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Clinical Case ConferenceFull Access

Treatment of a 50-Year-Old African American Woman Whose Chronic Posttraumatic Stress Disorder Went Undiagnosed for Over 20 Years

We present the case of a woman who met DSM-IV criteria for posttraumatic stress disorder (PTSD) and was treated at a mental health clinic serving low-income African Americans. The diagnosis of PTSD was first made 22 years after the initial presentation, and only then did she reveal her experience of having been held hostage, bound, beaten, and repeatedly raped, narrowly escaping with her life. Nearly 30 years after its occurrence, she recounted this incident with intense affect, as though it had just happened. She subsequently underwent a focused PTSD treatment and responded with marked improvement in symptoms.

Intervention researchers have developed and tested targeted treatments such as this over the past few decades. However, until recently, investigators have paid little attention to dissemination of new methods to clinics or facilities that serve minority poor. Treating clinicians are eager to learn these strategies, and this patient benefited greatly from just such methods. Many patients at clinics such as ours have been exposed to multiple traumatic experiences, exacerbated by experiences of racism. This means some adjustments in research treatments may be needed to accommodate their unique requirements. Still, for the patient presented here, PTSD treatment could be offered in a format relatively unchanged from that used in research studies. Years of high-quality supportive treatment for this patient had been helpful but did not ameliorate the symptoms of PTSD. The diagnosis was made only after the patient underwent a structured diagnostic interview and a targeted treatment was provided under the auspices of a research project. The patient discussed has read this manuscript and has provided written informed consent for the publication of the material presented.

Case Presentation

Ms. A first came in for treatment in 1975. She complained of anxiety, which included somatic symptoms, phobias, and obsessive concerns about orderliness and “doing the right thing.” She had social anxiety, which resulted in difficulties in asking someone for a favor, meeting new people, or going to a new place. She also described depression, irritability, and feelings that people were against her. Sometimes she thought that she could see or hear things others could not. The initial diagnosis was anxiety reaction. She was noted to have nonimperative auditory hallucinations, which were considered secondary to dissociation. Perphenazine was prescribed, and she was referred for group therapy.

She returned to the clinic twice before disappearing for 9 years. On each occasion she was agitated, pleading for help with her abusive ex-boyfriend, who tried to force his way into her apartment and assaulted her on the street. Fearful that he might break in, she was not sleeping well. She said police were unresponsive. She described auditory hallucinations, which implored her to leave home without her children to get away from it all, and feelings of depersonalization. She was worried about being a good mother and was concerned that being nervous and scared made her yell at her children with little justification. She received support and encouragement to attend group therapy.

Ms. A was next seen in 1984, when she came in with symptoms of panic and extensive agoraphobic avoidance. She described her panic attack: “It hits me in my face first. I get real shaky, can’t stay in the house, need to keep moving, run.” These attacks occurred unexpectedly, while in her bedroom watching television, for example, or while braiding her daughter’s hair. She had become fearful of leaving her house and was unable to ride on buses. She endorsed numerous other anxiety and depressive symptoms. She had clear-cut obsessions and compulsions, including lengthy cleaning rituals, the need to repeatedly check locks, and compulsive orderliness.

Patient History

Ms. A reported multiple long-standing financial, educational, and family difficulties, including disciplinary and social problems in school. Her father was an alcoholic, and her parents separated on several occasions while she was growing up. A favorite relative died from complications of an abortion. She recalled possibly being treated with medication for “her nerves” at age 12.

Ms. A appeared to have a learning disability. As treatment progressed, the therapist became more aware of Ms. A’s limited reading ability. She was nearly illiterate and was very discouraged and ashamed of this. She had dropped out of high school after 10th grade because she became pregnant; she then worked intermittently in bars and fast-food restaurants. She subsequently obtained her General Equivalency Diploma.

At this second evaluation, Ms. A reported having been raped as a teenager while working in a bar and again 8 years later by an ex-boyfriend. She did not describe these incidents in detail. She attributed her anxiety and phobic fears to her living situation, describing her apartment building as one where “people steal light bulbs from the hall, leaving it in darkness. Junkies shoot up in the halls, and car thieves bring stolen cars and burn them in the court.”

Medical history included borderline diabetes and chronic back, bladder, and kidney problems. She had been hospitalized repeatedly for urinary tract infections that required intravenous antibiotics.

At the time of her mental status examination in 1984, Ms. A was a meticulously groomed, attractive woman. She was tearful and asked that the door not be closed. She expressed concern with phobic symptoms, was articulate, and appeared to be a good historian. Her speech rate and thought pattern were normal. She was alert and well oriented, seemed of average intelligence, and had fair insight. There was no suicidal or homicidal ideation or any psychotic symptoms.

Treatment Plan and Subsequent Course

The clinical diagnosis was panic disorder with agoraphobia; major depressive disorder was ruled out as a diagnosis. Criteria for obsessive-compulsive disorder (OCD) were clearly present although not recorded in the chart. The possibility of parenting problems was noted. Initial treatment included imipramine, 25 mg/day, with a plan for gradual increases to a therapeutic dose. Weekly therapy sessions were instituted that combined behavioral treatment and supportive psychotherapy.

Ms. A’s clinic attendance was sporadic for the next 12 years, with sessions held approximately monthly. She did not tolerate imipramine, so alprazolam, 0.25 mg b.i.d., was prescribed, which she initially resisted. Her therapist convinced her to take it when her panic attacks worsened, but still she did so infrequently and only when she had a panic episode. She remained in treatment with the first author while seeing different physicians over the years. Imipramine, desipramine, fluoxetine, and paroxetine were sequentially prescribed, but she developed intolerable side effects, including nausea, diarrhea, anergia, stupor, loss of interest, and increased anxiety, even though each was started at a low dose.

For 14 years, her anxiety waxed and waned, improving slightly overall, and life difficulties intermittently surfaced. The therapist provided an empathic, problem-solving course of psychotherapy that used behavioral interventions for anxiety, phobic, and OCD symptoms. In addition, the clinic offered an array of nontraditional programming to address issues such as literacy, spirituality, women’s issues, racial concerns, therapeutic exercise, and parenting. There were on-site laundry and shower facilities and a kitchen where breakfast was often cooked and served to homeless patients. Patients worked as peer volunteers, assisting others in coping with practical problems. Staff and patients participated in social events such as day trips, an annual picnic, holiday parties, sobriety celebrations, and dinners. Ms. A participated in many of these programs. At two periods she worked in the clinic as a volunteer.

Ms. A sought treatment primarily when in crisis. Over the years, she had serious housing, financial, and parenting difficulties. Her children had behavioral problems. One became a school truant, and another was physically and verbally abusive and was eventually incarcerated for a minor crime. One child became addicted to substances and was involved in a serious crime.

Ms. A’s own mother was a major support until her death in 1995. Ms. A then grew closer to her father and became his primary benefactor. She had several supportive boyfriends, including one who wished to marry her.

Targeting OCD

In 1995, Ms. A’s therapist, following participation in a behavior therapy workshop organized by the Obsessive-Compulsive Foundation, introduced a regimen of exposure and response prevention for treatment of Ms. A’s OCD symptoms. Efficacy of this standard behavioral approach for OCD has been well documented (1). The therapist assisted Ms. A in developing a hierarchy for exposures to objects and activities that triggered anxiety, obsessional thoughts, and an urge to engage in rituals. She was asked to confront these stimuli and resist her urge to engage in rituals. Exposure included touching dirty things without washing, locking the doors without checking, and leaving drawers open with the contents in disarray. Treatment attendance was good during this period, and Ms. A completed most of her assignments.

At times, the therapist deferred work on OCD symptoms in order to help Ms. A assess and manage a life problem. For example, at the anniversary of her mother’s death, the therapist interrupted behavior therapy for several sessions to discuss Ms. A’s feelings about the death. On another occasion, the therapist provided support when Ms. A was diagnosed with hypothyroidism. Exposure therapy for treatment of phobic and compulsive symptoms resumed after such interruptions. After 1 year, the frequency and intensity of OCD symptoms were reduced, although some symptoms were still present. Clinic attendance again became sporadic. Ms. A was expecting her second grandchild. She was pleased about this and enjoyed her role as grandmother.

Ms. A came in next when there was severe conflict in the family. Her adolescent daughter had given birth to a premature infant. Family therapy succeeded in reducing the tension. The daughter returned to school with Ms. A caring for the infant in a satisfactory arrangement.

Reevaluation and PTSD-Focused Treatment Course

In 1997, a research project documented that 94% of patients seen at the clinic in which Ms. A was being treated had been exposed to severe violence and that 42% of those exposed met DSM-IV criteria for PTSD (2). Another researcher began to train therapists in treatment of PTSD. Ms. A was offered this treatment. Participants were reimbursed $10 to complete a battery of assessments at each session. Ms. A completed the 12-session PTSD protocol in just over 3 months, her best record of attendance in 22 years of treatment.

Ms. A met criteria for PTSD. Now age 51, Ms. A had experienced many years of debilitating psychiatric symptoms. She was receiving Social Security Disability payments. Symptoms had clearly worsened after her traumatic experience, yet only upon undergoing a structured diagnostic interview did she discuss this ordeal. Preexisting mild agoraphobia, fear of crowds, fear of being in a closed room, fear of riding in elevators, and inability to ride a bus had been markedly exacerbated following the rape. OCD symptoms such as washing rituals and concern about order and cleanliness had appeared at this time. She was compelled to repeatedly check locks, with concerns about both being locked in and about intruders. She began to have intermittent depressive symptoms and chronic sleep disturbance.

Following the trauma, she had become fearful of being alone, especially at night. She was afraid when the door was locked, as this was reminiscent of being kidnapped and bound, unable to escape, and uneasy when it was unlocked, fearing an intruder may come in. She had an intense disdain of being touched, which had been quite problematic in her relationships with men. She recalled trying to wash herself clean after her escape, and afterward she developed a pattern of bathing and dressing that involved washing each part of her body several times. In addition to the checking and cleaning rituals, she felt the need to dress in a ritualistic fashion, putting on clothing in a certain sequence and, if she deviated from this, she would have to take the clothing off and start over. Ms. A managed to function using various methods of compensating for these symptoms, many of which persisted despite courses of supportive psychotherapy, exposure therapy, and medication.

A PTSD treatment course developed and tested by Foa (3) was used to treat Ms. A. The therapy included in-session reexperiencing exposure to the traumatic event and between-session in vivo exposure to feared situations. Reexperiencing exposure entailed asking Ms. A to close her eyes and tell the story of the traumatic event as though it were happening in the present. As the story was recounted, the therapist asked Ms. A to rate the intensity of her distress on a scale from 0 to 100, both at points when emotion appeared to increase and at least every 5 minutes. These ratings, called subjective units of distress, were used to identify “hot spots” (parts of the story associated with highest levels of emotion). The sessions were recorded, and Ms. A was given each reexperiencing tape and was asked to listen to it daily.

In the first session, Ms. A provided a description of her ordeal. Although this was not done as a reexperiencing exercise, she was intensely emotional as she related the story of having been captured, tied up, raped, and beaten. She easily reexperienced feelings as she related scenes of physical brutality, flinching as if she could feel pain. Ms. A recalled that during the ordeal her one preoccupying idea was that she must escape, and her thoughts were frequently occupied with planning how she might succeed.

At the second session, the treatment rationale and review of common reactions to assault were provided, an analysis of her avoidance was conducted, and an in vivo exposure hierarchy was developed. Ms. A reported that it had been very hard for her to tell the story. She had no difficulty rating items on her hierarchy and making plans for in vivo exposure. In the third session, still highly emotional, she added details of the ordeal during her first reexperiencing exposure. Although the procedure prescribed repeating this account, Ms. A was reluctant, and the therapist did not insist. Over the next week, Ms. A practiced mindful breathing but did not listen to the session tape. She did undertake planned in vivo exposure exercises that included going to the store alone and sitting in a room with the door closed for nearly 15 minutes. She did not ride the bus.

At the fourth session, Ms. A described the assault during the reexperiencing exercise. She provided details and experienced intense affect. This time she attempted to repeat the story but could not complete it. At the fifth session, Ms. A again had not listened to the reexperiencing tape, although she had practiced breathing exercises. She rode the bus, sat behind a closed door, and went to the store. During this session, Ms. A succeeded in relating the story of the trauma twice. She reported that she felt all right immediately after an exposure session but that 2 days later “it hit her” and she felt extremely anxious. She canceled the next session, and, when seen again, had not listened to the tape, although as before, she had done in vivo work. The therapist encouraged her to try to listen to the tape at least once daily. Ms. A recounted the story of the 3-day kidnapping twice, and, in addition, retold “hot spots,” periods in the story when emotion was highest. Two additional items were added to her in vivo homework.

At the next session, although she been unusually busy with household chores, she had done more homework than in earlier sessions. She did imaginal exposure one time in its entirety, with three repetitions of a “hot spot.” She started to tell the story a second time but was unable to complete this. She was more tearful than usual. At the next session, the therapist decided to take a break from the reexperiencing exposures. Ms. A talked about life changes and some anxiety about them. She talked at length about her experience of being home alone the previous night. She was fearful of being locked in and unable to get out.

At the beginning of the next session, Ms. A seemed less distressed. She told the story of the trauma twice and repeated “hot spots.” She had listened to portions of the imaginal tapes several times and had done several assignments on her in vivo hierarchy. She reported that she was improving. At the subsequent session she had been able to lock doors without checking and was noticeably less distressed during imaginal exposure. She related the entire episode twice and repeated “hot spots.”

The 12th session concluded the PTSD protocol. Ms. A reported that she felt less frightened at the thought of encountering the perpetrator, a man who had remained in her community. During the prior week she had not listened to the tape. However, she had, as usual, done in vivo exposure exercises. During imaginal exposure in this session, she included more explicit sexual detail. Ms. A had clearly made good progress and agreed to continue the treatment.

Ms. A’s common-law husband attended the next session at her request. The goal was to inform him of the nature and consequences of her traumatic experience. Ms. A had tried to explain this, but he had dismissed it. The therapist revealed to him some of the details of the trauma. Although he appeared guarded, he said that he loved her and hoped to marry her.

Ensuing treatment included a mix of assistance with family problems and continuing imaginal exposures. Ms. A described the rape, by far the most traumatic aspect of the experience. Following this, she began to ride the bus with little hesitancy. She stayed in her house alone with the door locked, without checking or unlocking it. She paid more attention to her appearance, buying new clothing for herself rather than spending only on children and grandchildren. In-session imaginal exposures continued, still sometimes halting and tearful. Ms. A remained motivated to engage in this work, understanding the need to focus on this difficult material.

Ms. A continued to relate the sexual assaults that occurred during her 3-day captivity. As the prolonged exposure progressed, so did Ms. A’s ability to function. She became comfortable shopping and riding the bus. Still, some sessions, originally planned for exposure, were devoted instead to one of the many domestic issues that plagued this patient. Session attendance again dwindled.

After her partner purchased tickets for an out-of-town trip, Ms. A reappeared at our clinic because she was fearful of traveling and staying in a hotel. Weekly sessions resumed for 6 weeks. Each included an imaginal reexperiencing exposure, along with some discussion of domestic problems and planning for the trip. Ms. A accomplished the 2-night trip and experienced no significant symptoms. She considered this a major achievement. Her improvement was manifest in other areas as well. For example, she had ridden in a van to a picnic, an activity that “would have been all but impossible a year ago.” Clinic staff, who had known her for many years, began to spontaneously comment on Ms. A’s obvious and dramatic improvement.

Discussion

Review of this patient’s history and course demonstrates several important points. First, it is important to attend to exposure to violence and to assess for a possible diagnosis of PTSD. Second, exposure-based PTSD treatment can be rapidly learned and used successfully by experienced clinicians in community clinics, even for patients faced with almost continuous life stress, a history of sporadic clinic attendance, and a complicated multifaceted symptom profile. Third, treatment for PTSD can be effective even decades after the trauma.

PTSD was not included in DSM-II, the diagnostic system in use when this patient first came in for treatment. Diagnostic criteria for this condition appeared for the first time in DSM-III and were derived from symptoms reported by war veterans and burn victims. Since then, there has been increasing recognition of PTSD and of risk factors, including preexisting psychiatric illness and residing in violence-ridden, inner-city low-income neighborhoods. Still, as seen in this case, clinicians rarely make this diagnosis. Surveys indicate that an American woman has a 25% likelihood of being raped in her lifetime, and studies have reported that nearly one-third of rape victims meet lifetime DSM-III-R PTSD criteria and 12% meet current criteria (4, 5). Poor women, like the one discussed here, with multiple exposures to trauma are particularly vulnerable.

Treatment researchers have investigated various types of psychotherapy for PTSD, including exposure therapy, cognitive therapy and anxiety management, education and supportive counseling, psychodynamic psychotherapy, eye movement desensitization reprocessing, and hypnosis. In particular, studies have documented successful treatment of rape-related PTSD with reexperiencing and exposure-based interventions (6). Unlike many proven efficacious treatments, this one has been extensively tested in patients similar to the one presented here and has empirical support across different trauma populations (3, 6, 7). Of note, throughout her ordeal the patient described here was engaged in intense mental planning, and it was through these efforts that she eventually managed to escape her torturer. Individuals who engage in mental planning versus “mental defeat” during the rape experience may have better outcomes with exposure therapy (8). For individuals experiencing mental defeat, exposure therapy may lead to replaying and reinforcing these negative thoughts. In addition, reexperiencing does not necessarily address postrape beliefs about guilt or shame, and this treatment may work less well when these negative interpretations are prominent.

Pharmacotherapy with selective serotonin reuptake inhibitors (SSRIs), monoamine oxidase inhibitors, tricyclic antidepressants, mood stabilizers, antianxiety medications, and anticonvulsants has also been identified as a possible treatment for PTSD. In particular, SSRIs have documented efficacy in controlled trials (9, 10). This patient was unable to tolerate either fluoxetine or paroxetine, even when prescribed in low doses. It is possible that drug metabolism differs in African Americans. Polymorphism of the cytochrome P450 2D6 liver enzyme, which is needed for metabolism of many psychotropic drugs, has been reported in the population at large. A bimodal distribution exists, and 5%–10% of Caucasians with markedly deficient enzyme activity are classified as having poor metabolism. Among Asians the frequency of poor metabolizers is lower, but there is a slower average metabolic rate, leading to recommendations that pharmacokinetics of new drugs be studied separately in Asians. Less is known about this enzyme in African Americans, but a pilot study of 34 young healthy African American individuals (11) showed results similar to Asians: few subjects with poor metabolism but about one-third with moderately reduced metabolism. Similar results were seen in African American children. More research is needed in this area. In addition, African Americans may underuse antidepressant medication. This may occur because physicians prescribe less or patients take less. There may be different attitudes about medication or differences in efficacy or side effects. Such differences need to be documented and understood.

In summary, in spite of excellent supportive care by an experienced therapist in a university-affiliated, well-functioning, and innovative community clinic, PTSD went undiagnosed and untreated for over 20 years. When the diagnosis was finally made, we were impressed by the intensity and vividness of the symptoms and by how well these symptoms responded to targeted treatment decades after the trauma occurred. PTSD is common in community clinics such as this one. We hope the presentation of this case will increase awareness of PTSD and encourage clinicians to learn more about efficacious treatments. This case also underscores the need for more information about pharmaocokinetics and pharmacodynamics in different ethnic groups. We urge clinicians and researchers to work together to continue improving the care of low-income minority patients.

Received Aug. 22, 2000; revision received Jan. 8, 2001; accepted Jan. 25, 2001. From the Department of Psychiatry, University of Pittsburgh, Western Psychiatric Institute and Clinic. Address reprint requests to Dr. Shear, Western Psychiatric Institute and Clinic, 3811 O’Hara St., Pittsburgh, PA 15213; (e-mail). Supported in part by NIMH grants MH-53817 and MH-52247. The authors thank Jenna Williams, Krissa Smith, Seth Duncan, and Sophia Masters for assistance in preparing this report and Ulrika Feske for supervision of the PTSD treatment.

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