Les sujets ayant un trouble de la personnalité borderline sont peu informés sur leur trouble, malgré les recommandations en ce sens. Nous n’avons pas retrouvé de document d’information écrit sur le trouble élaboré en collaboration avec des patients, comme le préconise la Haute Autorité de santé. L’objectif de ce travail a été d’élaborer et d’évaluer un document d’information pour les personnes ayant un trouble de la personnalité borderline, en impliquant des patients.

Nous avons organisé un groupe de travail puis des entretiens individuels avec des patients. L’évaluation a été quantitative et qualitative (analyse thématique).

Une version initiale du document a été élaborée à partir de différentes sources récentes. Le groupe de travail a conduit à 19 modifications du document, dont l’ajout d’une partie « d’autres pistes pour aller mieux » et l’ajout de la notion d’hypersensibilité. Les entretiens individuels ont conduit à 23 modifications, dont la suppression des pourcentages sur l’évolution du trouble (devant leur caractère pessimiste), le développement du critère sur l’instabilité affective (considéré comme central), le développement de la partie « autres pistes pour aller mieux » (avec des conseils de gestion de l’anxiété). Les patients ont évalué le document facile à comprendre, intéressant, et sa lecture a été bien vécue. En revanche, la présentation a été jugée insuffisamment attractive et a été améliorée.

Ce document a pour objectif d’être utilisé en complément de l’information orale, qui reste indispensable. Il serait intéressant d’évaluer l’impact de l’information orale et écrite sur l’alliance thérapeutique.

Borderline personality disorder affects 10% of ambulatory patients and 15 to 25% of patients hospitalized in psychiatry. Therapeutic recommendations include informing patients about the characteristics of the disorder, its evolution and the effectiveness of psychotherapies. This information can promote self-understanding, therapeutic alliance and the involvement of the patient in his/her care. Despite these recommendations, people with borderline personality disorder are generally not well-informed about their disorder in France. We find a few written document delivering information about the disorder destined for patients in French, but we did not find it with a detailed elaboration methodology and none developed with patient involvement. The objective of this work was to develop and to evaluate, an information leaflet for patients with Borderline Personality Disorder, involving patients in these two stages.

We developed and evaluated an information document with a step-by-step approach, similar to that described in the methodological guide of the French High Authority for Health (Haute Autorité de santé). We first designed an initial version, which we then modified with a working group with 4 patients and 2 health professionals. Finally, we evaluated and modified this document through 6 individual interviews with patients. Patients were recruited through psychiatrists and psychologists from the department of Toulouse, who were contacted by email. Concerning the analysis of the data, the answers to the closed questions were quantified. The answers to the open-ended questions were analyzed qualitatively through a thematic analysis, in order to organize in a structured and synthetic way all the subjects covered by the patients during the various interviews.

The working group led to 19 changes to the original version of the document, including the addition of “other ways to feel better”, the addition of the concepts of hypersensitivity and intense emotional crisis, and rewording to simplify the document. Individual interviews led to 23 changes including: the removal of percentages on the evolution of the disorder (in view of their pessimistic nature), the development of the criterion on affective instability (considered as central), the development of the “other ways to get better” section (with a crisis management board through a soothing activity); several rephrasings, reorganizations or deletions. Patients evaluated the document, they judged it as easy to understand, interesting and its reading was well experienced. On the other hand, the presentation was judged to be insufficiently attractive and is being improved by graphists. We can emphasize the particular attention shown by the patients to the document being optimistic.

We have elaborated with patients an informative document. This document is to be used as a support to oral information, in order to reinforce the patient's knowledge. It cannot replace the oral information that remains essential. Concerning the limitations of this work, it might have been interesting to involve other health professionals in the development of the initial version of the document, such as experts on the disorder. It would be interesting to evaluate the impact of the information approach on the therapeutic alliance or the involvement of patients in care, as well as the impact of the written document on these parameters.