Plain English Summary
Background and study aims
Mental health recovery stories are first-person accounts of a journey of recovery from mental health problems. This study is developing theory to explain what recovery stories are and how they impact people (including an assessment of benefits and harms). The researchers are drawing on this theory to design an intervention in which selected recovery stories are presented online for the benefit of people experiencing psychosis. This study looks at whether receiving mental health recovery stories presented online improves quality of life for people with psychosis.
Who can participate?
Patients aged 18-65 who are currently experiencing psychosis and using mental health services in England
What does the study involve?
Participants are randomly allocated to either receive treatment as usual (e.g. from their secondary care team), or treatment as usual plus access to a collection of recorded recovery stories presented online. Participants can opt to receive a collection of stories recommended by an algorithm, to search for stories based on a set of tags, or to receive random stories. They can return to the online interface repeatedly over a one-year period. To assess the impact of receiving recovery stories, participant quality of life is assessed at the start of the study and after 1 week, 3 months and 1 year using a short online questionnaire. Online questionnaires are also used to track participants’ perceptions of hope, meaning in life, empowerment, the quality of their social relationships, and their mental health symptoms.
What are the possible benefits and risks of participating?
This study tests an intervention built around recovery stories and will have an impact on future clinical practice. Making a contribution to this evaluation and to the evolution of clinical practice might be perceived as a benefit of participation. Some participants will be randomly selected to receive recovery stories. For those participants, the opportunity to engage with the stories of peers might be perceived as a benefit. Engaging with recovery stories can be distressing, however, and this might be perceived as a risk for some participants.
Where is the study run from?
Nottinghamshire Healthcare NHS Foundation Trust (UK)
When is the study starting and how long is it expected to run for?
August 2018 to April 2022
Who is funding the study?
National Institute for Health Research (UK)
Who is the main contact?
Dr Stefan Rennick-Egglestone
stefan.egglestone@nottingham.ac.uk
Trial website
http://www.researchintorecovery.com/research/neon/neon-trial
Contact information
Type
Scientific
Primary contact
Dr Stefan Rennick-Egglestone
ORCID ID
http://orcid.org/0000-0003-4187-011X
Contact details
Institute of Mental Health
Triumph Road
Nottingham
NG7 2TU
United Kingdom
+44 (0)115 82 30926
stefan.egglestone@nottingham.ac.uk
Additional identifiers
EudraCT number
ClinicalTrials.gov number
Protocol/serial number
249015
Study information
Scientific title
Narrative Experiences ON-line (NEON): a two-arm randomised controlled trial in which people experiencing psychosis receive (arm 1) versus do not receive (arm 2) online access to recorded mental health recovery stories, with a primary outcome measure of quality of life, and secondary outcome measures of hope, empowerment, meaning in life, quality of social relationships and symptomatology
Acronym
NEON
Study hypothesis
Participants receiving mental health recovery stories will have improved quality of life at one-year follow-up compared with those not receiving mental health recovery stories.
Ethics approval
Not provided at time of registration
Study design
Randomised controlled trial
Primary study design
Interventional
Secondary study design
Randomised controlled trial
Trial setting
Internet
Trial type
Quality of life
Patient information sheet
Not available in web format, please use the contact details to request a patient information sheet
Condition
Mental health
Intervention
An interventional trial, with no masking, delivered online with recruitment across England, and 1:1 randomised allocation stratified for severity of condition. Randomisation will be through an algorithm that uses a generic random number generation library.
Arm 1: treatment as usual plus access to a collection of recorded recovery stories presented online for 1 year
Arm 2: treatment as usual for 1 year
Duration of treatment: 1 year. No follow up beyond the end of the treatment period.
Intervention type
Other
Phase
Drug names
Primary outcome measure
Health-related quality of life assessed using the Manchester Short Assessment (MANSA) at 1 week, 3 months and 1 year after baseline
Secondary outcome measures
Assessed at 1 week, 3 months and 1 year after baseline:
1. Hope assessed through the Herth Hope Index (Herth, 1992)
2. Meaning in life assessed through the Meaning in Life Questionnaire (Steger et al, 2006)
3. Empowerment assessed through the Mental Health Confidence Scale (Carpinello et al, 2000)
4. Symptomatology assessed through a standardised measure (to be determined)
5. Quality of social relationships assessed through a non-standardised scale to be developed within the NEON study
Overall trial start date
06/08/2018
Overall trial end date
29/04/2022
Reason abandoned (if study stopped)
Eligibility
Participant inclusion criteria
1. Aged 18-65
2. Any gender
3. Primary or secondary clinical diagnosis of psychosis (including e.g. schizophrenia, schizoaffective disorder, bipolar disorder)
4. Currently using mental health services in England
5. Able to understand English
6. Able to access or be supported to access the internet
7. Able to give online informed consent
Participant type
Patient
Age group
Adult
Gender
Both
Target number of participants
683
Participant exclusion criteria
Does not meet inclusion criteria
Recruitment start date
01/11/2019
Recruitment end date
30/04/2021
Locations
Countries of recruitment
United Kingdom
Trial participating centre
Nottinghamshire Healthcare NHS Foundation Trust
Duncan Macmillan House
Porchester Road
Mapperley
Nottingham
NG3 6AA
United Kingdom
Sponsor information
Organisation
Nottinghamshire Healthcare NHS Foundation Trust
Sponsor details
Duncan Macmillan House
Porchester Road
Mapperley
Nottingham
NG3 6AA
United Kingdom
+44 (0)1157484321
shirley.mitchell@nottshc.nhs.uk
Sponsor type
Hospital/treatment centre
Website
Funders
Funder type
Government
Funder name
National Institute for Health Research
Alternative name(s)
NIHR
Funding Body Type
government organisation
Funding Body Subtype
National government
Location
United Kingdom
Results and Publications
Publication and dissemination plan
The trialists will publish the trial protocol, which will incorporate a statistical analysis plan.
Dissemination through:
1. Publication of trial report in a journal with an international audience
2. Publication of a lay summary through the study website
IPD sharing statement
Enquiries should be addressed to m.slade@nottingham.ac.uk, or to the Research and Innovation department of the study sponsor, Nottinghamshire Healthcare NHS Foundation Trust. The trialists will provide a statement clarifying data availability in their published trial protocol.
Intention to publish date
30/09/2022
Participant level data
Available on request
Basic results (scientific)
Publication list
2019 qualitative study results in: https://www.ncbi.nlm.nih.gov/pubmed/31256037 (added 02/07/2019)