Advances in clinical care and the use of combination antiretroviral therapy (ART) in the management of HIV have greatly improved the health of people living with HIV (PLWH). Thus, HIV is now a chronic disease requiring continuous management (Quinn, Sanders, & Petroll, 2017). Yet, PLWH continue to report various symptoms including pain, fatigue, depression, gastrointestinal disorders, sleep disturbances, and cognitive problems (Byun, Gay, & Lee, 2016; Peltzer, 2013; Santos, Silveira, & Falco, 2016; Schnall, Siegel, Jia, Olender, & Hirshfield, 2018).
Symptom assessment and management are central foci during the health care encounter, and disregarding symptoms can have adverse outcomes adding to the patient's distress (Brink & Skott, 2013). Symptom burden adversely affects health-related quality of life, including physical function (McGowan et al., 2017). Symptom burden is defined as “…the subjective, quantifiable prevalence, frequency, and severity of symptoms that place a physiologic burden on patients and may lead to multiple negative physical, psychological, and emotional responses” (Gapstur, 2007, p. 677). From the patient's perspective, symptom burden is the interference in usual activities and psychological suffering due to symptoms (Selby et al., 2011). Symptom burden is complex and extends beyond the use of statistical ratings to signify the symptom occurrence (Gill, Chakraborty, & Selby, 2012). Thus, symptom burden may result in severe alterations to physical capabilities and emotional anguish because of the influence of particularly serious symptoms. Gill et al. (2012) found that cancer patients who received palliative care described six distinct themes of symptom burden: (a) inability to carry out normal activities, (b) psychological distress, (c) precise intense symptoms, (d) worry, (e) anxiety about death and disease, and (f) not being their “old selves” (the self before the onset of HIV) and medication-related issues. However, they also described more complex experiences of symptoms, which could be missed by simply adding scores on a symptom assessment tool (Gill et al., 2012). Thus, in describing symptom burden, it is important to pay attention to the disease process and treatment as well as the individual's unique physical, emotional, and situational response to the experience.
Symptom assessment is vital in the care and management of PLWH. The routine use of symptom assessment measures is key to symptom management and may improve the patient–practitioner therapeutic relationship (Bucciardini et al., 2016). Symptom assessment assists the clinician to understand factors that impact the symptom experience. During assessment, nurses and other health care providers should consider experiential aspects and the societal/cultural meanings of symptoms, which impact symptom perception (Eriksen & Risør, 2014).
Researchers have examined symptom burden in adult PLWH, including the prevalence and predictors of symptoms, using various symptom assessment tools. Wilson et al. (2016) explored the incidence and self-reported symptoms pattern in 1,885 PLWH in Alabama, using the 20-item HIV Symptom Index developed by Justice et al. (2001). In this population, the most prevailing and distressing symptoms were fatigue, pain, sadness, anxiety, poor sleep, and numbness/tingling of hands or feet (Wilson et al., 2016). Symptom burden may vary by sex, although the evidence is inconclusive. Some studies reported no association between symptoms and a person's sex (Wilson et al., 2016), whereas others found a strong association between sex and symptoms. In a recent national study of symptoms among PLWH, women reported more symptoms and greater symptom burden than men (Webel, Willig, et al., 2019).
Antiretroviral therapy does not eliminate the severity of symptoms experienced by PLWH (Boyer et al., 2017), and a longer duration of living with HIV is not consistently associated with greater symptom burden (Peltzer, 2013). Older age, regardless of immune status, predicts symptoms related to physical function, such as activities of daily living (Lawson et al., 2015). Peltzer (2013) used the 72-item Revised Signs and Symptoms Checklist for HIV by Holzemer, Hudson, Kirksey, Hamilton, and Bakken (2001) to longitudinally assess PLWH on ART. In the Peltzer study, alcohol use was a predictor of increased symptom burden (Peltzer, 2013), but the possible cause of this relationship was not explored further. This finding is also similar to that of Heinz, Fogler, Newcomb, Trafton, and Bonn-Miller (2014), where unhealthy patterns of alcohol use were positively related to increased symptom burden among adult PLWH. In a study by Harding et al. (2010), education level and socioeconomic status were shown to impact symptoms and physical performance, with a remarkable association between low educational attainment, low income, and increased symptoms. Using the Memorial Symptom Assessment Scale-Short Form (Chang, Hwang, Feuerman, Kasimis, & Thaler, 2000), Harding et al. (2010) measured the prevalence of both psychological and physical symptoms among PLWH, which were both highly prevalent.
The Theory of Unpleasant Symptoms (TOUS) is one of the several theories that have been used to describe symptom experiences in clinical practice and in research (Lenz, Pugh, Milligan, Gift & Suppe, 1997). This theory is comprised of three elements—influencing factors, symptoms, and performance (Figure 1). In TOUS, symptoms are defined subjectively as the alteration in regular function as reported by the individual (Lenz & Pugh, 2014). The influencing factors (physiologic, psychologic, and situational) are antecedents to symptoms. Symptoms differ by timing, quality, degree of distress, and intensity. The acuity of these symptom features predicts the person's performance of activities. Performance can be represented as functional status (role performance), cognitive functioning (problem solving), and physical performance (activity level). Additionally, symptoms can mediate the link between influencing factors and performance. Because each TOUS element is broad, with many latent variables, a study can typically explore only a few of those variables (Lenz & Pugh, 2014). TOUS has been used in a wide range of symptom research studies in cancer populations (Lenz & Pugh, 2014), but rarely in PLWH, perhaps because it lacks a symptom management element. Yet, the TOUS is unique in that it allows for the appraisal of symptoms occurring together.
There have been few studies conducted in the Midwestern region of the United States to determine the relationship among symptoms, influencing factors, and performance (for example, overall function) in PLWH. Also, various studies are inconclusive on the effect of influencing factors (such as physiologic factors, including sex, age, duration of infection) on symptom burden (Aouizerat et al., 2010; McGowan et al., 2017; Webel et al., 2015). The aim of this study was to explore the associations among symptoms, predictors (influencing factors), and consequences (performance) among adult PLWH, to enhance our knowledge of their symptom experience, using TOUS as a theoretical framework.
This study was a cross-sectional, secondary analysis of baseline data from an existing data set. The parent study evaluated the effect of a community-based palliative care intervention (Randomized Trial of an HIV Navigation Program for Early Palliative Care) on symptom burden, coping ability, quality of life, and advance care planning among adult PLWH (Webel, Prince-Paul, et al., 2019). However, this cross-sectional study used the baseline data obtained prior to the interventions.
Research Setting and Sample
The data were collected from three sites in Cleveland, Ohio. These sites provided health care services, including primary care, to PLWH. A convenience sample was recruited through posted flyers in HIV clinics, clinical referral, and use of a registry of PLWH who had given prior consent for research contact. Interested participants were instructed to call the telephone number on the flyer to obtain more information on the study and be screened for eligibility by study staff.
A total of 264 PLWH were screened for eligibility; of those, 179 were enrolled for the parent study. We used the baseline data from all the enrolled participants (n = 179) for this study. Eligibility to participate in the study included being 18 years or older and having a confirmed HIV diagnosis with at least one chronic non–HIV-related comorbidity (e.g., hypertension, heart failure). However, a person who had depression as the only comorbid disease was excluded because the primary study was focused on physical health comorbidities. Other eligibility criteria included those receiving care at one of the three study sites, living within 50 miles of the study site, and living with diagnosed HIV for at least 2 years. Patients who did not speak English or were currently enrolled in a formal hospice or palliative care program were excluded. The data collection period for the parent study extended from July 12, 2012, to October 26, 2015.
Human Subject Protections
Because the study was a secondary analysis of an Institutional Review Board-approved study, we obtained a letter of exemption from the Institutional Review Board at the Case Western Reserve University before conducting the research investigation. Also, the parent study was closed, and only deidentified data were available for the analysis.
Measures for Data Collection
Demographic data included participants' sex, age, education level, employment status, monthly income, number of comorbidities (obtained through chart review), and living situation. Perceived social support (in the context of the previous 4 weeks) was measured with the Friendship Scale (FS), which is an easy to use, six-item, unidimensional scale (Hawthorne, 2006) for older adults (≥60 years). This is a Likert-type, five-point scale with responses from 4 [almost always], 3 [most of the time], 2 [about half the time], 1 [occasionally], to 0 [not at all]. Total scores range from 0 to 24. A high total score denotes social interconnectedness (Hawthorne, 2006). We used both the total score (as a continuous variable) as well as the various categories to determine the level of perceived social isolation in the study. A previous psychometric analysis of the scale conducted in a sample of 829 (57% females) older adults, demonstrated that the scale had good reliability (Cronbach's alpha [α] = .83; Hawthorne, 2006). The FS had also been used among a population of adults who were 15 years and older (mean age = 45.3 years, SD = 18.7 years) with a good reliability (Mokken p = .81; Hawthorne, 2008). Furthermore, Webel, Sattar, Schreiner, and Phillips (2016) used the FS in a study of PLWH (mean age = 48 years, SD = 8.7) where the alpha was .72.
The nine-item Edmonton Symptom Assessment Scale (ESAS; Bruera, Kuehn, Miller, Selmser, & Macmillan, 1991) with an 11-point numerical rating ranging from 0 [no symptom] to 10 [worst possible symptom] was used to assess symptom burden. Some of the symptoms included in the ESAS are pain, tiredness, drowsiness, and nausea. The following cutoffs were used for this study: score of 0 = absent, 1–3 = mild, 4–6 = moderate, and 7–10 = severe symptom burden, for individual items. We used the score for individual items to assess the relationship between various ESAS symptoms and other antecedent and consequent variables. ESAS has been used extensively, chiefly, because it is validated and has been widely translated into more than 20 languages since its development (Hui & Bruera, 2017). The ESAS had a good reliability (α = .79) in a study by Chang, Hwang, and Feuerman (2000).
The six-item Overall Function subscale of the HIV/AIDS–Targeted Quality of Life (HAT-QoL) scale was used to measure overall function (Holmes & Shea, 1999). It is a 34-item scale used to identify the quality of life concerns of PLWH. In this study, we analyzed the participants' responses to the six items that measured their perceived overall function in the past 4 weeks. The Overall Function subscale focuses on physical, role, and social functions of participants. The items are presented as five-point Likert-type scale questions, with responses ranging from all of the time, a lot of the time, some of the time, a little of the time, to none of the time. The total Overall Function subscale scores ranged from 0 to 30, which was converted to a linear 0–100 scale for the analysis, based on an existing algorithm provided by the HAT-QoL scale developer. Higher mean total scores indicated better function. There was no literature on possible categorization of the scores for higher versus lower or moderate function. The Overall Function subscale had good reliability (α = .90) in a previous psychometric analysis (Holmes & Shea, 1999).
The Theory of Unpleasant Symptoms as Applied to the Present Study
The influencing factors are comprised of three interrelated groups of factors, including physiologic, psychologic, and situational factors. In the present study, the physiologic factors included sex, age, number of comorbidities, and duration of HIV in years, which were measured using the participants' demographic data. We appraised the psychologic factor by examining the perceived social support, using the FS (Hawthorne, 2006). Furthermore, we assessed the situational factors by evaluating demographic information on education level, employment status, income, and living situation.
Symptom burden is characterized by intensity, distress, timing, and quality and is subjective in nature and thus self-reported. Symptom burden has been assessed with the ESAS. This scale can measure the perceived distress and intensity of symptoms.
Performance is the consequence or the product of symptom perception. The components included role function, cognition, and physical activities. Physical activities and role function were assessed in this study by measuring the perceived overall function of the participants using the overall function subscale of the HAT-QoL Scale (Holmes & Shea, 1999).
Finally, the TOUS demonstrates possible interrelation among the factors and a feedback loop, which means that the three factors could influence each other in no particular order (Figure 1). However, this was not measured in our study. Also, because of a likely direct association among the influential factors and performance, the present study examined the relationships. We investigated the role of symptom as a mediator of the association among the influencing factors and performance.
The data analysis was conducted with Statistical Package for the Social Sciences, version 25 (IBM Corp., 2017). The significance level (α) for the study was set at .05. Because this was a secondary analysis, a sensitivity test was conducted, for a power analysis for regression. In testing the regression using a mediator, there were nine independent variables, with an alpha of .05, and power of .80, a sample size of n = 179 will be able to detect a small effect size of .10. We used listwise deletion to manage missing data in which all participants with missing values are deleted from the data for a particular analysis. The pattern of missing values was assessed using descriptive statistics and by cross-checking the data to determine if missing values were as a result of data entry error or from item nonresponse (inadvertently omitting response to an item). For example, only one item (well-being) had missing values (n = 2, 1.1%) out of the nine ESAS items. The duration of disease in years had 7 (3.9%) missing values. Descriptive statistics were used to define the demographic features and the individual symptom burden. Multiple regression, independent sample t-test, and one-way analysis of variance were used to test the relationship between the variables. All the scales used in this study exhibited sufficient internal consistency. Cronbach's alpha for the FS (six items, α = .83), ESAS (nine items, α = .84), and Overall Function subscale (six items, α = .82) were found to be highly reliable.
A total of 179 (59.2% male) PLWH were included in this analysis. The ages ranged from 21 to 69 years, with a mean age of 49.5 years (Table 1). Descriptive analysis of the ESAS and the FS showed that almost half of the participants were either socially isolated (22.3%) or had a low level of social support (24%). Approximately 20% of participants reported that they were very socially connected. A total of 35.8% experienced pain, whereas 34.1% of participants experienced tiredness. The majority of participants experienced no nausea (56.4%) and no shortness of breath (40.2%; Table 2).
When stratifying by age, those who were younger than 50 years reported higher anxiety than those 50 years and older (M = 4.60; SD = 3.602 versus M = 3.55; SD = 3.259). Being a female predicted higher symptoms of tiredness (β = −.219; p = .002), drowsiness (β = −.189; p = .011), and shortness of breath (β = −.147; p = .05) than being a male. Those living in temporary housing reported significantly higher depression, anxiety, poor well-being, and drowsiness compared with those living in permanent housing. Lower income predicted higher symptom burden. Those who earned less than $200 monthly reported worse pain and poorer appetite than other income groups. For example, those who earned less than $200/month (M = 6.50; SD = 3.368; p < .05) had significantly poorer appetite than those without income (M = 2.67; SD = 3.143) and the other income groups. Furthermore, higher education level predicted increased tiredness (β = .440; p = .04) and poorer appetite (β = .574; p = .03). The number of comorbidities (β = .450; p < .001) and perceived social support (β = −.313; p < .001) was a significant predictor of perceived depression. Comorbidities also predicted increased pain (β = .278, p < .001), tiredness (β = .284, p < .001), and anxiety (β = .164, p = .02) burden. Perceived social support was a significant predictor of all symptoms except pain. For example, the very socially isolated, those with low-level social support, and some social support had statistically significant (p < .05) higher tiredness and anxiety burden than the very socially connected.
Collectively, the ESAS symptoms explained 55.4% of variation in overall function. Only pain (β = −.244; p < .001) and depression (β = −.303; p < .001) were statistically significant predictors of overall function. Furthermore, a regression analysis of individual symptoms and overall function showed that depression, tiredness, and pain explained 39.2%, 35%, and 39.4% of the variability in overall function, respectively, whereas shortness of breath (13.7%) explained the least variation (Table 3). Each of the ESAS items had significant mean effect on the overall function. Increased symptom burden predicted reduced overall function. For example, those with an absence of pain (M = 79.89; SD = 15.393) or mild pain (M = 75.85; SD = 16.617) reported higher overall function (p < .05) compared with those with moderate (M = 59.93; SD = 21.503) and severe pain (M = 49.15; SD = 20.006). Therefore, severe pain was associated with reduced overall function.
The influencing factors collectively explained 32.82% of the overall function. Living situation (β = .141; p = .04), duration of HIV diagnoses (β = .144; p = .03), number of comorbidities (β = −.316; p < .001), and perceived social support (β = .398; p < .001) predicted the overall function. Temporary housing, lower income, and more comorbidities predicted reduced overall function. Those with no income (M = 62.15; SD = 23.467) reported higher overall function than those who earned less than $200/month (M = 49.40; SD = 24.122). Few symptoms mediated the relationship between the influencing factors and overall function. Drowsiness demonstrated a full mediation between age and overall function (β = .069; p = .311), depression mediated the relationship between perceived social support and overall function (β = .105; p = .147), pain mediated the relationship between income and overall function, and anxiety partially mediated the relationship between duration of HIV and overall function (Table 4).
Together, the symptoms predicted 55.4% of variation in overall function. The burden of each symptom was inversely related to overall function. In other words, the more severe the reported symptom burden, the lower the perceived overall function. This study substantively adds to the state of the science as few studies examined the relationship between symptom burden and overall function. Furthermore, Aouizerat et al. (2010) recommended more research on the link between symptoms and role performance. The influencing factors, including sex, age, education level, monthly income, housing situation, perceived social support, and comorbidities explained 32.8% of variability in overall function. Sex, education, and income did not predict overall function. Low level of education, lower monthly income, and unstable housing are some of the social determinants of health, which often leads to poor health outcomes (Saracino et al., 2018). Walker et al., (2014) had noted that social determinants of health describe a number of sociocultural, economic, demographic, psychosocial, and health care related issues that may prevent a person from attaining adequate health outcomes, which may, in turn, impact their ability to manage symptoms. All the other factors, except perceived social support, were inversely related to overall function. Without prior studies to compare with, we need further research to examine this relationship. The mediation effect of symptoms on the relationship between the influencing factors and perceived overall function also require further investigation. For example, how does pain mediate the relationship between income and overall function?
An increased number of comorbidities were associated with severe symptom burden, such as pain and tiredness. Aouizerat et al. (2010) posited that those with more comorbid conditions reported more symptoms, especially pain. The dominant comorbidities in the present study sample were depression and substance use disorder. Lower income (mainly < $200 per month) predicted greater mean symptoms of poor appetite and pain, which was comparable to the study by Schnall, Siegel, et al. (2018), in which those with low income also reported increased symptom burden. Although Saracino et al. (2018) identified low income as one of the factors that could lead to poor health outcome, this association, in relation to symptoms, requires further investigation in order to support better understanding. Temporary housing was associated with a higher burden of depression, anxiety, drowsiness, and a low sense of well-being. This study did not assess the link between temporary housing and substance use disorder, which could influence symptom burden. Hammond, Lai, Wright, and Treisman (2016) found that active substance use disorder was related to comorbid depressive disorder. It could be possible that substance use may be confounding the relationship between symptoms and temporary housing, and future longitudinal studies should carefully examine this relationship. Gottlieb, Sandel, and Adler (2013) identified housing problem as a modifiable social problem, which can be solved at individual, or community levels through advocacy. They further advised on the importance of social screening of patients by health care providers to ensure proper intervention. We also found that social connectedness was associated with less symptom burden, with the exception of pain. Although few studies investigated this relationship, our findings parallel Boyer et al. (2017) and Webel et al. (2015).
Several of our findings confirmed the results of previous studies among PLWH. In our study, being a female was related to higher reports of pain, tiredness, drowsiness, and shortness of breath. This was similar to findings from Farrant et al. (2014) and Lawson et al. (2015) who explored this relationship among adult PLWH. Schnall, Jia, Olender, Gradilla, and Reame (2018) found that women living with HIV reported higher burden of fatigue. However, menopausal (natural or hysterectomy) women reported even higher burden of muscle aches/pains (p = .05), fatigue (p = .03), and difficulty falling asleep (p = .04) than premenopausal women. Therefore, symptom burden among female subjects could be worsened after menopause. We did not investigate this association in our study. Age (<50 vs. ≥50 years) predicted only anxiety, which confirmed the results of the study by McGowan et al. (2017), in which anxiety was reduced with age (≥60 years). In contrast, Brandt et al. (2016) concluded that age did not influence anxiety in PLWH. Also, Webel et al. (2015) identified no differences in symptom burden between PLWH younger than 50 years and those 50 years of age and older. Again, higher education predicted poorer appetite and increased tiredness, unlike in comparable studies (Boyer et al., 2017; Harding et al., 2010). This could be due to other confounders, such as employment status. Future research is required to explore these relationships.
In support of the TOUS, our findings showed that the influencing factors predicted perceived symptom burden and performance. Also, symptoms predicted performance (overall function). For example, female subjects experienced more symptoms than male subjects, and increased symptom burden predicted reduced overall function. We did not investigate the possible effect of the performance components on perceived symptom or on some of the influencing factors. This is an area that would require further investigation.
The findings of this study have other clinical and research implications. Symptom management early in the trajectory of HIV disease could be achieved through palliative care. Palliative care offers a comprehensive approach to patient management. Online support groups for PLWH have been demonstrated to improve perceived social support and social connectedness (Flickinger et al., 2017). We suggest that such resources be made widely available to PLWH. This will go a long way in not only improving perceived social support but also reduce symptom burden because perceived social support predicts symptom burden and overall function (Boyer et al., 2017; Webel et al., 2015). There is also need for more intervention studies in the area of symptom management because it is central to disease management.
This study was limited by the available data from the parent study. The cross-sectional design did not allow us to assess the pattern of symptom experiences of PLWH over time. Future longitudinal studies on this research topic are recommended for a better understanding of their experiences. We used a convenience sample for this study, which may not be as representative as a random sample, and limits generalizablity. Some of the inclusion criteria limited the findings, such as living with HIV for at least 2 years. Thus, these findings may not be generalizable to newly diagnosed PLWH. Furthermore, we only recruited PLWH currently engaged in medical care so our findings may not be representative of those who are not in care. Also, the employment status of the sample group was not analyzed because of the inadequacy of the available data. The version of ESAS used for the study did not measure the time frame for symptoms, and some confusing items (e.g., “well-being,” “drowsiness”) were not defined for clarity. Consequently, participants who were not familiar with the meanings of these terms could have responded inaccurately. Because of the high incidence of depressive illness in this cohort, it was unclear whether they reported depression as a symptom or a disease. There were no previous studies to compare some of the findings, such as the mediating effect of symptoms and the relationship between the influencing factors and overall function, among others. The data lacked biomarkers such as the CD4+ T-cell count or AIDS status, which could have been used as physiologic factors. Also, we did not test the relationship between ART and symptoms. Finally, this study was limited to PLWH in Cleveland, although some of the results were similar to previous findings (McGowan et al., 2017; Webel et al., 2015). Because of this and other identified limitations, generalization of this study's findings should be done with caution.
In conclusion, we found strong evidence that symptoms were prevalent among PLWH. Based on the findings, nurses should consider initiating symptom assessment and management strategies at an early stage of the disease trajectory. We propose that interventions are needed to reduce symptoms and strengthen social support. These should be accessible and tailored to the needs of PLWH to improve their overall function. Similarly, reinforcing a policy milieu that facilitates support groups for PLWH, stable housing, and treatment of substance abuse would likely reduce symptom-related morbidity. We established the feasibility of using the ESAS, the FS, and TOUS in symptom studies of PLWH, and we recommend their use in future research. As proposed by TOUS, this study explored only selected variables in each of the three key elements, yet it was able to elicit the relationships between the components. We propose future studies on the relationship between symptom burden and other variables, such as problem-solving ability and self-management, which the present study did not elicit. We propose to add a symptom management component, a missing link in TOUS, which, if added, could improve the theory. Our findings confirmed previous studies and extended the knowledge of the relationship between the influencing factors, symptoms, and perceived overall function.
The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.
- Symptoms are present throughout the course of the HIV disease experience. Early symptom assessment, symptom management planning, and implementation can improve the symptom experience of PLWH.
- Symptom management strategies should focus not only on the reported symptoms but also on prevention and/or alleviating the possible predicting factors.
- Clinicians need to provide an enabling environment for PLWH to enhance their perceived social connectedness, ensuring that they are not stigmatized in health care encounters and encouraging them to join support groups.
- Improved housing support and treatment of substance use disorders can improve symptom management of PLWH.
Data collection for this study was funded by the National Institutes of Health (NIH), National Institute of Nursing Research (NINR), Grant #NR014059, Jacquelyn Slomka, PhD, RN, Principal Investigator.
Aouizerat B. E., Miaskowski C. A., Gay C., Portillo C. J., Coggins T., Davis H., Lee K. A. (2010). Risk factors and symptoms associated with pain in HIV-infected adults. Journal of the Association of Nurses in AIDS Care, 21(2), 125–133. doi: 10.1016/j.jana.2009.10.003
Boyer V., Vilotitch A., Marcellin F., Demoulin B., Dray-Spira R., Spire B. (2017). Self-reported bothersome symptoms across different socioepidemiological groups of people living with HIV
attending French hospitals: Results from the ANRS-VESPA2 survey. Journal of Pain and Symptom Management, 54(1), 110–119. doi: 10.1016/j.jpainsymman.2017.03.010
Brandt C. P., Sheppard D. P., Zvolensky M. J., Morgan E. E., Atkinson J. H., Woods S. P. (2016). Does age influence the frequency of anxiety symptoms and disorders in HIV disease? Journal of HIV/AIDS and Social Services, 15(4), 380–403. doi: 10.1080/15381501.2016.1189865
Brink E., Skott C. (2013). Caring about symptoms in person-centered care. Open Journal of Nursing, 3, 563–567. doi: 10.4236/ojn.2013.38077
Bruera E., Kuehn N., Miller M. J., Selmser P., Macmillan K. (1991). The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. Journal of Palliative Care, 7(2), 6–9.
Bucciardini R., Pugliese K., Francisci D., Costantini A., Schiaroli E., Cognigni M., … Vella S. (2016). Validation of a self-reported HIV symptoms list: The ISS-HIV symptoms scale. AIDS Research and Therapy, 13(1), 18. doi: 10.1186/s12981-016-0102-2
Byun E., Gay C. L., Lee K. A. (2016). Sleep, fatigue, and problems with cognitive function in adults living with HIV. Journal of the Association of Nurses in AIDS Care, 27(1), 5–16. doi: 10.1016/j.jana.2015.10.002
Chang V. T., Hwang S. S., Feuerman M. (2000). Validation of the Edmonton Symptom Assessment Scale
. Cancer, 88(9), 2164–2171.
Chang V. T., Hwang S. S., Feuerman M., Kasimis B. S., Thaler H. T. (2000). The Memorial Symptom Assessment Scale Short Form (MSAS-SF): Validity and reliability. Cancer, 89, 1162–1171.
Eriksen T. E., Risør M. B. (2014). What is called symptom? Medicine, Health Care & Philosophy, 17(1), 89–102. doi: 10.1007/s11019-013-9501-5
Farrant L., Gwyther L., Dinat N., Mmoledi K., Hatta N., Harding R. (2014). Maintaining wellbeing for South Africans receiving ART: The burden of pain and symptoms is greater with longer ART exposure. South African Medical Journal, 104(2), 119–123. doi: 10.7196/SAMJ.7461
Flickinger T. E., DeBolt C., Waldman A. L., Reynolds G., Cohn W. F., Beach M. C., Dillingham R. (2017). Social support in a virtual community: Analysis of a clinic-affiliated online support group for persons living with HIV/AIDS. AIDS and Behavior, 21, 3087–3099. doi: 10.1007/s10461-016-1587-3
Gapstur R. L. (2007). Symptom burden
: A concept analysis and implications for oncology nurses. Oncology Nursing Forum, 34(3), 673–680. doi: 10.1188/07.ONF.673-680
Gill A., Chakraborty A., Selby D. (2012). What is symptom burden
: A qualitative exploration of patient definitions. Journal of Palliative Care, 28(2), 83–89.
Gottlieb L., Sandel M., Adler N. E. (2013). Collecting and applying data on social determinants of health in health care settings. Journal of American Medical Association Internal Medicine, 173(11), 1017–1020.
Hammond E. R., Lai S., Wright C. M., Treisman G. J. (2016). Cocaine use may be associated with increased depression in persons infected with HIV. AIDS and Behavior, 20(2), 345–352. doi: 10.1007/s10461-015-1187-7
Harding R., Lampe F. C., Norwood S., Date H. L., Clucas C., Fisher M., Sherr L. (2010). Symptoms are highly prevalent among HIV outpatients and associated with poor adherence and unprotected sexual intercourse. Sexually Transmitted Infections, 86, 520–524. doi: 10.1136/sti.2009.038505
Hawthorne G. (2006). Measuring social isolation in older adults: Development and initial validation of the friendship scale. Social Indicators Research, 77(3), 521–548. doi: 10.1007/s11205-005-7746-y
Hawthorne G. (2008). Perceived social isolation in a community sample: Its prevalence and correlates with aspects of peoples' lives. Social Psychiatry and Psychiatric Epidemiology, 43(2), 140–150. doi: 10.1007/s00127-007-0279-8
Heinz A. J., Fogler K. A., Newcomb M. E., Trafton J. A., Bonn-Miller M. O. (2014). Problematic alcohol use among individuals with HIV: relations with everyday memory functioning and HIV symptom severtity. AIDS Behaviour, 18, 1302–1314. doi: 10.1007/s10461-013-0602-1
Holmes W. C., Shea J. A. (1999). Two approaches to measuring quality of life in the HIV/AIDS population: HAT-QoL and MOS-HIV. Quality of Life Research: an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 8, 515–527.
Holzemer W. L., Hudson A., Kirksey K. M., Hamilton M. J., Bakken S. (2001). The Revised Sign and Symptom Check-list for HIV (SSC-HIVrev). Journal of the Association of Nurses in AIDS Care, 12(5), 60–70.
Hui D., Bruera E. (2017). The Edmonton Symptom Assessment System 25 years later: Past, present, and future development. Journal of Pain and Symptom Management, 53(3), 630–643. doi: 10.1016/j.jpainsymman.2016.10.370
Justice A. C., Holmes W., Gifford A. L., Rabeneck L., Zackin R., Sinclair G., Wu A. W. (2001). Development and validation of a self-completed HIV symptom index. Journal of Clinical Epidemiology, 54, S77–S90
Lawson E., Sabin C., Perry M. N., Richardson D., Gileece Y., Churchill D., Walker-Bone K. (2015). Is HIV painful? An epidemiologic study of the prevalence and risk factors for pain in HIV-infected patients. The Clinical Journal of Pain, 31, 813–819. doi: 10.1097/AJP.0000000000000162
Lenz E. R., Pugh L. C. (2014). The theory of unpleasant symptoms
. In Smith M., Liehr P. R. (Eds.), Middle range theory for nursing (3rd ed.) (pp. 165–195). New York: Springer, LLC.
Lenz E. R., Pugh L. C., Milligan R. A., Gift A., Suppe F. (1997). The middle-range theory of unpleasant symptoms
: An update. ANS. Advances in Nursing Science, 19(3), 14–27.
McGowan J. A., Sherr L., Rodger A. J., Fisher M., Miners A., Anderson J., Lampe F. C. (2017). Age, time living with diagnosed HIV infection, and self-rated health. HIV Med, 18, 89–103. doi: 10.1111/hiv.12398
Peltzer K. (2013). HIV-related symptoms and management in HIV and antiretroviral therapy patients in KwaZulu-Natal, South Africa: a longitudinal study. Journal of Social Aspects of HIV/AIDS, 10(2), 96–104.
Quinn K., Sanders C., Petroll A. E. (2017). “HIV is not going to kill me, old age is!” the intersection of aging and HIV for older HIV-infected adults in rural communities. AIDS Education and Prevention, 29(1), 62–76.
Santos A. S. A. C., Silveira E. A., Falco M. O. (2016). Gastrointestinal symptoms in HIV-infected patients: Female sex and smoking as risk factors in an outpatient cohort in Brazil. Plos One, 11(10), e0164774. doi: 10.1371/journal.pone.0164774
Saracino A., Zaccarelli M., Lorenzini P., Bandera A., Marchetti G., Castelli F., Monforte A. (2018). Impact of social determinants on antiretroviral therapy access and outcomes entering the era of universal treatment of people living with HIV
in Italy. BMC Public Health, 18, 870. doi: 10.1186/s12889-018-5804-z
Schnall R., Jia H., Olender S., Gradilla M., Reame N. (2018). In people living with HIV
(PLWH), menopause (natural or surgical) contributes to the greater symptom burden
in women: Results from an online U.S. survey. Menopause: the Journal of the North American Menopause Society, 25(7), 774–752. doi: 10.1097/GME.0000000000001083
Schnall R., Siegel K., Jia H., Olender S., Hirshfield S. (2018). Racial and socioeconomic disparities in the symptom reporting of persons living with HIV. AIDS Care, 30(6), 774–783. doi: 10.1080/09540121.2017.1417532
Selby D., Chakraborty A., Myers J., Saskin R., Mazzotta P., Gill A. (2011). High scores on the Edmonton Symptom Assessment Scale
identify patients with self-defined high symptom burden
. Journal of Palliative Medicine, 14(12), 1309–1316. doi: 10.1089/jpm.2011.0187
Walker R. J., Smalls B. L., Campbell J. A., Strom Williams J. L., Egede L. E. (2014). Impact of social determinants of health on outcomes for type 2 diabetes: A systemic review. Endocrine, 47, 29–48. doi: 10.1007/s12020-014-0195-0
Webel A. R., Prince-Paul M., Ganocy S., DiFranco E., Wellman C., Avery A., Slomka J. (2019). Randomized clinical trial of a community navigation intervention to improve well-being in persons living with HIV and other co-morbidities. AIDS Care, 31(5), 529–535.
Webel A. R., Sattar A., Schreiner N., Phillips J. C. (2016). Social resources, health promotion behavior, and quality of life in adults living with HIV. Applied Nursing Research, 30, 204–209. doi: 10.1016/j.apnr.2015.08.00
Webel A. R., Wantland D., Rose C. D., Kemppainen J., Holzemer W. L., Chen W. T., Portillo C. (2015). A cross-sectional relationship between social capital, self-compassion, and perceived HIV symptoms. Journal of Pain and Symptom Management, 50(1), 59–68. doi: 10.1016/j.apnr.2015.08.001
Webel A. R., Willig A. L., Liu W., Sattar A., Boswell S., Crane H. M., Lederman M. M. (2019). Physical activity intensity is associated with symptom distress in the CNICS cohort. AIDS and Behavior, 23(3), 627–635.
Wilson N. L., Azuero A., Vance D. E., Richman J. S., Moneyham L. D., Raper J. L., Kempf M. C. (2016). Identifying symptom patterns in people living with HIV
disease. Journal of the Association of Nurses in AIDS Care, 27(2), 121–132. doi: 10.1016/j.jana.2015.11.009