Adolescent rheumatology transition care in the UK

Pediatric Annals

Volumn 41, Issue 5, 2012, Pages

  McDonagh, Janet E ^a   Shaw, Karen L ^b  

^a BIRMINGHAM CHILDREN S HOSPITAL   (United Kingdom)

^b UNIVERSITY OF BIRMINGHAM   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT DISEASE; ARTICLE; CHILD CARE; HEALTH CARE QUALITY; HEALTH CARE UTILIZATION; HEALTH INSURANCE; HEALTH SERVICE; HUMAN; JUVENILE RHEUMATOID ARTHRITIS; MEDICAL PERSONNEL; MOBILIZATION; OCCUPATIONAL THERAPIST; PARENTAL ATTITUDE; RHEUMATIC DISEASE; RHEUMATOLOGY; SCHEUERMANN DISEASE; SELF CARE; SOCIAL LIFE; SPONDYLOLISTHESIS; SYSTEMIC LUPUS ERYTHEMATOSUS; UNITED KINGDOM;

ADOLESCENT; ADOLESCENT HEALTH SERVICES; CHRONIC DISEASE; EDUCATION, MEDICAL, CONTINUING; EVIDENCE-BASED MEDICINE; GREAT BRITAIN; HUMANS; PARENT-CHILD RELATIONS; PARENTS; RHEUMATIC DISEASES; SELF CARE; TRANSITION TO ADULT CARE;

EID: 84861914174     PISSN: 00904481     EISSN: None     Source Type: Journal    
DOI: 10.3928/00904481-20120426-15     Document Type: Article

References (83)

1. Churchill D, Allen J, Pringle M, Hippisley-Cox J, Ebdon D, Macpherson M, Bradley S. Consultation patterns and provision of contraception in general practice before teenage pregnancy: case-control study. BMJ. 2000;321:486-489.
2. Jandial S, Myers A, Wise E, Foster HE. Doctors likely to encounter children with musculoskeletal complaints have low confidence in their clinical skills. J Pediatr. 2009;154(2):267-271.
3. Cassidy JT, Petty RE, Laxer R, Lindsley C. Textbook of Pediatric Rheumatology. 6th edition. Elsevier, 2011
4. Adam V, St-Pierre Y, Fautrel B, Clarke AE, Duffy CM, Penrod JR. What is the impact of adolescent arthritis and rheumatism? Evidence from a national sample of Canadians. J Rheumatol. 2005;32(2): 354-361.
5. Arkela-Kautiainen M, Haapasaari J, Kautiain-en H, et al. Functioning and preferences for improvement of health among patients with juvenile idiopathic arthritis in early adulthood using the WHO ICF model. J Rheumatol. 2006;33(7):1369-76.
6. Skarin A, Elborgh R, Edlund E, Bengtsson-Stigmar E. Long-term follow-up of patients with uveitis associated with juvenile idio-pathic arthritis: a cohort study. Ocul Immunol Infamm. 2009;17(2):104-8.
7. Foster HE, Marshall N, Myers A, Dunkley P, Griffths ID. Outcome in adults with juvenile idiopathic arthritis. Arthritis Rheum. 2003;48:767-775.
8. Gerhardt CA, McGoron KD, Vannatta K, et al. Educational and occupational outcomes among young adults with juvenile idiopathic arthritis. Arthritis Rheum. 2008;59(10):1385-1391.
9. Maslow GR, Haydon A, McRee AL, Ford CA, Halpern CT. Growing up with a chronic illness: social success, educational/vocational distress. J Adolesc Health. 2011;49(2):206-212.
10. Duguépéroux I, Tamalet A, Sermet-Gaudelus I, Le Bourgeois M, Gérardin M, Desmazes-Dufeu N, Hubert D. Clinical changes of patients with cystic fibrosis during transition from pediatric to adult care. J Adol Health. 2008;43:459-465.
11. Shaw KL, Hackett J, Southwood TR, Mc-Donagh JE. The Prevocational and Early employment needs of adolescents with juvenile idiopathic arthritis: the occupational therapy perspective. Br J Occupational Therapy. 2006;69:497-504.
12. Shaw KL, Hackett J, Southwood TR, Mc-Donagh JE. The Prevocational and Early employment needs of adolescents with juvenile idiopathic arthritis: the adolescent perspective. Br J Occupational Therapy. 2006;69(3):98-105.
13. Minden K, Niewerth M, Listing J, Bieder-mann T, Schontube M, Zink A. Burden and cost of illness in patients with juvenile idio-pathic arthritis. Ann Rheum Dis. 2004;63:836-842.
14. Hazel E, Zhang X, Duffy CM, Campillo S. High rates of unsuccessful transfer to adult care among young adults with juvenile id-iopathic arthritis. Pediatric Rheumatology 2010;8:2. Available at: www.ped-rheum.com/content/8/1/2. Accessed April 12, 2012.
15. McDonagh JE, Southwood TR, Shaw KL. The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatology. 2007; 46(1):161-168.
16. Shaw KL, Southwood TR and McDonagh JE On behalf of the British Society of Paediatric and Adolescent Rheumatology. Growing up and moving on in Rheumatology: a multicentre cohort of adolescents with Juvenile Idio-pathic Arthritis. Rheumatology. 2005;44:806-812.
17. Hersh AO, Pang S, Curran ML, Milojevic DS, von Scheven E. The challenges of transferring chronic illness patients to adult care: refections from pediatric and adult rheumatology at a US academic center. Pediatr Rheumatol Online J. 2009;8;7:13.
18. Nakhla M, Daneman D, To T, Paradis G, Guttmann A. Transition to adult care for youths with diabetes mellitus: findings from a Universal Health Care System. Pediatrics. 2009;124(6):e1134-e1141.
19. McDonagh JE. Transition of care from paediatric to adult services in rheumatology. Arch Dis Child. 2007;92(9):802-807.
20. McDonagh JE. Young people first - JIA second. Arthritis Care Res. 2008;59:1162-1170.
21. McDonagh JE, Jordan A. Transitional care for young people with connective tissue diseases. J Paediatr Child Health. 2010;20.2:79-82.
22. Robertson L. When should young people with chronic rheumatic conditions move from pae-diatric to adult centred care? Best Pract Res Clin Rheumatol. 2006;20(2):387-397.
23. Tucker LB, Cabral DA. Transition of the adolescent patient with rheumatic disease: issues to consider. Pediatr Clin North Am. 2005;52(2):641-652.
24. Department of Health. Getting it right for children and young people: overcoming cultural barriers in the NHS so as to meet their needs. 2010, Department of Health. www.dh.gov.uk. Acessed April 13, 2012.
25. American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group. Pediatrics. 2011;128(1):182-200.
26. Campbell-Stokes P, Hackett J, Johnson B, Freeman N, Shaw KL, McDonagh JE. Audit of outcome 24 months following participation in a multicentre transitional care research project. Arch Dis Child. 2006;91(suppl 1):A46.
27. Scal P, Horvath K, Garwick A. Preparing for adulthood: healthcare transition counselling for youth with arthritis. Arthritis Rheum. 2009;30:52-57.
28. Scal P, Horvath K, Garwick A. Preparing for adulthood: healthcare transition counselling for youth with arthritis. Arthritis Rheum. 2009;30:52-57.
29. van Staa A, van der Stege HA, Jedeloo S, Moll HA, Hilberink SR. Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors. J Adolesc Health. 2011;48(3):295-302.
30. Robertson LP, Hickling P, Davis PJC., Bailey K, Ryder CAJ, McDonagh JE. A comparison of paediatric vs adult rheumatology clinics. (1) The doctor perspective. Rheumatology. 2003; 42: 51.
31. Shaw KL, Southwood TR, McDonagh JE on behalf of the British Paediatric Rheumatology Group. User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2004;43(6):770-778.
32. Stinson JN, Toomey PC, Stevens BJ, et al. Asking the Experts: Exploring the self-management needs of adolescents with arthritis. Arthritis Rheum (Arthritis Care and Research). 2008;59:65-72.
33. Reid GJ, Irvine MJ, McCrindle BW, Sananes R, Ritvo PG, Sui SC, Webb GD. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics. 2004;113(3):197-205.
34. Kadan-Lottick NS, Robison LL, Gurney JG, et al. Childhood Cancer survivors' knowledge about their past diagnosis and treatment. Childhood Cancer Survivor Study. JAMA. 2002; 287:1832-1839.
35. Dore A, de Guise P, Mercier LA. Transition of care to adult congenital heart centres: what do patients know about their heart condition? Can J Cardiol. 2002;18:141-146.
36. Hollen PJ, Hobbie WL. Decision making and risk behaviours of cancer surviving adolescents and their peers. J Pediatr Oncol Nurs. 1996;13:121-133.
37. Reeve DK, Lincoln NB. Coping with the challenge of transition in older adolescents with epilepsy. Seizure. 2002;11:33-39.
38. Stinson J, Wilson R, Gill N, Yamada J, Holt J. A systematic review of internet-based self-management interventions for youth with health conditions. J Pediatric Psychology. 2009;34:495-510.
39. Brodie L, Crisp J, McCormack B, Wilson V, Bergin P, Fulham C. Journeying from nirvana with mega-mums and broken hearts: The complex dynamics of transition from paediat-ric to adult settings. Int J Child Adol Health. 2010;3(4): 517-526.
40. Clarizia NA, Chalan N, Manlhiot C, Kilburn J, Redington AN, McCrindle BW. Transition to adult health care for adolescents and young adults with congenital heart disease: perspectives of the patient, parent and health care provider. Can J Cardiol. 2009;25(9): e317-e322.
41. McDonagh JE, Southwood TR, Shaw KL. Growing up and moving on in rheumatology: development and preliminary evaluation of a transitional care programme for a multicentre cohort of adolescents with juvenile idiopathic arthritis. J Child Health Care. 2006;10(1):22-42.
42. Shaw KL, Southwood TR, McDonagh JE. Young People's satisfaction of transitional care in adolescent rheumatology in the UK. Child: Care, Health & Development. 2007;33(4):368-379.
43. Shaw KL, Southwood TR, McDonagh JE. Development and preliminary validation of the "Mind the Gap" scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis. Child: Care, Health & Development. 2007;33(4):380-388.
44. Shaw KL, Southwood TR, McDonagh JE. Growing up and moving on in Rheumatology: parents as proxies of adolescents with Juvenile Idiopathic Arthritis. Arthritis Care Res. 2006 55(2):189-98.
45. Mulligan K, Etheridge A, Kassoumeri L, Wedderburn LR, Newman S. Do mothers and fathers hold similar views about their child's arthritis? Arthritis Rheum. 2009;61(12):1712-1718.
46. Price C, Corbett S, Dovey-Pearce G. Barriers and facilitators to implementing a transition pathway for adolescents with diabetes: a health professionals perspective. Int J Child Adol Health. 2011:3(4):489-498.
47. Kingsnorth S, Lindsay S, Maxwell J, Tsybina I, Seo H, Macarthur C, Bayley M. Implementation of the LIFEspan model of transition care for youth with childhood onset disabilities. Int J Child Adol Health. 2011;3(4):547-559.
48. Betz CL, Redcay G. Dimensions of the transition service coordinator role. J Spec Pediatr Nurs. 2005;10(2): 49-59.
49. van Walleghem N, MacDonald CA, Dean HJ. Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes. Diabetes Care. 2008; 31:1529-1530.
50. Anthony SJ, Kaufman M, Drabble A, Seifert-Hansen M, Dipchand AI, Martin K. Perceptions of transitional care needs and experiences in pediatric heart transplant recipients. Am J Transplantation 2009;9:614-619.
51. Kipps S, Bahu T, Ong, K, et al. Current methods of transfer of young people with type 1 diabetes to adult services. Diabet Med. 2002;19:649-654.
52. Moons P, Pinxten S, Dedroog D, et al. Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program. J Adolesc Health. 2009;44(4):316-322.
53. Scott L, Vallis M, Charette M, Murray A, Latta R. Transition of care: researching the needs of young adults with type 1 diabetes. Can J Diabetes. 2005;29(3):203-210.
54. Steinkamp G, Ullrich G, Muller C, Fabel H, von der Hardt H. Transition of adult patients with cystic fibrosis from paediatric to adult care - the patients' perspective before and after start-up of an adult clinic. Eur J Med Res. 2001;6:85-92.
55. Tuchman LK, Slap GB, Britto MT. Transition to adult care: experiences and expectations of adolescents with a chronic illness. Child Care Health Dev. 2008;34(5):557-563.
56. Hait EJ, Barendse RM, Arnold JH, Valim C, Sands BE, Korzenik JR, Fishman LN. Transition of adolescents with inflammatory bowel disease from pediatric to adult care: a survey of adult gastroenterologists. J Pediatr Gastro-enterol Nutrition. 2008;48:61-65.
57. Barendse RM, Aan de Kerk DJ, Fishman LN, Grand RJ, Bartelsman JF, Heymans HAS. Transition of adolescents with inflammatory bowel disease from pediatric to adult care: a survey of Dutch adult gastroenterologists' perspectives. Int J Child Adol Health. 2011; 3(4):609-616.
58. Fredericks EM, Dore-Stites D, Well A, et al. Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatr Transplant. 2010. [Epub ahead of print]
59. Donkervoort M, Wiegerink DJHG, Van Meeteren J, Stam HJ, Roebroeck ME. Transition to adulthood: validation of the Rotterdam transition Profle for young adults with cerebral palsy and normal intelligence. Dev Med Child Neuro. 2008;51:53-62.
60. Sawicki GS, Lukens-Bull K, Yin X, et al. Measuring the Transition Readiness of Youth with Special Healthcare Needs: Validation of the TRAQ - Transition Readiness Assessment Questionnaire. J Pediatr Psychol. 2011;36(2):160-171.
61. Williams TS, Sherman EMS, Mah JK, Black-Man M, Latter J, Mohammed I, Slick DJ, Thornton N. Measurement of medical self-management and transition readiness among Canadian adolescents with special health care needs. Int J Child Adolescent Health. 2010;3:1-9.
62. Department of Health. 'You're welcome' quality criteria. Making health services young people friendly. May 2011. www.dh.gov.uk. Accessed April 12, 2012.
63. Shaw KL, Southwood TR, McDonagh JE on behalf of the British Paediatric Rheumatology Group. Transitional Care for Adolescents with Juvenile Idiopathic Arthritis: Results of a Delphi Study. Rheumatology (Oxford). 2004;43(8):1000-1006.
64. Burke R, Spoerri M, Price A, Cardosi A-M, Flanagan P. Survey of primary care pediatricians on the transition and transfer of adolescents to adult health care. Clin Pediatr. 2008;447:347-354.
65. McLaughlin SM, Diener-West M, Indurkhya A, et al. "Improving transition from Paediatric to Adult Cystic Fibrosis Care: Lessons From a National Survey Of Current Practice." Pediatrics. 2008; 121:e1160-e1166.
66. Gosden C, Edge JA, Holt RI, et al. The fifth UK paediatric diabetes services survey: meeting guidelines and recommendations? Arch Dis Child. 2010. Jul 6. [Epub ahead of print]
67. Department of Health. Transition: getting it right for young people. Improving the transition of young people with long-term conditions from children's to adult health services. Department of Health Publications, 2006, London. Available at: www.dh.gov.uk/transi-tion. Accessed April 12, 2012.
68. National Youth Agency. Hear By Right Charter. available at: www.nya.org.uk/quality/hear-by-right. Accessed July 23, 2011.
69. McDonagh JE, White PH (editors). Adolescent Rheumatology. Taylor and Francis, New York, 2008
70. Lazarus H. Adolescent Rheumatology (Book Review). N Engl J Med. 2008;359:1298.
71. Royal College of Paediatrics and Child Health and Young Persons Health Special Interest Group. Not Just a Phase. A guide to the participation of children and young people in health services. (2010)
72. McDonagh JE, Southwood TR Shaw KL. Unmet education and training needs of rheumatology health professionals in adolescent health and transitional care. Rheumatology (Oxford). 2004;43(6):737-743.
73. McDonagh JE, Minnaar G, Kelly KM, OCon-nor D, Shaw KL. Unmet education and training needs in adolescent health of health professionals in a UK Children's Hospital. Acta Paediatr. 2006;95(6):715-719.
74. Dieppe CR, Kumar M, Crome I. Adolescent exploratory behaviour - what do trainees know? J Adol Health. 2008;43: 520-522. Epub 2008 June 16.
75. Suris JC, Akré C, Rutishauser C. How adult specialists deal with the principles of a successful transition. J Adolesc Health. 2009; 45(6):551-555.
76. Yeo MSM, Bond LM, Sawyer SM. Health risk screening in adolescents: room for improvement in a tertiary inpatient setting. Med J Australia. 2005;183(8):427-429.
77. Robertson LP, McDonagh JE, Southwood TR, Shaw KL. Growing up and moving on. A multicentre UK audit of the transfer of adolescents with Juvenile Idiopathic Arthritis JIA from paediatric to adult centred care. Ann Rheum Dis 2006:65:74-80.
78. Hambly H, Robling M, Corwne E, Hood K, Gregory JW for the DEPICTED study team. Communication skills of healthcare professionals in paediatric diabetes services. Diab Med. 2009;26:502-509
79. Allen D, Gregory J. The transition from children's to adult diabetes services: understanding the "problem." Diabet Med. 2009;26(2):162-166.
80. Kennedy A, Sawyer S. Transition from pediatric to adult services: are we getting it right? Curr Opin Pediatr. 2008;20:403-409.
81. Jordan A, McDonagh JE. Recognition of emerging adulthood in UK rheumatology: the case for young adult rheumatology service developments. Rheumatology (Oxford). 2007 46(2):188-191.
82. Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96(6):548-553.
83. Steinberg L. A behavioral scientist looks at the science of adolescent brain development. Brain Cogn. 2010;72(1):160-164.