Why are they waiting? Exploring professional perspectives and developing solutions to delayed diagnosis of autism spectrum disorder in adults and children

Research in Autism Spectrum Disorders

Volumn 31, Issue , 2016, Pages 53-65

  Rutherford, Marion ^a,b   McKenzie, Karen ^c   Forsyth, Kirsty ^a   McCartney, Deborah ^a   O'Hare, Anne ^d   McClure, Iain ^b,d   Irvine, Linda ^b  

^a QUEEN MARGARET UNIVERSITY   (United Kingdom)

^b NHS LOTHIAN   (United Kingdom)

^c NORTHUMBRIA UNIVERSITY   (United Kingdom)

^d UNIVERSITY OF EDINBURGH   (United Kingdom)

Author keywords

Autism spectrum disorder; Diagnostic assessment; Focus groups; Wait times

Indexed keywords

ADULT; ARTICLE; AUTISM; CHILD; CLINICAL ARTICLE; CLINICAL PSYCHOLOGY; COMPARATIVE STUDY; CONTROLLED STUDY; DELAYED DIAGNOSIS; EVIDENCE BASED PRACTICE; FEMALE; HUMAN; MALE; PATIENT REFERRAL; PREVENTIVE HEALTH SERVICE; PRIORITY JOURNAL; QUALITATIVE ANALYSIS; TOTAL QUALITY MANAGEMENT;

EID: 84982699570     PISSN: 17509467     EISSN: 18780237     Source Type: Journal    
DOI: 10.1016/j.rasd.2016.06.004     Document Type: Article

References (61)

1. Abrines-Jaume, N., Midgley, N., Hopkins, K., Hoffman, J., Martin, K., Law, D., Wolpert, M., A qualitative analysis of implementing shared decision making in child and adolescent mental health services in the United Kingdom: stages and facilitators. Clinical Child Psychology and Psychiatry 21:1 (2014), 19–31.
2. Antunes, V., Moreira, J.P., Skill mix in healthcare: an international update for the management debate?. International Journal of Healthcare Management 6:1 (2013), 12–17.
3. Baio, J. (2012). Prevalence of autism spectrum disorders: autism and developmental disabilities monitoring network, 14 sites, United States, 2008. Morbidity and Mortality Weekly Report. Surveillance Summaries, 61(3), Centers for Disease Control and Prevention.
4. Baker, D.P., Day, R., Salas, E., Teamwork as an essential component of high-reliability organizations. Health Services Research 41:4 (2006), 1576–1598.
5. Blank, L., Peter, J., Pickvance, S., Wilford, J., MacDonald, E., A systematic review of the factors which predict return to work for people suffering episodes of poor mental health. Journal of occupational rehabilitation 18:1 (2008), 27–34.
6. Bowling, A., Research methods in health: investigating health and health services. 2014, McGraw-Hill Education, UK.
7. Carbone, P.S., Behl, D.D., Azor, V., Murphy, N.A., The medical home for children with autism spectrum disorders: parent and pediatrician perspectives. Journal of autism and developmental disorders 40:3 (2010), 317–324.
8. Carpenter, P., Diagnosis and assessment in autism spectrum disorders. Advances in Mental Health and Intellectual Disabilities 6:3 (2012), 121–129.
9. Coghill, D., Seth, S., Effective management of attention-deficit/hyperactivity disorder (ADHD) through structured re-assessment: the Dundee ADHD clinical care pathway. Child and adolescent psychiatry and mental health 9:1 (2015), 1–14.
10. Constantino, J.N., Social responsiveness scale. 2005, Western Psychological Services, Los Angeles.
11. Crane, L., Chester, J. W., Goddard, L., Henry, L. A., Hill, E. (2016). Experiences of autism diagnosis: a survey of over 1000 parents in the United Kingdom. Autism, 1362361315573636.
12. Creswell, J.W., Miller, T.L., Getting good qualitative data. Theory into practice 39:3 (2000), 124–130.
13. Creswell, J.W., Klassen, A.C., Plano Clark, V.L., Smith, K.C., Best practices for mixed methods research in the health sciences. 2011, National Institutes of Health, Bethesda (Maryland), 2094–2103.
14. Davies, M., Elwyn, G., Referral management centres: promising innovations or Trojan horses?. British Medical Journal 332:7545 (2006), 844–846.
15. Donato, C., Shane, H.C., Hemsley, B., Exploring the feasibility of the Visual Language in Autism program for children in an early intervention group setting: views of parents, educators, and health professionals. Developmental Neurorehabilitation 17:2 (2014), 115–124.
16. Fenikilé, T.S., Ellerbeck, K., Filippi, M.K., Daley, C.M., Barriers to autism screening in family medicine practice: a qualitative study. Primary Health Care Research & Development 16:4 (2015), 356–366.
17. Florian, L., Spratt, J., Enacting inclusion: a framework for interrogating inclusive practice. European Journal of Special Needs Education 28:2 (2013), 119–135.
18. Grol, R., Grimshaw, J., From best evidence to best practice: effective implementation of change in patients’ care. The lancet 362:9391 (2003), 1225–1230.
19. Gurol‐Urganci, I., De Jongh, T., Vodopivec-Jamsek, V., Atun, R., Car, J., Mobile phone messaging reminders for attendance at healthcare appointments. 2013, The Cochrane Library.
20. Guy, R., Hocking, J., Wand, H., Stott, S., Ali, H., Kaldor, J., How effective are short message service reminders at increasing clinic attendance? A meta-analysis and systematic review. Health Services Research 47:2 (2012), 614–632.
21. Husk, J., Achieving changes in practice from national audit: national audit of the organization of services for falls and bone health in older people. Journal of Evaluation in Clinical Practice 14:6 (2008), 974–978.
22. Kaplan, R.S., Porter, M.E., How to solve the cost crisis in health care. Harvard Business Review 89:9 (2011), 46–52.
23. Le Couteur, A., Baird, G., Mills, R., National autism plan for children (NAPC). 2003, National Autistic Society, London, UK.
24. Le Couteur, A., Lord, C., Rutter, M.I., The autism diagnostic interview-revised (ADI-R). 2003, Western Psychological Services, Los Angeles, CA.
25. Lingard, L., Albert, M., Levinson, W., Grounded theory, mixed methods, and action research. British Medical Journal, 7(August), 2008, 337.
26. Lit, S., Shek, D.T., Implications of social constructionism to counseling and social work practice. Asian Journal of Counseling 9:1 (2002), 105–130.
27. Matson, J.L., Beighley, J., Turygin, N., Autism diagnosis and screening: factors to consider in differential diagnosis?. Research in Autism Spectrum Disorders 6:1 (2012), 19–24.
28. McClure, I., Mackay, T., Mamdani, H., McCaughey, R., A comparison of a specialist autism spectrum disorder assessment team with local assessment teams. Autism 14:6 (2010), 589–603.
29. McKenzie, K., Forsyth, K., O'Hare, A., McClure, I., Rutherford, M., Murray, A., & Irvine, L. (2015a). The relationship between waiting times and ‘adherence’ to the Scottish Intercollegiate Guidelines Network 98 guideline in autism spectrum disorder diagnostic services in Scotland. Autism, 1362361315586136.
30. McKenzie, K., Forsyth, K., O'Hare, A., McClure, I., Rutherford, M., Murray, A., Irvine, L., Factors influencing waiting times for diagnosis of autism spectrum disorder in children and adults. Research in developmental disabilities 45 (2015), 300–306.
31. McKenzie, K., Rutherford, M., Forsyth, K., O'Hare, A., McClure, I., Murray, A.L., Irvine, L., The relation between practice that is consistent with NICE guideline 142 recommendations and waiting times within autism spectrum disorder diagnostic services. Research in Autism Spectrum Disorders 26 (2016), 10–15.
32. Melton, J., Forsyth, K., Freeth, D., A practice development programme to promote the use of the model of human occupation: contexts, influential mechanisms and levels of engagement amongst occupational therapists. British Journal of Occupational Therapy 73:11 (2010), 549–558.
33. Melton, J., Forsyth, K., Freeth, D., The individual practice development theory: an individually focused practice development theory that helps target practice development resources. Journal of Evaluation in Clinical Practice 18:3 (2012), 542–546.
34. Meyers, D.C., Durlak, J.A., Wandersman, A., The quality implementation framework: a synthesis of critical steps in the implementation process. American Journal of Community Psychology 50:3–4 (2012), 462–480.
35. Moh, T.A., Magiati, I., Factors associated with parental stress and satisfaction during the process of diagnosis of children with autism spectrum disorders. Research in Autism Spectrum Disorders 6:1 (2012), 293–303.
36. Murray, M., Berwick, D.M., Advanced access: reducing waiting and delays in primary care. Jama 289:8 (2003), 1035–1040.
37. National Institute for Health and Clinical Excellence [NICE], Autism: recognition, referral and diagnosis of children and young people on the autism spectrum [CG128]. 2011, NICE, London.
38. National Institute for Health and Clinical Excellence [NICE], Autism: recognition, referral, diagnosis and management of adults on the autism spectrum [CG23]. 2012, NICE, London.
39. National Institute of Health Care and Excellence (NICE), Autism overview. 2015, NICE [Available at: http://pathways.nice.org.uk/pathways/autism Accessed 10.12.15].
40. Onwuegbuzie, A.J., Dickinson, W.B., Leech, N.L., Zoran, A.G., A qualitative framework for collecting and analyzing data in focus group research. International Journal of Qualitative Methods 8:3 (2009), 1–21.
41. Oosterling, Wensing, M., Swinkels, S.H., Van Der Gaag, R.J., Visser, J.C., Woudenberg, T.,.. Buitelaar, J.K., Advancing early detection of autism spectrum disorder by applying an integrated two‐stage screening approach. Journal of Child Psychology and Psychiatry 51:3 (2010), 250–258.
42. Palmer, E., Ketteridge, C., Parr, J.R., Baird, G., Le Couteur, A., Autism spectrum disorder diagnostic assessments: improvements since publication of the national autism plan for children. Archives of Disease in Childhood 96 (2011), 473–475.
43. Pentland, D., Forsyth, K., Maciver, D., Walsh, M., Murray, R., Irvine, L., Sikora, S., Key characteristics of knowledge transfer and exchange in healthcare: integrative literature review. Journal of Advanced Nursing 67:7 (2011), 1408–1425.
44. Pentland, D., Forsyth, K., Maciver, D., Walsh, M., Murray, R., Irvine, L., Enabling integrated knowledge acquisition and management in health care teams. Knowledge Management Research & Practice 12:4 (2014), 362–374.
45. Radnor, Z.J., Holweg, M., Waring, J., Lean in healthcare: the unfilled promise?. Social science & medicine 74:3 (2012), 364–371.
46. Rogers, C.L., Goddard, L., Hill, E.L., Henry, L.A., Crane, L., Experiences of diagnosing autism spectrum disorder: a survey of professionals in the United Kingdom. Autism, 2015 [1362361315611109].
47. Rose, K.D., Ross, J.S., Horwitz, L.I., Advanced access scheduling outcomes: a systematic review. Archives of Internal Medicine 171:13 (2011), 1150–1159.
48. Rotter, T., Kinsman, L., James, E., Machotta, A., Willis, J., Snow, P., Kugler, J., The effects of clinical pathways on professional practice, patient outcomes, length of stay, and hospital costs: Cochrane systematic review and meta-analysis. Evaluation & The Health Professions, 2011 [0163278711407313].
49. Rutherford, M., McKenzie, K., Johnson, T., Catchpole, C., O'Hare, A., McClure, I., Forsyth, K., McCartney, D., & Murray, A. (2016). Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder. Autism, 1362361315617879.
50. Rutherford, M., McKenzie, K., McClure, I., O'Hare, A., Forsyth, K., McCartney, D., Murray, A. (in press) A national study to investigate the clinical use of standardised instruments in autism spectrum disorder assessment of children and adults. Research in Autism Spectrum Disorders.
51. Rutter, M., DiLavore, P.C., Risi, S., Gotham, K., Bishop, S., Autism diagnostic observation schedule: ADOS-2. 2012, Western Psychological Services, Los Angeles, CA.
52. Scottish Intercollegiate Guidelines Network (SIGN), Assessment, diagnosis and clinical interventions for children and young people with autism spectrum disorders. 2007, SIGN, Edinburgh, 98.
53. Qualitative research. Silverman, D., (eds.), 2010, Sage.
54. The Scottish Government, The Scottish strategy for autism. 2011, HMSO, Edinburgh.
55. Vachon, B., Désorcy, B., Gaboury, I., Camirand, M., Rodrigue, J., Quesnel, L., Guimond, C., Grimshaw, J., Combining administrative data feedback, reflection and action planning to engage primary care professionals in quality improvement: qualitative assessment of short term program outcomes. BMC Health Services Research, 15(1), 2015, 1.
56. Vaismoradi, M., Turunen, H., Bondas, T., Content analysis and thematic analysis: implications for conducting a qualitative descriptive study. Nursing & Health Sciences 15:3 (2013), 398–405.
57. Vanhaecht, K., Ovretveit, J., Elliott, M.J., Sermeus, W., Ellershaw, J., Panella, M., Have we drawn the wrong conclusions about the value of care pathways? Is a Cochrane review appropriate?. Evaluation & The Health Professions 35:1 (2012), 28–42.
58. Ward, D.J., Furber, C., Tierney, S., Swallow, V., Using framework analysis in nursing research: a worked example. Journal of Advanced Nursing 69:11 (2013), 2422–2423.
59. Wiek, A., Iwaniec, D., Quality criteria for visions and visioning in sustainability science. Sustainability Science 9:4 (2014), 497–512.
60. Wilkinson, J., Daly, M., Reasons for non-attendance: audit findings from a nurse-led clinic. J Primary Health Care 4:1 (2012), 39–44.
61. Wing, L., Leekam, S.R., Libby, S.J., Gould, J., Larcombe, M., The diagnostic interview for social and communication disorders: background, inter-rater reliability and clinical use. Journal of Child Psychology and Psychiatry 43:3 (2002), 307–325.