An Evaluation of the Implementation of Hand Held Health Records with Adults with Learning Disabilities: A Cluster Randomized Controlled Trial

Journal of Applied Research in Intellectual Disabilities

Volumn 23, Issue 2, 2010, Pages 100-111

  Turk, Vicky ^a   Burchell, Sarah ^a   Burrha, Sukhjinder ^a   Corney, Roslyn ^b   Elliott, Sandra ^b   Kerry, Sally ^c   Molloy, Catherine ^a   Painter, Kerry ^a  

^a OXLEAS NHS FOUNDATION TRUST   (United Kingdom)

^b UNIVERSITY OF GREENWICH   (United Kingdom)

^c ST GEORGE'S UNIVERSITY OF LONDON   (United Kingdom)

Author keywords

Hand held record; Patient centred care; Primary health care; Randomized controlled trial

Indexed keywords

EID: 77953892495     PISSN: 13602322     EISSN: 14683148     Source Type: Journal    
DOI: 10.1111/j.1468-3148.2009.00518.x     Document Type: Article

References (38)

1. Altman D G. Practical Statistics for Medical Research 1991, Chapman and Hall, London
2. Bittles A H, Petterson B A, Sullivan S G, Hussain R, Glasson E J, Montgomery P D. The influence of intellectual disability on life expectancy. Journal of Gerontology 2002, 57A:M470-M472.
3. Bland J M, Kerry S M. Weighted control of means. British Medical Journal 1998, 316:129.
4. Involving Consumers in Research & Development in the NHS: Briefing Note for Researchers 2000, Consumers in NHS Research Support Unit, Eastleigh, UK
5. Cooper S A, Morrison J, Melville C, Finlayson J, Allan L, Martin G, Robinson N. Improving the health of people with intellectual disabilities: outcomes of a health screening programme after 1 year. Journal of Intellectual Disability Research 2006, 50:667-677.
6. Cowie M, Fletcher J. Breast awareness project for women with a learning disability. Journal of Nursing 1998, 7:774-778.
7. Davis T M E, Bridgford A. A comprehensive patient-held record for diabetes. Part two: large-scale assessment of the Diabetes Databank by patients and health care workers. Practice Diabetes International 2001, 18:311-314.
8. Valuing People: A New Strategy for Learning Disability for the 21st Century 2001, Department of Health, London
9. Drury M, Yudkin P, Harcourt J, Fitzpatrick R, Jones L, Alcock C, Minto M. Patients with cancer holding their own records: a randomised controlled trial. British Journal of General Practice 2000, 50:105-110.
10. Emerson E, Robertson J. An Evaluation of the Impact of Person Centred Planning - Client Service Receipt Inventory (PCP) 2002, Institute for Health Research, Lancaster University
11. Felce D, Baxter H, Lowe K, Dunstan F, Houston H, Jones G, Grey J, Felce J, Kerr M. The impact of checking the health of adults with intellectual disabilities on primary consultation rates, health promotion and contact with specialist. Journal of Applied Research in Intellectual Disabilities 2008, 21:597-602.
12. Hollins S, Attard M T, von Fraunhofer N, McGuigan S, Sedgwick P. Mortality in people with learning disability: risks, causes, and death certification findings in London. Developmental Medicine and Child Neurology 1998, 40:50-56.
13. Holmes N, Shah A, Wing L. The Disability Assessment Schedule: a brief screening device for use with the mentally retarded. Psychological Medicine 1982, 12:879-890.
14. Jeffs D, Nossar V, Bailey F, Smith W, Chey T. Retention and use of personal health records: a population-based study. Journal of Paediatrics & Child Health 1994, 30:248-252.
15. Jones R G, Kerr M P. A randomized control trial of an opportunistic health screening tool in primary care for people with intellectual disability. Journal of Intellectual Disability Research 1997, 41:409-415.
16. Kerr M, Felce D, Felce J. Equal Treatment: Closing the Gap 2005, Final Report from the Welsh Centre for Learning Disabilities to the Disability Rights Commission, University of Cardiff, Cardiff
17. Langan J, Russell O. Community Care and the General Practitioner: Primary Health Care for People with Learning Disabilities 1993, Summary of final report to the Department of Health, Norah Fry Research Centre, Bristol
18. Lennox N, Rey-Conde T, Bain C, Purdie D, Bush R. Are a health advocacy diary and health assessment welcomed by those who use them? Journal of Intellectual Disability Research 2004a, 48:340-367.
19. Lennox N, Taylor M, Rey-Conde T, Bain C, Boyle F M, Purdie D. Ask for it: development of a health advocacy intervention for adults with intellectual disability and their general practitioners. Health Promotion International 2004b, 19:167-175.
20. Lennox N, Bain C, Rey-Conde T, Purdie D, Bush R, Pandeya N. Effects of a comprehensive health assessment programme for Australian adults with intellectual disabilities; a cluster randomised trial. International Journal of Epidemiology 2007, 36:139-146.
21. Lennox N, Rey-Conde T, Faint S L. A pilot of interventions to improve health care in adolescents with intellectual disability. Journal of Applied Research in Intellectual Disabilities 2008, 21:484-489.
22. Matthews D, Hegarty J. The 'OK' health check: a health assessment checklist for people with learning disabilities. British Journal of Learning Disabilities 1997, 25:138-143.
23. Nocon A. Background Evidence for the DRC's Formal Investigation into Health Inequalities Experienced by People with Learning Disabilities and People with Mental Health Problems 2006, Disability Rights Commission, London & Manchester
24. Living in Britain, Results from the 1994 General Household Survey 1996, HMSO, London
25. The English Indices of Deprivation (Revised) 2004, ODPM Publications, Wetherby
26. Personal Health Profile. 2004, http://www.oxleas.nhs.uk/gps-referrers/learning-disability-services, Available at: (accessed on 17 July 2009
27. Rapley M. Black swans: conversation analysis of interviews with people with learning disabilities. Clinical Psychology Forum 1995, 84:17-22.
28. Samele C, Seymour L, Morris B, Cohen A, Emerson E. A Formal Investigation into Health Inequalities Experienced by People with Learning Disabilities and People with Mental Health Problems. Area Studies Report 2006, Disability Rights Commission, London
29. van Schrojenstein Lantman - de Valk H M J, Metsemakers J F M, Haveman M J, Crebolder J F J M. Health problems in people with intellectual disability in general practice: a comparative study. Family Practice 2000, 17:405-407.
30. Stein K, Allen N. Cross sectional survey of cervical cancer screening in women with learning disability. British Medical Journal 1999, 318:641.
31. Straetmans J, van Schrojenstein H M J, Schellevis F G, Dinant G. Health problems of people with intellectual disabilities: the impact for general practice. British Journal of General Practice 2007, 57:64-66.
32. Tobacman J K, Nolan P. Utilisation of a personal health record in a general medicine clinic. Journal of General Internal Medicine 1996, 11:370-372.
33. Turk V, Burchell S. Developing and evaluating personal health records for adults with learning disabilities. Tizard Learning Disability Review 2003, 8:33-41.
34. Walmsley J. Involving users with learning disabilities in health improvement: lessons from inclusive learning disability research. Nursing Enquiry 2004, 11:54-64.
35. Welsh Office. Welsh Health Survey 1995 1995, Welsh Office, Cardiff
36. Whitfield M, Langan J, Russell O. Assessing general practitioners' care of adult patients with learning disability: case-control study. Quality in Health Care 1996, 5:31-35.
37. Williams V. User-Led Research with People with Learning Disabilities; An Introduction and Practical Guide for Researchers & Practitioners 2003, Centre for Evidence-based Social Services, Exeter
38. Williams V, England M. Supporting people with learning disabilities to do their own research. Involving Service Users in Health and Social Care Research 2005, 30-40. Lowes L, Hulatt I. eds, pp, Routledge, Abingdon