Improving patient-centered communication of the borderline personality disorder diagnosis

Abstract

Background: Borderline personality disorder (BPD) has historically been difficult to diagnose, and laden with stigma, leading to a variety of clinical responses to patients who present with symptoms.

Aims: (1) To understand how clinicians communicate the diagnosis of BPD with patients. (2) To compare these practices with patient communication preferences. (3) To use patient preferences to evaluate clinician practices.

Methods: Semi-structured interviews with mental health care providers and experts (n = 32) were compared with patients (n = 10) and primary patient-written accounts (n = 22). Grounded theory was used to explore causal pathways between clinical practice and patient responses.

Results: The majority of clinicians sampled did not actively share the BPD diagnosis with their patients, even when they felt it was the most appropriate diagnosis. The majority of patients wanted to be told that they had the disorder, as well as have their providers discuss the stigma they would face. Patients who later discovered that their diagnosis had been withheld consistently left treatment.

Conclusions: Clinicians believed that by not using the BPD label they were acknowledging or sidestepping the stigma of the condition. However, from the perspective of patients, open communication was essential for maintaining a therapeutic relationship.

• Borderline personality disorder
• clinician-patient communication
• diagnosis
• patient-centered

Declaration of interest

This article was previously presented at the 19th Annual National Service Research Award Trainees Conference. Baltimore, MD, Jun 22, 2013, in conjunction with Academy Health and the Second International Conference on Borderline Personality Disorder and Allied Disorders, where it received the first place poster award in Amsterdam, the Netherlands, Sept 27–29, 2012.

This research was partially sponsored by the Holtz Center for Science and Technology Studies at the University of Wisconsin-Madison and a National Research Service Award Post-Doctoral Traineeship from the Agency for Health Care Research and Quality sponsored by the Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Grant No. 5T32 HS000032 and a National Research Service Award Post-doctoral Traineeship from the National Center for Complementary and Alternative Medicine, at the National Institutes of Health, sponsored by the Department of Family Medicine at the University of Wisconsin-Madison, Grant No. T32 AT006956 and was partially written while in residence at The Christine Center. The authors declare no conflicts of interest.

Notes

¹ Patients were given the opportunity to refer others to the study. However, all participants stated they did not have anyone in their social network who had also been diagnosed with BPD. Therefore, snowball sampling was not possible with this group.

² Very few percentages are included in this article intentionally. Based on grounded theory, this sample is not intended to be generalizable, and furthermore, purposive sampling removes the meaningfulness of relative percentages. As sampling continues, the researcher chooses new data based on its likelihood to illuminate themes that are not well represented in the current data. In this way, we gain more sufficient data on less common themes. At the same time, we collect less data on common themes because there is no reason to continue to collect stories nearly identical to those already in the dataset once saturation has been reached. This percentage was included because despite efforts to illuminate all themes, only three providers actively, and always, told patients of their diagnosis, suggesting that this is likely to be reflective of the broader field. However, this percentage should not be understood as an indication of absolute prevalence, but rather as an important piece of data within the sample.