Racial and socioeconomic disparities in the symptom reporting of persons living with HIV

Abstract

Persons living with HIV (PLWH) today can survive decades with the disease, making the symptom experience much more relevant to their lifestyle and health outcomes. The goal of the research reported here was to assess the symptom reporting of PLWH in the Unites States (US) in the combined antiretroviral therapy (cART) age of the epidemic. We conducted an anonymous online survey of symptomatic PLWH in the US and asked participants to report the frequency and intensity of 28 frequently occurring symptoms in the past 30 days. The relationship between symptom reporting and demographic factors was investigated using the adaptive least absolute shrinkage and selection operator (LASSO) method. Fatigue was the most frequently reported symptom in our study population. Those with the lowest income were more likely to report more burdensome symptoms. In comparison to other racial and ethnic groups, Black non-Hispanic participants were significantly more likely to report a lower symptom burden score for fatigue, depression, muscle aches, anxiety, difficulties with memory and concentration. There were no racial/ethnic differences in the burden of the symptoms related to sleep or neuropathy. Findings from this study present new evidence on the symptom reporting of PLWH in the US. Neuropathy continues to be a pervasive neurological symptom with no difference noted between racial/ethnic groups.

In people living with HIV (PLWH), menopause (natural or surgical) contributes to the greater symptom burden in women: results from an online US survey

“…Despite this, the symptom experience of WLWH in the context of the female reproductive cycle has been largely understudied or compared to men. In one of the first online national surveys of 1373 PLWH (mean age of 48.5 years) where co-morbid conditions were common and the majority (92%) were receiving cART, 21 we reported that fatigue, depression, muscle aches/pains, and difficulty falling asleep were the most frequently reported symptoms, with significant race/ethnicity and income differences evident in symptom burden. In this sample, composed of 70% males, sex differences in symptom burden were few: only muscle aches and pains, reported as the third most common symptom next to depression and fatigue, was associated with higher burden scores in women vs. men, although strong trends were observed for fatigue and staying asleep.…”

“…As reported in the parent study, we conducted an anonymous, cross-sectional online survey of the symptom profile of 1373 PLWH in the US from February to August 2016. 21 Study participants from the US were recruited through banner ads placed on five large social networking websites. Participants were eligible for the study if they were HIV+, 18 years or older, able to read and respond in English, resided within the US, reported having experienced at least one bothersome symptom in the past 30 days, and were willing to participate in an online survey about their health.…”

Symptom Profile and Technology Use of Persons Living With HIV Who Access Services at a Community-Based Organization in the Deep South

“…Given the scores on the eHEALS instrument, there is evidence to support the use of consumer eHealth tools, such as the mVIP app, to inform clinical decision making and health promotion. In summary, given these findings in Birmingham, AL, and other recent studies on symptom burden in the United States (Schnall, Cho, et al, 2018; Schnall, Siegel, et al, 2018; N. L. Wilson et al, 2016), there is strong scientific premise to support the feasibility of a mobile-delivered symptom self-management tool in the Deep South and other U.S. communities for improving health outcomes for PLWH in the United States.…”

“…L. Wilson et al, 2016). In our national online survey ( N = 1,373), there was a high symptom burden with fatigue, depression, muscle aches and pain, sleep difficulties, and anxiety being the most prevalent symptoms, and neuropathy being one of the most burdensome symptoms and affecting over 25% of our study participants (Schnall, Siegel, Jia, Olender, & Hirshfield, 2018). In our New York City in-person study ( N = 80), our participants also reported a high prevalence of symptoms with fatigue being the most frequently reported symptom ( N = 61, 76.3%), followed by difficulty falling or staying asleep ( N = 59, 74.7%), neuropathy ( N = 46, 59.0%), anxiety ( N = 45, 57.0%), and depression ( N = 43, 53.8%) (Schnall, Cho, Mangone, Pichon, & Jia, 2018).…”

Information sources of self-care strategies for persons living with HIV

“…Results from the symptom reporting and self-management strategies are reported elsewhere. (34, 35) All study procedures and materials were approved by the lead investigator’s Institutional Review Board.…”