Pathways to care in at-risk mental states and first episode psychosis
Research type
Research Study
Full title
Pathways to care in at-risk mental states and first episode psychosis
IRAS ID
248344
Contact name
Sophie M Allan
Contact email
Sponsor organisation
University of East Anliga
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
1 years, 6 months, 30 days
Research summary
Research Summary
People with psychosis have better outcomes the earlier they are treated. It can be hard for people to get the right help when they first have psychotic symptoms (e.g. hearing voices). This research is about “pathways to care” (the places people go to get help) in the early stages of psychosis. The results will tell us what gets in the way of getting help from Early Intervention in Psychosis (EIP) services. This could mean that people get help quicker and have a better chance of recovery.
This research will compare two groups of people’s “pathways to care”. The first group is people who got help from an EIP service in the early stages of psychosis (“at-risk mental states”). The second group is people who didn’t get the right help until they were much more unwell (people experiencing a first episode of psychosis). This will help tell us whether there are differences in their pathways to care and what factors may contribute to the differences or similarities in help-seeking patterns between the two groups. This research has two studies. Study one will access anonymous medical records to look at the differences in numbers and duration of “pathways to care”. The researcher will not have any identifiable information about participants (e.g. their name, address). It will also look at other factors, including age, ethnicity, living situation, and living in an urban or rural location. Study two will interview people experiencing an “at-risk mental state” and a first episode of psychosis to learn more about their experiences of getting help. Results will be written up for publication in academic journals, shared with participants, and promoted online.
The project’s Lived Experience Advisory Panel contributed to the research design, study documentation, and interview schedule. They will also assist with data analysis, interpretation of findings, and dissemination.
Summary of Results
People with psychosis may have a different experience of reality than other people. They may believe, hear, see, smell, or feel things that other people do not. People with psychosis may also notice other changes to their thoughts, feelings and what they do.
Research has shown that the sooner people with psychosis access treatment the better their outcomes are. Despite this, people with psychosis often experience delays in their “pathways to care”. Pathways to care is the time between first having psychotic symptoms, seeking help, and getting help.
Research suggests that treatment could occur even earlier when people are at a high risk of developing psychosis. These people will often have similar experiences to people with psychosis but are often less severe and do not last as long.We already know about what may make pathways to care longer and more difficult for people first experiencing psychosis. There is still a need to find out about what pathways to care are like for people who are at risk of developing psychosis.
Study 1:
The study compared pathways to care for people first experiencing psychosis and those who are at risk of developing psychosis in the future. The study looked at whether there were any differences in the number, length of time, and type of help-seeking contacts by looking at anonymous medical records. It also looked at what factors might account for any differences between the two groups.We found that people who are at risk of developing psychosis were younger and were less likely to be White non-British and Any Other ethnic groups than people first experiencing psychosis. People at risk of developing psychosis had fewer contacts, were less likely to be referred by acute services (such as hospital or crisis teams), less likely to be involuntarily admitted to hospital, and had less family involved in their pathways to care than people first experiencing psychosis.
We found no differences between the two groups in terms of whether they lived alone or with others, whether they lived in urban or rural areas, whether or not they were employed, length of time, whether police were involved in their pathways to care, and area-level deprivation.
Study 2:
We interviewed 11 people with experience of either a first episode of psychosis or who were at high risk of developing psychosis (experiencing an At-Risk Mental State). Most people we interviewed had difficult experiences of accessing the right help and went to many different services before they were seen by the early intervention in psychosis service. This led to delays in treatment and more distress. One person said it felt like they were “jumping from place to place”. Family and friends, and stigma were felt to play a key role in the help seeking process.Our findings highlights differences between people who access care when they are at risk of developing psychosis and those who are first experiencing psychosis. Future research should look at what can be done to encourage and enable people to access care at earlier stages to improve outcomes.
REC name
London - Brent Research Ethics Committee
REC reference
19/LO/0398
Date of REC Opinion
3 Apr 2019
REC opinion
Further Information Favourable Opinion