https://orcid.org/0000-0001-9653-8689
ABSTRACT
Physical and psychological symptoms among people living with HIV (PLWH) adversely affect quality of life and treatment adherence. Study objectives were: (i) to determine validity and reliability of a Vietnamese translation of the Memorial Symptom Assessment Scale–Short Form (MSAS-SF) among PLWH in Vietnam; (ii) to measure prevalence and burden of physical and psychological symptoms using the MSAS-SF including the Global Distress Index (GDI), Physical Distress subscale (PHYS), and Psychological Distress subscale (PSY); (iii) to identify symptom burden risk factors. We recruited 567 patients. Cronbach’s alpha scores were: total MSAS-SF 0.91, GDI 0.83, PHYS 0.85, PSYCH 0.81. The scale showed good discriminant validity (low vs high function) (p < 0.001). The mean number of symptoms was 7.66, and the most prevalent were “worrying” (41.6%), “lack of energy” (40.6%), “feeling irritable” (40.4%), and “feeling sad” (39.2%). Monthly income below the poverty line was independently associated with increased: GDI,, PHYS, and PSY and a greater number of symptoms. The Vietnamese version of the MSAS-SF is valid to measure symptom prevalence and burden in HIV-positive populations. Here is a high symptom prevalence and burden among PLWH in Vietnam, especially those living in poverty, and a great need for palliative care integrated with HIV treatment.
Introduction
Physical and psychological symptoms have been shown to be highly prevalent among people living with HIV (PLWH) (Harding et al., Citation2010b; Lowther et al., Citation2014; Abboah-Offei et al., Citation2019; Bristowe et al., Citation2019), High symptom burden is associated with poor ART adherence, sexual risk taking, treatment switching, poorer quality of life, viral rebound, suicidal ideation, and poor clinical outcomes (Harding et al., Citation2010; Harding, Clucas, Lampe, Date, et al., Citation2012; Harding, Clucas, Lampe, Norwood, et al., Citation2012; Lampe et al., Citation2010; Sherr et al., Citation2007; Sherr, Lampe, Fisher, et al., Citation2008). Yet data suggest that routine HIV clinical care does not address physical and psychological concerns of PLWH (Harding & Molloy, Citation2008).
In Vietnam, high symptom burden among PLHW was found in an informal study in 2006 (Ministry of Health of Vietnam, Citation2006). But there is no scientific evidence of patient-reported outcomes needed to inform HIV/AIDS clinical policy and care. We aimed: (i) to determine the psychometric properties of a commonly used measure of prevalence and burden of physical and psychological symptoms; (ii) to measure symptom prevalence and burden; (iii) to identify associations between symptom burden and socio-demographic and clinical factors.
Methods
We recruited a convenience sample of inpatients and outpatients at the national HIV/AIDS treatment centres for northern and southern Vietnam. Inclusion criteria were: 18 years or older, a serological diagnosis of HIV infection of which the patient was aware, and patient capacity to provide consent and self-report. Patients who lacked this capacity or were receiving terminal care were excluded. Patients were approached consecutively, and written informed consent was obtained prior to data collection. The study was approved by Vietnam’s Ministry of Health and by the Institutional Review Board of Partners Healthcare System in Boston, USA.
Demographic, social and clinical data were obtained via face-to-face interview. Questions were read aloud by the investigators and participants gave verbal responses which were recorded by the study researcher. CD4 count, current treatment status and clinical stage were obtained from the treating clinician. We used the Memorial Symptom Assessment Scale–Short Form (MSAS-SF), a measure of the seven-day, self-reported prevalence and burden of 28 physical and four psychological symptoms, that has been validated and used frequently with PLWH in the USA (Farrant et al., Citation2012; Harding et al., Citation2006; Harding, Selman, Agupio, Dinat, et al., Citation2012; McGowan et al., Citation2014; Moens et al., Citation2015; Namisango et al., Citation2012; Portenoy et al., Citation1994; Vogl et al., Citation1999; Wakeham et al., Citation2017). For physical symptoms, burden is rated on a 5-point (0–4) Likert scale (not at all, a little bit, somewhat, quite a bit, very much). The burden of psychological symptoms is measured as their frequency and is scored as rarely (1), occasionally (2), frequently (3), and almost constantly (4).
The MSAS-SF has four subscales (Portenoy et al., Citation1994; Vogl et al., Citation1999). The Global Distress Index (GDI) is the average of the frequency of four psychological symptoms and the distress associated with 6 prevalent physical symptoms. The Physical Symptom Subscale score (PHYS) is the average of the frequency, severity and distress associated with 12 prevalent physical symptoms. The Psychological Symptom Subscale score (PSYCH) is the average of the frequency, severity and distress associated with six prevalent psychological symptoms. The MSAS- SF was independently translated from English into Vietnamese by two Vietnamese bilingual medical doctors working independently, and a final Vietnamese version was prepared by agreement between translators. The Vietnamese version was pilot tested by cognitive interview among 10 PLWH. Physical function was measured using the ECOG scored from 0 (fully active) to 5 (dead) (Oken et al., Citation1982).
Cronbach’s coefficient alpha was used to assess internal consistency for each subscale (GDI, PHYS, PSYCH) and for the entire scale. Construct (discriminant) validity was assessed using known groups comparison, physical function measured with ECOG scores 0-1 v 2-4, by Mann-Whitney U test. For each symptom, we calculated descriptive statistics of prevalence and burden. Scores for the three subscales (GDI, PHYS, PSYCH), total MSAS-SF, and number of symptoms, were calculated. Symptom prevalence was reported as percentages. Symptoms were ranked in two orders: from most to least prevalent and from most to least clinically burdensome. Psychological symptoms that were identified as “frequent” or “almost constant” present were considered “clinically burdensome”.
Multivariable linear regression was applied to determine the association between burden indices (i.e. the numeric dependent variable in each model) and demographic and clinical factors (independent variables). Independent variables associated with the dependent variable at the 25% level were retained (Altman, Citation1991) and entered stepwise into the multivariable linear model. We report the 95% confidence interval (95% CI) for the exponential beta coefficient.
Results
We recruited N = 567 participants, most of whom were male (63.4%), from urban areas (66.3%, and had completed high school (52.5%) (). For 30.7%, average monthly income was below Vietnam’s poverty line (Vietnam, Citation2015). The majority had Stage 1 HIV infection and normal performance status (67.2% and 66.7% respectively), and 95.1% were on ART.
Table 1. Sample characteristics (N = 567).
Cronbach’s alpha coefficients for the three subscales (PHYS, PSYCH, GDI) and for the total MSAS-SF scale were 0.85; 0.81; 0.83 and 0.90, respectively. Construct validity was demonstrated by significantly higher burden and greater number of symptoms among those with poorer physical function for total MSAS-SF score (Mann Whitney U = 3582.5, p < 0.001), GDI subscale (5052.5, p < 0.001), PSYCH subscale (3463.5, p < 0.001) and total number of symptoms (4067.5, p < 0.001).
The seven-day symptom prevalence and associated burden are reported in . The most prevalent symptoms were worrying (41.5%), lack of energy (40.4%), feeling nervous (40.3%), and feeling sad (39.1%). All four psychological symptoms were among the 10 most prevalent symptoms.
Table 2. Physical symptom prevalence and burden using MSAS-SF N = 567.
The most burdensome physical symptoms were: lack of sleep (12.9%), lack of energy (12.0%), pain (9.8%), and lack of appetite (9.7 Among psychological symptoms, “worrying” and “feeling sad” were reported as either “frequent” or “almost constant” by 15.5%, and 13.4% respectively.
The median number of reported symptoms was 6 (IQR = 3 -12), and 25% reported more than 12 concurrent symptoms in the previous seven days (). The burden of psychological symptoms was higher than the burden of physical symptoms.
Table 3. MSAS-SF scores of HIV/AIDS patients (N = 567).
Univariable analysis is reported in . The multivariable model () revealed that living below the poverty line was associated with higher (worse) GDI subscale (p = 0.004), higher PHYS subscale (p = 0.001) higher PSY subscale (p = 0.04), and greater total number of symptoms (p = 0.001). Living in a rural area was associated with higher PSY score (p = 0.046).
Table 4. Associations of factors with symptoms in HIV/AIDS patients: univariate linear regression, N = 567.
Table 5. Associations of factors with symptom burden, multiple linear regression analysis N = 567.
Being recruited from an outpatient setting (compared to inpatients) was associated with a lower PHYS score (p = 0.038).
Better physical function was associated with lower number of symptoms (p = 0.047).
Having a diagnosis of AIDS was associated with higher (worse) PHYS score (p = 0.022), but higher (worse) WHO HIV stage was associated with fewer total symptoms (p = 0.029).
Discussion
This study demonstrates the validity and reliability of a Vietnamese translation of the MSAS-SF among PLWH in Vietnam and measures symptom prevalence, burden, and associated factors in this population. PLWH in Vietnam, especially the poorest, suffer from multiple highly prevalent and burdensome symptoms. Consistent with existing data on prevalence of psychological disorders among PLWH in Vietnam (Thai et al., Citation2017), we found that all four psychological symptoms on the MSAS-SF were among the 10 most prevalent symptoms overall. This finding is particularly important given that PLWH in Vietnam have limited access to emotional support and mental health services (Dao et al., Citation2013) recommended by WHO. While the mean PSYCH subscale score in our study was lower than in other developing countries (Harding, Selman, Agupio, Dinat, et al., Citation2012; Namisango et al., Citation2014; Namisango et al., Citation2015; Wakeham et al., Citation2010), our sample had less advanced disease compared to other studies.
Social factors were independently associated with symptom burden. Patients living in rural areas had greater psychological distress, and those living in poverty had higher general distress, physical distress, psychological distress and a higher number of symptoms. This may be due in part to less access to healthcare (Bertozzi & Gutierrez, Citation2013; Piot et al., Citation2001). The lack of association in our study between receiving ART and symptom burden is consistent with other studies and indicates that palliative care should accompany, and be integrated with, ART (Harding et al., Citation2010a; Harding et al., Citation2006; Harding, Selman, Agupio, Dinat, et al., Citation2012). Such integration is especially important in light of evidence that high symptom burden compromises patients’ ability to adhere to treatment (Sherr, Lampe, Norwood, et al., Citation2008).
Our study has several limitations. We were not able to identify causal relationships between predictors and symptom prevalence or burden. Also, while the construct validity of the Vietnamese version of MSAS-SF was confirmed, its face validity was not assessed with cognitive interviews of Vietnamese patients, and we did not conduct back translation of the instrument. In addition, we recruited a convenience rather than random sample of subjects, and only a small minority were not on ART.
In conclusion, we found a high burden of physical and psychological symptoms among PLWH, most of whom had stage 1 HIV disease, were fully functional, and on ART. In light of the evidence that high symptom burden is associated with poor clinical outcomes, care for PLWH that does not integrate symptom control and palliative care as an essential component is medically and morally inadequate (Lowther et al., Citation2015; Lowther, Harding, Simms, Ahmed, et al., Citation2018; Lowther, Harding, Simms, Gikaara, et al., Citation2018; Nkhoma et al., Citation2018).
Acknowledgements
We would like to thank our funders, the participating clinical services and the patients who consented to participate.
Disclosure statement
The authors declare that they have no competing interests.
Data availability statement
Data are available from the corresponding author on reasonable request.
Additional information
Funding
References
- Abboah-Offei, M., Bristowe, K., Koffman, J., Vanderpuye-Donton, N. A., Ansa, G., Abas, M., Higginson, I., & Harding, R. (2020, December). How can we achieve person-centred care for people living with HIV/AIDS? A qualitative interview study with healthcare professionals and patients in Ghana. AIDS Care. Psychological and Socio-medical Aspects of AIDS/HIV, 32(12), 1479–1488. https://doi.org/10.1080/09540121.2019.1698708
- Altman, D. G. (1991). Practical statistics for medical research. Chapman and Hall.
- Bertozzi, S. M., & Gutierrez, J. P. (2013). Poverty, cash transfers, and risk behaviours. The Lancet Global Health, 1(6), e315–316. doi:10.1016/S2214-109X(13)70111-6
- Bristowe, K., Clift, P., James, R., Josh, J., Platt, M., Whetham, J., Nixon, E., Post, F. A., McQuillan, K., Ní Cheallaigh, C., Murtagh, F., Anderson, J., Sullivan, A. K., & Harding, R. (2019). Towards person-centred care for people living with HIV: what core outcomes matter, and how might we assess them? A cross-national multi-centre qualitative study with key stakeholders. HIV Medicine, 20(8), 542–554. https://doi.org/10.1111/hiv.12758
- Dao, A., Hirsch, J. S., Giang le, M., & Parker, R. G. (2013). Social science research on HIV in Vietnam: a critical review and future directions. Global Public Health, 8(Suppl 1), S7–S29. doi:10.1080/17441692.2013.811532
- Farrant, L., Gwyther, L., Dinat, N., Mmoledi, K., Hatta, N., & Harding, R. (2012). The prevalence and burden of pain and other symptoms among South Africans attending highly active antiretroviral therapy (HAART) clinics. South African Medical Journal, 102(6), 499–500. doi:10.7196/SAMJ.5481
- Harding, R., Clucas, C., Lampe, F. C., Date, H. L., Fisher, M., Johnson, M., Edwards, S., Anderson, J., & Sherr, L. (2012). 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, 24(8), 963–971. doi:10.1080/09540121.2012.668175
- Harding, R., Clucas, C., Lampe, F. C., Norwood, S., Leake Date, H., Fisher, M., Johnson, M., Edwards, S., Anderson, J., & Sherr, L. (2012). Behavioral surveillance study: sexual risk taking behaviour in UK HIV outpatient attendees. AIDS and Behavior, 16(6), 1708–1715. doi:10.1007/s10461-011-0023-y
- Harding, R., Lampe, F. C., Norwood, S., Date, H. L., Clucas, C., Fisher, M., Johnson, M., Edwards, S., Anderson, J., & Sherr, L. (2010). Symptoms are highly prevalent among HIV outpatients and associated with poor adherence and unprotected sexual intercourse. Sexually Transmitted Infections, 86(7), 520–524. doi:10.1136/sti.2009.038505
- Harding, R., & Molloy, T. (2008, May). Positive futures? The impact of HIV infection on achieving health, wealth and future planning. AIDS Care. Psychological and Socio-medical Aspects of AIDS/HIV, 20(5):565–570. https://doi.org/10.1080/09540120701867222
- Harding, R., Molloy, T., Easterbrook, P., Frame, K., & Higginson, I. J. (2006). Is antiretroviral therapy associated with symptom prevalence and burden? International Journal of STD and AIDS, 17(6), 400–405. doi:10.1258/095646206777323409
- Harding, R., Selman, L., Agupio, G., Dinat, N., Downing, J., Gwyther, L., Mashao, T., Mmoledi, K., Moll, T., Sebuyira, L. M., Ikin, B., & Higginson, I. J. (2012). Prevalence, burden, and correlates of physical and psychological symptoms among HIV palliative care patients in sub-Saharan Africa: an international multicenter study [Article]. Journal of Pain and Symptom Management, 44(1), 1–9. doi:10.1016/j.jpainsymman.2011.08.008
- Lampe, F. C., Harding, R., Smith, C. J., Phillips, A. N., Johnson, M., & Sherr, L. (2010). Physical and psychological symptoms and risk of virologic rebound among patients with virologic suppression on antiretroviral therapy. JAIDS Journal of Acquired Immune Deficiency Syndromes, 54(5), 500–505. doi:10.1097/QAI.0b013e3181ce6afe
- Lowther, K., Harding, R., Simms, V., Ahmed, A., Ali, Z., Gikaara, N., Sherr, L., Kariuki, H., Higginson, I. J., & Selman, L. E. (2018). Active ingredients of a person-centred intervention for people on HIV treatment: analysis of mixed methods trial data. BMC Infectious Diseases, 18(1), 27. doi:10.1186/s12879-017-2900-0
- Lowther, K., Harding, R., Simms, V., Gikaara, N., Ahmed, A., Ali, Z., Kariuki, H., Sherr, L., Higginson, I. J., & Selman, L. (2018). Effect of participation in a randomised controlled trial of an integrated palliative care intervention on HIV-associated stigma. AIDS Care, 30(9), 1180–1188. https://doi.org/10.1080/09540121.2018.1465176
- Lowther, K., Selman, L., Harding, R., & Higginson, I. J. (2014). Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART): a systematic review. International Journal of Nursing Studies, 51(8), 1171–1189. doi:10.1016/j.ijnurstu.2014.01.015
- Lowther, K., Selman, L., Simms, V., Gikaara, N., Ahmed, A., Ali, Z., Kariuki, H., Sherr, L., Higginson, I. J., & Harding, R. (2015). Nurse-led palliative care for HIV-positive patients taking antiretroviral therapy in Kenya: a randomised controlled trial. The Lancet HIV, 2(8), e328–334. doi:10.1016/S2352-3018(15)00111-3
- McGowan, J., Sherr, L., Rodger, A., Fisher, M., Miners, A., Johnson, M., Elford, J., Collins, S., Hart, G., Phillips, A., Speakman, A., & Lampe, F. (2014). Effects of age on symptom burden, mental health and quality of life amongst people with HIV in the UK. Journal of the International AIDS Society, 17(4 Suppl 3), 19511. doi:10.7448/IAS.17.4.19511
- Ministry of Health of Vietnam. 2006. Palliative Care in Vietnam: Findings from a rapid situation analysis in five provinces. Hanoi: Ministry of Health. Retrieved September 23, 2016, from http://aidsdatahub.org/dmdocuments/Findings_from_a_Rapid_Situation_Analysis_in_Five_Provinces_in_Vietnam_2006.pdf.pdf
- Moens, K., Siegert, R. J., Taylor, S., Namisango, E., & Harding, R. (2015). Symptom Clusters in People Living with HIV Attending Five Palliative Care Facilities in Two Sub-Saharan African Countries: A Hierarchical Cluster Analysis. PloS One, 10(5), e0126554. doi:10.1371/journal.pone.0126554
- Namisango, E., Harding, R., Atuhaire, L., Ddungu, H., Katabira, E., Muwanika, F. R., & Powell, R. A. (2012). Pain among ambulatory HIV/AIDS patients: multicenter study of prevalence, intensity, associated factors, and effect. The Journal of Pain, 13(7), 704–713. doi:10.1016/j.jpain.2012.04.007
- Namisango, E., Harding, R., Katabira, E. T., Siegert, R. J., Powell, R. A., Atuhaire, L., Moens, K., & Taylor, S. (2015). A novel symptom cluster analysis among ambulatory HIV/AIDS patients in Uganda. AIDS Care, 27(8), 954–963. doi:10.1080/09540121.2015.1020749
- Namisango, E., Powell, R. A., Atuhaire, L., Katabira, E. T., Mwangi-Powell, F., & Harding, R. (2014). Is symptom burden associated with treatment status and disease stage among adult HIV outpatients in East Africa? Journal of Palliative Medicine, 17(3), 304–312. doi:10.1089/jpm.2013.0291
- Nkhoma, K., Norton, C., Sabin, C., Winston, A., Merlin, J., & Harding, R. (2018). Self-management Interventions for Pain and Physical Symptoms Among People Living With HIV: A Systematic Review of the Evidence. JAIDS Journal of Acquired Immune Deficiency Syndromes, 79(2), 206–225. doi:10.1097/QAI.0000000000001785
- Oken, M. M., Creech, R. H., Tormey, D. C., Horton, J., Davis, T. E., McFadden, E. T., & Carbone, P. P. (1982). Toxicity and response criteria of the Eastern Cooperative Oncology Group. AMERICAN JOURNAL OF CLINICAL ONCOLOGY, 5(6), 649–655. (NOT IN FILE). doi:10.1097/00000421-198212000-00014
- Piot, P., Bartos, M., Ghys, P. D., Walker, N., & Schwartländer, B. (2001). The global impact of HIV/AIDS. Nature, 410(6831), 968–973. doi:10.1038/35073639
- Portenoy, R. K., Thaler, H. T., Kornblith, A. B., Lepore, J. M., Friedlander-Klar, H., Kiyasu, E., Sobel, K., Coyle, N., Kemeny, N., Norton, L., & Scher, H. (1994). The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. European Journal of Cancer, 30A(9), 1326–1336. doi:10.1016/0959-8049(94)90182-1
- Sherr, L., Lampe, F., Fisher, M., Arthur, G., Anderson, J., Zetler, S., Johnson, M., Edwards, S., & Harding, R. (2008). Suicidal ideation in UK HIV clinic attenders. AIDS, 22(13), 1651–1658. doi:10.1097/QAD.0b013e32830c4804
- Sherr, L., Lampe, F., Norwood, S., Leake-Date, H., Fisher, M., Edwards, S., Arthur, G., Anderson, J., Zetler, S., Johnson, M., & Harding, R. (2007). Successive switching of antiretroviral therapy is associated with high psychological and physical burden. International Journal of STD and AIDS, 18(10), 700–704. doi:10.1258/095646207782193821
- Sherr, L., Lampe, F., Norwood, S., Leake Date, H., Harding, R., Johnson, M., Edwards, S., Fisher, M., Arthur, G., Zetler, S., & Anderson, J. (2008). Adherence to antiretroviral treatment in patients with HIV in the UK: a study of complexity. AIDS Care, 20(4), 442–448. doi:10.1080/09540120701867032
- Thai, T. T., Jones, M. K., Harris, L. M., & Heard, R. C. (2017). Prevalence and correlates of symptoms of mental disorders in Vietnamese HIV-positive patients. Journal of HIV/AIDS & Social Services, 16(1), 43–59. https://doi.org/10.1080/15381501.2015.1107800
- Vietnam, T. G. o. (2015). Assessment report on the implementation of national targeted programs for period 2011–2015 and orientation to design programs for period 2016–2020.
- Vogl, D., Rosenfeld, B., Breitbart, W., Thaler, H., Passik, S., McDonald, M., & Portenoy, R. K. (1999). Symptom prevalence, characteristics, and distress in AIDS outpatients. Journal of Pain and Symptom Management, 18(4), 253–262. doi:10.1016/S0885-3924(99)00066-4
- Wakeham, K., Harding, R., Bamukama-Namakoola, D., Levin, J., Kissa, J., Parkes-Ratanshi, R., Muzaaya, G., Grosskurth, H., & Lalloo, D. G. (2010). Symptom burden in HIV-infected adults at time of HIV diagnosis in rural Uganda [Article]. Journal of Palliative Medicine, 13(4), 375–380. doi:10.1089/jpm.2009.0259
- Wakeham, K., Harding, R., Levin, J., Parkes-Ratanshi, R., Kamali, A., & Lalloo, D. G. (2017). The impact of antiretroviral therapy on symptom burden among HIV outpatients with low CD4 count in rural Uganda: nested longitudinal cohort study. BMC Palliative Care, 17(1), 8. doi:10.1186/s12904-017-0215-y
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