Stefan Rennick-Egglestone1, Rachel Elliott2, Melanie Smuk3, Clare Robinson4, Sylvia Bailey5, Roger Smith5, Jeroen Keppens6, Hannah Hussain2, Kristian Pollock7, Pim Cuijpers8, Joy Llewellyn-Beardsley9, Fiona Ng9, Caroline Yeo9, James Roe10, Ada Hui9, Lian van der Krieke11, Rianna Walcott12, Mike Slade9. 1. School of Health Sciences, Institute of Mental Health, University of Nottingham Innovation Park, Triumph Road, Nottingham, NG7 2TU, UK. stefan.egglestone@nottingham.ac.uk. 2. Division of Population Health, Health Services Research & Primary Care, University of Manchester, Oxford Road, Manchester, M13 9PL, UK. 3. London School of Hygiene and Tropical Medicine, Keppel St, Bloomsbury, London, WC1E 7HT, UK. 4. Centre for Primary Care & Public Health, Pragmatic Clinical Trials Unit, Queen Mary University of London, 58 Turner St, London, E1 2AB, UK. 5. NEON Lived Experience Advisory Panel, Nottingham, UK. 6. Department of Informatics, King's College London, Bush House, 30 Aldwych, London, WC2B 4BG, UK. 7. School of Health Sciences, Queens Medical Centre, Nottingham, NG7 2UH, UK. 8. Department of Clinical, Neuro and Developmental Psychology, Amsterdam Public Health Research Institute, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands. 9. School of Health Sciences, Institute of Mental Health, University of Nottingham Innovation Park, Triumph Road, Nottingham, NG7 2TU, UK. 10. National Institute for Health Research, ARC East Midlands, University of Nottingham, Triumph Road, Nottingham, NG7 2TU, UK. 11. University Medical Center Groningen, University Center of Psychiatry, University of Groningen, Hanzeplein 1, Groningen, 9713 GZ, The Netherlands. 12. Department of Digital Humanities, King's College London, Strand, London, WC2R 2LS, UK.
Abstract
BACKGROUND: Mental health recovery narratives have been defined as first-person lived experience accounts of recovery from mental health problems which refer to events or actions over a period of time and which include elements of adversity or struggle, and also self-defined strengths, successes or survival. They are readily available in invariant recorded form, including text, audio or video. Previous studies have provided evidence that receiving recorded recovery narratives can provide benefits to recipients. This protocol describes three pragmatic trials that will be conducted by the Narrative Experiences Online (NEON) study using the NEON Intervention, a web application that delivers recorded recovery narratives to its users. The aim of the NEON Trial is to understand whether receiving online recorded recovery narratives through the NEON Intervention benefits people with experience of psychosis. The aim of the NEON-O and NEON-C trials is to evaluate the feasibility of conducting a definitive trial on the use of the NEON Intervention with people experiencing non-psychosis mental health problems and those who care for others experiencing mental health problems respectively. METHODS: The NEON Trial will recruit 683 participants with experience of psychosis. The NEON-O Trial will recruit at least 100 participants with experience of non-psychosis mental health problems. The NEON-C Trial will recruit at least 100 participants with experience of caring for others who have experienced mental health problems. In all three trials, participants will be randomly allocated into one of two arms. Intervention arm participants will receive treatment as usual plus immediate access to the NEON Intervention for 1 year. Control arm participants will receive treatment as usual plus access to the NEON Intervention after 1 year. All participants will complete demographics and outcome measures at baseline, 1 week, 12 weeks and 52 weeks. For the NEON Trial, the primary outcome measure is the Manchester Short Assessment of Quality of Life at 52 weeks, and secondary outcome measures are the CORE-10, Herth Hope Index, Mental Health Confidence Scale and Meaning in Life Questionnaire. A cost-effectiveness analysis will be conducted using data collected through the EQ-5D-5 L and the Client Service Receipt Inventory. DISCUSSION: NEON Trial analyses will establish both effectiveness and cost-effectiveness of the NEON Intervention for people with experience of psychosis, and hence inform future clinical recommendations for this population. TRIAL REGISTRATION: All trials were prospectively registered with ISRCTN. NEON Trial: ISRCTN11152837 . Registered on 13 August 2018. NEON-C Trial: ISRCTN76355273 . Registered on 9 January 2020. NEON-O Trial: ISRCTN63197153 . Registered on 9 January 2020.
BACKGROUND: Mental health recovery narratives have been defined as first-person lived experience accounts of recovery from mental health problems which refer to events or actions over a period of time and which include elements of adversity or struggle, and also self-defined strengths, successes or survival. They are readily available in invariant recorded form, including text, audio or video. Previous studies have provided evidence that receiving recorded recovery narratives can provide benefits to recipients. This protocol describes three pragmatic trials that will be conducted by the Narrative Experiences Online (NEON) study using the NEON Intervention, a web application that delivers recorded recovery narratives to its users. The aim of the NEON Trial is to understand whether receiving online recorded recovery narratives through the NEON Intervention benefits people with experience of psychosis. The aim of the NEON-O and NEON-C trials is to evaluate the feasibility of conducting a definitive trial on the use of the NEON Intervention with people experiencing non-psychosis mental health problems and those who care for others experiencing mental health problems respectively. METHODS: The NEON Trial will recruit 683 participants with experience of psychosis. The NEON-O Trial will recruit at least 100 participants with experience of non-psychosis mental health problems. The NEON-C Trial will recruit at least 100 participants with experience of caring for others who have experienced mental health problems. In all three trials, participants will be randomly allocated into one of two arms. Intervention arm participants will receive treatment as usual plus immediate access to the NEON Intervention for 1 year. Control arm participants will receive treatment as usual plus access to the NEON Intervention after 1 year. All participants will complete demographics and outcome measures at baseline, 1 week, 12 weeks and 52 weeks. For the NEON Trial, the primary outcome measure is the Manchester Short Assessment of Quality of Life at 52 weeks, and secondary outcome measures are the CORE-10, Herth Hope Index, Mental Health Confidence Scale and Meaning in Life Questionnaire. A cost-effectiveness analysis will be conducted using data collected through the EQ-5D-5 L and the Client Service Receipt Inventory. DISCUSSION: NEON Trial analyses will establish both effectiveness and cost-effectiveness of the NEON Intervention for people with experience of psychosis, and hence inform future clinical recommendations for this population. TRIAL REGISTRATION: All trials were prospectively registered with ISRCTN. NEON Trial: ISRCTN11152837 . Registered on 13 August 2018. NEON-C Trial: ISRCTN76355273 . Registered on 9 January 2020. NEON-O Trial: ISRCTN63197153 . Registered on 9 January 2020.
Authors: Joy Llewellyn-Beardsley; Stefan Rennick-Egglestone; Simon Bradstreet; Larry Davidson; Donna Franklin; Ada Hui; Rose McGranahan; Kate Morgan; Kristian Pollock; Amy Ramsay; Roger Smith; Graham Thornicroft; Mike Slade Journal: Soc Psychiatry Psychiatr Epidemiol Date: 2019-10-25 Impact factor: 4.328
Authors: Joy Llewellyn-Beardsley; Stefan Rennick-Egglestone; Felicity Callard; Paul Crawford; Marianne Farkas; Ada Hui; David Manley; Rose McGranahan; Kristian Pollock; Amy Ramsay; Knut Tore Sælør; Nicola Wright; Mike Slade Journal: PLoS One Date: 2019-03-28 Impact factor: 3.240
Authors: Rose McGranahan; Stefan Rennick-Egglestone; Amy Ramsay; Joy Llewellyn-Beardsley; Simon Bradstreet; Felicity Callard; Stefan Priebe; Mike Slade Journal: JMIR Ment Health Date: 2019-10-04
Authors: Stefan Rennick-Egglestone; Amy Ramsay; Rose McGranahan; Joy Llewellyn-Beardsley; Ada Hui; Kristian Pollock; Julie Repper; Caroline Yeo; Fiona Ng; James Roe; Steve Gillard; Graham Thornicroft; Susie Booth; Mike Slade Journal: PLoS One Date: 2019-12-13 Impact factor: 3.240
Authors: Joy Llewellyn-Beardsley; Skye Barbic; Stefan Rennick-Egglestone; Fiona Ng; James Roe; Ada Hui; Donna Franklin; Emilia Deakin; Laurie Hare-Duke; Mike Slade Journal: J Recovery Ment Health Date: 2020
Authors: Caroline Yeo; Stefan Rennick-Egglestone; Victoria Armstrong; Marit Borg; Ashleigh Charles; Laurie Hare Duke; Joy Llewellyn-Beardsley; Fiona Ng; Kristian Pollock; Scott Pomberth; Rianna Walcott; Mike Slade Journal: J Recovery Ment Health Date: 2021
Authors: Mohsan Subhani; Katy A Jones; Kirsty Sprange; Stefan Rennick-Egglestone; Holly Knight; Joanne R Morling; Doyo G Enki; Andrew Wragg; Stephen D Ryder Journal: BMJ Open Date: 2021-11-03 Impact factor: 2.692
Authors: Mike Slade; Stefan Rennick-Egglestone; Joy Llewellyn-Beardsley; Caroline Yeo; James Roe; Sylvia Bailey; Roger Andrew Smith; Susie Booth; Julian Harrison; Adaresh Bhogal; Patricia Penas Morán; Ada Hui; Dania Quadri; Clare Robinson; Melanie Smuk; Marianne Farkas; Larry Davidson; Lian van der Krieke; Emily Slade; Carmel Bond; Joe Nicholson; Andrew Grundy; Ashleigh Charles; Laurie Hare-Duke; Kristian Pollock; Fiona Ng Journal: JMIR Form Res Date: 2021-05-27
Authors: James Roe; Susan Brown; Caroline Yeo; Stefan Rennick-Egglestone; Julie Repper; Fiona Ng; Joy Llewelyn-Beardsley; Ada Hui; Pim Cuijpers; Graham Thornicroft; David Manley; Kristian Pollock; Mike Slade Journal: Front Psychiatry Date: 2020-10-30 Impact factor: 4.157