Transforming Care and Outcomes in Borderline Personality Disorder
Lead Research Organisation:
Sheffield Health and Social Care NHS FT
Department Name: Research Development Unit
Abstract
orderline personality disorder (BPD) is a complex, common and disabling mental health condition. BPD problems include difficulties in relationships and feelings of emptiness, managing emotions (which can often be intense and overwhelming and triggered by fear of abandonment) and impulsiveness, especially self-harm and suicidal feelings. Sadly, around 10% of people who are diagnosed with BPD die by suicide, making it a life-threatening condition.
Many people, including some professionals, don't believe that BPD should be used as a diagnosis, partly because BPD symptoms often overlap with other mental health conditions. What is agreed is that people with BPD problems experience stigma, and perhaps to a greater extent than people with other mental health conditions. People with BPD often find themselves accused of attention-seeking and this is sometimes used as a reason to exclude them from services.
BPD runs in families, and it is most common in people who have experienced trauma, especially when at a young age. It is thought that trauma early in life affects brain development and especially the response to stress. We don't know enough about how to help with people who experience these problems. Psychological treatments help but are hard to access, and although over 90% of people diagnosed with BPD are prescribed psychiatric drugs there is no scientific evidence that these actually do much good.
The voices of people with lived experience of BPD problems are rarely heard in the scientific literature and this needs to change. We don't yet know if removing BPD from the list of mental health diagnoses would be a good thing but we are sure that understanding will only improve by working with people who have experienced these problems. We are planning a programme of research (called a mental health platform hub) over 5 years to transform care experiences and outcomes for people who experience BPD problems. We believe that the key lies in understanding how experiences in peoples' everyday lives trigger intense emotions or feelings, or cause people to harm themselves, for example.
We will invite people with BPD problems to become part of a group of people who will help us select and answer the most important questions. We'll include people who might not identify as having BPD as a diagnosis and will offer payment (vouchers) for completing questionnaires and interviews and for taking part in different studies. One of these will use a method called ecological momentary analysis (EMA) and involves wearing a smartwatch and answering short questions when prompted by a smartphone app a few times a day, for 3 weeks.
We will also look at the data in anonymous electronic health records, using artificial intelligence, to see if we can predict which particular BPD problems lead to persistent or worse problems over time, to help find more precise ways of helping more who experience these.
We will find ways to make sure that being part of this research feels worthwhile, so that people will want to continue. There will be opportunities to help with the research in other ways, including being part of workshops to develop more personalised ways of helping people with BPD to manage their feelings and emotions, and to develop ways to support professionals. Together with the people who take part, we will share our findings to raise awareness of BPD.
Many people, including some professionals, don't believe that BPD should be used as a diagnosis, partly because BPD symptoms often overlap with other mental health conditions. What is agreed is that people with BPD problems experience stigma, and perhaps to a greater extent than people with other mental health conditions. People with BPD often find themselves accused of attention-seeking and this is sometimes used as a reason to exclude them from services.
BPD runs in families, and it is most common in people who have experienced trauma, especially when at a young age. It is thought that trauma early in life affects brain development and especially the response to stress. We don't know enough about how to help with people who experience these problems. Psychological treatments help but are hard to access, and although over 90% of people diagnosed with BPD are prescribed psychiatric drugs there is no scientific evidence that these actually do much good.
The voices of people with lived experience of BPD problems are rarely heard in the scientific literature and this needs to change. We don't yet know if removing BPD from the list of mental health diagnoses would be a good thing but we are sure that understanding will only improve by working with people who have experienced these problems. We are planning a programme of research (called a mental health platform hub) over 5 years to transform care experiences and outcomes for people who experience BPD problems. We believe that the key lies in understanding how experiences in peoples' everyday lives trigger intense emotions or feelings, or cause people to harm themselves, for example.
We will invite people with BPD problems to become part of a group of people who will help us select and answer the most important questions. We'll include people who might not identify as having BPD as a diagnosis and will offer payment (vouchers) for completing questionnaires and interviews and for taking part in different studies. One of these will use a method called ecological momentary analysis (EMA) and involves wearing a smartwatch and answering short questions when prompted by a smartphone app a few times a day, for 3 weeks.
We will also look at the data in anonymous electronic health records, using artificial intelligence, to see if we can predict which particular BPD problems lead to persistent or worse problems over time, to help find more precise ways of helping more who experience these.
We will find ways to make sure that being part of this research feels worthwhile, so that people will want to continue. There will be opportunities to help with the research in other ways, including being part of workshops to develop more personalised ways of helping people with BPD to manage their feelings and emotions, and to develop ways to support professionals. Together with the people who take part, we will share our findings to raise awareness of BPD.
Technical Summary
Borderline personality disorder (BPD) is a complex, common and disabling mental health condition. BPD problems include difficulties with personal identity and relationships, managing emotions and impulsiveness. Around 10% of people who are diagnosed with BPD die by suicide. BPD symptoms often co-occur with other mental health conditions.
People with BPD problems experience stigma and are often excluded from services. BPD runs in families and is most common in people who have experienced trauma at a young age. Such trauma can affect brain development and especially the response to stress. Treatment and support can be hard to come by; psychological treatments help but are difficult to access and there is no evidence that psychotropic drugs are effective for BPD symptoms.
We will undertake research over 5 years to improve care experiences and outcomes for people who experience BPD problems, starting with mapping evidence. We will recruit around 200 people who experience BPD problems, including those who might not identify as having a BPD diagnosis. Cohort members will take part in studies to improve our understanding of BPD phenotypes. One study will use ecological momentary analysis (EMA) and wearable devices to capture data for creating dynamic symptom network maps. Other studies will use in-depth interviews and creative methods like photovoice to capture experiences of living and coping with BPD problems. We will analyse data in anonymous electronic health records, using artificial intelligence, to predict which BPD problems persist and/or lead to emotional crises. This will help us identify intervention targets.
We will involve lived experience experts throughout the programme, including in workshops to develop personalised ways of helping people with BPD to manage their feelings and emotions, and ways to support professionals. We will identify and test promising treatments (such as a real-time digital self-help app) and share our findings to raise awareness of BPD
People with BPD problems experience stigma and are often excluded from services. BPD runs in families and is most common in people who have experienced trauma at a young age. Such trauma can affect brain development and especially the response to stress. Treatment and support can be hard to come by; psychological treatments help but are difficult to access and there is no evidence that psychotropic drugs are effective for BPD symptoms.
We will undertake research over 5 years to improve care experiences and outcomes for people who experience BPD problems, starting with mapping evidence. We will recruit around 200 people who experience BPD problems, including those who might not identify as having a BPD diagnosis. Cohort members will take part in studies to improve our understanding of BPD phenotypes. One study will use ecological momentary analysis (EMA) and wearable devices to capture data for creating dynamic symptom network maps. Other studies will use in-depth interviews and creative methods like photovoice to capture experiences of living and coping with BPD problems. We will analyse data in anonymous electronic health records, using artificial intelligence, to predict which BPD problems persist and/or lead to emotional crises. This will help us identify intervention targets.
We will involve lived experience experts throughout the programme, including in workshops to develop personalised ways of helping people with BPD to manage their feelings and emotions, and ways to support professionals. We will identify and test promising treatments (such as a real-time digital self-help app) and share our findings to raise awareness of BPD
