HIV-associated neurocognitive disorder (HAND) is a neuropsychiatric classification among persons with HIV (PWH) that indicates one is experiencing measurable cognitive deficits compared to demographically similar individuals. Such cognitive deficits may negatively affect medication adherence, instrumental activities of daily living, and quality of life (Vance, Cody, & Moneyham, 2017). Studies suggest that the prevalence of HAND can be as high as 30% to 50% in PWH (Bonnet et al., 2013; Heaton et al., 2010). As PWH age, the prevalence and severity of HAND will likely increase (Goodkin et al., 2017; Vance, Fazeli, & Gakumo, 2013). Because approximately 70% of PWH will be ≥50 years old by 2020, such cognitive deficits are a concern for health care providers (Brooks, Buchacz, Gebo, & Mermin, 2012).
In 2007, a revised classification for HAND was developed in Frascati, Italy by a team of NeuroAIDS experts (Antinori et al., 2007; Woods et al., 2004). The Frascati criteria include a normed-based cognitive battery (i.e., adjusted for age, education, gender, and race [when norms are available]) that assesses performance in at least six cognitive domains (e.g., attention, verbal learning and memory, speed of processing, executive functioning, psychomotor speed, spatial learning and memory), and ranges in degree of cognitive and functional impairment. Asymptomatic neurocognitive impairment (ANI) and mild neurocognitive disorder (MND) are the most common forms of HAND and are diagnosed when a person scores ≥1 standard deviation below the normative mean in at least two cognitive domains. The prevalence of ANI for people treated with combination antiretroviral therapy (cART) is 30% and between 20% and 30% for MND. Persons with ANI have cognitive deficits that do not interfere with function, whereas persons with MND have mild to moderate cognitive deficits that interfere with everyday life. HIV-associated dementia is the most severe form of HAND and occurs when a person scores ≥2 standard deviations below the normative mean within at least two cognitive domains accompanied with marked everyday functioning problems (Saylor et al., 2016). The prevalence for HIV-associated dementia amongst persons treated with cART is between 2% and 8%. Despite the prevalence of HAND, there has been no development of established evidence-based consensus treatment guidelines, only general recommendations (Cody & Vance, 2016; Vance, Fazeli, & Gakumo, 2013).
As there are limited treatment options available, should persons with HAND be provided feedback on their cognitive performance, especially for mild cases of cognitive deficits that do not interfere with their everyday functioning? Although PWH may respond proactively to this feedback, the news may also cause needless emotional distress from the diagnostic label. For many PWH handling other issues (e.g., poverty, stigma, comorbidities), such news could add another stressor to existing ones. Reporting this news to patients raises an ethical concern. On the contrary, learning about their cognitive deficits may motivate PWH to seek treatment and education about HAND that could lead to lifestyle changes (e.g., physical exercise) to protect their brain health as they age (Vance, Gakumo, Childs, Enah, & Fazeli, 2017), but they may become emotionally distressed from learning about their suboptimal cognitive performance, which may elicit a normal grief response.
Reactions to a cognitive diagnosis are further illustrated in a previous study that compared 259 older adults with Alzheimer's disease and mild cognitive impairment (MCI). One group was made aware of their diagnosis and the other group was not. The unaware group reported a greater quality of life than the aware group (Stites, Karlawish, Harkins, Rubright, & Wolk, 2017). The label from this neuropsychological diagnosis carried perceived expectations and raised their awareness of how Alzheimer's disease and MCI may affect them. A diagnosis of MCI or Alzheimer's disease may cause a person to experience additional symptoms. These results provide insight into possible negative effects that can occur when a person is told he/she has measurable cognitive deficits indicative of HAND. Thus, the purpose of the current study was to describe the (a) reactions of PWH upon being informed of a possible diagnosis of HAND and (b) concerns about this diagnosis.
The current qualitative descriptive study used the clinical trial, Training on Purpose Study (TOPS; Vance et al., 2018). Participants in TOPS were administered a comprehensive, norm-based cognitive battery to determine if they met cognitive criteria for HAND. Participants who met HAND criteria were randomized in receiving either 20 hours of computerized cognitive training or put in a no contact control group. Approximately 6 to 8 weeks after the HAND assessment, 85 participants were interviewed to determine reactions and concerns regarding possible cognitive changes related to HIV. The current study was approved by the University's Institutional Review Board (IRB) for the use of human subjects.
Participants were recruited from a variety of sources (e.g., a university HIV/AIDS clinic, health fairs, churches). Flyers and other recruitment materials were placed in these locations and participants were instructed to call the research office for more information and were screened over the telephone to determine whether they met basic study eligibility criteria: age ≥40, diagnosed with HIV for at least 1 year, and English speaking, as the assessments and computerized training programs were delivered in English. Those with significant neuromedical comorbidities (e.g., multiple sclerosis) were excluded. Other conditions (e.g., legally blind or deaf, currently undergoing radiation or chemotherapy, history of brain trauma) that could impact cognitive assessment and cognitive training also necessitated exclusion (Vance et al., 2013). If participants met basic criteria, they were scheduled for a baseline assessment, consented, and were administered a cognitive assessment to determine whether they had HAND. Meeting the cognitive criteria for HAND was an essential component of the parent study. Thus, participants were informed of their cognitive status as it was a criterion for inclusion in the parent study.
Frascati Criteria/HAND. The Frascati criteria were used to classify the degree of cognitive deficit participants were experiencing (Antinori et al., 2007). A global clinical rating score was given to participants based on an algorithm that combined all scores from the neurocognitive battery (Woods et al., 2004). This score ranged from 1 (best cognitive performance) to 9 (worst cognitive performance). A score of 1 to 3 was in the above to average range, 4 indicated borderline HAND, and scores of 5 to 9 indicated more severe forms of HAND. If participants scored 5 to 9, they were mailed an IRB–approved formal letter from the principal investigator (D.E.V.) stating that they had a cognitive performance consistent with HAND and were going to be randomized into the larger study to either receive 20 hours of cognitive training or no cognitive training.
The letter contained language that the results should not be considered a clinical diagnosis and should be interpreted with caution. If they were concerned, they should seek additional consultation with their clinician. Those who did not have HAND level performance were also sent a letter informing them that they did not have a cognitive performance indicative of HAND and were no longer contacted. The purpose of the larger clinical trial was to examine if the cognitive intervention could improve cognitive symptoms so that participants no longer met the diagnostic criteria for HAND. For more information about the method of the larger clinical trial of the cognitive training protocol, please see Vance, Jensen, et al. (2017).
Demographic Information. During the baseline assessment, participants were given a pencil and a questionnaire regarding basic demographic information. This information included age, gender, race, yearly household income, and education. Education ranged from 1 year (grade 1) to 20 years (doctoral degree).
HIV Status. Participants signed an authorization for use/disclosure of protected health information (PHI) for research form. This form was faxed to their HIV treatment provider to verify their HIV status, as well as collect information on participants' medications and HIV history, including current CD4+ lymphocyte count, nadir CD4+ lymphocyte count, and current viral load.
Health History. A self-report questionnaire was used to collect data on the presence of common comorbidities. Participants were asked whether their physician had told them if they have a specific condition and they responded with either yes or no.
Depression Symptomatology. The Center for Epidemiologic Studies Depression Scale-revised (CES-D; Radloff, 1977) was used to measure participants' level of depressive symptomatology. Participants indicated on 20 items approximately how much time they felt a certain way with each emotionally laden item ranging from 0 (rarely or none of the time) to 3 (most or almost all the time); these items were summed. Participants were considered to have clinically relevant depressive symptomatology if they scored ≥16.
Qualitative Questions Regarding HAND Feedback. A post-test assessment was administered after cognitive training was completed. For the control and experimental groups, this post-test occurred approximately 6 to 8 weeks after the baseline assessment. At the end of their post-test assessment, participants were asked two open-ended questions regarding their reactions about being told they had HAND. The first question (i.e., diagnosis reaction) asked participants about their reaction to receiving a HAND diagnosis: “We informed you based upon your test scores that you may have some cognitive problems. What was your reaction to that?” The second question (i.e., diagnosis concerns) asked if participants had any concerns about hearing this information: “What concerns do you have about that information?” These answers were recorded verbatim.
Participants' responses to each question were transcribed into an Excel® data file. Each participant's responses were read and coded independently by two coders (M.J., F.T.) who identified common themes based on participants' reactions to each question. An open-coding scheme using conventional content analysis was used to classify responses into distinct themes (Hsieh & Shannon, 2005). Some responses had multiple statements that could be coded into two themes. The two independent coders then merged the codes until consensus was achieved. A pivot table was created to measure the count of each coded response.
Table 1 includes a description of the sample characteristics. Mean participant age was 54.2 years (range = 40 to 74 years). Most participants in the sample were African American (87%) and male (68.2%). The mean level of education was 12.5 years (range = 6 to 20 years), and the mean household income level was approximately $17,600 USD per year. The mean nadir CD4+ lymphocyte count was 366.4 cells/µL. Nadir CD4+ lymphocyte count refers to the participants' lowest CD4+ count to date. The mean current CD4+ lymphocyte count was 691.4 cells/µL, and the mean current viral load was 2,319.78 copies/mL. Only 8 (9.4%) participants had a current CD4+ lymphocyte count ≤200 cells/mL, indicative of AIDS. The most common health condition reported was hypertension/high blood pressure (58.8%). Mood problems also appeared frequently (41.1%), followed by high cholesterol (40%) and constitutional problems (40%). Mean CES-D score was 17.6, with scores ranging from 0 to 50. Forty-eight (56.5%) participants had a score ≥16, indicative of clinically relevant depressive symptomatology.
Participant Characteristics (N = 85)
Diagnosis Reaction Themes
The first question asked, “We informed you based upon your test scores that you may have some cognitive problems. What was your reaction to that?” Some participants' responses included multiple statements that could be classified as two distinct themes. Such cases were coded as if they were two responses, and thus received two themes. Because of this coding, there were more responses than participants, with 85 participants yielding 98 classifiable responses. Responses were then placed into six different themes: Confirmation, Unexpected, Anxiety, Desire to Improve, No Reaction, and Sadness. Many participants' responses included more than one theme. Table 2 shows the number of responses to each theme and the percentage of participants who had that response.
Response Theme Frequencies for Question 1 (Diagnosis Reactions)
Confirmation. The most common theme was confirmation. Approximately one half (57.7%) of participants responded that they were aware they had a cognitive problem and the feedback about meeting the criteria for HAND was a confirmation of what they already suspected. For example, one participant responded, “I was not surprised. I anticipated with HIV there would be problems down the line.” Another participant responded by saying, “I knew. I thought I had problems already.”
Unexpected. The second most common theme was a reaction of unexpected. Approximately one fourth (22.4%) of participants responded that they were surprised or did not expect that they were having cognitive problems. For example, one participant responded, “I did not expect to hear it and was concerned.” Another surprise reaction was, “Frustration, I was surprised. I thought my memory was better than it was.”
Anxiety. Reactions in the anxiety theme comprised 14.1% of participants' responses. An example of a participant responding with only anxiety was, “I had a little worry. Some anxiety.” Many anxiety responses were paired with either confirmation or unexpected reactions. An example of a participant responding with anxiety and surprise was, “Fear. I was afraid like something was wrong with me. I did not feel like anything changed.” Another participant responded with anxiety and confirmation by saying, “It was worrying then acceptance. I kind of expected it.”
Desire to Improve. The fourth most common theme (10.6%) was a desire to improve. For example, one participant responded with just desire to improve by saying, “Go for it. See what I can do about it.” None of the participants who responded with a desire to improve responded with statements in the themes of anxiety, sadness, or unexpected. The only theme that was combined with desire to improve was confirmation that they had a cognitive deficit. One example of a participant responding with desire to improve and confirmation was shown by him saying, “I want to improve that problem. I was not surprised to hear it. I have been dealing with this for a minute [a long time].” Another participant responded with confirmation and desire to improve, “I need to get it treated. I expected it.”
No Reaction. Some participants (7.1%) had no reaction to being told they had cognitive problems. The typical reaction was exemplified by one participant saying, “It wasn't no problem.” Another participant responded by simply saying, “None,” whereas another commented, “No reaction to it.”
Sadness. Three participants (3.5%) reacted with sadness. For example, one participant responded, “A little sad, but I'll get over it.” Two participants reacted with sadness and confirmation by saying, “Sad to hear. I assumed I had problems” and “I was depressed, but I got over it. I figured I did.”
Diagnosis Concern Themes
The second question asked participants, “What concerns do you have about that information [potential cognitive problems]?” Due to the complexity of responses and coding approach, there were more responses than participants. For the second question, 85 participants yielded 101 classifiable responses. Based on the responses, four themes were identified: Desire to Improve, Not Concerned, Concerned, and Knowledge Seeking. Table 3 shows the number of responses to each theme and the percentage of participants who had that response.
Response Theme Frequencies for Question 2 (Diagnosis Concerns)
Desire to Improve. The most common theme was a desire to improve. Approximately one half (50.6%) of participants responded that they had a desire to improve their cognition. For example, one participant responded, “I am glad I heard it. I want to work on it and get my brain better.” Another participant responded, “I just want to try to do better.”
Not Concerned. The second most common theme (31.8%) from participants were responses that showed they were not concerned with having cognitive problems. For example, one participant responded, “I do not have any concerns. None at all.” Another responded, “I have no concerns.” Lastly, a participant responded, “No concerns. Just thankful to verify something I was feeling.”
Concerned. Approximately one fourth (23.5%) of participants responded with statements that showed concern. One participant responded, “I talked to my doctor. I am concerned I won't be able to take care of myself.” Another participant responded, “Future employment is my primary concern and long-term mental health.” A third participant stated, “I am deteriorating at an old decrepit age of 55. No one wants to get older or lose function.”
Knowledge Seeking. This response theme was dependent on the Desire to Improve theme. Participants made statements that showed not only a desire to improve their cognition but that they were also seeking knowledge on how to improve their cognition. Some participants (12.9%) identified with the knowledge-seeking theme. For example, one participant responded, “How can I better improve at this age. Is it impossible to improve?” Another participant remarked, “Is there any medication or exercise I can do to improve it [my brain] at my age?”
In the current study, the authors assessed participants' reactions and concerns upon learning of their suboptimal cognitive performance leading to a possible HAND diagnosis. Overall, the most commonly appearing themes were Desire to Improve (50.6%; 10.6%), followed by Confirmation (57.7%), Not Concerned (31.8%), No Reaction (7.1%), Concerned (23.5%), Unexpected (22.4%), Anxiety (14.1%), Knowledge Seeking (12.9%), and Sadness (3.5%). The implicit assumption was that most participants would be upset over receiving this information, but that was not observed. Most themes reflected positive or neutral reactions and concerns, whereas fewer negative themes (i.e., anxiety, sadness) were observed.
Desire to Improve, including Knowledge Seeking, were the main themes observed, suggesting that these participants thought they may be able to alter their HAND diagnosis. These findings suggest the general public ascribes to the value of prevention and treatment of cognitive problems, suggesting a departure from a fatalistic view of dementia (Cations, Radisic, Crotty, & Laver, 2018). Thus, participants may have the mindset that HAND is a milder form of Alzheimer's disease or dementia; as such, they may be open to pursue lifestyle modifications to support well-being and delay functional declines, as has been observed in focus groups of older PWH when talking about cognitive decline (Vance, Gakumo, et al., 2017).
Many participants (57.7%) confirmed and recognized that they had some cognitive problems. This confirmation suggests that such cognitive problems may have been interfering with everyday functioning and activities of daily living, which has been observed in other studies (Vance et al., 2013). Furthermore, confirmation and awareness of such cognitive problems may reflect that their metacognitive abilities (i.e., the ability to think about thinking) is not severely compromised, although in some studies it can be for PWH (Vance, Ross, & Downs, 2008).
Lack of concern was a commonly observed theme, which may reflect a passive acceptance of cognitive decline (Vance, Gakumo, et al., 2017). In lacking an understanding of HAND, some participants experiencing such cognitive problems may be relieved to have them characterized by a diagnosis of HAND and not something more severe (e.g., Alzheimer's disease, Parkinson's disease, vascular dementia). This lack of concern may also reflect apathy, which is common in HIV given the role of frontal lobe pathology observed in PWH (Kamat, Woods, Marcotte, Ellis, & Grant, 2012).
A notable minority of participants experienced negative reactions to the HAND diagnosis (i.e., sadness, unexpected, concern, anxiety); this finding is not unexpected. In a sample of 259 older adults, Stites et al. (2017) observed that self-reported quality of life, as measured by physical well-being, greater difficulties in daily life, and satisfaction with daily life, is reduced when one receives a dementia diagnosis such as MCI or Alzheimer's disease.
Implications for Practice
From the current study, two implications for practice are posited. First, although HAND diagnosis is more of a cognitive categorization and not a specific disorder with defined specific mechanisms for treatment, it is not clear whether patients should be told they meet the criteria for HAND. This point is especially pertinent as there are no consensus guidelines to direct treatment (Cody & Vance, 2016). Yet, based on these data, most participants responded well to being told they may have HAND. In a study of 126 PWH, Cummins et al. (2018) observed that of those who heard about HAND and were concerned about it, the majority (77%) valued talking to a medical professional. Thus, broaching the topic of HAND may be welcomed and advisable to many PWH, especially as many PWH are aging and worried about cognitive problems.
Second, for those concerned about cognitive problems, health educators and clinicians can inform PWH about activities that can have a positive effect on the brain's neuroplastic nature. Stimulating activities and lifestyle changes (e.g., increasing physical activities, reducing alcohol intake) can help the brain function better (Cody & Vance, 2016). In fact, for those with HAND, a 20% fluctuation has been observed over a 1-year period, with some PWH improving their cognitive functioning and no longer meeting criteria for HAND (Antinori et al., 2007). One case study found that a PWH with HAND no longer met criteria for HAND after engaging in 20 hours of computerized cognitive training (Hossain, Fazeli, Tende, Bradley, McKie, & Vance, 2017). Thus, it is important to educate and empower patients about strategies to improve brain and cognitive health (Vance, Gakumo, et al., 2017).
Strengths and Limitations
All studies have strengths and limitations. In the current study, three strengths were noted. First, HAND diagnosis was derived by using norm-based cognitive measures that have excellent reliability and validity (Woods et al., 2014). Second, the sample was a relatively large heterogeneous sample of African American and Caucasian men and women with HIV, which ensures the findings are generalizable. Third, the qualitative data were independently coded separately by two coders, who then came to a consensus on all themes, thus establishing high reliability to the interpretation of themes.
Two limitations were also noted. First, after approximately 6 to 8 weeks, participants were asked to remember their reactions to receiving a letter stating that they met the cognitive criteria for HAND. Thus, these data were prone to recall bias. Although participants had 2 months to ruminate about this information, it is likely that participants had time to deeply process this information, which could have enhanced the quality of their responses. Second, the authors did not follow up with participants who were informed that they did not have HAND. Asking these participants about their reactions to this information may have provided unique insights about the advantages and disadvantages about diagnosing patients with HAND.
Most participants acknowledged that they were aware of their probable HAND diagnosis and expressed a desire to improve their cognition. The current study provides a glimpse into the possible positive and negative consequences of telling someone they have a neurocognitive disorder. More research is needed to help discern any of the other possible benefits or drawbacks to informing participants about having HAND. Future studies on this topic should assess reactions to having HAND over a longer period as well as what impact receiving this diagnosis may have on changes in lifestyle, health-seeking behaviors, and the motivation to seek knowledge to improve one's cognition.
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Participant Characteristics (N = 85)
|Variable||n (%)||Mean (SD)||Range|
|Age (years)||54.14 (7)||40 to 74|
| African American||74 (87)|
| Caucasian||10 (11.8)|
| Hispanic||1 (1.2)|
| Male||58 (68.2)|
| Female||27 (31.8)|
|Education (years)a||12.48 (2.3)||6 to 20|
|Household income ($10k USD)b||1.76 (1.5)||1 to 11|
| Nadir CD4+ lymphocyte countc (cells/μL)||366.4 (356.9)|
| Current CD4+ lymphocyte countd (cells/μL)||691.41 (442.1)|
| Current viral load (copies/mL)||2,319.78 (9,887.5)|
| Hypertension/high blood pressure||50 (58.8)|
| Mood problems||35 (41.1)|
| High cholesterol||34 (40)|
| Constitutional problems||34 (40)|
| Diabetes||15 (17.6)|
|Depression (CES-D score)||17.6 (10.9)||0 to 50|
|Global clinical rating score||7.5 (1.3)||5 to 9|
Response Theme Frequencies for Question 1 (Diagnosis Reactions)
|Categories||Total Response Theme (n, %)a||Total Participants (n, %)b|
|Confirmation||49 (50)||49 (57.7)|
|Unexpected||19 (19.4)||19 (22.4)|
|Anxiety||12 (12.2)||12 (14.1)|
|Desire to improve||9 (9.2)||9 (10.6)|
|No reaction||6 (6.1)||6 (7.1)|
|Sadness||3 (3.1)||3 (3.5)|
Response Theme Frequencies for Question 2 (Diagnosis Concerns)
|Categories||Total Response Theme (n, %)a||Total Participants (n, %)b|
|Desire to improve||43 (42.6)||43 (50.6)|
|Not concerned||27 (26.7)||27 (31.8)|
|Concerned||20 (19.8)||20 (23.5)|
|Knowledge seeking||11 (10.9)||11 (12.9)|