a study in Uganda to determine whether additional items were necessary for measurement among cancer and HIV palliative care populations (involving patient and staff focus group studies and item testing, data submitted), the following items were included in the pool of physical symptom items: bad smell/ odor; sores/lumps on genitals; discharge from genitals; difficulty moving; difficulty walking; poor vision and poor hearing; hunger (Karen Frame, MSc dissertation, unpublished). The MSAS-SF, demographic record, and information and consent sheets were translated from English into the main local languages reported above. Translation was carried out at the participating sites and cross-checked by staff fluent in both English and the relevant local language. The University of KwaZulu Natal carried out the Natal Zulu translation and the University of Cape Town, the isixhosa translation. Research nurses read aloud the questionnaire items and entered the patient s self-report response on the patient s behalf. Self-complete was not used because of limited literacy, and all questionnaires were completed using research nurses to enter responses to reduce any potential bias through using a mixture of self-complete and researcher completion. Research nurses then entered the data into purpose-designed Excel spreadsheets, subsequently imported into SPSS (SPSS Inc., Chicago, IL) for analysis. Analysis Descriptive analysis was undertaken for patient characteristics and MSAS-SF scores. For each item within MSAS-SF, the prevalence and associated burden were calculated. Subscale scores of global, physical, and psychological distress were calculated using the original subscales and calculation methods of the MSAS-SF (i.e., not including the additional African items). The total number of seven-day period prevalent symptoms also was calculated for each respondent, and the mean and standard deviation (SD) for the sample. Physical and psychological symptoms are reported separately and in descending order of prevalence. Correlates of symptom burden were identified using regression analyses. Four models were constructed, each model with a dependent variable as follows: global distress (model 1), physical distress (model 2), psychological distress (model 3), and total number of symptoms (model 4). Univariate linear regression analyses were conducted to test the association of various factors with the dependent variable. The independent variables entered stepwise were age (continuous), gender (two levels of male/female), prior AIDS diagnosis (two levels of yes/no), current ART use (two levels of yes/ no), functional status (five levels of ECOG status), household size (continuous), and whether they were responsible for children (two levels of yes/no). Following each

4 4 Harding et al. Vol. 44 No. 1 July 2012 univariate regression, multivariate regression models were constructed. Independent variables from the univariate analyses above were entered stepwise into the multivariate model if significant at the conservative 25% level. 20 Cases with missing data were excluded from the multivariate models. For each model, the 95% confidence interval (95% CI) was calculated for the unstandardized b coefficient, and r 2 presented to determine the amount of variance explained by the multivariate model. Results Sample Characteristics Two hundred twenty-four patients were recruited in 2009, n ¼ 192 in South Africa and n ¼ 32 in Uganda. The mean age was 36.5 years (median ¼ 35, SD ¼ 9, min ¼ 20, max ¼ 70), and 164 (73.2%) were female. The main place of palliative care and recruitment was home care n ¼ 149 (66.5%), inpatient n ¼ 44 (19.6%), outpatient n ¼ 18 (8.0%), and day care n ¼ 13 (5.8%). Patients had been receiving palliative care for a median of 12 weeks. Respondents home location was: urban n ¼ 50 (23.3%); periurban n ¼ 35 (15.6%); and rural n ¼ 139 (62.1%). Of the 224 patients, 180 (80.4%) were responsible for children (mean number of children for which responsible was 2.7, range 1e11). Of the 224 recruited HIV patients, 198 (88.5%) had a prior AIDS diagnosis, and 110 (49.1%) were currently receiving ART. A CD4 count was available for only 122 patients (54.5%). Their ECOG functional status scores were fully active n ¼ 49 (21.9%); restricted n ¼ 59 (26.3%); ambulatory n ¼ 49 (21.3%); limited self-care n ¼ 61 (27.2%); and completely disabled n ¼ 6 (2.7%). Symptom Prevalence and Burden The seven-day period symptom prevalence and associated burden are reported in Table 1. The mean number of symptoms was 18.1 (SD ¼ 6.9, median ¼ 19). The five most prevalent symptoms were pain (82.6%), feeling sad (75.4%), feeling drowsy (74.1%), worrying (73.2%), and lack of energy (71.9%). The symptoms reported as having the most severe burden (i.e., scored very much ) are particularly important clinically. The five most prevalent severe symptoms were hunger n ¼ 81 (36.2%), pain n ¼ 79 (35.3%), weight loss n ¼ 62 (27.7%), numbness n ¼ 59 (26.3%), and lack of energy n ¼ 56 (25.0%). The mean Global Distress Index was 1.74 (SD ¼ 0.81), the Physical Distress Index was 1.48 (SD ¼ 0.82), and the Psychological Distress Index was 1.56 (SD ¼ 0.88). The MSAS-SF took a mean of 25.0 minutes to complete (SD ¼ 7.9). Correlates of Symptom Burden The univariate and multivariate models to determine associations with symptom burden are presented in Table 2. It is notable that gender and functional status were the sole and consistent correlates for the multivariate models. In the multivariable analyses, gender and functional status were correlated to global distress (b ¼ 0.315, P ¼ and b ¼ 0.280, P ¼ 0.001, respectively), physical burden (b ¼ 0.331, P ¼ 0.004, respectively), number of symptoms (b ¼ 2.793, P ¼ and b ¼ 2.334, P ¼ 0.001, respectively) and psychological burden (ECOG only, b ¼ 0.157, P ¼ 0.001). In each case, being female and having worse physical function were associated with higher burden. It is notable that ART use was not associated with burden, and neither was a prior AIDS diagnosis. Further, the responsibility of children did not affect psychological burden, and family household size was not associated with any index of burden, that is, having a family at home did not significantly affect symptom burden. Discussion This study is the first to identify the prevalence, burden, and correlates of pain and other physical and psychological symptoms in an HIV palliative care population in sub-saharan Africa. Our sample reflects the demographics of HIV-infected persons accessing care, that is, they are relatively young (mean age 36.5 years), and largely female (73.2%), 21 which is notably different from palliative care populations in high-income countries, where HIV is less prevalent. The data were sampled from sites where palliative care is being delivered alongside ART, that is, in line with current guidance from the World Health Organization (WHO). Although palliative care is advocated alongside treatment options, it is arguably rarely achieved

5 Symptom Prevalence Missing Table 1 Seven-Day Period Symptom Prevalence (n ¼ 224) in Descending Order of Prevalence Burden (Total ¼ 100%) Not Present Not at All A Little Bit Somewhat Quite a Bit Very Much Missing Physical problems Pain 82.6% (n ¼ 185) % (n ¼ 39) 2.2% (n ¼ 5) 15.2% (n ¼ 34) 9.8% (n ¼ 22) 19.6% (n ¼ 44) 35.3% (n ¼ 79) 1 (0.4%) Feeling drowsy/tired 74.1% (n ¼ 166) % (n ¼ 58) 1.3% (n ¼ 3) 16.5% (n ¼ 37) 13.8% (n ¼ 31) 18.8% (n ¼ 42) 23.7% (n ¼ 53) 0 Lack of energy 71.9% (n ¼ 161) % (n ¼ 63) % (n ¼ 32) 9.4% (n ¼ 21) 23.2% (n ¼ 52) 25.0% (n ¼ 56) 0 Hunger a 71.4% (n ¼ 160) % (n ¼ 64) 2.2% (n ¼ 5) 10.7% (n ¼ 24) 10.7% (n ¼ 24) 11.6% (n ¼ 26) 36.2% (n ¼ 81) 0 Numbness/tingling 66.5% (n ¼ 149) % (n ¼ 75) 0.9% (n ¼ 2) 10.7% (n ¼ 24) 11.6% (n ¼ 26) 17.0% (n ¼ 38) 26.3% (n ¼ 59) 0 hands or feet Dry mouth 61.6% (n ¼ 138) % (n ¼ 86) 3.6% (n ¼ 8) 13.4% (n ¼ 30) 11.6% (n ¼ 26) 15.6% (n ¼ 35) 16.5% (n ¼ 37) 2 (0.9%) Weight loss 60.3% (n ¼ 135) % (n ¼ 89) 0.9% (n ¼ 2) 10.3% (n ¼ 23) 8.9% (n ¼ 20) 12.5% (n ¼ 28) 27.7% (n ¼ 62) 0 Itching 58.9% (n ¼ 132) % (n ¼ 92) 0.4% (n ¼ 1) 13.4% (n ¼ 30) 10.3% (n ¼ 23) 10.3% (n ¼ 23) 24.6% (n ¼ 55) 0 I do not look like 58.0% (n ¼ 130) % (n ¼ 94) 0.9% (n ¼ 2) 10.7% (n ¼ 24) 9.4% (n ¼ 21) 14.7% (n ¼ 33) 22.3% (n ¼ 50) 0 myself Cough 57.1% (n ¼ 128) % (n ¼ 96) 3.6% (n ¼ 8) 10.7% (n ¼ 24) 12.5% (n ¼ 28) 12.5% (n ¼ 28) 17.9% (n ¼ 40) 0 Sweats 56.3% (n ¼ 126) % (n ¼ 98) 3.1% (n ¼ 7) 8.9% (n ¼ 20) 10.3% (n ¼ 23) 16.1% (n ¼ 36) 17.9% (n ¼ 40) 0 Difficulty walking a 55.4% (n ¼ 124) % (n ¼ 100) 0.4% (n ¼ 1) 12.1% (n ¼ 27) 9.8% (n ¼ 22) 11.2% (n ¼ 25) 21.9% (n ¼ 49) 0 Changes in skin 53.6% (n ¼ 120) % (n ¼ 104) 0.9% (n ¼ 2) 11.6% (n ¼ 26) 7.6% (n ¼ 17) 13.4% (n ¼ 30) 19.6% (n ¼ 44) 0 Dizziness 50.5% (n ¼ 113) % (n ¼ 111) % (n ¼ 28) 11.6% (n ¼ 26) 11.6% (n ¼ 26) 14.7% (n ¼ 33) 0 Difficulty sleeping 49.1% (n ¼ 110) % (n ¼ 114) 0 6.3% (n ¼ 14) 10.7% (n ¼ 24) 10.3% (n ¼ 23) 21.9% (n ¼ 49) 0 Difficulty seeing a 44.6% (n ¼ 100) % (n ¼ 124) % (n ¼ 27) 6.3% (n ¼ 14) 10.3% (n ¼ 23) 16.1% (n ¼ 36) 0 Difficulty moving a 44.2% (n ¼ 99) % (n ¼ 125) 0.4% (n ¼ 1) 9.8% (n ¼ 22) 8.9% (n ¼ 20) 9.8% (n ¼ 22) 14.7%(n ¼ 33) 1 (0.4%) Lack of appetite 41.5% (n ¼ 93) % (n ¼ 131) 0.4% (n ¼ 1) 9.8% (n ¼ 22) 4.9% (n ¼ 11) 11.6% (n ¼ 26) 14.3% (n ¼ 32) 1 (0.4%) Muscle aches a 40.2% (n ¼ 90) % (n ¼ 134) 0 9.4% (n ¼ 21) 11.2% (n ¼ 25) 6.7% (n ¼ 15) 12.9% (n ¼ 29) 0 Difficulty concentrating 39.7% (n ¼ 89) % (n ¼ 135) 0.9% (n ¼ 2) 12.9% (n ¼ 29) 7.1% (n ¼ 16) 8.9% (n ¼ 20) 9.8% (n ¼ 22) 0 Nausea 38.8% (n ¼ 87) % (n ¼ 137) 1.3% (n ¼ 3) 7.1% (n ¼ 16) 7.6% (n ¼ 17) 12.9% (n ¼ 29) 9.8% (n ¼ 22) 0 Shortness of breath 37.1% (n ¼ 83) % (n ¼ 141) 0.4% (n ¼ 1) 8.5% (n ¼ 19) 5.4% (n ¼ 12) 10.7% (n ¼ 24) 12.1% (n ¼ 27) 0 Feeling bloated 35.7% (n ¼ 80) % (n ¼ 144) 0 8.0% (n ¼ 18) 8.0% (n ¼ 18) 9.8% (n ¼ 22) 9.8% (n ¼ 22) 0 Problems urinating 33.0% (n ¼ 74) % (n ¼ 150) 0.4% (n ¼ 1) 6.3% (n ¼ 14) 4.5% (n ¼ 10) 8.0% (n ¼ 18) 13.8% (n ¼ 31) 0 Constipation 32.1% (n ¼ 72) % (n ¼ 152) 1.3% (n ¼ 3) 10.3% (n ¼ 23) 4.0% (n ¼ 9) 9.4% (n ¼ 21) 7.1% (n ¼ 16) 0 Swelling arms/legs 29.9% (n ¼ 67) % (n ¼ 157) 0.4% (n ¼ 1) 4.5% (n ¼ 10) 5.4% (n ¼ 12) 8.5% (n ¼ 19) 10.7% (n ¼ 24) 0 Difficulty hearing a 30.8% (n ¼ 69) % (n ¼ 155) 0.4% (n ¼ 1) 9.4% (n ¼ 21) 7.1% (n ¼ 16) 5.8% (n ¼ 13) 8.0% (n ¼ 18) 0 Changes in food taste 29.9% (n ¼ 67) % (n ¼ 157) 0.4% (n ¼ 1) 11.6% (n ¼ 26) 8.0% (n ¼ 18) 3.6% (n ¼ 8) 5.4% (n ¼ 12) 0 Sexual problems 26.8% (n ¼ 60) % (n ¼ 164) 0.4% (n ¼ 1) 4.9% (n ¼ 11) 2.7% (n ¼ 6) 8.0% (n ¼ 18) 10.7% (n ¼ 24) 0 Discharge from genitals a 26.8% (n ¼ 60) % (n ¼ 164) 0 5.8% (n ¼ 13) 5.8% (n ¼ 13) 4.0% (n ¼ 9) 10.7% (n ¼ 24) 0 Sores/lumps on genitals a 26.8% (n ¼ 60) % (n ¼ 164) 0.4% (n ¼ 1) 2.2% (n ¼ 5) 5.4% (n ¼ 12) 8.5% (n ¼ 19) 9.8% (n ¼ 22) 1 (0.4%) Hair loss 25.4% (n ¼ 57) % (n ¼ 167) 0.9% (n ¼ 2) 8.0% (n ¼ 18) 4.5% (n ¼ 10) 4.5% (n ¼ 10) 7.1% (n ¼ 16) 1 (0.4%) Diarrhea 24.6% (n ¼ 55) % (n ¼ 169) 0 4.5% (n ¼ 10) 6.3% (n ¼ 14) 4.5% (n ¼ 10) 9.4% (n ¼ 21) 0 Vomiting 21.9% (n ¼ 49) % (n ¼ 175) 0 6.3% (n ¼ 14) 5.4% (n ¼ 12) 4.5% (n ¼ 10) 5.8% (n ¼ 13) 0 Bad smell/odor a 20.5% (n ¼ 46) % (n ¼ 178) 0.4% (n ¼ 1) 5.8% (n ¼ 13) 2.7% (n ¼ 6) 3.6% (n ¼ 8) 8.0% (n ¼ 18) 0 (Continued) Vol. 44 No. 1 July 2012 HIV Symptoms in Sub-Saharan African Palliative Care 5

6 6 Harding et al. Vol. 44 No. 1 July 2012 Table 1 Continued Burden (Total ¼ 100%) Not Present Not at All A Little Bit Somewhat Quite a Bit Very Much Missing Symptom Prevalence Missing Difficulty swallowing 19.2% (n ¼ 43) % (n ¼ 181) 0 5.4% (n ¼ 12) 4.0% (n ¼ 9) 5.4% (n ¼ 12) 4.5% (n ¼ 10) 0 Mouth sores 18.3% (n ¼ 41) % (n ¼ 183) 0 4.5% (n ¼ 10) 2.2% (n ¼ 5) 3.1% (n ¼ 7) 8.5% (n ¼ 19) 0 Burden (Total ¼ 100%) Not Present Rarely Occasionally Frequently Almost Constantly Missing Symptom Prevalence Missing Psychological problems Feeling sad 75.4% (n ¼ 169) % (n ¼ 55) 11.2% (n ¼ 25) 28.6% (n ¼ 64) 19.6% (n ¼ 44) 16.1% (n ¼ 36) 0 Worrying 73.2% (n ¼ 164) % (n ¼ 60) 10.7% (n ¼ 24) 24.1% (n ¼ 54) 19.2% (n ¼ 43) 18.8 (n ¼ 42) 1 (0.4%) Feeling irritable 70.1% (n ¼ 157) % (n ¼ 67) 16.5% (n ¼ 37) 17.9% (n ¼ 40) 17.9% (n ¼ 40) 17.4% (n ¼ 39) 1 (0.4%) Feeling nervous 48.2% (n ¼ 108) % (n ¼ 116) 12.1% (n ¼ 27) 18.3% (n ¼ 41) 9.4% (n ¼ 21) 8.5% (n ¼ 19) 0 MSAS-SF ¼ Memorial Symptom Assessment Scale-Short Form. a Item not in original MSAS-SF. in high-income settings. 22 Our data represent African successes in delivering such a model of integrated care, as half (49.1%) were taking ART while receiving palliative care. However, it is also of concern that CD4 counts were not available in almost half of participants (45.5%), because an indicator of immune function (and disease progression) is important for palliative care clinicians to be able to provide appropriate care. The absence of CD4 counts disallowed us from including this as an independent variable in the multivariate analyses. With respect to symptom prevalence, it is interesting to note that both physical and psychological problems were among the five most prevalent symptoms. As the sample was receiving palliative care, and coverage and access to palliative care services are very limited in sub-saharan Africa, we may hypothesize that prevalence would be much higher in the general HIV-infected population. Further, the high prevalence of these symptoms (between 71.9% and 82.6%) suggests that patients who are able to receive palliative care require more effective symptom control. The inclusion of the additional items reveals that one of the most severe problems is that of hunger (36.2% reporting this as burdening them very much ), which poses a significant challenge to health care services in the context of low- and middleincome countries. The associations with burden reveal that those on ART do not have significantly different symptom burden, and this is an important clinical message: assessment and palliative care are equally important when ART is present. This is in line with WHO policy that, for patients with HIV disease, palliative care is indicated alongside treatment. Previous studies have determined a similar finding for outpatients, that is, that those on treatment do not have a lower symptom burden. 16,19 Further research is needed to determine whether those on ART experience different symptom clusters that constitute their burden compared with those not on ART. Although it is less surprising that physical function is associated with burden in the analytic models, it is of concern that women experience higher global and physical burden, and a greater number of symptoms.

7 Vol. 44 No. 1 July 2012 HIV Symptoms in Sub-Saharan African Palliative Care 7 Table 2 Associations With Symptom Burden Univariate Analysis Multivariate Analysis Independent Variables b P 95% CI for b b P 95% CI for b Model 1: Global Distress Subscale, r 2 ¼ 19.4% Age , d d d Gender , , AIDS , d d d ART , d d d ECOG , , Household size , , Children , d d d Model 2: Physical Distress Subscale, r 2 ¼ 16.9% Age , d d d Gender , , AIDS , d d d ART , d d d ECOG , , Household size , d d d Children , d d d Model 3: Psychological Distress Subscale, r 2 ¼ 13.7% Age , d d d Gender , d d d AIDS , d d d ART , d d d ECOG , , Household size , d d d Children , d d d Number of Symptoms, r 2 ¼ 19.1% Age , , Gender , , AIDS , d d d ART , d d d ECOG , , Household size , d d d Children , d d d CI ¼ confidence interval; ART ¼antiretroviral therapy; ECOG ¼ Eastern Cooperative Oncology Group. When compared with previous data from Wakeham et al., 5 using the same tool in HIV outpatients in Uganda, our sample had higher global distress (1.74 vs. 1.28), physical distress (1.48 vs. 1.1), and psychological distress (1.56 vs. 0.91). Our sample reported the same three of the five most prevalent symptoms as the Wakeham et al. study, although prevalence was higher for each symptom in our sample: pain (82.6% vs. 76.0%), feeling drowsy (74.1% vs. 61.0%), and lack of energy (71.9% vs. 61.0%). Interestingly, two psychological problems (sadness and worry) were among the five most prevalent symptoms in our sample but not in the Wakeham et al. study. This may reflect the poorer psychological morbidity of our sample, which was receiving palliative care and, therefore, may have had greater disease progression, complex pain and other symptoms, or ART side effects. Comparing our sample with cancer patients recruited during the same study presented here, 23 the same five most prevalent symptoms with very similar prevalence and the same mean number of symptoms were reported. However, the HIV patients in the present analysis reported higher burden compared with the cancer patients (Global Distress Index 1.74 vs. 1.61, Physical Distress Index 1.56 vs. 1.41, and Psychological Distress Index 1.48 vs. 1.33). Therefore, the prevalence of the most common symptoms in palliative care is the same across cancer and HIV, but the associated burden is higher in HIV patients. This may reflect the complex trajectory of HIV disease, its treatment, and the psychological impact of living with an HIV diagnosis.

8 8 Harding et al. Vol. 44 No. 1 July 2012 There are a number of limitations to our study and data. First, the cross-sectional design cannot establish causality. Second, the ability to participate in data collection may exclude those with poorest function; therefore, the estimates of prevalence may be lower for our sample. Third, the absence of biological markers potentially weakened the power of the model, although around one-fifth of the variance was explained. Fourth, although the MSAS is a tool with proven psychometric properties, it has not undergone full validation in Africa. However, previous published data in HIV and African populations have demonstrated its utility and lack of floor/ceiling effects, and the addition of items generated from African palliative care settings enhanced its ability to measure problems of concern to our population. Last, although the study tools were translated by our university partners and cross-checked by clinical researchers fluent in both languages, we did not use a forwardbackward formal process. Our study further develops the previous literature 24 by increasing the sample size and number of centers and identifying associations with burden, and confirms previous studies that show that HIV outpatients on ART in high-income settings do not have lower symptom burden 3,16 compared with those not currently on treatment. We recommend that HIV patients under palliative care receive multidimensional care that reflects the nature of their problems, that is, the social (e.g., hunger), the psychological (e.g., worry and sadness), and the physical (e.g., pain). Patients also may experience spiritual distress and have associated needs, and further research in this area is needed. The effective provision of multidimensional care only can be achieved by taking into account the communication and information needs of patients and families, 25 and family-based care is essential to reflect the family-wide potential impact of advanced disease (as demonstrated by our data on household size). Further clinical research studies are required to determine the symptom burden in nonpalliative care populations in Africa to ensure that the high prevalence and burden of symptoms are managed in all settings where HIV-infected persons present for care, and that this is delivered alongside ART. Disclosures and Acknowledgments This study was supported by the BIG Lottery Fund UK (grant number IG/1/ ). The authors have no conflicts of interest to declare. The authors would like to acknowledge the support of the BIG Lottery Fund, and the five clinical research centers. They are also grateful to the patients and families who participated and to Lucy Bradley for article management. References 1. UNAIDS. AIDS epidemic update Available from JC1700_Epi_Update_2009_en.pdf. Accessed January 20, World Health Organization. Palliative care Available from palliative/palliativecare/en/. Accessed December 19, Harding R, Karus D, Easterbrook P, et al. Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence. Sex Transm Infect 2005;81:5e Harding R, Higginson IJ. Palliative care in sub- Saharan Africa. Lancet 2005;365:1971e Wakeham K, Harding R, Bamukama D, et al. Symptom burden in HIV infected adults at time of HIV diagnosis in rural Uganda. J Palliat Med 2010; 13:375e Peltzer K, Phaswana-Mafuya N. The symptom experience of people living with HIV and AIDS in the Eastern Cape, South Africa. BMC Health Serv Res 2008;8: Kikule E. A good death in Uganda: survey of needs for palliative care for terminally ill people in urban areas. BMJ 2003;327:192e Gwyther L, Rawlinson F. Symptom control in palliative care: essential for quality of life. S Afr Med J 2004;94: Harding R, Powell RA, Kiyange F, Downing J, Mwangi-Powell F. Provision of pain- and symptomrelieving drugs for HIV/AIDS in sub-saharan Africa. J Pain Symptom Manage 2010;40:405e Logie DE, Harding R. An evaluation of a morphine public health programme for cancer and AIDS pain relief in Sub-Saharan Africa. BMC Public Health 2005;5: Maritz J, Benatar M, Dave JA, et al. HIV neuropathy in South Africans: frequency, characteristics, and risk factors. Muscle Nerve 2010;41:599e Mphahlele N, Mitchell D, Kamerman P. Validation of the Wisconsin Brief Pain Questionnaire in

9 Vol. 44 No. 1 July 2012 HIV Symptoms in Sub-Saharan African Palliative Care 9 a multilingual South African population. J Pain Symptom Manage 2008;36:396e Oken M, Creech R, Tormey D, et al. Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol 1982;5:649e Chang VT, Hwang SS, Feuerman M, Kasimis BS, Thaler HT. The Memorial Symptom Assessment Scale Short Form (MSAS-SF). Cancer 2000;89: 1162e Brechtl JR, Breitbart W, Galietta M, Krivo S, Rosenfeld B. The use of highly active antiretroviral therapy (HAART) in patients with advanced HIV infection: impact on medical, palliative care, and quality of life outcomes. J Pain Symptom Manage 2001; 21:41e Harding R, Molloy T, Easterbrook P, Frame K, Higginson IJ. Is antiretroviral therapy associated with symptom prevalence and burden? Int J STD AIDS 2006;17:400e Karus D, Raveis VH, Alexander C, et al. Patient reports of symptoms and their treatment at three palliative care projects servicing individuals with HIV/AIDS. J Pain Symptom Manage 2005;30: 408e Selwyn PA, Rivard M, Kappell D, et al. Palliative care for AIDS at a large urban teaching hospital: program description and preliminary outcomes. J Palliat Med 2003;6:461e Harding R, Lampe FC, Norwood S, et al. Symptoms are highly prevalent among HIV outpatients and associated with poor adherence and unprotected sexual intercourse. Sex Transm Infect 2010; 86:520e Altman DG. Practical statistics for medical research. London, UK: Chapman and Hall/CRC, Snow RC, Madalane M, Poulsen M. Are men testing? Sex differentials in HIV testing in Mpumalanga Province, South Africa. AIDS Care 2010;22: 1060e Selwyn PA, Forstein M. Overcoming the false dichotomy of curative vs. palliative care for late-stage HIV/AIDS: Let me live the way I want to live, until I can t. JAMA 2003;290:806e Harding R, Selman L, Agupio G, et al. The prevalence and burden of symptoms among cancer patients attending palliative care in 2 African countries. Eur J Cancer 2011;47:51e Shawn ER, Campbell L, Mnguni MB, Defilippi KM, Williams AB. The spectrum of symptoms among rural South Africans with HIV infection. J Assoc Nurses AIDS Care 2005;16:12e Selman L, Higginson IJ, Agupio G, et al. Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative study. BMJ 2009;338:b1326.