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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2011

Open Access 01-12-2011 | Research

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

Authors: Lucy E Selman, Irene J Higginson, Godfrey Agupio, Natalya Dinat, Julia Downing, Liz Gwyther, Thandi Mashao, Keletso Mmoledi, Tony Moll, Lydia Mpanga Sebuyira, Barbara Ikin, Richard Harding

Published in: Health and Quality of Life Outcomes | Issue 1/2011

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Abstract

Background

Quality 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.

Methods

A 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.

Results

285 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.

Conclusions

Feeling 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.
Literature
1.
UNAIDS: AIDS Epidemic Update 2007. Geneva; 2007.
2.
UNAIDS, WHO: UNAIDS/WHO 2006 Report on the global AIDS epidemic. 2006.
3.
4.
Parkin P, Sitas F, Chirenje M, Stein L, Abratt R, Wabinga H: Part I: Cancer in Indigenous Africans - burden, distribution, and trends. Lancet Oncology 2008, 9: 383–692. 10.1016/S1470-2045(08)70175-XCrossRef
5.
Harding R, Higginson IJ: Palliative care in sub-Saharan Africa. Lancet 2005, 365: 1971–1977. 10.1016/S0140-6736(05)66666-4PubMedCrossRef
6.
Clark D, Wright M, Hunt J, Lynch T: Hospice and Palliative Care Development in Africa: A Multi-Method Review of Services and Experiences. J Pain Symp Manage 2007, 33: 698–710. 10.1016/j.jpainsymman.2006.09.033CrossRef
7.
WHO: Equitable access to essential medicines: A framework of collective action. 2004.
8.
Soares L: Poor social conditions, criminality and urbal violence: unmentioned barriers for effective cancer pain control at the end of life. J Pain Symp Manage 2003, 26: 693–695. 10.1016/S0885-3924(03)00251-3CrossRef
9.
10.
Harding R, Stewart K, Marconi K, O'Neill JF, Higginson IJ: Current HIV/AIDS end-of-life care in sub-Saharan Africa: a survey of models, services, challenges and priorities. BMC Public Health 2003, 3: 33. 10.1186/1471-2458-3-33PubMedCentralPubMedCrossRef
11.
Ministry of Health RoU: National Sector Strategic Plan 2000/01 - 2004/05. Kampala, Ministry of Health; 2000.
12.
Jagwe J, Merriman A: Uganda: Delivering Analgesia in Rural Africa: Opioid Availability and Nurse Prescribing. J Pain Symp Manage 2007, 33: 547–551. 10.1016/j.jpainsymman.2007.02.014CrossRef
13.
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: 82. 10.1186/1471-2458-5-82PubMedCentralPubMedCrossRef
14.
Gwyther E: South Africa: The status of palliative care. J Pain Symp Manage 2002, 24: 236–238. 10.1016/S0885-3924(02)00455-4CrossRef
15.
Beck SL, Aocn : Health policy, health services, and cancer pain management in the New South Africa. J Pain Symp Manage 1999, 17: 16–26. 10.1016/S0885-3924(98)00120-1CrossRef
16.
Uys LR: Evaluation of the integrated community-based home care model. Curationis 2001, 24: 75–82.PubMedCrossRef
17.
Department of Health GPG: Speech by Gauteng Health MEC Brian Hlongwa at the launch of the Centre for Excellent Palliative Care at Chris Hani Baragwanath Hospital, Soweto. 2008.
18.
Harding R, Powell RA, Downing J, Connor SR, Mwangi-Powell F, Defilippi K, Cameron S, Garanganga E, Kikule E, Alexander C: Generating an African palliative care evidence base: The context, need, challenges and strategies. J Pain Symp Manage 2008, 36: 304–309. 10.1016/j.jpainsymman.2008.04.008CrossRef
19.
WHOQOL Group: The World Health Organization Quality of Life assessment (WHOQOL): Position paper from the World Health Organization. Soc Sci Med 1995, 46: 1569–1585.CrossRef
20.
21.
Jocham HR, Dassen T, Widdershoven G, Halfens R: Quality of life in palliative care cancer patients: a literature review. J Clin Nurs 2006, 15: 1188–1195. 10.1111/j.1365-2702.2006.01274.xPubMedCrossRef
22.
23.
Higginson IJ, Carr AJ: Measuring quality of life: Using quality of life measures in the clinical setting. BMJ 2001, 322: 1297–1300. 10.1136/bmj.322.7297.1297PubMedCentralPubMedCrossRef
24.
Albers G, Echteld MA, de Vet HC, Onwuteaka-Philipsen BD, van der Linden MH, Deliens L: Evaluation of quality-of-life measures for use in palliative care: a systematic review. PALLIAT MED 2010, 24: 17–37. 10.1177/0269216309346593PubMedCrossRef
25.
Harding R, Dinat N, Sebuyira LM: Measuring and improving palliative care in South Africa: multiprofessional clinical perspectives on development and application of appropriate outcome tools. Progress in Palliative Care 2007, 15: 55–59. 10.1179/096992607X177845CrossRef
26.
Powell RA, Downing J, Radbruch L, Mwangi-Powell F, Harding R: Advancing palliative care research in sub-Saharan Africa: from the Venice declaration, to Nairobi and beyond. PALLIAT MED 2008, 22: 885–887. 10.1177/0269216308098094PubMedCrossRef
27.
Sepulveda C, Habiyambere V, Amandua J, Borok M, Kikule E, Mudanga B, Ngoma T, Solomon B: Quality care at the end of life in Africa. BMJ 2003, 327: 209–213. 10.1136/bmj.327.7408.209PubMedCentralPubMedCrossRef
28.
Sukati NA, Mndebele SC, Makoa ET, Ramukumba TS, Makoae LN, Seboni NM, Human S, Holzemer WL: HIV/AIDS symptom management in Southern Africa. J Pain Symptom Manage 2005, 29: 185–192. 10.1016/j.jpainsymman.2004.05.007PubMedCrossRef
29.
Campbell C, Foulis CA, Maimane S, Sibiya Z: "I Have an Evil Child at My House": Stigma and HIV/AIDS Management in a South African Community. Am J Public Health 2005, 95: 808–815. 10.2105/AJPH.2003.037499PubMedCentralPubMedCrossRef
30.
Selman L, Higginson IJ, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll AP, Sebuyira LM, 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. 10.1136/bmj.b1326PubMedCentralPubMedCrossRef
31.
Murray SA, Grant E, Grant A, Kendall M: Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers. BMJ 2003, 326: 368. 10.1136/bmj.326.7385.368PubMedCentralPubMedCrossRef
32.
Makoae LN, Seboni NM, Molosiwa K, Moleko M, Human S, Sukati NA, Holzemer WL: The symptom experience of people living with HIV/AIDS in southern Africa. JANAC 2005, 16: 22–32. 10.1016/j.jana.2005.03.005PubMed
33.
Bajunirwe F, Tisch DJ, King CH, Arts EJ, Debanne SM, Sethi AK: Quality of life and social support among patients receiving antiretroviral therapy in Western Uganda. AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV 2009, 21: 271–279.CrossRef
34.
Mast TC, Kigozi G, Wabwire-Mangen F, Black R, Sewankambo N, Serwadda D, Gray R, Wawer M, Wu AW: Measuring quality of life among HIV-infected women using a culturally adapted questionnaire in Rakai district, Uganda. AIDS Care 2004, 16: 81–94. 10.1080/09540120310001633994PubMedCrossRef
35.
Cohen SRM: Existential well-being is an important determinant of quality of life: Evidence from the McGill Quality of Life Questionnaire. Cancer 1996, 77: 01. 10.1002/(SICI)1097-0142(19960201)77:3<576::AID-CNCR22>3.0.CO;2-0CrossRef
36.
Peltzer K, Phaswana-Mafuya N: Health-related quality of life in a sample of HIV-infected South Africans. African Journal of AIDS Research 2008, 7: 209–218. 10.2989/AJAR.2008.7.2.6.523PubMedCrossRef
37.
The WHOQOL HIV Group: Initial steps to developing the World Health Organization's Quality of Life Instrument (WHOQOL) module for international assessment in HIV/AIDS. AIDS Care 2003, 15: 347–357. 10.1080/0954012031000105405CrossRef
38.
O'Connell K, Skevington S, Saxena S, WHOQOL HIV Group: Preliminary development of the World Health Organsiation's Quality of Life HIV instrument (WHOQOL-HIV): analysis of the pilot version. Soc Sci Med 2003, 57: 1259–1275.PubMedCrossRef
39.
O'Connell KA, Saxena S, Skevington SM, WHOQOL HIV Group: WHOQOL-HIV for quality of life assessment among people living with HIV and AIDS: Results from the field test. AIDS Care 2004, 16: 889.
40.
Pedroso B, Pilatti LA, de Francisco AC, dos Santos CB: Quality of life assessment in people with HIV: analysis of the WHOQOL-HIV syntax. AIDS Care 2010, 22: 361–372. 10.1080/09540120903111502PubMedCrossRef
41.
Hearn J, Higginson IJ: Outcome measures in palliative care for advanced cancer patients: a review. J Public Health 1997, 19: 193–199.CrossRef
42.
Higginson IJ: Quality criteria valuable with slight modification. Journal of Clinical Epidemiology 2007, 60: 1315. 10.1016/j.jclinepi.2007.06.003PubMedCrossRef
43.
Byock I, Merriman MP: Measuring quality of life for patients with terminal illness: the Missoula-VITAS quality of life index. PALLIAT MED 1998, 12: 231–244. 10.1191/026921698670234618PubMedCrossRef
44.
Namisango E, Katabira E, Karamagi C, Baguma P: Validation of the Missoula-Vitas Quality-of-Life Index among patients with advanced AIDS in urban Kampala, Uganda. J Pain Symptom Manage 2007, 33: 189–202. 10.1016/j.jpainsymman.2006.11.001PubMedCrossRef
45.
Harding R, Selman L, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Mpanga Sebuyira L, Ikin B, et al.: The prevalence and burden of symptoms amongst cancer patients attending palliative care in two African countries. European Journal of Cancer 2011, 47: 51–56. 10.1016/j.ejca.2010.08.003PubMedCrossRef
46.
Harding R, Selman L, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll T, Mpanga Sebuyira L, et al.: Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale. Health and Quality of Life Outcomes 2010, 8: 10. 10.1186/1477-7525-8-10PubMedCentralPubMedCrossRef
47.
George LK: Research design in end-of-life research: state of science. Gerontologist 2002,42(Spec No 3):86–98.PubMedCrossRef
48.
Creed-Kanashiro H, Ore B, Scurrah M, Gil A, Penny M: Conducting Research in Developing Countries: Experiences of the Informed Consent Process from Community Studies in Peru. J Nutr 2005, 135: 925–928.PubMed
49.
Shapiro HT, Meslin EM: Ethical Issues in the Design and Conduct of Clinical Trials in Developing Countries. N Engl J Med 2001, 345: 139–142. 10.1056/NEJM200107123450212PubMedCrossRef
50.
Byock I: The nature of suffering and the nature of opportunity at the end of life. Clinics in Geriatric Medicine 1996, 12: 237–252.PubMed
51.
Steinhauser KE, Voils CI, Clipp EC, Bosworth HB, Christakis NA, Tulsky JA: "Are you at peace?": one item to probe spiritual concerns at the end of life. Arch Intern Med 2006, 166: 101–105. 10.1001/archinte.166.1.101PubMedCrossRef
52.
Selman L, Siegert RJ, Higginson IJ, Agupio G, Dinat N, Downing J, Gwyther E, Mashao T, Mmoledi K, Moll A, et al.: The MVQOLI successfully captured quality of life in African palliative care: a factor analysis. Journal of Clinical Epidemiology 2011, in press.
53.
Schwartz CE, Merriman MP, Reed G, Byock I: Evaluation of the Missoula-VITAS Quality of Life Index--revised: research tool or clinical tool? J Palliat Med 2005, 8: 121–135. 10.1089/jpm.2005.8.121PubMedCrossRef
54.
Oken M, Creech R, Tormey D, Horton J, Davis T, McFadden E, Carbone P: Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol 1982, 5: 649–655. 10.1097/00000421-198212000-00014PubMedCrossRef
55.
Larkin PJ, erckx de Casterle B, Schotsmans P: Multilingual Translation Issues in Qualitative Research: Reflections on a Metaphorical Process. Qual Health Res 2007, 17: 468–476. 10.1177/1049732307299258PubMedCrossRef
56.
Anderson JP, Kaplan RM, Coons SJ, Schneiderman LJ: Comparison of the Quality of Well-Being Scale and the SF-36 Results Among Two Samples of Ill Adults: AIDS and Other Illnesses. Journal of Clinical Epidemiology 1998, 51: 755–762. 10.1016/S0895-4356(98)00046-8PubMedCrossRef
57.
Hays RD, Cunningham WE, Sherbourne CD, Wilson IB, Wu AW, Cleary PD, McCaffrey DF, Fleishman JA, Crystal S, Collins R, et al.: Health-related quality of life in patients with human immunodeficiency virus infection in the United States: results from the HIV Cost and Services Utilization Study. Am J Med 2000, 108: 714–722. 10.1016/S0002-9343(00)00387-9PubMedCrossRef
58.
Steele LL, Mills B, Hardin SR, Hussey LC: The quality of life of hospice patients: patient and provider perceptions. Am J Hosp Palliat Care 2005, 22: 95–110. 10.1177/104990910502200205PubMedCrossRef
59.
Parkin DM, Sitas F, Chirenje M, Stein L, Abratt R, Wabinga H: Part I: Cancer in Indigenous Africans - burden, distribution, and trends. Lancet Oncology 2008, 9: 383–692. 10.1016/S1470-2045(08)70175-XCrossRef
60.
Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K: Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain. PALLIAT MED 1997, 11: 3–20. 10.1177/026921639701100102PubMedCrossRef
61.
Heyland DK, Cook DJ, Rocker GM, Dodek PM, Kutsogiannis DJ, Skrobik Y, Jiang X, Day AG, Cohen SR: Defining priorities for improving end-of-life care in Canada. CMAJ 2010, 182: E747–752. 10.1503/cmaj.100131PubMedCentralPubMedCrossRef
62.
Gustafson DH, Arora NK, Nelson EC, Boberg EW: Increasing understanding of patient needs during and after hospitalization. Jt Comm J Qual Improv 2001, 27: 81–92.PubMed
63.
Clark PA, Drain M, Malone MP: Addressing patients' emotional and spiritual needs. Jt Comm J Qual Saf 2003, 29: 659–670.PubMed
64.
Schwartz C, Sprangers MAG: Adaptation to changing health - response shift in quality-of-life research. Washington: American Psychological Association; 2000.CrossRef
65.
Westerman MJ, Hak T, Echteld MA, Groen HJM, van der Wal G: Change in what matters to palliative patients: eliciting information about adaptation with SEIQoL-DW. PALLIAT MED 2007, 21: 581–586. 10.1177/0269216307081938PubMedCrossRef
66.
Padilla GV, Ferrell B, Grant MM, Rhiner M: Defining the content domain of quality of life for cancer patients with pain. Cancer Nurs 1990, 13: 108–115. 10.1097/00002820-199004000-00006PubMedCrossRef
67.
Fegg MJ, Wasner M, Neudert C, Borasio GD: Personal Values and Individual Quality of Life in Palliative Care Patients. J Pain Symp Manage 2005, 30: 154–159. 10.1016/j.jpainsymman.2005.02.012CrossRef
68.
Padilla GV, Mishel MH, Grant MM: Uncertainty, appraisal and quality of life. Quality of Life Research 1992, 1: 155–165. 10.1007/BF00635615PubMedCrossRef
69.
Cohen SR, Boston P, Mount BM, Porterfield P: Changes in quality of life following admission to palliative care units. PALLIAT MED 2001, 15: 363–371. 10.1191/026921601680419401PubMedCrossRef
70.
Bolmsjo I: Existential issues in palliative care - interviews with cancer patients. J Palliat Care 2000, 16: 20–24.PubMed
71.
Bolmsjo I: Existential issues in palliative care: interviews of patients with amyotrophic lateral sclerosis. J Palliat Med 2001, 4: 499–505. 10.1089/109662101753381647PubMedCrossRef
72.
Sherman DW, Ye XY, McSherry C, Parkas V, Calabrese M, Gatto M: Quality of life of patients with advanced cancer and acquired immune deficiency syndrome and their family caregivers. J Palliat Med 2006, 9: 948–963. 10.1089/jpm.2006.9.948PubMedCrossRef
73.
Collins K, Harding R: Improving HIV management in sub-Saharan Africa: How much palliative care is needed? AIDS Care 2007, 19: 1304–1306. 10.1080/09540120701402863PubMedCrossRef
74.
Sepulveda C, Habiyambere V, Amandua J, Borok M, Kikule E, Mudanga B, Ngoma T, Solomon B: Quality care at the end of life in Africa. BMJ 2003, 327: 209–213. 10.1136/bmj.327.7408.209PubMedCentralPubMedCrossRef
75.
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: 12–23. 10.1016/j.jana.2005.09.002PubMedCrossRef
76.
Beaton DE, Bombardier C, Guillemin F, Ferraz MB: Guidelines for the process of cross-cultural adaptation of self-report measures. Spine (Phila Pa 1976) 2000, 25: 3186–3191.CrossRef
77.
A Clinical Guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa. 2006.
78.
Selman L, Harding R, Agupio G, Fox P, Galimaka D, Mmoledi K, Higginson IJ, The Spiritual Care in sub-Saharan Africa Advisory Group: Spiritual care recommendations for people receiving palliative care in sub-Saharan Africa. 2010.
79.
Counselling Guidelines on Palliative Care and Bereavement. 2004.
80.
Solano JP, Gomes B, Higginson IJ: A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symp Manage 2006, 31: 58–69. 10.1016/j.jpainsymman.2005.06.007CrossRef
81.
Karus D, Raveis VH, Alexander C, Hanna B, Selwyn P, Marconi K, Higginson I: Patient reports of symptoms and their treatment at three palliative care projects servicing individuals with HIV/AIDS. J Pain Symp Manage 2005, 30: 408–417. 10.1016/j.jpainsymman.2005.04.011CrossRef
82.
Cotton S, Puchalski C, Sherman SN, Mrus JM, Peterman AH, Feinberg J, Pargament KI, Justice AC, Leonard AC, Tsevat J: Spirituality and religion in patients with HIV/AIDS. J Gen Intern Med 2006, 21: S4-S13.
Metadata
Title
Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study
Authors
Lucy E Selman
Irene J Higginson
Godfrey Agupio
Natalya Dinat
Julia Downing
Liz Gwyther
Thandi Mashao
Keletso Mmoledi
Tony Moll
Lydia Mpanga Sebuyira
Barbara Ikin
Richard Harding
Publication date
01-12-2011
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2011
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-9-21

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