BPD Community accepts a prevalence of 6% of BPD in the Australian community. The actual research suggests that there is a range from 1% to 6%. BPD Community endorses the higher range figure because:
it is in accord with the figure accepted by the USA govt, based on research done in USA. This figure has the authority of the USA govt a country comparative to Australia in its society and culture;
this figure takes into account those who would be considered to be sub threshhold or 'diagnostic orphans'. IN other words, those who might fall just outside the criteria guidelines of the DSM 5, but whose lives are nonetheless severely impacted by the psychic pain of BPD and those who might be challenged to lead an independent life because of their BPD.
this higher figure fits the experience of BPD Community. It is a figure that 'feels right'.
This rate of prevalence is seriously distressing, it equates to 350,000 people with BPD in Victoria. Just this year (2020) Dr Sathya Rao of Spectrum confirmed his estimate of about 4,000 people with BPD receiving treatment for their BPD. Click here to download the research paper or on image opposite.
BPD Community’s position statement details the policy and research implications of the existing prevalence data and the current state of prevalence research.
6% of australians have bpd
The data that exists indicates that BPD is highly prevalent internationally and within Australia. BPD Community accepts a prevalence of 6% for BPD. This is based on the research of Grant et al. (2008). This is accepted because it supports the experience of BPD Community. The analysis of the research identifies the many challenges and difficulties with prevalence research and data, including the concerns of data that have lower prevalence figures.
'diagnostic orphans' should count
It has been highlighted in this paper that people with sub-threshold BPD also need to be considered in research and policy. Further, it is suggested that - given the challenges in diagnosis, the episodic manifestations of symptoms, the appreciation that sub-threshold BPD may develop into more severe BPD if left untreated, and the challenges of co-occurring conditions - a sub-threshold diagnosis today may be a severe condition tomorrow.
It is clear that the state of prevalence research for all PDs, including BPD, is poor, both internationally and within Australia. Quirk et al. (2016) has argued that when PDs aren’t included in large-scale epidemiological studies, this may give the incorrect impression that PDs are not a significant public health concern. Extending this line of argument, the paucity of population-based data and subgroup data within Australia for BPD (and PDs in general) likely undermines perceptions of the importance of these conditions. It seems reasonable that this would translate into BPD receiving less attention from governments—and perhaps even researchers in a kind of feedback loop. It also is plausible that this would result in less attention to BPD and PDs from health care professionals. For these reasons, up-to-date research must be conducted in Australia. New population-level estimates for BPD are needed, as the only population-level data available is from the late 1990s and only covers adults (Jackson & Burgess, 2000). Up-to-date data is also needed for various subgroups, including at-risk groups.
The upcoming Intergenerational Health and Mental Health Study represents a valuable opportunity to provide up-to-date population prevalence estimates for BPD and other PDs. It is crucial that this occurs, and that this data continues to be updated frequently in future years. Furthermore, national mental health related-reports, such as those by the AIHW, should aim to collect and provide data in relation to PDs, including BPD, rather than placing them into an ‘other’ category. When this data is not collected and BPD is part of a broad ‘other’ category, this risks BPD being overlooked in policy responses and makes it difficult to gain more precise insights into relationships between BPD, comorbidities, health outcomes, health funding, etc.
BPD Community also notes that it is important that the National Suicide Register, expected to be completed in 2022, links suicides with mental health diagnoses, including BPD and other PDs. This will help provide more data on suicide rates for people with BPD.
BPD Community advocates that future research conducted on BPD prevalence within Australia be based on the ICD-11, as soon as this is possible. The ICD-11, unlike the existing classification systems, reflects the science that PDs are dimensional in nature. It allows for more nuance in diagnoses, allowing one to specify the severity of an individual’s BPD. This also addresses the issue of clinically significant sub-threshold personality disturbances, which can go unrecognised under the ICD-10 and DSM but can receive a diagnosis under the ICD-11. These factors mean that research using the ICD-11 can identify not just the prevalence of BPD, but the prevalence of different levels of severity of BPD. Having this knowledge would be a highly desirable outcome, as it would enable more effective targeting of different types of treatment, social, and relational supports.
Unfortunately, as the ICD-11 has not yet come into effect, and may take some time to be implemented in Australia, research in the meantime should use the DSM-5. Despite its flaws, this is the most current of the diagnostic systems until the ICD-11 can be used. Ideally, until the ICD-11 is ready to use, research should aim to extend the approach of ten Have et al. (2016) to Australian populations, by measuring the proportion of people with varying numbers of BPD symptoms from the DSM. This would enable prevalence research to assess BPD prevalence for varying levels of severity and to detect the proportion of Australians with clinically significant sub-threshold BPD. Once the ICD-11 is ready, this would no longer be necessary.
All research should aim, where possible, to use larger sample sizes and to use expert-rated measures of PDs. Additionally, while studying clinical populations is of value, it is also essential that population data is obtained, as clinical population data does not generalise to the general population. More research that assesses BPD prevalence in subgroups including various demographics—particularly at-risk and marginalised subgroups—is also needed.
BPD Community suggests the paucity of research into BPD and prevalence is an example of the stigma and discrimination experienced by people with lived experience of BPD. To continue to exclude people with BPD from the data, to continue to ignore the complexity of co-occurring illnesses means to continue to stigmatise and discriminate against people with BPD. People with lived experience of BPD need to be accounted for, they need BPD-informed supports.
The work of BPD Community is to fill the gaps and to replace stigma and discrimination with hope and optimism by creating a community to support recovery and to provide up-to-date, accessible, accurate information for that purpose.