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Several studies have found that people living with the human immunodeficiency virus (HIV) suffer from posttraumatic stress disorder (PTSD) at a higher rate than that of the general population (Gore-Felton et al., 2001; Kimerling et al., 1999; Martinez et al., 2002; Mellins, Ehrardt, & Grant, 1997).  In addition, people are living longer with the disease as a result of medical treatment advances, and a fast-growing population of individuals infected with HIV is coping with complex psychosocial demands of this life-threatening illness.  I will review the research that currently exists with regard to HIV and PTSD.  Further, it is important to determine to what extent psychological treatment should be integrated with the medical treatment of people living with HIV and AIDS.  My aim is to evaluate the recent developments in the field regarding PTSD as a viable psychological diagnosis for individuals living with HIV.  

Also, I discuss the accumulating literature addressing the importance of assessment and treatment of PTSD in patients recently diagnosed with HIV, and the push for this becoming standard practice in primary care settings.  Another aim is to consider whether patients for whom the HIV diagnosis is the primary or sole traumatic event differ from patients who have experienced a significant number of traumatic events prior to HIV diagnosis.

Posttraumatic Stress Disorder

In the Diagnostic and Statistical Manual of Mental Disorders, 4th edition, text revision (DSM-IV-TR; American Psychiatric Association, 2000a), the defining characteristic of a traumatic stressor is presence of a life-threat or threat to one’s physical integrity where the individual’s response is great fear, horror or helplessness.  Traumatic stressors are generally thought of as involvement or proximity to war combat, witnessing or being subjected to violent acts, torture, and natural or man-made disaster.  Individuals may have intrusive thoughts about these past experiences, or avoidant/numbing reactions to them.  While this may be true of receiving a diagnosis for a life-threatening medical illness or disease, additional circumstances specific to living with the medical condition warrant consideration as contributing to continued trauma.

The biological aspects of trauma were explored as well as the psychological effects of traumatic stressors.  For example, the use of functional magnetic resonance imaging (fMRI) and positron emission tomography (PET) has led to evidence of alteration in brain neurocircuitry in response to trauma.  Specifically, patients with PTSD show greater activation of the amygdala and insula and lesser activation in the anterior cingulate cortex (ACC) and ventromedial prefrontal cortex (Friedman & Pitman, 2007; Shin et al., 2007).  Chronically applied stress can inhibit development of hippocampal neurons, cause certain neurons of the hippocampus to atrophy, and elevate cortisol levels.  These effects of stress could have detrimental effects on the optimal functioning of the immune system (Sapolsky, 2004).

Posttraumatic Stress Disorder and Medical Illness as Trauma

There are a number of research studies examining coexistence of PTSD and life-threatening medical illnesses and diagnoses.  The subject of medical events as traumatic stressors has gained considerable interest, and is becoming a focus of research.  Medical diagnoses and events surrounding medical illness have been found to result in extreme fear, helplessness, or horror (Baum & Mundy, 2004).  In fact, in the Diagnostic and Statistical Manual, 4th edition (DSM-IV; American Psychiatric Association, 1995), it was recognized that PTSD may be precipitated by life-threatening medical illness or diagnosis.

Much research on PTSD in the medical population began with adult cancer patients, noting incidence of cancer-related PTSD ranging from 0% to 32%. A cancer diagnosis and treatment effects may also produce trauma and stress, although rates of distress in this population are low and patients seem to cope effectively overall.  Nonetheless, traumatic stress syndrome has been observed (Kangas, Henry, & Bryant, 2002).  Research on PTSD following medical diagnosis and treatment were reviewed in the areas of cardiac medicine, vascular medicine, obstetrics, gynecology, and HIV.  Studies also included patient awareness under anesthesia and the experience of intensive care treatment.  The purpose of reviewing the literature was to determine whether the experience of severe physical illness, an event internal to the individual, satisfied the traumatic stress criterion for PTSD (Tedstone & Tarrier, 2003).  As research on psychological trauma continues, issues surrounding the differences between medical stressors and more traditional sources of trauma are being highlighted.  There is advocacy and disagreement on the application of PTSD to those diagnosed with medical disease or illness (Mundy & Baum, 2004).

Experiencing a subjective sense of life-threat as a result of some event is vital for the development of PTSD.  Medical diagnoses and events, including myocardial infarction, a cancer diagnosis and the severe effects of treatment, and HIV with its chronic course, have been found to result in extreme fear, helplessness, or horror.  The intrusions and re-experiencing symptoms that occur as part of posttraumatic stress experienced by those receiving life-threatening medical diagnoses, however, may be of a different type than those experienced by individuals exposed to traditional traumas (Mundy & Baum, 2004).

Tedstone and Tarrier (2003) examined the occurrence of PTSD in adults with medical conditions by identifying studies from a search of relevant articles in the Medline and PsychINFO databases between 1985 to 2003.  It was concluded that PTSD prevalence rates were highest in patients who had been in a life-threatening medical situation or received the diagnosis of a terminal illness in comparison to the general population.  One possible explanation of this is knowledge about disease recurrence and progression can produce greater PTSD symptoms compared to the initial diagnosis, if the degree of life threat is perceived as more intense.

Posttraumatic Stress Disorder and HIV Disease

Understanding PTSD in people living with HIV or AIDS is necessary, as mental health impacts overall HIV treatment, health-related behaviors, and quality of life.  Given the uncertainty and disruption in every area of life for individuals living with HIV, anxiety and PTSD is not a surprising facet of life with HIV/AIDS.  Some research exists on anxiety disorders resulting from HIV infection, and coping mechanisms or self-management strategies by those living with HIV.  Phillips and Morrow (1998) emphasized that anxiety is a universal problem for patients with HIV/AIDS because the disease creates uncertainty and disruption in every aspect of patients’ lives.  Although many anxiety-proving factors are similar across groups, it may vary by degree and type for some.  In other words, gay men, women and children may experience anxiety-provoking factors specific to them.  The growing body of research suggests that rates of probable anxiety disorders are roughly two to three times higher in persons with HIV/AIDS as compared to the general population (Kaplan et al., 1997; Perretta et al., 1996).

While prevalence rates of PTSD in HIV/AIDS have ranged from 30% to 64% (Botha, 1996; Kelly et al., 1998; Martinez et al., 2002), studying the nature of this relationship and assessing the impact of the HIV/AIDS diagnosis on mental health has been problematic.  PTSD may be particularly relevant to HIV/AIDS due to the traumatic impact of being infected (Kelly et al., 1998), which consists of various “crisis points” such as learning one’s seropositive status, receiving the diagnosis of AIDS, beginning new treatment, discontinuing treatment, appearance of new symptoms, recurrence and relapse and terminal illness (Flaskerud, 1995).

The future-oriented aspect of HIV disease requires those patients to confront and re-experience the trauma over and over again with each doctor’s visit, blood draw, discussion or disclosure of the condition, changes in drug treatment, anticipated treatment failure, and disease stage.  Mundy and Baum noted that in addition to flashbacks or intrusive thoughts of receiving the initial diagnosis, re-experiencing occurs in thoughts about future-oriented events and may cause significant distress.  (e.g., Will I live to watch my child graduate or get married?  Will I have excruciating pain once the disease takes me?  Will my family be cared for after I am gone?)  Thus, the focus of threat to life is not only based on a past event for medical patients but also on the future.  Of course, the question arises – if these events are future-oriented, is this still PTSD?

The Current Issues

Olley, Zeier, Seedat, and Stein (2005) conducted exploratory research to examine the prevalence of and factors associated with posttraumatic stress disorder in 149 recently diagnosed HIV/AIDS patients in South Africa (mean time since diagnosis = 5.8 months,SD = 4.1).  Multivariate analysis was used to investigate the discriminating factors for a positive history of PTSD.  Independent variables were derived from sociodemographic characteristics, medical status and disability, stressful life events and social support, coping styles and risky sexual behaviors.  Researchers used the MINI International Neuropsychiatric Interview (MINI; Sheehan et al., 1998), a 42-item clinician-administered checklist measuring stressful life events and degree of impact during brief structured diagnostic interviews for major psychiatric disorders.

The findings of the study indicate that 22 patients (14.8%) met criteria for current PTSD.  In eight patients, the index trauma was knowledge of the diagnosis of HIV/AIDS.  The study concluded that those patients with HIV-related PTSD did not differ significantly from other patients with non-HIV related PTSD on demographic or clinical features.  Similar to the findings of Hutton and colleagues (2001), results suggest that “many features of PTSD in HIV/AIDS are similar to those reported in PTSD patients in general” (Olley et. al, 2005). 

The HIV/PTSD+ patients’ mean time since diagnosis (6.2 months, SD = 4.6) suggests that while trauma resulting from the initial HIV diagnosis was assessed, little else regarding the experience of living with HIV was explored.  Given the progressive nature of HIV/AIDS, there are various “crisis points” (Flaskerud, 1995) associated with PTSD symptoms.  Olley et al. concluded that for eight HIV/PTSD+ patients, the HIV diagnosis was the single most traumatic time point, but did not evaluate whether any PTSD symptoms such as intrusions were future oriented.  When determining what is measured as the criterion, observational research and qualitative analyses of intrusive thoughts experienced by patients, in addition to categorizing those experiences as being future or past event oriented, are critical to the overall understanding of medical disorders as a cause of psychological trauma (Mundy & Baum, 2004).  In the sample as a whole, Olley et al. reported that the majority of the participants were asymptomatic, but none were receiving antiretroviral drug treatment for the HIV despite a mean CD4 count of 397.0 (SD = 294.9).  Additionally, there is no discussion about the stage of disease progression for any of the participants at the time of initial diagnosis other than CD4 counts.  Even years later, a diagnosis with a life-threatening disease such as HIV can result in significant PTSD symptomatology (Delahanty, Bogart & Figler, 2004).

The research concedes that the relationship between HIV/AIDS and PTSD remains unclear.  Also, prior traumatic events in the HIV patient population impact the severity of PTSD.  Nonetheless, PTSD patients reported significantly more work impairment and poor coping skills, such as the abuse of substances (Olley et al., 2005).  This research adds to the growing body of knowledge about the HIV population being burdened with significant stressors surrounding their medical condition.

Safren, Gershuny and Hendriksen (2003) examined the frequency and correlates of self-reported symptoms of posttraumatic stress among patients with HIV and self-reported medication adherence problems.  The sample consisted of 59 men and 16 women with HIV infection, the majority being white or African American, who were using the services of a community health center serving primarily lesbian, gay, bisexual, and transgendered individuals.  98% of the men in the sample indicated their sexual orientation (29% heterosexual, 7% bisexual, 64% gay) as did 94% of the women (80% heterosexual, 13% bisexual, 7% lesbian).  Safren and colleagues used the Posttraumatic Diagnostic Scale (PDS) and substituted “the trauma” in the original measure with “being diagnosed with/having HIV.”

Safren and colleagues found that more than half (n = 48/75 = 64%) of the sample met criteria for a diagnosis of PTSD related to the diagnosis of and living with HIV.  Using a series of multiple regression analyses, the researchers found that death anxiety was uniquely associated with total PTSD severity scores, contributing unique variance over and above the other predictor variables of depression and satisfaction with social support.  They also concluded that comprehensive psychosocial screening as a part of the medical care of patients with HIV is needed, especially because many individuals with HIV are disenfranchised in some way before their diagnosis.

The use of self-report instruments, a narrow sample of patients with HIV, and the missing assessment of additional traumatic events in addition to the HIV diagnosis were considered limitations to the study.  Safren and colleagues suggested further research that examines whether patients with HIV reporting PTSD related to the diagnosis have additional traumatic stressors prior the HIV diagnosis, and if diagnosis constitutes a “retraumatizing experience.”

There is growing debate about PTSD being the appropriate model to represent the psychological distress experienced by those diagnosed with medical conditions such as HIV.  Some urge that a new diagnosis may need to be formulated surrounding medical life-threatening illness and disease (Kagee, 2008; Mundy & Baum, 2004).  In a recent article published in the Journal of Health Psychology, Kagee (2008) questioned the appropriateness of a PTSD diagnosis for people living with HIV and AIDS.  He argued that “neither the experience of being HIV positive nor living with AIDS is traumatic in DSM-IV-TR sense” (p.1010).  Patients with HIV have an abundance of future-oriented concerns, but the “anchoring event” for PTSD must be the “receipt of notification” of one’s HIV status in order for there to be a PTSD diagnosis (p.1009).  Kagee argues that the anxiety, fear of physical decline and death because of having HIV does not qualify as a valid PTSD symptom.  Essentially, for there to be a valid PTSD diagnosis, one must suffer recurrent and intrusive recollections, dreams, or physiological reactivity from cues about the informer, and being informed of (e.g., place, time, etc.) the HIV positive status.

In response to Kagee's assertion that medical diagnoses do not fit well with criterion A1, it is important to make clear that the DSM-IV-TR states “a threat to the physical integrityof self or others” (emphasis added) and that there is no reference to time and place.  Not only does the individual experience the ambit of receiving a diagnosis of HIV for which no cure is available, but also, having HIV can be considered a threat to the individual’s physical integrity where fear and helplessness are common reactions to the initial diagnosis and ongoing treatment with aggressive antiretroviral medications.  Kagee (2008) argued that conceptualizing an HIV+ patient’s psychological status in terms of PTSD nosology is likely inaccurate.  However, it is important for the psychologist or future researcher to carefully define the construct being measured.  Advocacy of current conceptual and methodological approaches to PTSD and stressful medical conditions is beneficial to the research community despite differences that may be seen in the medical population and the traditional population being assessed for PTSD (Mundy & Baum, 2004).

Is PTSD an Appropriate Diagnosis for People with HIV?

It is an assumption that the assessment of psychopathology in patients diagnosed with HIV or AIDS is paramount to their overall treatment plan.  However, questions have arisen regarding the appropriateness of PTSD as a mental health diagnosis given the specific nature of medical disease or illness.  Is generalized anxiety disorder more appropriate, or should an anxiety disorder more specific to this population be considered in the publication of the DSM-V.

What important differences exist between “knowledge of the HIV diagnosis” and “initial notification of the HIV diagnosis?”  "Knowledge of" is an ongoing state, yet trauma was defined in this way by the Olley et al. study.  Similarly, trauma was defined as “being diagnosed with HIV” and “having HIV” in the Safren et al. study.  Yet, others would argue that a much narrower definition of the trauma is required.  For example, there must be intrusive recollections of the health care worker who informed the patient about the diagnosis, and the experience of being informed. Yet, do all of these concepts of trauma surrounding HIV have similar impacts on people with HIV?

Relatively little is known about the course of symptoms over time following trauma exposure (Orcutt, Erickson & Wolfe, 2005; Perkonigg, Pfister, Stein, Hofler, Lieb, Maercker, & Wittchen, 2005).  There is general agreement that a growing number of studies are demonstrating HIV diagnosis as a traumatic stressor often leading to PTSD.  Also, people living with HIV tend to present with a significant number of traumatic events prior to HIV diagnosis.  Does this then require an alteration in the approach to psychological and possibly medical treatment?  Indeed, not all persons experiencing traumatic medical events get PTSD.  However, help with effective coping tools and with the psychological distress that ensues following an HIV or AIDS diagnosis is instrumental.  Medical and mental health professionals must recognize and intervene as necessary to help patients cope with stigma surrounding HIV disease and the disenfranchisement that tends to plague people with HIV.  Better HIV treatment adherence and outcomes correlate with primary care physicians screening patients for PTSD, anxiety and depression.  (Olley et al., 2005; Safren et al., 2003; Phillips & Morrow, 1998; Delahanty, Bogart & Figler, 2004).  Yet, the literature suggests that medical patients are rarely screened routinely for PTSD (Tedstone & Tarrier, 2003; Olley et al.).

Conclusions

One must wonder whether it is important at all to determine whether the PTSD symptoms arise from the HIV diagnosis, or if simply knowing that a patient with HIV also suffers with PTSD, regardless of the traumatic event(s), is enough so long as some treatment is sought.  It seems that non-HIV-related PTSD has a similar effect on biology and psychosocial functioning of the individual as does HIV-related PTSD.  However, for patients without prior history of PTSD or trauma, it is important to know whether a diagnosis of HIV can cause PTSD.  Having the best model for exploring the effects of a life-threatening diagnosis or terminal illness is paramount to moving forward with best treatment practices.

Based on a review of all of the research articles discussed, an accurate definition of the construct “trauma” is required to correctly determine the impact of HIV on mental health aside from other traumatic events.  Whether the PTSD model can accommodate the differences that exist with medical traumas (e.g., future-oriented events) is a worthy topic for further exploration.  It is true that there is the single anchoring event, as referred to by some researchers.  However, these future-oriented events can retraumatize some patients, returning them to the experience of being initially diagnosed with HIV.  How should those individuals be best treated in their mental health care to ensure successful medical treatment?  How does an individual’s appraisal of stress and coping mechanisms hinder or complement HIV medical treatment?  Further research could explore these issues, as well as whether this population differs significantly from patients with prior traumas, thus warranting a different mental health treatment approach.

Some gaps in the research are noted.  There is a tremendous need for further research into this area with the Latino and Asian population.  Also, given the fact that women have unique stressors and suffer from PTSD at a disproportionately higher rate, more research on women with HIV is needed.  Other suggestions for research include outcome studies of medical settings serving individuals being diagnosed with and treated for HIV disease.  Research should assess the differences in a patient’s overall treatment success in medical settings where ongoing mental health treatment is integrated compared to those medical settings without a mental health component.

References

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• Delahanty, D. L., Bogart, L. M., & Figler, J. L. (2004). Posttraumatic stress disorder symptoms, salivary cortisol, medication adherence, and CD4 levels in HIV-positive individuals. AIDS Care, 16, 247-260.
• Flaskerud, J. H. (1995). Psychosocial and psychiatric aspects. In J. H. Flaskerud & P. J. Ungvarski (Eds.), HIV/AIDS: A guide to nursing care (3rd ed.). Philadelphia, PA: Saunders.
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