Dementia, Frailty and End of Life Care

Abdelhamid A, Bunn D, Copley M, Cowap V, Dickinson A, Gray L, Howe A, Killett A, Lee J, Li F, Poland F, Potter J, Richardson K, Smithard D, Fox C, Hooper L. Effectiveness of interventions to directly support food and drink intake in people with dementia: systematic review and meta-analysis. BMC Geriatrics. 2016 ;16(1):26. doi: 10.1186/s12877-016-0196-3.

Barclay S, Froggatt K, Crang C, Mathie E, Handley M, Iliffe S and Goodman, C. Living in uncertain times: trajectories to death in residential care homes. British Journal of General Practice, 2014. 64(626), e576-e583.

Barclay S, Moran E, Boase S, Johnson M, Lovick R, Graffy J,White PL,Deboys B, Harrison K, and Swash B. Primary palliative care research: opportunities and challenges. BMJ Supportive & Palliative Care. 2019. doi: 10.1136/bmjspcare-2018-001653 (link)

Barclay S, Whyte R, Thiemann P, Benson J, Wood DF, Parker RA, & Quince T. An Important but Stressful Part of Their Future Work: Medical Students’ Attitudes to Palliative Care Throughout Their Course. Journal of pain and symptom management. 2014

Bowers B, Ryan R, Kuhn I and Barclay S. Anticipatory prescribing of injectable medications for adults at the end of life in the community: A systematic literature review and narrative synthesis. Palliative Medicine. 2018 (link)

Boyd P, Nevard M, Ford J, Khondoker M, Cross J and Fox C. The electronic frailty index as an indicator of community healthcare service utilisation in the older population. Age and Aging. 2019. 48:2, 273-277. doi:10.1093/ageing/afy181

Bunn DK., Abdelhamid A., Copley M., Cowap V., Dickinson A., Howe A., Killett A., Poland F., Potter JF., Richardson K., Smithard D., Fox C., and Hooper L. Effectiveness of interventions to indirectly support food and drink intake in people with dementia: Eating and Drinking Well IN dementiA (EDWINA) systematic review. BMC Geriatrics. 2016; 16:89. doi: 10.1186/s12877-016-0256-8 (PDF)

Burn A, Fleming J, Brayne C, et al. Dementia case-finding in hospitals: a qualitative study exploring the views of healthcare professionals in English primary care and secondary care. BMJ Open 2018;8(3) doi: 10.1136/bmjopen-2017-020521 (link)

Buswell M, Lumbard P, Prothero L, Lee C, Martin S, Fleming J, and Goodman C. Unplanned, urgent and emergency care: what are the roles that EMS plays in providing for older people with dementia? An integrative review of policy, professional recommendations and evidence. Emergency Medicine Journal 2014 Dec 2. doi: 10.1136/emermed-2014-203941.

Buswell M, Fleming J, Lumbard P, Prothero LS, Amador S, and Goodman C. Difference between how ambulance service personnel use paper and electronic patient care records when attending older people at home. European Journal of Emergency medicine 2015; 22(2): 147 – 148.

Chadborn H N, Goodman C, Zubair Z, Sousa L & Gladman J R F, Dening T, Gordon A L. Role of comprehensive geriatric assessment in healthcare of older people in UK care homes: realist review. April 2019, BMJ Open Vol 9 -4. (link)

Clarke G,  Galbraith S, Woodward J,  Holland A, and Barclay S. “Should they have a percutaneous endoscopic gastrostomy? The importance of assessing decision-making capacity and the central role of a multidisciplinary team.” Clinical Medicine 14, no. 3 (2014): 245-249.

Clarke G, Galbraith S, Woodward J, Holland A, Barclay s. Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how? BMC Medical Ethics (2015) 16:41 (PDF).

Clarke G, Johnston S, Corrie P , Kuhn I, and Barclay S. “Withdrawal of anticancer therapy in advanced disease: a systematic literature review.” BMC Cancer 2015 15:892 DOI 10.1186/s12885-015-1862-0 (PDF).

Coker JF, Martin ME, Simpson RM, Lafortune L. Frailty: an in-depth qualitative study exploring the views of community care staff. BMC Geriatrics. 2019.19(1):47. doi: 10.1186/s12877-019-1069-3 (link)

Daly R L , Bunn F, Goodman C. Shared decision-making for people living with dementia in extended care settings: a systematic review. BMJ Open 2018;8:e018977.  doi:10.1136/bmjopen-2017-018977 (PDF)

Daveson B, Harding R, Shipman C, Mason B, Epiphaniou E, Higginson I, Ellis-Smith C, Henson L, Munday D, Nanton V, Dale J, Boyd K, Worth A, Barclay S, Donaldson, Murray S. “The Real-World Problem of Care Coordination: A Longitudinal Qualitative Study with Patients Living with Advanced Progressive Illness and Their Unpaid Caregivers.” PloS one 9, no. 5 (2014): e95523.

Docking, R. E., Fleming, J., Brayne, C., Zhao, J., Macfarlane, G. J., & Jones, G. T. (2014). The relationship between back pain and mortality in older adults varies with disability and gender: Results from the Cambridge City over‐75s Cohort (CC75C) study. European Journal of Pain.

Farrington C. Blended e-learning and end of life care in nursing homes: a small-scale mixed-methods case study. BMC Palliative Care 2014; 13:31 doi:10.1186/1472-684X-13-31.

Fleming J., Farquhar M., Brayne C. and Barclay S. Death and the Oldest Old: Attitudes and Preferences for End-of-Life Care – Qualitative Research within a Population-Based Cohort Study. PLoSOne. 2016; 11940: e0150686.  doi 10.1371/journal.pone.0150686.

Fleming, J., Calloway, R., Perrels, A., Farquhar, M., Barclay, S. and Brayne, C. Dying comfortably in very old age with or without dementia in different care settings – a representative “older old” population study. on behalf of the CC75C Cambridge City over-75s Cohort study collaboration. BMC Geriatrics 2017 17/222 DOI 10.1186/s12877-017-0605-2 (PDF).

Fritz, Z. B., & Barclay, S. I. (2014). Patients’ resuscitation preferences in context: Lessons from POLST. Resuscitation85(4), 444-445.

Hiscock A, Kun I, and Barclay S. Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis. Neuromuscular Disorders 2017. 27(2) 115-119.

Hiscock A, Kun I, and Barclay S. Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis. Neuromuscular Disorders 2017. 27(2) 115-119. (PDF).

Hoare S, Morris ZS, Kelly MP, Kuhn I, Barclay S (2015) Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death. PLoS ONE 10(11): e0142723. doi:10.1371/journal.pone.0142723 (PDF).

Hoare S, Kelly K P, Prothero L, Barclay S. Ambulance staff and end-of-life hospital admissions: an interview study. Palliative Medicine. 2018. doi: 10.1177/0269216318779238 (PDF)

Kelly S, Lafortune L, Hart N, Cowan K, Fenton M, Brayne C. On behalf of the dementia priority setting partnership. Dementia research priorities: using patient and public involvement and the evidence. Age & Ageing. 2015; 44:985-993. (PDF).

Martin, Steven, et al. “Attitudes and preferences towards screening for dementia: a systematic review.” The Lancet 384 (2014): S49. (PDF).

Martin S, Fleming J, Cullum S, Dening T, Rait G, Fox C, Katona C, Brayne C, Lafortune L. Exploring attitudes and preferences for dementia screening in Britain: contributions from carers and the general public. BMC Geriatrics. 2015; 15:110. (PDF)

Mayrhofer A, Mathie E, McKeown J, Bunn F & Goodman C. Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review. Aging & Mental Health. 2017. doi: 10.1080/13607863.2017.1334038. (link)

Mayrhofer A, Mathie E, McKeown J, Goodman C, Irvine, L, Hall, N and Walker M. Young onset dementia: Public involvement in co-designing community-based support. Dementia. 2018. doi: 10.1177/1471301218793463 (PDF)

Norton S, Matthews F, Barnes D, Yaffe K, Brayne C. Potential for primary prevention of Alzheimer’s disease: an analysis of population-based data. Lancet Neurol 2014, 13:788-94.

Olanrewaju O, Clare L, Barnes L, Brayne , CFAS. A multimodal approach to dementia prevention: A report from the Cambridge Institute of Public Health. Alzheimer’s & Dementia:Translational Research & Clinical Interventions. 2015; doi: 0.1016/j.trci.2015.08.003 (PDF).

Olanrewaju O, Kelly S, Cowan A, Brayne C, Lafortune L (2016) Physical Activity in Community Dwelling Older People: A Systematic Review of Reviews of Interventions and Context.
PLoS ONE 11(12): e0168614. doi:10.1371/journal.pone.0168614 (PDF).

Petrova M, Riley J, Abel J, Barclay, S. Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from BMJ Supportive & Palliative Care Published Online First: 16 September 2016. doi: 10.1136/bmjspcare-2015-001059 (PDF).

Petrova M, Barclay M, Barclay SS and Barclay SIG. Between “the best way to deliver patient care” and “chaos and low clinical value”: General Practitioners and Practice Managers’ views on data sharing. Int J Med Inform. 2017 Aug;104:74-83. doi: 10.1016/j.ijmedinf.2017.05.009. Epub 2017 May 17. (PDF)

Spathis A, Booth S, Grove S, Hatcher H, Kuhn I, and Barclay S. Teenage and Young Adult Cancer-Related Fatigue Is Prevalent, Distressing, and Neglected: It Is Time to Intervene. A Systematic Literature Review and Narrative Synthesis. Journal Adolescent and Young Adult Oncology. 2015; 4(1):3-17.

Thiemann P, Quince T, Benson J, Wood D, and Barclay S. Medical Students’ Death Anxiety: Severity and Association with Psychological Health and Attitudes Toward Palliative Care.   Journal of Pain and Symptom Management.2015. 50(3):335-342.e2. doi: 10.1016/j.jpainsymman.2015.03.014.

Wang H, Leng Y, Zhao E, Fleming J, Brayne C. & The CC75C Study Collaboration. Mortality risk of loneliness in the oldest old over a 10-year follow-up. Aging & Mental Health. 2018. DOI: 10.1080/13607863.2018.1510897

Woodward M, Arthur A, Darlington N, Buckner S, Killett A, Thurman J, Buswell M, Lafortune L, Mathie E, Mayrhofer A, Goodman C. The place for dementia‐friendly communities in England and its relationship with epidemiological need, 24 Sep 2018, In : International Journal of Geriatric Psychiatry. 34, 1, p. 67-71 5 p., 15922149.  (link)

Enduring Disability and Disadvantage

Adlam, A., Adams, M., Turnbull, O, Yeates, G., Gracey, F. (2016). The Bangor gambling task: Characterising the performance of survivors of traumatic brain injury. Brain Impairment. 2016 (PDF).

Alexander R, Bethlehem I, Lombardo MV,  Lai MC, Auyeung B, Crockford S,  Deakin J, Soubramanian S, Sule A, Kundu P, Voon V and Baron-Cohen S. (2017) Oxytocin enhances intrinsic corticostriatal functional connectivity in women. Translational Psychiatry. doi:10.1038/tp.2017.72 (PDF)

Aman L, Manning KE, Whittington JE, and Holland AJ. Mechanistic insights into the genetics of affective psychosis from Prader-Willi syndrome. Lancet Psychiatry. 2018. (Link)

Annus T, Wilson LR, Hong YT, Acosta-Cabron J, Fryer TD, Cardenas-Blanco A, Smith R, Coros I, Coles JP, Aigbirhio FI, Menon DK. The of amyloid accumulation in the brains of adults with Down syndrome. Alzheimers and Dementia. 2015 Sep 9. (Epub ahead of print) doi: 10.1016/j.jalz.2015.07.490. (PDF).

Annus T, Wilson LR, Hong Y T, Acosta–Cabronero J, Fryer T D, Cardenas–Blanco A, Smith R, Boros I, Coles JP, Aigbirhio F, Menon D, Zaman S, Nestor PJ, &  Holland A J.  The pattern of amyloid accumulation in the brains of adults with Down syndrome. Alzheimer’s & Dementia.2016.12(5): 538-545 (PDF).

Ashwin C, Hietanen JK, Baron-Cohen S. Atypical integration of social cues for orienting to gaze direction in adults with autism. Molecular autism. 2015;6(1):5.

Azora A, Colea JH, Holland AJ, Dumbad M, Pateld MC, Sadlona A, Goldstone AP and Manning KE. Increased brain age in adults with Prader-Willi syndrome. NeuroImage: Clinical. 2019. 21: 101664.  doi:10.1016/j.nicl.2019.101664 (link)

Balasooriya-Smeekens C, Bateman A, Mant J, et al. Barriers and facilitators to staying in work after stroke: insight froman online forum. BMJ Open 2016;6:e009974. doi:10.1136/bmjopen-2015-009974 (PDF).

Baron-Cohen S, Cassidy S, Auyeung B, Allison C, Achoukhi M, Robertson S, et al. Attenuation of typical sex differences in 800 adults with autism vs. 3,900 controls. PloS one. 2014;9(7):e102251.

Camm-Crosbie L, Bradley L, Shaw R, Baron-Cohen S. and Cassidy S. ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism. 2018 doi:10.1177/1362361318816053 (link)

Cassidy S, Bradley L, Shaw R and Baron-Cohen S. Risk markers for suicidality in autistic adults. Molecular Autism. 2018; 9:42. DOI: 10.1186/s13229-018-0226-4 (PDF)

Clare ICH., Madden EM, Holland AJ, Farrington CJT, Whitson S, Broughton S, Lillywhite A., et al. (2016). ‘What vision’? Experiences of team members in a community service for adults with intellectual disabilities. Journal of Intellectual Disability Research (PDF).

Clare ICH, Wade KA,  Bolton S, Wagner AP, Steven T and Holland AJ. (2018) “The use of anti-psychotic and other psychotropic medication in a specialist community service for adults with learning disabilities”, Tizard Learning Disability Review, Vol. 23 Issue: 1, pp.12-21, (PDF)

Clarke G, Fistein E, Holland A, Tobin J, Barclay S and Barclay S. Planning for an uncertain future in progressive neurological disease: a qualitative study of patient and family decision-making with a focus on eating and drinking. BMC Neurology. 2018; 18:115  10.1186/s12883-018-1112-6 (link)

Cook EJ, Randhawa G, Sharp C, Ali N, Guppy A, Barton G, Bateman A and Crawford-White J Exploring the factors that influence the decision to adopt and engage with an integrated assistive telehealth and telecare service in Cambridgeshire, UK: a nested qualitative study of patient ‘users’ and ‘non-users’ Cook et al. BMC Health Services Research (2016) 16:137 (PDF).

Cuberos-Urbano G., Caracuel A., Valls-Serrano C., García-Mochón L., Gracey F., and Verdejo-García A.  A pilot investigation of the potential for incorporating lifelog technology into executive function rehabilitation for enhanced transfer of self-regulation skills to everyday life. Neurospychological Rehabilitation. 2016; 1-13   doi: 10.1080/09602011.2016.1187630. (link)

Di Napoli A, Warrier V, Baron-Cohen S, Chakrabarti B. Genetic variation in the oxytocin receptor (OXTR) gene is associated with Asperger Syndrome. Molecular autism. 2014;5(1):48.

Dimitriadou M, Michaelides MP, Bateman A, Constantinidou F. Measurement of everyday dysexecutive symptoms in normal aging with the Greek version of the Dysexecutive Questionnaire-Revised. Neuropsychological Rehabilitation. 2018; 16 10.1080/09602011.2018.1543127 (link)

Dudas RB, Lovejoy C, Cassidy S, Allison C, Smith P, and Baron-Cohen S. The overlap between autistic spectrum conditions and borderline personality disorder. PLoS ONE. 2017 12(9): e0184447 (PDF).

Dunn V. Young people, mental health practitioners and researchers co-produce a Transition Preparation Programme to improve outcomes and experience for young people leaving Child and Adolescent Mental Health Services (CAMHS). 2017. BMC Health Services Research. 17(1):293. doi: 10.1186/s12913-017-2221-4.(PDF).

Dunn V. and Mellor T. Creative, participatory projects with young people: Reflections over five years. Research for All. 2017. 1:(2), 284-299 (PDF)

Farrington C, Clare ICH, Holland AJ, Barrett M, and Oborn, E. Knowledge exchange and integrated services: experiences from an integrated community intellectual (learning) disability service for adults. Journal of Intellectual Disability Research2015; 59: 238–247. doi: 10.1111/jir.12131.

Fistein EC., Clare IC., Redley M., and Holland AJ.Tensions between policy and practice: A qualitative analysis of decisions regarding compulsory admission to psychiatric hospital. International Journal of Law Psychiatry. 2016;46:50-7. doi: 10.1016/j.ijlp.2016.02.029.

Longworth-Ford CE., Malley D., Bateman A., Clare ICH., Wagner AP., and Gracey F. Selection and Visualization of outcome measures for complex post-acute acquired brain injury interventions. NeuroRehabilitation. 2016. 39; 65–79. DOI: 10.3233/NRE-161339. (Link)

Gibson J, Kelvin R, and Goodyer I. A call for greater transparency in health policy development: observations from an analysis of child and adolescent mental health policy Evidence & Policy: A Journal of Research, Debate and Practice 2015 11(1):7-18.

Goodwin RA., Lincoln NB., and Bateman A. Dysexecutive symptoms and carer strain following acquired brain injury: Changes measured before and after holistic neuropsychological rehabilitation.  NeuroRehabilitation. 2016.    DOI: 10.3233/NRE-161338.

Goodwin RA, Lincoln NB, and Bateman A. Dysexecutive symptoms and carer strain following acquired brain injury: Changes measured before and after holistic neuropsychological rehabilitation. NeuroRehabilitation. 2016. 18;39(1):53-64. doi: 10.3233/NRE-161338 (PDF).

Gracey F, Malley D, Wagner AP, and Clare ICH. “Characterising neuropsychological rehabilitation service users for service design.” Social Care and Neurodisability 5, no. 1 (2014): 16-28.

Gracey F, Fish JE, Greenfield E, Bateman A, Malley D, Hardy G, Inhgam J, Evans JJ, Manly T.  A Randomized Controlled Trial of Assisted Intention Monitoring for the Rehabilitation of Executive Impairments Following Acquired Brain Injury. Neurorehabilitation and Neural Repair 2016. 1-11. DOI: 10.1177/1545968316680484 (PDF).

Grove R, Baillie A, Allison C, Baron-Cohen S, Hoekstra RA. The latent structure of cognitive and emotional empathy in individuals with autism, first-degree relatives and typical individuals. Molecular Autism. 2014;5:42.

Gustavo Cuberos-Urbano, Alfonso Caracuel, Carlos Valls-Serrano, Leticia García-Mochón, Fergus Gracey & Antonio Verdejo-García (2016): A pilot investigation of the potential for incorporating lifelong technology into executive function rehabilitation for enhanced transfer of self-regulation skills to everyday life, Neuropsychological Rehabilitation. (PDF).

Hull, L., Petrides, K.V., Allison, C. et al.“Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions J Autism Dev Disord (2017) 47: 2519. (PDF).

Illingworth, J. L., Watson, P., & Ring, H. (2014). Why do seizures occur when they do? Situations perceived to be associated with increased or decreased seizure likelihood in people with epilepsy and intellectual disability. Epilepsy & Behavior39, 78-84.

Kelly CL, Thomson K, Wagner AP, Waters JP, Thompson A, Jones S, Holland AJ, and Redley M. Investigating the widely held belief that men and women with learning disabilities receive poor quality healthcare when admitted to hospital: a single-site study of 30-day readmission rate. Journal of Intellectual Disability Research 2015. doi: 10.1111/jir.12193.

Lai MC, Lombardo MV, Ecker C, Chakrabarti B, Suckling J, Bullmore ET, et al. Neuroanatomy of Individual Differences in Language in Adult Males with Autism. Cerebral cortex (New York, NY : 1991). 2014 . doi:10.1093/cercor/bhu21.

Larson F V, Arrand JR, Tantam D, Jones PB, Holland AJ. Copy number variants in people with autism spectrum disorders and co-morbid psychosis. Eur J Med Genet [Internet]. 2018; 61:230–4 10.1016/j.ejmg.2017.12.005 (link)

Larson FV,  Lai MC,  Wagner AP, Baron-Cohen S , and Holland AJ . Testing the ‘Extreme Female Brain’ Theory of Psychosis in Adults with Autism Spectrum Disorder with or without Co-Morbid Psychosis. PLoS One 2015; 10(6):e0128102. doi: 10.1371/journal.pone.0128102. (link)

Larson FV, Wagner AP, Jones PB, Tantam D, Lai MC, Baron-Cohen S, and Holland AJ. Psychosis in autism: comparison of the features of both conditions in a dually affected cohort. The British Journal of Psychiatry Dec 2016, bjp.bp.116.187682; DOI: 10.1192/bjp.bp.116.187682 (PDF).

Lee, C. (2016). Preparing transition from child and adolescent mental health services (CAMHS): evaluating a creative participatory approach. Social Research Practice, 2 11-19. (PDF).

Lewis G, Jones PB, Goodyer IM. The ROOTS study: a 10 year review of findings on adolescent depression, and recommendations for future longitudinal research. Social Psychiatry and Psychiatric Epidemiology . 2016;51 (2), pp. 161-170. doi: 10.1007/s00127-015-1150-y. (PDF).

Lombardo MV, Lai MC, Auyeung B, Holt RJ, Allison C, Smith P, Chakrabarti B, Ruigrok ANV, Suckling J, Bullmore ET, Ecker C, Craig MC, Murphy D, Happe F, Baron-Cohen S. Unsupervised data-driven stratification of mentalizing heterogeneity in autism, April 2016, (PDF).

Longworth C, Deakins J, Rose D, and Gracey F (2016):The nature of self-esteem and its relationship to anxiety and depression in adult acquired brain injury, Neuropsychological Rehabilitation, DOI: 10.1080/09602011.2016.1226185 (PDF).

Manning KE, McAllister CJ, Ring HA, Finer N, Kelly CL, Sylvester KP, Fletcher PC, Morrell NW, Garnett MR, Manford MRA and Holland AJ. Novel insights into maladaptive behaviours in Prader–Willi syndrome: serendipitous findings from an open trial of vagus nerve stimulation. Journal of Intellectual Disability Research. 2015; doi: 10.1111/jir.12203 (PDF).

Memarzia J, St Clair M, Owens M, Goodyer IM, and Dunn VJ. Adolescents leaving mental health or social care services: predictors of mental health and psychosocial outcomes one year later. BMC Health Service Research. 2015; 15: 185. doi:  10.1186/s12913-015-0853-9.

Montgomery CB, Allison C, Lai MC, Cassidy S, Langdon PE, and Baron-Cohen S. J Autism Dev Disord. Do Adults with High Functioning Autism or Asperger Syndrome Differ in Empathy and Emotion Recognition? 2016 Jun;46(6):1931-40. doi: 10.1007/s10803-016-2698-4. (PDF).

Nishida A, Cadar D, Xu MK, Croudace T, Jones PB, Kuh D, Richards M. Adolescent self organisation and adult smoking and drinking over fifty years follow up: The British 1946 birth cohort. PLoS ONE. 2016; 11 (1), art. (PDF).

Perez CM, Ball SL, Wagner AP, Clare ICH, Holland AJ, and Redley M. The incidence of healthcare use, ill health and mortality in adults with intellectual disabilities and mealtime support needs. Journal of Intellectual Disability Research 2014; doi: 10.1111/jir.12167.

Perez CM, Wagner AP, Ball SL, White SR, Clare ICH, Holland AJ, and Redley M. Prognostic models for identifying adults with intellectual disabilities and mealtime support needs who are at greatest risk of respiratory infection and emergency hospitalisation. J Intellectual Disability Research. 2017. 61: 737–754. doi:10.1111/jir.12376 (PDF).

Perrin, P. B., Norup, A., Caracue, A., Bateman, A., Tjørnlund, M., & Arango-Lasprilla, J. C. An Actor-Partner Interdependence Model of Acquired Brain Injury Patient Impairments and Caregiver Psychosocial Functioning: A Dyadic-Report, Multi-National Study. Journal of Clinical Psychology. 2016.  doi: 10.1002/jclp.22324.

Perrin P, Norup A, Caracuel A, Bateman A, Tjørnlund M, and Arango-Lasprilla JC. An Actor–Partner Interdependence Model of Acquired Brain Injury Patient Impairments and Caregiver Psychosocial Functioning: A Dyadic-Report, Multinational Study. Journal of Clinical Psycology, Vol. 00(0), 1–15 (2016) C 2016 Wiley Periodicals, Inc. Published online in Wiley Online Library ( DOI: 10.1002/jclp.22324. (PDF).

Redley M, Pannebakker M, and Holland A. Redley, M. , Pannebakker, M. and Holland, A. (2018), Improving the Health and Well‐Being of Adults With Conditions of a Genetic Origin: Views from Professionals, Syndrome Support Groups and Parents. J Appl Res Intellect Disabil, 31: 62-75. doi:10.1111/jar.12293 (PDF).

Redley M, Pannebakker M and Holland A. Improving the Health and Well-Being of Adults With Conditions of a Genetic Origin: Views from Professionals, Syndrome Support Groups and Parents. 24 October 2016, DOI: 10.1111/jar.12293. (PDF).

Ring H, Gilbert N, Hook R, Platt A, Smith C, Irvine F, Donaldson C, Jones E, Kelly J, Mander A, Murphy C, Pennington M, Pullen A, Redley M, Rowe S, Wason J. Improving outcomes in adults with epilepsy and intellectual disability (EpAID) using a nurse-led intervention: study protocol for a cluster randomised controlled trial. Trials. 2016. 17:297 (PDF).

Ring H, Howlett J, Pennington M, Smith C, Redley M, Murphy C, et al. Training nurses in a competency framework to support adults with epilepsy and intellectual disability: the EpAID cluster RCT. Health Technol Assess 2018;22(10). (link)

Ruzich E, Allison C, Smith P, Watson P, Auyeung B, Ring H, et al. Measuring autistic traits in the general population: a systematic review of the Autism-Spectrum Quotient (AQ) in a nonclinical population sample of 6,900 typical adult males and females. Molecular autism. 2015;6:2.

Ruzich E, Allison C, Smith P, Ring H, Auyeung B, and Baron-Cohen S. The Autism-Spectrum Quotient in Siblings of People With Autism. Autism Research. 2016.   doi: 10.1002/aur.1651.

Ruzich E, Allison C, Smith P, Watson P, Augeung B, Ring H, and Baron- Cohen S. Subgrouping siblings of people with autism: Identifying the broader autism phenotype. DOI: 10.1002/aur.1544 (PDF).

Simblett SK, Gracey F, Ring H, and Bateman A. Measuring coping style following acquired brain injury: A modification of the Coping Inventory for Stressful Situations Using Rasch analysi. British Journal of Clinical Psychology 2014; 29.   doi: 10.1111/bjc.12070.

Simblett SK, Ring H, Bateman A.The Dysexecutive Questionnaire Revised (DEX-R): An extended measure of everyday dysexecutive problems after acquired brain injury. Neuropsychological Rehabilitation 2016; 19:1-18. doi:10.1080/09602011.2015.1121880.

Simblett SK, Yates M, Wagner AP, Watson P, Gracey F, Ring H, Bateman A.Computerized Cognitive Behavioral Therapy to Treat Emotional Distress After Stroke: A Feasibility Randomized Controlled Trial. JMIR Mental Health 2017;4(2):e16. DOI: 10.2196/mental.6022 (PDF)

St Clair, M. C., Croudace, T., Dunn, V. J., Jones, P. B., Herbert, J., & Goodyer, I. M. (2014). Childhood adversity subtypes and depressive symptoms in early and late adolescence. Development and psychopathology, 1-15.Sullivan JC, Tavassoli T, Armstrong K, Baron-Cohen S, Humphrey A. Reliability of self, parental, and researcher measurements of head circumference. Molecular autism. 2014;5(1):2.

Street AJ, Magee WL, Odell-Miller H,  Bateman A, Fachner JC. Home-based Neurologic Music Therapy for Upper Limb Rehabilitation with Stroke Patients at Community Rehabilitation Stage – a Feasibility Study Protocol. Frontiers in Human Neuroscience. 2015; 9:480 doi: 10.3389/fnhum.2015.00480.

Sun X, Allison C, Auyeung B, Matthews FE, Norton S, Baron-Cohen S, et al. Psychometric properties of the Mandarin version of the Childhood Autism Spectrum Test (CAST): an exploratory study. Journal of autism and developmental disorders. 2014; 44(7):156.

Sun X, Allison C, Auyeung B, Baron-Cohen S, Brayne C. Parental concerns, socioeconomic status, and the risk of autism spectrum conditions in a population-based study. Research in developmental disabilities. 2014; 35: 3678–3688.

Sun X, Allison C, Auyeung B, Matthews FE, Zhang Z, Baron-Cohen S, et al. Comparison between a Mandarin Chinese version of the Childhood Autism Spectrum Test and the Clancy Autism Behaviour Scale in mainland China. Research in developmental disabilities. 2014; 35(7):1599-1608.

Sun X, Allison C, Auyeung B, Zhang Z, Matthews FE, Baron-Cohen S, et al. Validation of existing diagnosis of autism in mainland China using standardised diagnostic instruments. Autism:the international journal of research and practice. 2015 DOI: 10.1177/1362361314556785.

Tavassoli T, Hoekstra RA, Baron-Cohen S. The Sensory Perception Quotient (SPQ): development and validation of a new sensory questionnaire for adults with and without autism. Molecular autism. 2014;5:29.

Uzefovsky F, Allison C, Smith P, and Baron-Cohen S. Brief Report: The Go/No-Go Task Online: Inhibitory Control Deficits in Autism in a Large Sample. J Autism Dev Disord. 2016 Aug;46(8):2774-9. doi: 10.1007/s10803-016-2788-3. (PDF).

Wagner AP, Croudace TJ, Bateman N, Pennington MW, Prince E, et al. (2017) Clinical services for adults with an intellectual disability and epilepsy: A comparison of management alternatives. PLOS ONE 12(7) (PDF)

Wakeford S, Hinvest N, Ring H, and Brosnan, M. Autistic characteristics in adults with epilepsy. Epilepsy and Behavior 2014; 41: 203-207.

Wilkinson PO, Cestaro V, Pinchen I Pilot mixed-methods evaluation of interpersonal counselling for young people with depressive symptoms in non-specialist services Evidence-Based Mental Health 2018;21:134-138. (link)

Whittington, J. E., Holland, A. J., and Webb, T. (2014). Ageing in people with Prader-Willi syndrome: mortality in the UK population cohort and morbidity in an older sample of adults. Psychological medicine, 1-7.

Ypma R, Moseley R, Holt RJ, Rughooputh N, Floris D, Chura LR, Spencer M, Baron-Cohen S, Suckling J, Bullmore E, and Rubinov Default Mode Hypoconnectivity Underlies a Sex-Related Autism Spectrum M.2016 Jul;1(4):364-371. (PDF).

Larson FV, Wagner AP, Jones PB, Tantam D, Lai MC, Baron-Cohen S and Holland AJ. Psychosis in autism: comparison of the features of both conditions in a dually affected cohort. The British Journal of Psychiatry Apr 2017, 210 (4) 269-275; DOI: 10.1192/bjp.bp.116.187682 (PDF)

Health Economics

Crossman-Barnes C-J, Peel A, Fong-Soe-Khioe R, Sach T, Wilson A, Barton G. Economic evidence for nonpharmacological asthma management interventions: A systematic review. Allergy. 2018;73:1182– 1195. (PDF)

Crossman-Barnes, CJ., Sach, T., Wilson, A. et al. Health Qual Life Outcomes. 2019. 17:58. (link)

Fend Y, Devlin N, Bateman A, Zamora B, and Parkin D.The Distribution of the WQ-5D-5L indez in Patient Populations. Office of Health Economics. 2016. (PDF)

Littlejohns P, Chalkidou K, Culyer AJ, Weale A, Rid A, Kieslich K, Coultas C, Max C, Manthorpe J, Rumbold B, Charlton V, Roberts H, Faden R, Wilson J, Krubiner C, Michell P, Wester G, Whitty JA and Knight S. National Institute for Health and Care Excellence, social values and healthcare priority setting. Journal of the Royal Society of Medicine. 2019; 26(3). 363-371. Available from: doi: 10.1108/14777261211239007 (PDF)

Sach T, Desborough J, Houghton J and Holland R. A comparison of two sources of primary and social care resource use data in a care home setting. Unit Costs of Health and Social Care 2018. (PDF)

Innovation and Evaluation

Anderson JK, Ford T, Soneson E, Thompson-Coon J, Humphrey A, Rogers M, Moore D, Jones PB, Clarke E and Howarth E. A systematic review of effectiveness and cost-effectiveness of school-based identification of children and adolescent at risk of, or currently experiencing mental health difficulties. Psychological Medicine. 2018. 1-11. (link)

Dickerson E, Fenge LA, and Rosenorn-Lanng E, (2017) “The impact of leadership development on GP mental health commissioning”, Leadership in Health Services, Vol. 30 Issue: 3, pp.343-351. (PDF)

Evans M, Gregory A, Feder G, Howarth E, and Hegarty K. “Even ‘Daily’ is Not Enough”: How Well Do We Measure Domestic Violence and Abuse?-A Think-Aloud Study of a Commonly Used Self-Report Scale. Violence and Victims 2016; 31(1):3-26.  doi: 10.1891/0886-6708.VV-D-15-00024.

Galante, J et al. Effectiveness of providing university students with a mindfulness-based intervention to increase resilience to stress: a pragmatic randomised controlled trial.Lancet Public Health; 19 December 2017; DOI: 10.1016/S2468-2667(17)30231-1.(PDF).

Howarth E, Moore THM, Stanley N, et al. Towards an ecological understanding of readiness to engage with interventions for children exposed to domestic violence and abuse: Systematic review and qualitative synthesis of perspectives of children, parents and practitioners. Health Soc Care Community. 2018. doi:10.1111/hsc.12587 (link)

Howarth E, Moore THM, Shaw ARG, Welton NJ, Feder GS, Hester M, MacMillan HL, and Stanley N.  The Effectiveness of Targeted Interventions for Children Exposed to Domestic Violence: Measuring Success in Ways that Matter to Children, Parents and Professionals. Child Abuse Review 2015; 24: 297–310. doi: 10.1002/car.2408.

Howarth E, Moore THM, Welton NJ, Lewis N, Stanley N, MacMillan H, et al. IMPRoving Outcomes for children exposed to domestic ViolencE (IMPROVE): an evidence synthesis. Public Health Res 2016;4(10) (PDF).

Howarth E, Vainre M, Humphrey A, et al. Delphi study to identify key features of community-based child and adolescent mental health services in the East of England BMJ Open 2019;9:e022936. doi: 10.1136/bmjopen-2018-022936 (link)

Jacob R, Luen Wong AM, Hayhurst C, Watson P and Morrison CE. Designing services for frequent attenders to the emergency department: a characterisation of this population to inform service design Clinical Medicine 2016 Vol 16, No 4: 325–9 (PDF).

Khandaker M , Pearson RM, Zammit S, Lewis G, and Jones PB. Association of Serum Interleukin 6 and C-Reactive Protein in Childhood With Depression and Psychosis in Young Adult Life A Population-Based Longitudinal Study. JAMA Psychiatry 2014  doi:10.1001/jamapsychiatry.2014.1332.

Kirkbride JB, Hameed Y, Wright L, Russell K, Knight C, Perez J, and Jones PB. (2017) Waiting time variation in Early Intervention Psychosis services: longitudinal evidence from the SEPEA naturalistic cohort study. Social Psychiatry and Psychiatric (PDF).

Lee C, Haggith A, Mann N, Kuhn I, Cater F, Eden B, and Van Bortel T. Older Prisoners and the Care Act 2014: An examination of policy, pratice and models of social care delivery. Prison Service Journal 2016; 224: 35-41.

Lewis NV, Feder GS, Howarth E, Szilassy E, McTavish JR, MacMillan HL. and Wathen N. Identification and initial response to children’s exposure to intimate partner violence: a qualitative synthesis of the perspectives of children, mothers and professionals. BMJ Open. 2018 Apr 28;8(4):e019761. (link)

Lombardo C, Van Bortel T, Wagner AP, et al. PROGRESS: the PROMISE governance framework to decrease coercion in mental healthcare BMJ Open Qual. 2018;7:e000332. doi:10.1136/bmjoq-2018-000332 (link)

Maxwell S, Ugochukwu O, Clarke T, Gee B, Clarke E, Westgate H, Wilson J, Lennox BR and Goodyer I. The effect of a youth mental health service model on access to secondary mental healthcare for young people aged 14–25 years. BJPsych Bulletin, 2018. 1-5. doi:10.1192/bjb.2018.70 (link)

Neufeld S, Dunn VJ, Jones PB, Croudace TJ, and Goodyer IM. R

eduction in adolescent depression after contact with mental health services: a longitudinal cohort study in the UK. January 10, 2017 S2215-0366(17)30002-0 (PDF).

Ruzich E, Allison C, Smith P, Ring H, Auyeung B, and Baron-Cohen S The Autism-Spectrum Quotient in Siblings of People With Autism Autism Res. 2016 Jun 22. doi: 10.1002/aur.165.(PDF).

Soneson E, Child-Fegredo J, Anderson JK, Stochal J, Fazel M, Ford T, Humphrey A, Jones PB, Howarth E. Acceptability of screening Acceptability of screening for mental health difficulties in primary schools: a survey of UK parents. BMC Public Health. 2018 Dec; 18(1):1404. (link)

Stochl J, Soneson E, Wagner A, Khandaker G, Goodyer I, and Jones P. Identifying key targets for interventions to improve psychological wellbeing: Replicable results from four UK cohorts. Psychological Medicine. 2018. 1-8. doi:10.1017/S0033291718003288 (link)

Stochl J, Whittier A, Wagner AP, Veijola J, Jääskeläinen E, Miettunen J, Khandaker G et al. Association between developmental milestones and age of schizophrenia onset: Results from the Northern Finland Birth Cohort 1966. Schizophrenia research. 2019. doi:10.1016/j.schres.2019.02.013 (link)

Street AJ, Magee WL, Odell-Miller H, Bateman A , and Fachner JC. Home-based Neurologic Music Therapy for Upper Limb Rehabilitation with Stroke Patients at Community Rehabilitation Stage – a Feasibility Study Protocol. Frontiers in Human Neuroscience. 2015; 9:480 doi: 10.3389/fnhum.2015.00480 (PDF).

Wilson C, Rouse L. Rae S, & Kar Ray M. Is restraint a ‘necessary evil’ in mental health care? Mental health inpatients’ and staff members’ experience of physical restraint. Int. Journal of Mental Health Nursing. 2017. 26: 500–512. doi:10.1111/inm.12382

Wilson C, Rouse L. Rae S, & Kar Ray M. Mental health inpatients’ and staff members’ suggestions for reducing physical restraint: A qualitative study. Journal of Psychiatric and Mental Health Nursing. 2018. [Epub ahead of print]. doi:10.1111/jpm.12453

Patient and Public Involvement

Backhouse T, Kenkmann A, Lane K, Penhale B, Poland F, and Killet A. Older care-home residents as collaborators or advisors in research: a systematic review. Age and Ageing, 2016; 0:1–9 doi: 10.1093/ageing/afv201. (PDF).

Keenan J, Poland F, Boote J, Howe A, Wythe H, Varley A, Vicary P, Irvine L, Wellings A. ‘We’re passengers sailing in the same ship, but we have our own berths to sleep in’: Evaluating patient and public involvement within a regional research programme: An action research project informed by Normalisation Process Theory. PLoS One. 2019 May 14;14(5):e0215953. doi: 10.1371/journal.pone.0215953.  (link)

Marks S, Mathie E, Smiddy J, Jones J and da Silva-Gane M. Reflections and experiences of a co-researcher involved in a renal research study. Research Involvement and Engagement. 2018;4:36. doi:10.1186/s40900-018-0120-4 (link)

Mathie E, Wythe H, Munday D, Rhodes G, Vicary P, Millac P and Jones J. Regional working in the East of England: using the UK National Standards for Public Involvement. Research Involvement and Engagement. 2018, 4:48 (link)

Mathie E, Wythe H, Munday D, Millac P, Rhodes G, Roberts N, Smeeton N, Poland F and Jones J. Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study. Health Expect. 2018;00:1–10. (link)

Patient Safety

Card AJ, Simsekler MCE, Clark M, Ward JR, Clarkson PJ. Use of the Generating Options for Active Risk Control (GO-ARC) Technique Can Lead to More Robust Risk Control Options. Int J Risk Saf Med. International Journal of Risk and Safety in Medicine 2014; 26: 199-211.

Card AJ, Ward JR, and Clarkson PJ. Rebalancing risk management—Part 1: The Process for Active Risk Control (PARC). Journal of Healthcare Risk Management 2014; 34: 21–30. doi: 10.1002/jhrm.21155.

Card AJ, Ward JR, Clarkson PJ. Rebalancing Risk Management-Part 2: The Active Risk Control (ARC) Toolkit . J Healthc Risk Manag. 2015;34(3):4-17.

Jun GT, Canham A, Altuna-Palacios A, Ward JR, Bharma R, Rogers S, Dutt A and Shah P. A participatory systems approach to design for safer integrated medicine management. Ergonomics. 2017. 61(1), 48-68 doi:10.1080/00140139.2017.1329939

Kaya GK, Ward JR, Clarkson PJ. A framework to support risk assessment in hospitals. Int J Qual Health Care. 2018 Sep 1. doi: 10.1093/intqhc/mzy194 (PDF)

Kaya GK, Ward J, Clarkson J. A Review of Risk Matrices Used in Acute Hospitals in England. Risk Anaylsis: an official publication of the Society for Risk Analysis. 2018 November 5. doi: 10.1111/risa.13221

Komashie A, Mousavi A, Clarkson PJ, and Young, T. An Integrated Model of Patient and Staff Satisfaction Using Queuing Theory IEEE Journal of Translational Engineering in Health and Medicine 2015 doi: 10.1109/JTEHM.2015.2400436.(PDF)

Liu Y, Dickerson T, Early F, Fuld J. and Clarkson PJ. Understanding influences on the uptake of pulmonary rehabilitation in the UK: an Inclusive Design / mixed-methods study protocol. BMJ Open. 2018. 8(4) :e020750 doi: 10.1136/bmjopen-2017-020750.

Ruggeri K, Wollner P. Transatlantic health IT policies: opportunities for small businesses and health systems. Telemedicine Journal and E-Health. 2014 Jun;20(6):601–3. doi:10.1089/tmj.2013.0322.

Simsekler ME, Card AJ, Ruggeri K, Ward JR, Clarkson PJ. A comparison of the methods used to support risk identification for patient safety in one UK NHS foundation trust. Clinical Risk. 2015 Mar 1;21(2-3):37–46.

Simsekler MCE, Kaya GK, Ward JR, Clarkson PJ. Evaluating inputs of failure modes and effects analysis in identifying patient safety risks. International Journal of Health Care Quality Assurance. 2019 32 (1), 191-207  doi:10.1108/IJHCQA-12-2017-0233 (link)