Skip to main content
Top
Published in: BMC Infectious Diseases 1/2014

Open Access 01-12-2014 | Research article

Quality of life and wellbeing among HIV outpatients in East Africa: a multicentre observational study

Authors: Richard Harding, Victoria Simms, Suzanne Penfold, Julia Downing, Eve Namisango, Richard A Powell, Faith Mwangi-Powell, Scott Moreland, Nancy Gikaara, Mackuline Atieno, Irene J Higginson

Published in: BMC Infectious Diseases | Issue 1/2014

Login to get access

Abstract

Background

Global health investment has reduced HIV mortality and transmission. However, little is known of patient-reported outcomes alongside ART rollout. This study aimed to measure wellbeing using patient-reported outcome measures (PROMS) among outpatients at PEPFAR-funded facilities.

Methods

In a multicentre 2 country cross-sectional study, adults attending 12 facilities in Kenya and Uganda gave self-reported data on quality of life (physical and mental wellbeing dimensions), functional and a measure of multidimensional problems (physical, psychological, social and spiritual).

Results

Among the 1,337 participants, multidimensional problems were more common in psychological, spiritual and social domains than in physical. In multivariable analysis using GEE to adjust for facility effect, the mental health subscale of quality of life was lower for people with limited functional status (B = -5.27, 95% CI -5.99, 1. -4.56 p < 0.001) and higher for wealthier people (B = 0.91, 95% CI 0.48, 1.33, p < 0.001). The physical health subscale of quality of life was lower for those with limited functional status (B = -8.58, 95% CI -9.46 to -7.70, p < 0.001) and those who had a caregiver present (B = -1.97, 95% CI -3.72 to -0.23, p = 0.027), higher for wealthier people (B = 1.14, 95% CI 0.65, 1.64, p < 0.001), and positively associated with CD4 count (B = 1.61, 95% CI 1.08-2.14, p < 0.001). Multidimensional problems were more burdensome for people with limited functional status (B = -2.06, 95% CI -2.46 to -1.66, p < 0.001), and less burdensome with more education (B = 0.63, 95% CI 0.25-1.00, p = 0.001) or ART use (B = 0.94, 95% CI 0.34-1.53, p = 0.002).

Conclusions

Multidimensional problems are highly prevalent, and worse with declining function. Importantly, ART use does not appear to be protective for self-reported physical and mental dimensions of quality of life. Assessment and management of self-reported wellbeing must form part of HIV care and treatment services to ensure maximum benefit from ART investment.
Literature
1.
go back to reference Sherr L, Lampe F, Fisher M, Arthur G, Anderson J, Zetler S, Johnson M, Edwards S, Harding R: Suicidal ideation in UK HIV clinic attenders. AIDS. 2008, 22 (13): 1651-1658. 10.1097/QAD.0b013e32830c4804.CrossRefPubMed Sherr L, Lampe F, Fisher M, Arthur G, Anderson J, Zetler S, Johnson M, Edwards S, Harding R: Suicidal ideation in UK HIV clinic attenders. AIDS. 2008, 22 (13): 1651-1658. 10.1097/QAD.0b013e32830c4804.CrossRefPubMed
2.
go back to reference Harding R, Clucas C, Lampe FC, Date HL, Fisher M, Johnson M, Edwards S, Anderson J, Sherr L: What factors are associated with patient self-reported health status among HIV outpatients? A multi-centre UK study of biomedical and psychosocial factors. AIDS Care. 2012, 24 (8): 963-971. 10.1080/09540121.2012.668175.CrossRefPubMed Harding R, Clucas C, Lampe FC, Date HL, Fisher M, Johnson M, Edwards S, Anderson J, Sherr L: What factors are associated with patient self-reported health status among HIV outpatients? A multi-centre UK study of biomedical and psychosocial factors. AIDS Care. 2012, 24 (8): 963-971. 10.1080/09540121.2012.668175.CrossRefPubMed
3.
go back to reference Harding R, Lampe FC, Norwood S, Date HL, Clucas C, Fisher M, Johnson M, Edwards S, Anderson J, Sherr L: Symptoms are highly prevalent among HIV outpatients and associated with poor adherence and unprotected sexual intercourse. Sex Transm Infect. 2010, 86 (7): 520-524. 10.1136/sti.2009.038505.CrossRefPubMed Harding R, Lampe FC, Norwood S, Date HL, Clucas C, Fisher M, Johnson M, Edwards S, Anderson J, Sherr L: Symptoms are highly prevalent among HIV outpatients and associated with poor adherence and unprotected sexual intercourse. Sex Transm Infect. 2010, 86 (7): 520-524. 10.1136/sti.2009.038505.CrossRefPubMed
4.
go back to reference Lampe FC, Harding R, Smith CJ, Phillips AN, Johnson M, Sherr L: Physical and psychological symptoms and risk of virologic rebound among patients with virologic suppression on antiretroviral therapy. J Acquir Immune Defic Syndr. 2010, 54 (5): 500-505. 10.1097/QAI.0b013e3181ce6afe.CrossRefPubMed Lampe FC, Harding R, Smith CJ, Phillips AN, Johnson M, Sherr L: Physical and psychological symptoms and risk of virologic rebound among patients with virologic suppression on antiretroviral therapy. J Acquir Immune Defic Syndr. 2010, 54 (5): 500-505. 10.1097/QAI.0b013e3181ce6afe.CrossRefPubMed
5.
go back to reference Harding R, Selman L, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll T, Sebuyira LM, Ikin B, Higginson IJ: Prevalence, burden, and correlates of physical and psychological symptoms among HIV palliative care patients in sub-Saharan Africa: an international multicenter study. J Pain Symptom Manage. 2012, 44 (1): 1-9. 10.1016/j.jpainsymman.2011.08.008.CrossRefPubMed Harding R, Selman L, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll T, Sebuyira LM, Ikin B, Higginson IJ: Prevalence, burden, and correlates of physical and psychological symptoms among HIV palliative care patients in sub-Saharan Africa: an international multicenter study. J Pain Symptom Manage. 2012, 44 (1): 1-9. 10.1016/j.jpainsymman.2011.08.008.CrossRefPubMed
6.
go back to reference Wakeham K, Harding R, Bamukama-Namakoola D, Levin J, Kissa J, Parkes-Ratanshi R, Muzaaya G, Grosskurth H, Lalloo DG: Symptom burden in HIV-infected adults at time of HIV diagnosis in rural Uganda. J Palliat Med. 2010, 13 (4): 375-380. 10.1089/jpm.2009.0259.CrossRefPubMed Wakeham K, Harding R, Bamukama-Namakoola D, Levin J, Kissa J, Parkes-Ratanshi R, Muzaaya G, Grosskurth H, Lalloo DG: Symptom burden in HIV-infected adults at time of HIV diagnosis in rural Uganda. J Palliat Med. 2010, 13 (4): 375-380. 10.1089/jpm.2009.0259.CrossRefPubMed
9.
go back to reference Simms VM, Higginson IJ, Harding R: What palliative care-related problems do patients experience at HIV diagnosis? A systematic review of the evidence. J Pain Symptom Manage. 2011, 42 (5): 734-753. 10.1016/j.jpainsymman.2011.02.014.CrossRefPubMed Simms VM, Higginson IJ, Harding R: What palliative care-related problems do patients experience at HIV diagnosis? A systematic review of the evidence. J Pain Symptom Manage. 2011, 42 (5): 734-753. 10.1016/j.jpainsymman.2011.02.014.CrossRefPubMed
10.
go back to reference Harding R, Easterbrook P, Dinat N, Higginson IJ: Pain and symptom control in HIV disease: under-researched and poorly managed. Clin Infect Dis. 2005, 40 (3): 491-492. 10.1086/427037.CrossRefPubMed Harding R, Easterbrook P, Dinat N, Higginson IJ: Pain and symptom control in HIV disease: under-researched and poorly managed. Clin Infect Dis. 2005, 40 (3): 491-492. 10.1086/427037.CrossRefPubMed
11.
go back to reference Simms V, Higginson IJ, Harding R: Integration of palliative care throughout HIV disease. Lancet Infect Dis. 2012, 12 (7): 571-575. 10.1016/S1473-3099(12)70085-3.CrossRefPubMed Simms V, Higginson IJ, Harding R: Integration of palliative care throughout HIV disease. Lancet Infect Dis. 2012, 12 (7): 571-575. 10.1016/S1473-3099(12)70085-3.CrossRefPubMed
12.
go back to reference Harding R, Simms V, Krakauer E, Delima L, Downing J, Garanganga E, Green K, Gwyther L, Lohman D: Quality HIV care to the end of life. Clin Infect Dis. 2011, 52 (4): 553-554. 10.1093/cid/ciq180. author reply 554CrossRefPubMed Harding R, Simms V, Krakauer E, Delima L, Downing J, Garanganga E, Green K, Gwyther L, Lohman D: Quality HIV care to the end of life. Clin Infect Dis. 2011, 52 (4): 553-554. 10.1093/cid/ciq180. author reply 554CrossRefPubMed
13.
go back to reference Dawson J, Doll H, Fitzpatrick R, Jenkinson C, Carr AJ: The routine use of patient reported outcome measures in healthcare settings. BMJ. 2010, 340: c186-10.1136/bmj.c186.CrossRefPubMed Dawson J, Doll H, Fitzpatrick R, Jenkinson C, Carr AJ: The routine use of patient reported outcome measures in healthcare settings. BMJ. 2010, 340: c186-10.1136/bmj.c186.CrossRefPubMed
14.
go back to reference Bendavid E, Bhattacharya J: The President’s Emergency Plan for AIDS Relief in Africa: an evaluation of outcomes. Ann Intern Med. 2009, 150 (10): 688-695. 10.7326/0003-4819-150-10-200905190-00117.CrossRefPubMedPubMedCentral Bendavid E, Bhattacharya J: The President’s Emergency Plan for AIDS Relief in Africa: an evaluation of outcomes. Ann Intern Med. 2009, 150 (10): 688-695. 10.7326/0003-4819-150-10-200905190-00117.CrossRefPubMedPubMedCentral
15.
go back to reference Reynolds HW, Janowitz B, Wilcher R, Cates W: Contraception to prevent HIV-positive births: current contribution and potential cost savings in PEPFAR countries. Sex Transm Infect. 2008, 84 (Suppl 2): 49-53. 10.1136/sti.2008.030049.CrossRef Reynolds HW, Janowitz B, Wilcher R, Cates W: Contraception to prevent HIV-positive births: current contribution and potential cost savings in PEPFAR countries. Sex Transm Infect. 2008, 84 (Suppl 2): 49-53. 10.1136/sti.2008.030049.CrossRef
16.
go back to reference Harding R, Simms V, Penfold S, McCrone P, Moreland S, Downing J, Powell RA, Mwangi-Powell F, Namisango E, Fayers P, Curtis S, Higginson IJ: Multi-centred mixed-methods PEPFAR HIV care & support public health evaluation: study protocol. BMC Public Health. 2010, 10: 584-10.1186/1471-2458-10-584.CrossRefPubMedPubMedCentral Harding R, Simms V, Penfold S, McCrone P, Moreland S, Downing J, Powell RA, Mwangi-Powell F, Namisango E, Fayers P, Curtis S, Higginson IJ: Multi-centred mixed-methods PEPFAR HIV care & support public health evaluation: study protocol. BMC Public Health. 2010, 10: 584-10.1186/1471-2458-10-584.CrossRefPubMedPubMedCentral
18.
go back to reference 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 (1): 81-94. 10.1080/09540120310001633994.CrossRefPubMed 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 (1): 81-94. 10.1080/09540120310001633994.CrossRefPubMed
19.
go back to reference Wu AW, Revicki DA, Jacobson D, Malitz FE: Evidence for reliability, validity and usefulness of the Medical Outcomes Study HIV Health Survey (MOS-HIV). Qual Life Res. 1997, 6 (6): 481-493. 10.1023/A:1018451930750.CrossRefPubMed Wu AW, Revicki DA, Jacobson D, Malitz FE: Evidence for reliability, validity and usefulness of the Medical Outcomes Study HIV Health Survey (MOS-HIV). Qual Life Res. 1997, 6 (6): 481-493. 10.1023/A:1018451930750.CrossRefPubMed
20.
go back to reference Wu AW, Hanson KA, Harding G, Haider S, Tawadrous M, Khachatryan A, Pashos CL, Simpson KN: Responsiveness of the MOS-HIV and EQ-5D in HIV-infected adults receiving antiretroviral therapies. Health Qual Life Outcomes. 2013, 11: 42-10.1186/1477-7525-11-42.CrossRefPubMedPubMedCentral Wu AW, Hanson KA, Harding G, Haider S, Tawadrous M, Khachatryan A, Pashos CL, Simpson KN: Responsiveness of the MOS-HIV and EQ-5D in HIV-infected adults receiving antiretroviral therapies. Health Qual Life Outcomes. 2013, 11: 42-10.1186/1477-7525-11-42.CrossRefPubMedPubMedCentral
21.
go back to reference Harding R, Selman L, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll T, Sebuyira LM, Panjatovic B, Higginson IJ: Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale. Health Qual Life Outcomes. 2010, 8: 10-10.1186/1477-7525-8-10.CrossRefPubMedPubMedCentral Harding R, Selman L, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll T, Sebuyira LM, Panjatovic B, Higginson IJ: Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale. Health Qual Life Outcomes. 2010, 8: 10-10.1186/1477-7525-8-10.CrossRefPubMedPubMedCentral
22.
go back to reference Oken MM, Creech RH, Tormey DC, Horton J, Davis TE, McFadden ET, Carbone PP: Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol. 1982, 5 (6): 649-655. 10.1097/00000421-198212000-00014.CrossRefPubMed Oken MM, Creech RH, Tormey DC, Horton J, Davis TE, McFadden ET, Carbone PP: Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol. 1982, 5 (6): 649-655. 10.1097/00000421-198212000-00014.CrossRefPubMed
23.
go back to reference Revicki DA, Sorensen S, Wu AW: Reliability and validity of physical and mental health summary scores from the Medical Outcomes Study HIV Health Survey. Med Care. 1998, 36 (2): 126-137. 10.1097/00005650-199802000-00003.CrossRefPubMed Revicki DA, Sorensen S, Wu AW: Reliability and validity of physical and mental health summary scores from the Medical Outcomes Study HIV Health Survey. Med Care. 1998, 36 (2): 126-137. 10.1097/00005650-199802000-00003.CrossRefPubMed
24.
go back to reference Gwatkin DR, Rustein S, Johnson K, Pande RP, Wagstaff A: Socioeconomic Differences in Health, Nutrition, and Population in Ghana. Country Reports on HNP and Poverty. 2000, World Bank, Washington DC, USA Gwatkin DR, Rustein S, Johnson K, Pande RP, Wagstaff A: Socioeconomic Differences in Health, Nutrition, and Population in Ghana. Country Reports on HNP and Poverty. 2000, World Bank, Washington DC, USA
25.
go back to reference Selman L, Harding R, Higginson I, Gysels M, Speck P: Spiritual wellbeing in sub-Saharan Africa: the meaning and prevalence of ‘feeling at peace’. BMJ Support Palliat Care. 2011, 1 (Suppl 1): A22-10.1136/bmjspcare-2011-000020.66.CrossRef Selman L, Harding R, Higginson I, Gysels M, Speck P: Spiritual wellbeing in sub-Saharan Africa: the meaning and prevalence of ‘feeling at peace’. BMJ Support Palliat Care. 2011, 1 (Suppl 1): A22-10.1136/bmjspcare-2011-000020.66.CrossRef
26.
go back to reference Selman L, Simms V, Penfold S, Powell RA, Mwangi-Powell F, Downing J, Gikaara N, Munene G, Higginson IJ, Harding R: ‘My dreams are shuttered down and it hurts lots’-a qualitative study of palliative care needs and their management by HIV outpatient services in Kenya and Uganda. BMC Palliat Care. 2013, 12 (1): 35-10.1186/1472-684X-12-35.CrossRefPubMedPubMedCentral Selman L, Simms V, Penfold S, Powell RA, Mwangi-Powell F, Downing J, Gikaara N, Munene G, Higginson IJ, Harding R: ‘My dreams are shuttered down and it hurts lots’-a qualitative study of palliative care needs and their management by HIV outpatient services in Kenya and Uganda. BMC Palliat Care. 2013, 12 (1): 35-10.1186/1472-684X-12-35.CrossRefPubMedPubMedCentral
27.
go back to reference Simms V, Gikaara N, Munene G, Atieno M, Kataike J, Nsubuga C, Banga G, Namisango E, Penfold S, Fayers P, Powell RA, Higginson IJ, Harding R: Multidimensional patient-reported problems within two weeks of HIV diagnosis in East Africa: a multicentre observational study. PLoS One. 2013, 8 (2): e57203-10.1371/journal.pone.0057203.CrossRefPubMedPubMedCentral Simms V, Gikaara N, Munene G, Atieno M, Kataike J, Nsubuga C, Banga G, Namisango E, Penfold S, Fayers P, Powell RA, Higginson IJ, Harding R: Multidimensional patient-reported problems within two weeks of HIV diagnosis in East Africa: a multicentre observational study. PLoS One. 2013, 8 (2): e57203-10.1371/journal.pone.0057203.CrossRefPubMedPubMedCentral
28.
go back to reference Palermo T, Rawat R, Weiser SD, Kadiyala S: Food access and diet quality are associated with quality of life outcomes among HIV-infected individuals in Uganda. PLoS One. 2013, 8 (4): e62353-10.1371/journal.pone.0062353.CrossRefPubMedPubMedCentral Palermo T, Rawat R, Weiser SD, Kadiyala S: Food access and diet quality are associated with quality of life outcomes among HIV-infected individuals in Uganda. PLoS One. 2013, 8 (4): e62353-10.1371/journal.pone.0062353.CrossRefPubMedPubMedCentral
29.
go back to reference Degroote S, Vogelaers DP, Vermeir P, Mariman A, De Rick A, Van Der Gucht B, Pelgrom J, Van Wanzeele F, Verhofstede C, Vandijck DM: Socio-economic, behavioural, (neuro)psychological and clinical determinants of HRQoL in people living with HIV in Belgium: a pilot study. J Int AIDS Soc. 2013, 16: 18643-10.7448/IAS.16.1.18643.CrossRefPubMedPubMedCentral Degroote S, Vogelaers DP, Vermeir P, Mariman A, De Rick A, Van Der Gucht B, Pelgrom J, Van Wanzeele F, Verhofstede C, Vandijck DM: Socio-economic, behavioural, (neuro)psychological and clinical determinants of HRQoL in people living with HIV in Belgium: a pilot study. J Int AIDS Soc. 2013, 16: 18643-10.7448/IAS.16.1.18643.CrossRefPubMedPubMedCentral
30.
go back to reference Harding R, Simms V, Penfold S, Downing J, Powell RA, Mwangi-Powell F, Namisango E, Moreland S, Gikaara N, Atieno M, Kataike J, Nsubuga C, Munene G, Banga G, Higginson IJ: The presence of CD4 counts for the management of HIV patients in East Africa: a multicentred study. AIDS Care. 2013, 26 (5): 613-618. 10.1080/09540121.2013.844765.CrossRefPubMed Harding R, Simms V, Penfold S, Downing J, Powell RA, Mwangi-Powell F, Namisango E, Moreland S, Gikaara N, Atieno M, Kataike J, Nsubuga C, Munene G, Banga G, Higginson IJ: The presence of CD4 counts for the management of HIV patients in East Africa: a multicentred study. AIDS Care. 2013, 26 (5): 613-618. 10.1080/09540121.2013.844765.CrossRefPubMed
31.
go back to reference Lowther K, Simms V, Selman L, Sherr L, Gwyther L, Kariuki H, Ahmed A, Ali Z, Jenkins R, Higginson IJ, Harding R: Treatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy. BMC Infect Dis. 2012, 12: 288-10.1186/1471-2334-12-288.CrossRefPubMedPubMedCentral Lowther K, Simms V, Selman L, Sherr L, Gwyther L, Kariuki H, Ahmed A, Ali Z, Jenkins R, Higginson IJ, Harding R: Treatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy. BMC Infect Dis. 2012, 12: 288-10.1186/1471-2334-12-288.CrossRefPubMedPubMedCentral
Metadata
Title
Quality of life and wellbeing among HIV outpatients in East Africa: a multicentre observational study
Authors
Richard Harding
Victoria Simms
Suzanne Penfold
Julia Downing
Eve Namisango
Richard A Powell
Faith Mwangi-Powell
Scott Moreland
Nancy Gikaara
Mackuline Atieno
Irene J Higginson
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Infectious Diseases / Issue 1/2014
Electronic ISSN: 1471-2334
DOI
https://doi.org/10.1186/s12879-014-0613-1

Other articles of this Issue 1/2014

BMC Infectious Diseases 1/2014 Go to the issue
Obesity Clinical Trial Summary

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.

Developed by: Springer Medicine

Highlights from the ACC 2024 Congress

Year in Review: Pediatric cardiology

Watch Dr. Anne Marie Valente present the last year's highlights in pediatric and congenital heart disease in the official ACC.24 Year in Review session.

Year in Review: Pulmonary vascular disease

The last year's highlights in pulmonary vascular disease are presented by Dr. Jane Leopold in this official video from ACC.24.

Year in Review: Valvular heart disease

Watch Prof. William Zoghbi present the last year's highlights in valvular heart disease from the official ACC.24 Year in Review session.

Year in Review: Heart failure and cardiomyopathies

Watch this official video from ACC.24. Dr. Biykem Bozkurt discuss last year's major advances in heart failure and cardiomyopathies.