Study Outcomes

What is the issue?

Psychosis can cause everyday scenarios to be anxiety-provoking. Feelings of fear for those with psychosis may arise because they feel negatively judged, observed or rejected. They may fear failing at a task, panicking in public, being unable to cope with hallucinations or hurting others. This may lead to avoidance of everyday situations like going to the shop, because it may be very distressing. This fear and avoidance could lead to agoraphobia where those with psychosis may avoid leaving their home altogether or only leave the home to go to places and take part in activities they feel safe in. In a survey of 1809 patients with non-affective psychosis who were attending mental health services in the UK National Health Service (NHS), anxious avoidance classed as agoraphobia was found in 64.5% of patients. This contributes further to mental and physical health decline.

What is new?

gameChange tested a new form of Virtual Reality (VR) psychological therapy, designed to help with the intense anxiety that some people with psychosis can experience from everyday tasks. The gameChange study recruited 346 people to take part. The participants were divided into two groups; one group receiving gameChange in additional to usual care, and the other group only receiving usual care.

gameChange provides an interactive experience of different common scenarios, for example a cafe or bus environment, guided by a virtual assistant. As such, gameChange can be delivered by several different healthcare professionals, which increases the potential use.

What we did?

Our recruitment target was 69 people. We recruited 80 people from June 2019 to April 2021 

Two peer researchers joined the team during this time. They brought lived experince to the role whilst delivering the study.

Why is the study important?

The participants receiving the gameChange therapy had 6 sessions lasting an hour. A Research Assistant met with participants at the start of the study, after 6 weeks, and again at 6 months to see whether there had been a change in the person's anxiety levels.

•  gameChange VR was generally helpful in reducing anxiety in everyday situations.
• There were significant reductions in anxiety amongst those experiencing agoraphobia, avoidance of everyday situations
• The greatest benefits of gameChange were amongst those that experienced difficulties leaving the house and those with the most severe psychiatric symptoms (including severe anxiety, depression, delusions, and hallucinations).
• The benefits of the VR therapy were maintained at the 6-month review point for those with severe difficulties.
• On average, patients with severe avoidance were able to complete two more avoided activities, such as going to a shopping center on their own 6 months after VR therapy.

What comes next?

Service user feedback indicated that gameChange was an extremely popular treatment option, with high demand. It was found it had the greatest impact on those with high to severe agoraphobic avoidance. However, its effectiveness beyond 6-months will need further investigation. It has potential applications beyond psychosis patients but the method of best use and implementation with other services will need continuous review.

Further information

https://gamechangevr.com/

What is the issue?

Eating disorders (EDs) affect approximately 8% of the global population. Females make up a large proportion of those affected. Eating disorders are often chronic and have high relapse rates. Around half of those affected by an eating disorder recover and reach remission with currently available treatments but many patient needs are not met. Eating disorders are a difficult study area, with many of those affected keeping their disorder a secret and not seeking help. This, and stigma around eating disorders, leads to small research samples and underrepresentation of certain groups within these samples such as men. Further to this, study funding is limited with 1% of annual mental health funding being allocated to EDs despite them making up 9% of psychiatric disorders and ED’s, and resulting comorbid health issues, substantial costs on the healthcare system.

What is new?

The Eating Disorders Genetics Initiative in the UK (EDGI UK) is part of the National Institute for Health and Care Research (NIHR) Mental Health BioResource. The aim of the study is to support research into the environmental and genetic causes of eating disorders by creating a recontactable resource of environmental and genetic data from people with lived experience of eating disorders.

EDGI UK launched in 2020 in partnership with Beat (a UK eating disorder charity). People taking part are asked to complete questionnaires and provide a saliva sample for genetic testing.

What we did?

Our recruitment target from July 2021 to September 2024 is 20 between. We have exceeded this target, continuing to recruit for this study. See our take part in research page to get involved!

Why is the study important?

EDGI UK is still recruiting but preliminary demographic results and comorbidities results are as follows:

• Exactly 8,397 people had completed the questionnaire, half those completing the questionnaire had returned salvia samples.
• Those taking part were 98% female, 93% white, 97.7% cisgender, 67% heterosexual, and 52% had a university education.
• The most common diagnoses of those taking part were anorexia nervosa (42.7%), atypical anorexia (31.4%), bulimia nervosa (33.2%), binge-eating disorder (14.6%), and purging disorder (33.5%)
• Over half of EDGI UK survey participants report a lifetime diagnosis of depression and anxiety.
• Other psychiatric comorbidities include OCD (58-69%), posttraumatic stress disorder (15-20%), and personality disorder (12-18%).
• Participants with binge-eating disorder had higher comorbidities for ADHD (11%), bipolar disorder (8.1%), and personality disorder (18%), than people with other eating disorders, (5.1%, 4.2%, and 13%, respectively).

What comes next?

The EDGI UK study offers the unique opportunity to accelerate eating disorder research and increase collaboration between researchers and participants with lived experience. The EDGI UK study is the largest UK study of eating disorders but needs greater diversity. Attempts are being made to increase diversity of those taking part with use of patient and public involvement.

Further information:

The full publication of the initial results of the EDGI study can be found at https://www.medrxiv.org/content/10.1101/2022.11.11.22282083v1.full

More information about the EGDI study can be found at edgiuk.org

What is the issue?

Acute mental health services face major challenges, including lack of resources and poor service user experience. One in five people will be readmitted to acute mental health services within 6 months with most people readmitted around a month from discharge. Readmission is more likely amongst female, single, and mixed/black ethnicity populations, those from deprived areas, and those with severe psychosis.

The acute mental health pathway includes Acute Day Units (ADUs) which provide daily structured sessions in non-residential settings, as well as Crisis Resolution Teams (CRTs), which offer intensive home treatment. The majority of NHS Trusts do not provide ADUs, despite their potential to reduce inpatient admissions.

What is new?

ADUs could help address some of the issues that acute mental services experience however, limited research exists about ADUs. The AD-CARE study was carried out to explore and describe ADUs within the acute care system of England to deliver a comprehensive report on the current value of ADUs, and recommendations about service models.

The AD-CARE study incorporated both Patient and Public Involvement, as well as Peer Researchers.

What we did?

Our recruitment target was 140, we met this target recruiting 144 participants from March 2018 to March 2019.

Why is the study important?

ADUs units can support physical and psychological support delivered by multi-disciplinary teams. The average attendance of these services is 5 weeks. ADUs are a prevention of crisis and step-down service from inpatient care. They can reduce hospital admissions and provide a means of early discharge. ADUs can also have variable integration with other services.

• The study found ADUs are more positively experienced than CRTs with service users reporting higher satisfaction, increased wellbeing, and lower depression than those who only used CRTs.
• Staff and service users both value ADUs for staff continuity, therapeutic relationships, choice of interventions/activities, structure, flexibility, and support from peers.
• The study found there were no significant differences in readmission for those who used ADUs versus CRTs.   

What comes next?

Only 5% of people that receive acute care are treated in ADUs.  Given the positive outcomes for patients, and the fact that ADUs are inconsistently provided in the National Health Service, their value and place in the acute care pathway needs further consideration and research.

Further information

You can find out more about the AD-CARE study - https://www.ucl.ac.uk/psychiatry/research/epidemiology-and-applied-clinical-research-department/acute-day-units-crisis-alternatives

What is the issue?

Health data is recorded by healthcare professionals. It can be simple such as current medications a patient is taking or more detailed such as blood test results. When data is combined with a person's name, address and address it becomes identifiable health data and therefore confidential. But data can be de-identified or anonymised without personal details. For care of a person, a full health record is necessary but for research personal details are not required. Some data requires consent to share with other professionals such as referrals. Sometimes consent is implied such as releasing carer back to a GP after specialist treatment. In emergency situations data is shared without consent for the patient's best interest. The boundaries between implied versus given consent is blurred and the question remains ‘do the current practices reflect expectations and wishes on how their data is shared?’.

What is new?

Between February and September 2020, researchers from the University of Cambridge conducted a study of 29,000 people to understand what people knew about how their health data was shared and what they wanted in regards to data sharing.

What we did?

We had a recruitment target of 50 and we recruited 61 people between February 2020 to June 2020.

Why is the study important?

• When surveyed, 30% of people thought their health data was shared across the whole UK without ever asking, 14% of people thought their data was only shared across home nation, 42% of people thought their data was shared across regional/local area, and 15% of people thought their data was never shared without permission.
• When asked about preference for health data sharing, 55% of people supported sharing of data across the UK, 21% at a more regional/local scale, and 20% rejected sharing without permission (3% of people were unsure).
• People were happier to share identifiable information locally than nationally; however, this willingness to share identifiable health information was reduced for mental health information.
• There was a preference indicated for sharing "structured" de-identified healthcare information, like appointment dates and blood test results, over "free-text" de-identified healthcare information, like patient notes.
• There were big differences found in preference for data use; the NHS, academic institutions, and charities were all trusted over profit-making companies or other companies.
• The COVID-19 pandemic increased the preference people had for sharing health data for their own clinical care.
• More than 50% of people were unclear and did not know about the NHS National Data Opt-out option.
• There was broad support from those surveyed about linking de-identified health data to other non-health data (e.g. education and housing); however, there was general reluctance for this data to be held by private companies.
• When surveyed, 64% of people thought that there should be an NHS website where people could express interest in research, with only 13% of people thinking that current systems work okay.

What comes next?

Most people surveyed thought that the additional information should be provided about data security and where consent information would be stored, as well as clarify about who can access the data. Many people favoured a single NHS/Health and Social Care consent system to share personal health information for clinical and research purposes, with the majority wanting to record their preference using a website or personal interaction in a healthcare setting rather than using an app or paper form. A system that lays out how data is used and opt-outs for data sharing should be strongly considered to create transparency in healthcare.

Further information:

http://dx.doi.org/10.1136/bmjopen-2021-057579.

What is the issue?

Research is fundamental to healthcare. The healthcare organisations with a strong research culture understand the importance of generating new knowledge, identifying and developing research questions specific to their healthcare setting and population. The result of research active organisations is better healthcare service performance, higher quality care, improved patient care and better patient experience. Allied health professionals (AHPs) have the potential to develop and deliver much needed high-quality research. However, there has been little focus on building capacity, with a lack of AHP academic roles and uptake of NIHR Fellowships. Inequalities lie in these highly competitive processes for AHPs, with few AHPs achieving senior fellowships at post-doctoral level.  

What is new?

The AHP perceptions of research study aimed to understand the UK-wide picture of research capacity and culture amongst AHPs working in NHS health care and social care. The majority of study participants were physiotherapists, occupational therapists, and speech and language therapists.  Almost half of the participants had a post-graduate education. Most participants worked in England within Acute Hospital settings.

What we did?

16 AWP staff members were recruited to this study from July 2021 to September 2021.

Why is the study important?

Healthcare professions can play an important role in in informing, supporting, delivering, implementing and leading on clinical research. AHPs represent the third largest group in the UK. Research activity amongst AHPs is lower than medical or nursing professions.

• Individual research skill and success was rated as ‘adequate’, although this was below ‘adequate’ at a team level. Organisations were also rated as adequate based on the promotion of evidence-based clinical practice; however, this score was lowered by incapacity to ensure staff career development in research.
• Key barriers to AHP research engagement were the prioritisation of other commitments and a lack of time for research.
• The primary motivators were the opportunities for skills development and increased job satisfaction.
• Greatest AHP research engagement came from research evidence informing clinical practice (85% of participants) and involvement in clinical audit or research to evaluate clinical services (64% of participants).
• Lowest AHP research engagement came from taking on the roles of Chief Investigator (7% of participants) or Principle Investigator (8% of participants). 7% of participants reported no current research engagement.
• The majority of participants had not conducted research in the past 12 months. Thirty-four percent of participants had research activities in their job description, but 79% of those participants had less than a quarter of their time for research.
• Only 32% of participants had heard of the Council for Allied Health Professions Research (CAHPR). Around half of participants had some or fairly good knowledge of the National Institute for Health and Care Research (NIHR), but 74% of participants had little or no knowledge of the NIHR/Health Education England (HEE) integrated clinical academic training schemes for AHPs.

What comes next?

The findings from this survey provide a useful baseline to measure the impact of future research capacity building initiatives against. Relevant research support organisations and research posts should be highlighted as well as team level research discussions to promote a stronger research culture among AHPs.

Further information

A publication of this study by Comer et al. (2022) can be found at https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-022-08465-6

What is the issue?

Covid-19 had a profound effect on many aspects of our lives. One being mental health and wellbeing. Staff in the NHS were at the centre of the pandemic, facing immense demands and fast-paced high-stress working conditions. Mental health struggles and low wellbeing has the potential to impact on NHS staffs’ ability to provide safe, high-quality care. The impact of the pandemic on NHS staff’s mental health and wellbeing up until now was relatively unknown.

What is new?

NHS CHECK represents a major study of the impact of the COVID-19 pandemic on NHS staff short-term and long-term health and wellbeing. A survey was sent to 18 participating NHS Trusts in 2020, to develop a baseline measure of the impact of the pandemic on staff health and wellbeing. This survey was repeated after 6 months and 12 months. NHS staff were also interviewed about their health and wellbeing during the pandemic.

What we did?

Our recruitment target was 1000. We exceeded this target, recruiting 1219 AWP staff members from July 2020 to January 2022. This was higher than average recruitment for other NHS sites, with over a quater of all AWP staff taking part.

Why is the study important?

The project aims to use the data it generates to better support the future needs of NHS staff by informing workforce planning, targeted support for individuals, and more effective strategies for emergency response. The NHS CHECK study information is still being analysed; however, general findings include the following about NHS staff during the first year of the pandemic:

• 51% of staff met the criteria for a probable common mental health disorder.
• 36% of staff met the criteria for probable Post-Traumatic Stress Disorder (PTSD).
• 18% of staff met the criteria for alcohol misuse.
• 49% of staff felt supported by managers, 61% by colleagues, and 76% by family.
• More than 11% of staff felt they no support from supervisors or line managers.
• 66% of staff were using some form of staff discount, which was seen as the most useful of support available.
• 40% of staff were using online resource for support and 35% were accessing free wellbeing Apps.
• The least used support was bereavement phone support (5%), staff support text lines (6%), and staff support phone lines (7%).

What comes next?

Analysation of the data is still underway. This includes long-term mental health outcomes at 6 and 12 months compared to the baseline data and suicide and self-harm at baseline compared to 6-months. PTSD data is being in more depth. The occupational factors associated with staff sickness and intention to leave the organisation are also being analysed.

Further information:

https://nhscheck.org/

NHS CHECK partnered with The Tackling Inequalities and Discrimination Experiences in health services (TIDES) study to understand how ethnic inequalities in mental health and occupational outcomes amongst NHS staff were exacerbated by the COVID-19 pandemic, as well as the processes by which such inequalities are produced, maintained and resisted. You can find out more about the TIDES study at https://tidesstudy.com/.