Skip to main content
Erschienen in: Rheumatology International 12/2012

01.12.2012 | Original Article

Attitudes of rheumatology practitioners toward transition and transfer from pediatric to adult healthcare

verfasst von: Deborah Hilderson, Philip Moons, Rene Westhovens, Carine Wouters

Erschienen in: Rheumatology International | Ausgabe 12/2012

Einloggen, um Zugang zu erhalten

Abstract

We explored the attitudes of rheumatology practitioners toward the transition and transfer of adolescents with a rheumatic disorder from pediatric to adult healthcare. Rheumatology practitioners attending the Pediatric Rheumatology European Society (PRES) Congress in 2010 were asked to complete the Questionnaire about Attitudes of Rheumatology Practitioners Toward Transfer and Transition (QUARTT), an instrument that was specifically devised for this study. Overall, 138 healthcare professionals participated (response rate, 55.2%). Participants believed that when patients with an active rheumatic disorder reach adulthood, they should receive medical follow-up from an adult rheumatologist (87%). Only 19% thought that patients should remain under the surveillance of a pediatric rheumatologist. Several initiating factors for transfer were marked as important: readiness of the patient according to the caregiver (62%), age (61%), and psychosocial maturity (49%). A transfer meeting with the patient (76%), a referral letter (73%), and a medical transfer file (64%) were the most preferred transfer communication methods. Joint outpatient clinics, phone calls, and transfer meetings without the patient were considered to be less useful. Pediatric (94%) or adult (83%) rheumatologists, parents (81%), and nurse specialists (74%) were stated as the most important active participants in the transition process. Responders favored essential transition components because young people should be assisted on how to become independent (96%), how to deal with fatigue (91%), and how to establish medication adherence (90%). In conclusion, this study emphasized the importance of transfer to specialized rheumatology care of adolescents with an active rheumatic disease and highlighted transfer initiators and transfer communication tools.
Literatur
1.
Zurück zum Zitat American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine (2002) A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 110(6 Pt 2):1304–1306 American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine (2002) A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 110(6 Pt 2):1304–1306
2.
Zurück zum Zitat Cooley WC, Sagerman PJ (2011) American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, Transitions Clinical Report Authoring Group Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 128(1):182–200 Cooley WC, Sagerman PJ (2011) American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, Transitions Clinical Report Authoring Group Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 128(1):182–200
3.
Zurück zum Zitat Oen K (2002) Long-term outcomes and predictors of outcomes for patients with juvenile idiopathic arthritis. Best Pract Res Clin Rheumatol 16(3):347–360PubMed Oen K (2002) Long-term outcomes and predictors of outcomes for patients with juvenile idiopathic arthritis. Best Pract Res Clin Rheumatol 16(3):347–360PubMed
4.
Zurück zum Zitat Ravelli A (2004) Toward an understanding of the long-term outcome of juvenile idiopathic arthritis. Clin Exp Rheumatol 22(3):271–275PubMed Ravelli A (2004) Toward an understanding of the long-term outcome of juvenile idiopathic arthritis. Clin Exp Rheumatol 22(3):271–275PubMed
5.
Zurück zum Zitat Stucki G (1997) Specialist management: needs and benefits. Baillieres Clin Rheumatol 11(1):97–107PubMedCrossRef Stucki G (1997) Specialist management: needs and benefits. Baillieres Clin Rheumatol 11(1):97–107PubMedCrossRef
6.
Zurück zum Zitat Eyckmans L, Hilderson D, Westhovens R, Wouters C, Moons P (2011) What does it mean to grow up with juvenile idiopathic arthritis? A qualitative study on the perspectives of patients. Clin Rheumatol 30(4):459–465 Eyckmans L, Hilderson D, Westhovens R, Wouters C, Moons P (2011) What does it mean to grow up with juvenile idiopathic arthritis? A qualitative study on the perspectives of patients. Clin Rheumatol 30(4):459–465
7.
Zurück zum Zitat Tattersall R, McDonagh JE (2010) Transition: a rheumatology perspective. Br J Hosp Med (Lond) 71(6):315–319 Tattersall R, McDonagh JE (2010) Transition: a rheumatology perspective. Br J Hosp Med (Lond) 71(6):315–319
8.
Zurück zum Zitat Davies K, Cleary G, Foster H, Hutchinson E, Baildam E (2010) BSPAR standards of care for children and young people with juvenile idiopathic arthritis. Rheumatol (Oxford) 49(7):1406–1408CrossRef Davies K, Cleary G, Foster H, Hutchinson E, Baildam E (2010) BSPAR standards of care for children and young people with juvenile idiopathic arthritis. Rheumatol (Oxford) 49(7):1406–1408CrossRef
9.
Zurück zum Zitat Knauth A, Verstappen A, Reiss J, Webb GD (2006) Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin 24(4):619–629, vi Knauth A, Verstappen A, Reiss J, Webb GD (2006) Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin 24(4):619–629, vi
10.
Zurück zum Zitat Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP et al (1993) Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 14(7):570–576 Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP et al (1993) Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 14(7):570–576
11.
Zurück zum Zitat Betz CL, Redcay G (2005) Dimensions of the transition service coordinator role. J Spec Pediatr Nurs 10(2):49–59PubMedCrossRef Betz CL, Redcay G (2005) Dimensions of the transition service coordinator role. J Spec Pediatr Nurs 10(2):49–59PubMedCrossRef
12.
Zurück zum Zitat Hilderson D, Corstjens F, Moons P, Wouters C, Westhovens R (2010) Adolescents with juvenile idiopathic arthritis: who cares after the age of 16? Clin Exp Rheumatol 28(5):790–797PubMed Hilderson D, Corstjens F, Moons P, Wouters C, Westhovens R (2010) Adolescents with juvenile idiopathic arthritis: who cares after the age of 16? Clin Exp Rheumatol 28(5):790–797PubMed
13.
Zurück zum Zitat Hazel E, Zhang X, Duffy CM, Campillo S (2010) High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol Online J 8:2PubMedCrossRef Hazel E, Zhang X, Duffy CM, Campillo S (2010) High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol Online J 8:2PubMedCrossRef
14.
Zurück zum Zitat McPherson M, Thaniel L, Minniti CP (2009) Transition of patients with sickle cell disease from pediatric to adult care: Assessing patient readiness. Pediatr Blood Cancer 52(7):838–841PubMedCrossRef McPherson M, Thaniel L, Minniti CP (2009) Transition of patients with sickle cell disease from pediatric to adult care: Assessing patient readiness. Pediatr Blood Cancer 52(7):838–841PubMedCrossRef
15.
Zurück zum Zitat van Staa A, van der Stege HA, Jedeloo S, Moll HA, Hilberink SR (2011) Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors. J Adolesc Health 48(3):295–302PubMedCrossRef van Staa A, van der Stege HA, Jedeloo S, Moll HA, Hilberink SR (2011) Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors. J Adolesc Health 48(3):295–302PubMedCrossRef
16.
Zurück zum Zitat Fredericks EM, Dore-Stites D, Well A, Magee JC, Freed GL, Shieck V et al (2010) Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatr Transplant 14(8):944–953PubMedCrossRef Fredericks EM, Dore-Stites D, Well A, Magee JC, Freed GL, Shieck V et al (2010) Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatr Transplant 14(8):944–953PubMedCrossRef
17.
Zurück zum Zitat Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang IC, Livingood W et al (2011) Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ—transition readiness assessment questionnaire. J Pediatr Psychol 36(2):160–171PubMedCrossRef Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang IC, Livingood W et al (2011) Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ—transition readiness assessment questionnaire. J Pediatr Psychol 36(2):160–171PubMedCrossRef
18.
Zurück zum Zitat McDonagh JE, Shaw KL, Southwood TR (2006) 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 10(1):22–42PubMedCrossRef McDonagh JE, Shaw KL, Southwood TR (2006) 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 10(1):22–42PubMedCrossRef
19.
Zurück zum Zitat Shaw KL, Southwood TR, McDonagh JE (2005) Growing up and moving on in rheumatology: a multicentre cohort of adolescents with juvenile idiopathic arthritis. Rheumatol (Oxford) 44(6):806–812CrossRef Shaw KL, Southwood TR, McDonagh JE (2005) Growing up and moving on in rheumatology: a multicentre cohort of adolescents with juvenile idiopathic arthritis. Rheumatol (Oxford) 44(6):806–812CrossRef
20.
Zurück zum Zitat Suris JC, Akre C, Rutishauser C (2009) How adult specialists deal with the principles of a successful transition. J Adolesc Health 45(6):551–555PubMedCrossRef Suris JC, Akre C, Rutishauser C (2009) How adult specialists deal with the principles of a successful transition. J Adolesc Health 45(6):551–555PubMedCrossRef
21.
Zurück zum Zitat McDonagh JE, Foster HE, Hall MA, Chamberlain MA (2000) Audit of rheumatology services for adolescents and young adults in the UK. British Paediatric Rheumatology Group. Rheumatol (Oxford) 39(6):596–602 McDonagh JE, Foster HE, Hall MA, Chamberlain MA (2000) Audit of rheumatology services for adolescents and young adults in the UK. British Paediatric Rheumatology Group. Rheumatol (Oxford) 39(6):596–602
22.
Zurück zum Zitat Hilderson D, Westhovens R, Wouters C, Moons P (2008) Transitional care for adolescents with rheumatic diseases: urgent need for more research. Child Care Health Dev 34(3):401–402PubMedCrossRef Hilderson D, Westhovens R, Wouters C, Moons P (2008) Transitional care for adolescents with rheumatic diseases: urgent need for more research. Child Care Health Dev 34(3):401–402PubMedCrossRef
23.
Zurück zum Zitat McDonagh JE, Southwood TR, Shaw KL (2007) The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatol (Oxford) 46(1):161–168CrossRef McDonagh JE, Southwood TR, Shaw KL (2007) The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatol (Oxford) 46(1):161–168CrossRef
24.
Zurück zum Zitat Por J, Golberg B, Lennox V, Burr P, Barrow J, Dennard L (2004) Transition of care: health care professionals’ view. J Nurs Manag 12(5):354–361PubMedCrossRef Por J, Golberg B, Lennox V, Burr P, Barrow J, Dennard L (2004) Transition of care: health care professionals’ view. J Nurs Manag 12(5):354–361PubMedCrossRef
25.
Zurück zum Zitat Hait EJ, Barendse RM, Arnold JH, Valim C, Sands BE, Korzenik JR et al (2009) Transition of adolescents with inflammatory bowel disease from pediatric to adult care: a survey of adult gastroenterologists. J Pediatr Gastroenterol Nutr 48(1):61–65PubMedCrossRef Hait EJ, Barendse RM, Arnold JH, Valim C, Sands BE, Korzenik JR et al (2009) Transition of adolescents with inflammatory bowel disease from pediatric to adult care: a survey of adult gastroenterologists. J Pediatr Gastroenterol Nutr 48(1):61–65PubMedCrossRef
26.
Zurück zum Zitat Crowley R, Wolfe I, Lock K, McKee M (2011) Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 96(6):548–553PubMedCrossRef Crowley R, Wolfe I, Lock K, McKee M (2011) Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 96(6):548–553PubMedCrossRef
27.
Zurück zum Zitat Hilderson D, Saidi AS, Van Deyk K, Verstappen A, Kovacs AH, Fernandes SM et al (2009) Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe. Pediatr Cardiol 30(6):786–793PubMedCrossRef Hilderson D, Saidi AS, Van Deyk K, Verstappen A, Kovacs AH, Fernandes SM et al (2009) Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe. Pediatr Cardiol 30(6):786–793PubMedCrossRef
28.
Zurück zum Zitat McLaughlin SE, Diener-West M, Indurkhya A, Rubin H, Heckmann R, Boyle MP (2008) Improving transition from pediatric to adult cystic fibrosis care: lessons from a national survey of current practices. Pediatrics 121(5):e1160–e1166PubMedCrossRef McLaughlin SE, Diener-West M, Indurkhya A, Rubin H, Heckmann R, Boyle MP (2008) Improving transition from pediatric to adult cystic fibrosis care: lessons from a national survey of current practices. Pediatrics 121(5):e1160–e1166PubMedCrossRef
29.
Zurück zum Zitat Telfair J, Alexander LR, Loosier PS, leman-Velez PL, Simmons J (2004) Providers’ perspectives and beliefs regarding transition to adult care for adolescents with sickle cell disease. J Health Care Poor Underserved 15(3):443–461PubMedCrossRef Telfair J, Alexander LR, Loosier PS, leman-Velez PL, Simmons J (2004) Providers’ perspectives and beliefs regarding transition to adult care for adolescents with sickle cell disease. J Health Care Poor Underserved 15(3):443–461PubMedCrossRef
30.
Zurück zum Zitat Shaw KL, Southwood TR, McDonagh JE (2007) Young people’s satisfaction of transitional care in adolescent rheumatology in the UK. Child Care Health Dev 33(4):368–379PubMedCrossRef Shaw KL, Southwood TR, McDonagh JE (2007) Young people’s satisfaction of transitional care in adolescent rheumatology in the UK. Child Care Health Dev 33(4):368–379PubMedCrossRef
31.
Zurück zum Zitat Fiorentino L, Datta D, Gentle S, Hall DM, Harpin V, Phillips D et al (1998) Transition from school to adult life for physically disabled young people. Arch Dis Child 79(4):306–311PubMedCrossRef Fiorentino L, Datta D, Gentle S, Hall DM, Harpin V, Phillips D et al (1998) Transition from school to adult life for physically disabled young people. Arch Dis Child 79(4):306–311PubMedCrossRef
32.
Zurück zum Zitat Fiorentino L, Phillips D, Walker A, Hall D (1998) Leaving paediatrics: the experience of service transition for young disabled people and their family carers. Health Soc Care Commun 6(4):260–270CrossRef Fiorentino L, Phillips D, Walker A, Hall D (1998) Leaving paediatrics: the experience of service transition for young disabled people and their family carers. Health Soc Care Commun 6(4):260–270CrossRef
33.
Zurück zum Zitat Kirk S (2008) Transitions in the lives of young people with complex healthcare needs. Child Care Health Dev 34(5):567–575PubMedCrossRef Kirk S (2008) Transitions in the lives of young people with complex healthcare needs. Child Care Health Dev 34(5):567–575PubMedCrossRef
34.
Zurück zum Zitat Tuchman LK, Slap GB, Britto MT (2008) Transition to adult care: experiences and expectations of adolescents with a chronic illness. Child Care Health Dev 34(5):557–563PubMedCrossRef Tuchman LK, Slap GB, Britto MT (2008) Transition to adult care: experiences and expectations of adolescents with a chronic illness. Child Care Health Dev 34(5):557–563PubMedCrossRef
35.
Zurück zum Zitat Braj B, Picone G, Children HF, Cross N, Pearlman L (1999) The lived experience of adolescents who transfer from a pediatric to an adult hemodialysis centre. CANNT J 9(4):41–46PubMed Braj B, Picone G, Children HF, Cross N, Pearlman L (1999) The lived experience of adolescents who transfer from a pediatric to an adult hemodialysis centre. CANNT J 9(4):41–46PubMed
36.
Zurück zum Zitat Brumfield K, Lansbury G (2004) Experiences of adolescents with cystic fibrosis during their transition from paediatric to adult health care: a qualitative study of young Australian adults. Disabil Rehabil 26(4):223–234PubMedCrossRef Brumfield K, Lansbury G (2004) Experiences of adolescents with cystic fibrosis during their transition from paediatric to adult health care: a qualitative study of young Australian adults. Disabil Rehabil 26(4):223–234PubMedCrossRef
37.
Zurück zum Zitat Visentin K, Koch T, Kralik D (2006) Adolescents with type 1 diabetes: transition between diabetes services. J Clin Nurs 15(6):761–769PubMedCrossRef Visentin K, Koch T, Kralik D (2006) Adolescents with type 1 diabetes: transition between diabetes services. J Clin Nurs 15(6):761–769PubMedCrossRef
38.
Zurück zum Zitat Moons P, Pinxten S, Dedroog D, Van DK, Gewillig M, Hilderson D et al (2009) 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 44(4):316–322PubMedCrossRef Moons P, Pinxten S, Dedroog D, Van DK, Gewillig M, Hilderson D et al (2009) 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 44(4):316–322PubMedCrossRef
39.
Zurück zum Zitat Fredericks EM, Dore-Stites D, Lopez MJ, Well A, Shieck V, Freed GL et al (2011) Transition of pediatric liver transplant recipients to adult care: patient and parent perspectives. Pediatr Transplant 15(4):414–424PubMedCrossRef Fredericks EM, Dore-Stites D, Lopez MJ, Well A, Shieck V, Freed GL et al (2011) Transition of pediatric liver transplant recipients to adult care: patient and parent perspectives. Pediatr Transplant 15(4):414–424PubMedCrossRef
40.
Zurück zum Zitat McCurdy C, DiCenso A, Boblin S, Ludwin D, Bryant-Lukosius D, Bosompra K (2006) There to here: young adult patients’ perceptions of the process of transition from pediatric to adult transplant care. Prog Transplant 16(4):309–316PubMed McCurdy C, DiCenso A, Boblin S, Ludwin D, Bryant-Lukosius D, Bosompra K (2006) There to here: young adult patients’ perceptions of the process of transition from pediatric to adult transplant care. Prog Transplant 16(4):309–316PubMed
41.
Zurück zum Zitat Jordan A, McDonagh JE (2007) Recognition of emerging adulthood in UK rheumatology: the case for young adult rheumatology service developments. Rheumatol (Oxford) 46(2):188–191CrossRef Jordan A, McDonagh JE (2007) Recognition of emerging adulthood in UK rheumatology: the case for young adult rheumatology service developments. Rheumatol (Oxford) 46(2):188–191CrossRef
42.
Zurück zum Zitat Tucker LB, Cabral DA (2005) Transition of the adolescent patient with rheumatic disease: issues to consider. Pediatr Clin North Am 52(2):641–652, viii Tucker LB, Cabral DA (2005) Transition of the adolescent patient with rheumatic disease: issues to consider. Pediatr Clin North Am 52(2):641–652, viii
43.
Zurück zum Zitat Shaw KL, Southwood TR, McDonagh JE (2004) User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatol (Oxford) 43(6):770–778CrossRef Shaw KL, Southwood TR, McDonagh JE (2004) User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatol (Oxford) 43(6):770–778CrossRef
44.
Zurück zum Zitat Stinson JN, Toomey PC, Stevens BJ, Kagan S, Duffy CM, Huber A et al (2008) Asking the experts: exploring the self-management needs of adolescents with arthritis. Arthritis Rheum 59(1):65–72PubMedCrossRef Stinson JN, Toomey PC, Stevens BJ, Kagan S, Duffy CM, Huber A et al (2008) Asking the experts: exploring the self-management needs of adolescents with arthritis. Arthritis Rheum 59(1):65–72PubMedCrossRef
45.
Zurück zum Zitat Sawyer SM, Blair S, Bowes G (1997) Chronic illness in adolescents: transfer or transition to adult services? J Paediatr Child Health 33(2):88–90PubMedCrossRef Sawyer SM, Blair S, Bowes G (1997) Chronic illness in adolescents: transfer or transition to adult services? J Paediatr Child Health 33(2):88–90PubMedCrossRef
46.
Zurück zum Zitat Slap GB (1992) Textbook of adolescent medicine. WB Saunders, Philadelphia Slap GB (1992) Textbook of adolescent medicine. WB Saunders, Philadelphia
47.
Zurück zum Zitat White PH (1997) Success on the road to adulthood. Issues and hurdles for adolescents with disabilities. Rheum Dis Clin North Am 23(3):697–707 White PH (1997) Success on the road to adulthood. Issues and hurdles for adolescents with disabilities. Rheum Dis Clin North Am 23(3):697–707
Metadaten
Titel
Attitudes of rheumatology practitioners toward transition and transfer from pediatric to adult healthcare
verfasst von
Deborah Hilderson
Philip Moons
Rene Westhovens
Carine Wouters
Publikationsdatum
01.12.2012
Verlag
Springer-Verlag
Erschienen in
Rheumatology International / Ausgabe 12/2012
Print ISSN: 0172-8172
Elektronische ISSN: 1437-160X
DOI
https://doi.org/10.1007/s00296-011-2273-4

Weitere Artikel der Ausgabe 12/2012

Rheumatology International 12/2012 Zur Ausgabe

Leitlinien kompakt für die Innere Medizin

Mit medbee Pocketcards sicher entscheiden.

Seit 2022 gehört die medbee GmbH zum Springer Medizin Verlag

Update Innere Medizin

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.