Long-Term Prognosis: Remission and Recovery Defined

In a video made by the New York Presbyterian Hospital on BPD, “Back from the Edge,” we find the following:

It is a good diagnosis prognosis. That is to say, people get better. People recover. They manage their lives in effective ways. They have children. They have careers. (Perry Hoffman, 44 min)

Sustained remission of psychopathology occurs. (John Gunderson, 44 min)

Sensitivity will probably always be there, but you can build in ability to regulate. (Marsha Linehan, 44 min)

Most people with this illness will recover. (Fenton, NIMH, 46 min)

You can watch the video at https://www.youtube.com/watch?v=967Ckat7f98&list=PLuQy-unvha0DEGoZWjmJE0ePeWc6dw9xk&index=2&t=0s

Mary C. Zanarini’s Landmark Longitudinal Study of BPD Sufferers:

Source: Zanarini McLean Webinar–BPD Patient and Family Education Initiative, “The Long-Term Course of Borderline Personality Disorder,” Originally aired Wednesday, February 3, 2016, accessed at https://www.mcleanhospital.org/borderline-personality-disorder-patient-and-family-education-initiative

We should note that a book has been recently published based on the study:

Mary C. Zanarini. In the Fullness of Time: Recovery from Borderline Personality Disorder (Oxford University Press, 2019).

Zanarini’s quite unequivocal and optimistic conclusion is that “It [BPD] is quite simply not a chronic condition.”  Having said that, let’s look at her criteria for defining “getting better” and her data.

Zanarini discusses two types of “getting better”: remission of the acute symptoms (suicidality, self-harm, stormy relationships, and so forth) and even some temperamental ones (chronic dysphoria manifesting in feelings of anger and loneliness/emptiness, a fragile sense of self, and interpersonal abandonment related-issues) and recovery of psychosocial functioning (having intimate relationships, studying or getting and holding a job).

REMISSION:

Note that Zanarini defines remission as “not meeting criteria for DSM III-R and DIB-R.”

Most of us are familiar with the list of symptoms/traits in the DSM III-R. Failure to demonstrate possession of a minimal number of traits means a BPD sufferer is in remission.

The DIB-R (Revised Diagnostic Interview for Borderlines) developed by John Gunderson and revised by Mary Zanarini differentiates BPD from other PDs. Four categories of BPD traits have to be present at the same time to receive a BPD diagnosis: Dysphoric Affective, Disturbed Cognition, Impulsive Behaviors, Troubled Relationships. This diagnostic tool leads to a smaller but very homogeneous group of identified BPD patients (in contrast to the numerous traits in DSM III-R). In short, you had to be unhappy, have troubled thoughts, be impulsive and have relationship troubles to be diagnosed as BPD by the DIB-R.

FINDINGS

99% of the subjects were in remission after two years.

95% were in remission after four years.

90% were in remission after six years.

78% were in remission after eight years.

Percent of recurrence after x years of remission: 2 years – 36%, 4 – 25%, 6 – 19%, 8 – 10%. Clearly, the longer the period of remission, the less likely the recurrence.

RECOVERY:

Recovery is defined as a having a concurrent remission from BPD and good social and vocational functioning

  • This psychosocial functioning is defined as having at least one emotionally sustaining relationship with a friend or romantic partner (not a biological relative) and
  • A good vocational performance, a sustained vocational history and full-time vocational engagement

FINDINGS

Recovery is more difficult to attain than symptomatic remission, particularly a sustained recovery of 4-8 years:

  • 60% – achieve 2 years
  • 54%  – achieve 4 years
  • 44%  – achieve 6 years
  • 40%  – achieve 8 years

Loss of Recovery (=the longer you have been in recovery the more likely it is to stick)

After 2 years of recovery – 44%

After 4 years of recovery – 32%

After 6 years of recovery – 26%

After 8 years of recovery – 20%

Why this difficulty achieving and maintaining recovery?

  • Inability to go to work or school consistently or competently
  • On a full-time basis
  • 47% are on disability or not working at the 16-year follow up

Treatment of Subjects in Study

Mostly treated in community, 70% of BPD patients in individual therapy and took standard meds during eight 2-year-periods of study (almost none had evidence-based treatment); rate of psychiatric hospitalization declined from 100% at baseline to 24% 16 years later

Rehabilitation Model

Some may need this supportive model because they have trouble working consistently and competently, managing everyday tasks, often back away from anxiety producing situations, especially in the social realm, and struggle with sleep and pain management.

Q & A: (39-45 minutes)

Q: Did Zanarini observe better outcomes with certain treatments?

A: I cannot access the effect of treatment since it is a naturalistic study. My personal opinion is that the patients who did best had therapists dedicated to keeping them functioning as best as they can and improving that function, not particularly focused on their miserable pasts, on their history and adversity. Instead, they threw all their psychotherapeutic weight behind keeping their patients employed, trying to get them to start the day. Those therapists, just by my observation, tend to do better.

Q: Which treatments correlate with improved psychosocial functioning. That is to say, which therapy encourages and supports the sufferer and focuses on functioning, instead of on their miserable past. How can a family member identify this kind of therapist?

A: If a therapist wants to engage in intensive therapy, work through all the past in great detail and understand every little thing this is a red flag. Is therapy a lifestyle or an adjunct to life? The therapist meets patient once a week, so they need to help them be adaptive. Best to help patient move forward, have great confidence in their ability to succeed and display this, have a fighting spirit, to help them get the life they originally planned to have for themselves. (Not focus on victimhood or allow the sufferer to exude a pervading sense that she can’t be possibly expected to do anything—get up in the morning/clean her room/study/go to work—with the therapist seeming to believe in that and colluding with her sense of hardship and the impossibility of succeeding) Editor: That is not to say, that the therapist should invalidate the sufferer’s pain and hardship, but the therapist must also be vehemently optimistic about the sufferer’s capabilities and throw her weight behind the sufferer getting the life she originally planned.

Limitations of the Study:

Zarini notes that “this study has a number of limitations. The first is that all subjects were initially inpatients. It may well be that borderline patients who have never been hospitalized are less severely ill symptomatically and less impaired psychosocially and thus, more likely to remit more rapidly and attain a good global outcome over time. The second is that the majority of those in both study groups were in non-intensive outpatient treatment over time and thus, the results may not generalize to untreated subjects.”

We should also note certain exclusionary criteria that informed the study: “all subjects were initially inpatients at McLean Hospital in Belmont, Massachusetts. Each patient was first screened to determine that he or she: 1) was between the ages of 18–35; 2) had a known or estimated IQ of 71 or higher; 3) had no history or current symptoms of schizophrenia, schizoaffective disorder, bipolar I disorder, or an organic condition that could cause psychiatric symptoms; and 4) was fluent in English.” Most importantly, those with “a history or current symptoms of schizophrenia, schizoaffective disorder, or bipolar I disorder” were excluded, though a comorbidity with other Axis I or II disorders does not seem to have functioned as an exclusionary criteria. (See Mary C. Zanarani et al, “Methodological considerations for treatment trials for persons with borderline personality disorder” Ann Clin Psychiatry. 2010 May; 22(2): 75–83, where a panel of the foremost BPD researchers discuss exclusionary criteria, such as severity, comorbidity, and psychotropic medication, in depth.)

Mary C. Zanarini, Ed.D., Frances R. Frankenburg, M.D., D. Bradford Reich, M.D., and Garrett Fitzmaurice, Sc.D. “Attainment and Stability of Sustained Symptomatic Remission and Recovery among Borderline Patients and Axis II Comparison Subjects: A 16-year Prospective Follow-up Study.” Am J Psychiatry. 2012 May; 169(5): 476–483. doi: 10.1176/appi.ajp.2011.11101550

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Hebrew Reference:

Dr. Ilana Kramer argues that the data shows that treatment can be effective as long as three conditions are met: (1) the therapist is an expert in BPD who understands the dynamics, the clinical aspects, and the phenomenology, (2) the treatment can be eclectic if given by an expert in the disorder who is running a structured protocol, with patience and warmth and the belief in change against all odds (3) countertransference is taken care of, a team is available to support the therapist. (BPD: The Therapeutic Challenge (Ilana Kramer  https://www.youtube.com/watch?v=0hiuI0887j0  at 21:25 min)