Prevention and early intervention for borderline personality disorder: a novel public health priority

There is now a broad evidence‐based consensus that borderline personality disorder (BPD) is a reliable, valid, common and treatable mental disorder1. The adverse personal, social and economic consequences of BPD are severe. They include persistent functional disability2, high family and carer burden3, incomplete education with fewer qualifications and disproportionately high unemployment4, physical ill health5, greater burden of mental disorders, recurrent self‐harm, and a suicide rate of around 8%1. The high economic costs of BPD (estimated to be €16,852 per patient per annum in the Netherlands) are attributable to high direct treatment costs and high indirect costs, chiefly work‐related disability1. BPD is a stronger predictor of being on disability support than either depressive or anxiety disorders6.

Although BPD usually has its onset in the period between puberty and emerging adulthood (young people)7, delay in the diagnosis and treatment is the norm, and discrimination against people with BPD is widespread. Specific treatment is usually only offered late in the course of the disorder, to relatively few individuals, and often in the form of inaccessible, highly specialized and expensive services4. Accumulating evidence indicates that such “late intervention” often reinforces functional impairment, disability and therapeutic nihilism.

The proliferation of knowledge about BPD in adolescents and emerging adults (“youth”) over the past two decades8, 9 has provided a firm basis for establishing early diagnosis and treatment (“early intervention”) for BPD and for subthreshold borderline personality pathology7. Several salient issues arise from this literature. First, personality disorder begins in childhood and adolescence, and can be diagnosed in young people. Second, DSM‐5 BPD is as valid and reliable a diagnosis in adolescence as it is in adulthood, based on similarity in prevalence, phenomenology, stability and risk factors, marked separation of course and outcome from other disorders, and efficacy of disorder‐specific treatment. Third, BPD is common among young people: the estimated prevalence is 1‐3% in the community, rising to 11‐22% in outpatients, and 33‐49% in inpatients7, 8. Fourth, when BPD is compared with other mental disorders, it is among the leading causes of disability‐adjusted life years (DALYs) in young people9. BPD is also a substantial financial burden for the families of young people, with estimated average costs per annum in the US of $14,606 out‐of‐pocket, plus $45,573 billed to insurance10. Fifth, the “first wave” of evidence‐based treatments has demonstrated that structured treatments for BPD in young people are effective4. Finally, the weight of empirical evidence has led the DSM‐5 and the UK and Australian national treatment guidelines to “legitimize” the diagnosis of BPD prior to age 18.

The Global Alliance for Prevention and Early Intervention for BPD had its origins at a meeting convened under the auspices of the National Education Alliance for BPD in New York in May 2014. The Alliance calls for action through a set of scientifically based clinical, research and social policy strategies and recommendations.

Clinical priorities include: a) early intervention (i.e., diagnosis and treatment of BPD when an individual first meets DSM‐5 criteria for the disorder, regardless of his/her age) should be a routine part of child and youth mental health practice; b) training of mental health professionals in evidence‐based early interventions should be prioritized; c) indicated prevention (preventing the onset of new “cases” by targeting individuals showing sub‐threshold features of BPD) currently represents the best starting point toward developing a comprehensive prevention strategy for BPD; d) early identification should be encouraged through workforce development strategies (knowledge about BPD as a severe mental disorder affecting young people should be disseminated among trainees and clinicians in the child and youth mental health professions; programs should address clinician‐centred discomfort with the label, mistaken beliefs, and prejudicial and discriminatory attitudes and behaviour); e) the diagnosis of BPD should not be delayed (non‐diagnosis of BPD is discriminatory because it denies individuals the opportunity to make informed and evidence‐based treatment decisions, and excludes BPD from health care planning, policy and service implementation, ultimately harming the young people's prospects); f) misleading terms, or the intentional use of substitute diagnoses, should be discouraged (when sub‐threshold BPD is present, terms such as “BPD features” or “borderline pathology” are preferred); g) family and friends should be actively involved as collaborators in prevention and early intervention (typically, family and friends are the “front line” for young people with BPD, and their central role should be recognized and supported).

Research priorities are as follows: a) prevention and early intervention for BPD must be integrated with similar efforts for other severe mental disorders, such as mood and psychotic disorders, acknowledging the “equifinal” and “multifinal” pathways for the development of psychopathology; b) building a knowledge base for a health care system response to prevention and early intervention for BPD can take two approaches (for indicated prevention and early intervention, a critical task is to identify risk factors for the persistence or worsening of problems, rather than the “onset” or incidence of disorder per se; or treatment development can be based upon causal mechanisms that underlie risk, such as environmental adversities); c) novel, low‐cost preventive interventions that can be widely disseminated should be developed and evaluated (such interventions will need to be developmentally appropriate, and stage/phase specific, incorporating stepped care service models); d) education and skill development programs for families with a young person with BPD are a key priority for treatment research; e) research needs to fully quantify the educational, vocational and social outcomes for young people with BPD; f) further development and validation of brief and “user‐friendly” assessment tools is needed to promote the systematic use of standardized evaluation in research and clinical settings; g) detailed health economic data are needed to support prevention and early intervention programs for BPD and should be included in all clinical trials; h) research identifying methods to improve access to evidence‐based treatments and reduce treatment dropout is a priority (this should include novel locations and formats for delivery of treatments, such as in schools, out‐of‐home care, or youth forensic settings).

Social and policy priorities include the following: a) BPD needs to be recognized as a severe mental disorder at all levels of the health system; b) evidence‐based policy is needed to address BPD from primary through to specialist care, with the aim of building a health care system response to prevention and early intervention with young people and those who care for them as its focus, and including young people and families as partners in the design of such systems; c) discriminatory practices in health care systems must be eliminated, especially regarding BPD as a “diagnosis of exclusion” from services and refusing health insurance coverage for people with BPD.

Andrew M. Chanen1, Carla Sharp2, Perry Hoffman3 and the Global Alliance for Prevention and Early Intervention for Borderline Personality Disorder
1Orygen, National Centre of Excellence in Youth Mental Health & Centre for Youth Mental Health, University of Melbourne, Melbourne, Australia; 2University of Houston, Houston, TX, USA; 3National Education Alliance for Borderline Personality Disorder, USA

A. Chanen and C. Sharp are joint first authors of this letter. The Global Alliance for Prevention and Early Intervention for Borderline Personality Disorder includes: B. Aguirre, G. Andersen, R. Barkauskiene, A. Bateman, E. Bleiberg, M. Bohus, R. Brunner, A. Chanen, L. Courey, S. Crowell, F. de Fruyt, M.‐P. De Valdivia, M. Debbané, B. De Clercq, K. Ensink, D. Flynn, P. Fonagy, A. Fossati, A. Fruzetti, L. Gervinskaite‐Paulaitiene, M. Goodman, K. Goth, K. Gratz, J. Gunderson, K. Hall, S.B. Hansen, S. Herpertz, H. Herrman, C. Hessels, P. Hoffman, J. Hutsebaut, M. Jacobsen, M. Kaess, C. Kaplan, C. Kempinsky, R. Kissell, M. Kongerslev, B. Krueger, P. Luyten, K. Lyons‐Ruth, J. Mazza, L. McCutcheon, P. McGorry, L. Mehlum, A. Miller, C. Mirapeix, A. New, J. Oldham, J. Paris, J. Rathus, M.E. Ridolfi, T. Rossouw, S. Schlüter‐Müller, C. Schmahl, K. Schmeck, C. Sharp, R. Shiner, E. Simonsen, M. Speranza, B. Stanley, S. Stepp, J. Tackett, Ø. Urnes, R. Verheul, M. Wells, C. Winsper, S. Yen, M. Zanarini; the International Society for the Study of Personality Disorders, the European Society for the Study of Personality Disorders, the North American Society for the Study of Personality Disorders, the National Education Alliance for Borderline Personality Disorder USA, the National Education Alliance for Borderline Personality Disorder Australia, the National Education Alliance for Borderline Personality Disorder Israel, the National Education Alliance for Borderline Personality Disorder Italy, and the Sashbear Foundation.