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Published in: Pediatric Rheumatology 1/2015

Open Access 01-12-2015 | Research article

Evaluation of a Rheumatology Transition Clinic

Authors: Elizabeth Stringer, Rachel Scott, Dianne Mosher, Inez MacNeill, Adam M Huber, Suzanne Ramsey, Bianca Lang

Published in: Pediatric Rheumatology | Issue 1/2015

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Abstract

Background

An adolescent with a chronic condition must prepare for transition from the pediatric to the adult health care system. Ideally, transition is a purposeful and coordinated process between the two systems. We sought to evaluate a pediatric rheumatology transition clinic from the perspective of the young adults who attended the clinic.

Methods

Young adults who attended the IWK Health Centre Pediatric Rheumatology Transition Clinic in Halifax, Nova Scotia, Canada were asked to complete a mail questionnaire. In this clinic an adult rheumatologist joins the pediatric team for the patient’s visit. Subjects rated satisfaction with the clinic and how completely a number of items were addressed (e.g. knowledge about disease, self-management, adolescent issues) on a 10 cm visual analog scale (higher scores reflecting more favourable assessment). Compliance with follow-up post-transfer to adult care was assessed by self-report and a chart review. Data were summarized descriptively.

Results

The response rate was 34 % (51/151). The mean age of respondents was 22 years with the majority diagnosed with juvenile idiopathic arthritis. Most patients were transferred to adult care between the ages of 17 and 20 years. The mean overall satisfaction score with the transition clinic was 7.3 ± 2.6. There was significant variability regarding how well individual transition-related items were perceived to have been addressed, with an overall mean of 6.1 ± 3.2. Items which received a majority of scores of > 7 included learning about side effects of medications, learning to live with their disease, confidence in disease management, and control of disease at transfer. Items rated as <5 by a third of respondents included addressing teen issues (smoking, alcohol, sexual health) and learning about new developments related to their condition. 74 % of patients reported regular appointments with adult rheumatology.

Conclusions

Most young adults reported overall satisfaction with the transition clinic, however their perception of how adequately various transition issues were addressed was quite variable. It appears that there were some perceived deficits in the care that was provided in all areas, but possibly more so in counselling around general adolescent issues. There was a high rate of follow-up after transfer to the local adult clinic.
Literature
2.
go back to reference Kaufman M. Role of adolescent development in the transition process. Prog Transplant. 2006;16:286–90.PubMedCrossRef Kaufman M. Role of adolescent development in the transition process. Prog Transplant. 2006;16:286–90.PubMedCrossRef
3.
go back to reference McDonagh JE, Kaufman M. The challenging adolescent. Rheumatology (Oxford). 2009;48:872–5.CrossRef McDonagh JE, Kaufman M. The challenging adolescent. Rheumatology (Oxford). 2009;48:872–5.CrossRef
4.
go back to reference Tucker LB, Cabral DA. Transition of the adolescent patient with rheumatic disease: issues to consider. Rheum Dis Clin North Am. 2007;33:661–72.PubMedCrossRef Tucker LB, Cabral DA. Transition of the adolescent patient with rheumatic disease: issues to consider. Rheum Dis Clin North Am. 2007;33:661–72.PubMedCrossRef
5.
go back to reference Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96:548–53.PubMedCrossRef Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96:548–53.PubMedCrossRef
6.
go back to reference Kaufman M, Pinzon J; Canadian Paediatric Society, Adolescent Health Committee. Transition to adult care for youth with special health care needs. Paediatr Child Health. 2007;12:785–793. Kaufman M, Pinzon J; Canadian Paediatric Society, Adolescent Health Committee. Transition to adult care for youth with special health care needs. Paediatr Child Health. 2007;12:785793.
7.
go back to reference Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health. 2003;33:309–11.PubMedCrossRef Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health. 2003;33:309–11.PubMedCrossRef
8.
go back to reference American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110:1304–1306. American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110:1304–1306.
9.
go back to reference Peters A, Laffel L. Diabetes care for emerging adults: recommendations for transition from pediatric to adult diabetes care systems: a position statement of the American Diabetes Association, with representation by the American College of Osteopathic Family Physicians, the American Academy of Pediatrics, the American Association of Clinical Endocrinologists, the American Osteopathic Association, the Centers for Disease Control and Prevention, Children with Diabetes, The Endocrine Society, the International Society for Pediatric and Adolescent Diabetes, Juvenile Diabetes Research Foundation International, the National Diabetes Education Program, and the Pediatric Endocrine Society (formerly Lawson Wilkins Pediatric Endocrine Society). Diabetes Care. 2011;34:2477–85.PubMedCentralPubMedCrossRef Peters A, Laffel L. Diabetes care for emerging adults: recommendations for transition from pediatric to adult diabetes care systems: a position statement of the American Diabetes Association, with representation by the American College of Osteopathic Family Physicians, the American Academy of Pediatrics, the American Association of Clinical Endocrinologists, the American Osteopathic Association, the Centers for Disease Control and Prevention, Children with Diabetes, The Endocrine Society, the International Society for Pediatric and Adolescent Diabetes, Juvenile Diabetes Research Foundation International, the National Diabetes Education Program, and the Pediatric Endocrine Society (formerly Lawson Wilkins Pediatric Endocrine Society). Diabetes Care. 2011;34:2477–85.PubMedCentralPubMedCrossRef
10.
go back to reference 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:e1134–1141.PubMedCrossRef 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:e1134–1141.PubMedCrossRef
11.
go back to reference Watson AR. Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol. 2000;14:469–72.PubMedCrossRef Watson AR. Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol. 2000;14:469–72.PubMedCrossRef
12.
go back to reference Hersh AO, Pang S, Curran ML, Milojevic DS, von Scheven E. The challenges of transferring chronic illness patients to adult care: reflections from pediatric and adult rheumatology at a US academic center. Pediatr Rheumatol Online J. 2009;7:13.PubMedCentralPubMedCrossRef Hersh AO, Pang S, Curran ML, Milojevic DS, von Scheven E. The challenges of transferring chronic illness patients to adult care: reflections from pediatric and adult rheumatology at a US academic center. Pediatr Rheumatol Online J. 2009;7:13.PubMedCentralPubMedCrossRef
13.
go back to reference Hazel E, Zhang X, Duffy CM, Campillo S. High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol Online J. 2010;8:2.PubMedCentralPubMedCrossRef Hazel E, Zhang X, Duffy CM, Campillo S. High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol Online J. 2010;8:2.PubMedCentralPubMedCrossRef
14.
go back to reference Lang B, MacNeill I, Bruce B, Gordon K. Assessing the needs of adolescents with rheumatic diseases: implications for the development of transition clinics [abstract]. Arthritis Rheum. 1998;41:S268. 1415. Lang B, MacNeill I, Bruce B, Gordon K. Assessing the needs of adolescents with rheumatic diseases: implications for the development of transition clinics [abstract]. Arthritis Rheum. 1998;41:S268. 1415.
15.
go back to reference Leslie KM; Canadian Paediatric Society; Adolescent Health Committee. Harm reduction: An approach to reducing risky health behaviours in adolescents. Paediatr Child Health. 2008;13:53–60. Leslie KM; Canadian Paediatric Society; Adolescent Health Committee. Harm reduction: An approach to reducing risky health behaviours in adolescents. Paediatr Child Health. 2008;13:53–60.
16.
go back to reference Ware J, Snow KK, Kosinski M. SF-36 Health Survey: Manual and Interpretation Guide. Lincoln, RI: Quality Metric Incorporated 1993; 2000. Ware J, Snow KK, Kosinski M. SF-36 Health Survey: Manual and Interpretation Guide. Lincoln, RI: Quality Metric Incorporated 1993; 2000.
17.
18.
go back to reference McDonagh JE, Shaw KL, Southwood TR. 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;10:22–42.PubMedCrossRef McDonagh JE, Shaw KL, Southwood TR. 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;10:22–42.PubMedCrossRef
19.
go back to reference Mooij JE, van Rappard DC, Mekkes JR. Six patients with pyoderma gangrenosum successfully treated with infliximab. Int J Dermatol. 2013;52:1418–20.PubMedCrossRef Mooij JE, van Rappard DC, Mekkes JR. Six patients with pyoderma gangrenosum successfully treated with infliximab. Int J Dermatol. 2013;52:1418–20.PubMedCrossRef
20.
go back to reference Gerhardt CA, McGoron KD, Vannatta K, McNamara KA, Taylor J, Passo M, et al. Educational and occupational outcomes among young adults with juvenile idiopathic arthritis. Arthritis Rheum. 2008;59:1385–91.PubMedCrossRef Gerhardt CA, McGoron KD, Vannatta K, McNamara KA, Taylor J, Passo M, et al. Educational and occupational outcomes among young adults with juvenile idiopathic arthritis. Arthritis Rheum. 2008;59:1385–91.PubMedCrossRef
21.
go back to reference Minden K. Adult outcomes of patients with juvenile idiopathic arthritis. Horm Res. 2009;72 Suppl 1:20–5.PubMedCrossRef Minden K. Adult outcomes of patients with juvenile idiopathic arthritis. Horm Res. 2009;72 Suppl 1:20–5.PubMedCrossRef
22.
go back to reference Shaw KL, Southwood TR, McDonagh JE. User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2004;43:770–8.CrossRef Shaw KL, Southwood TR, McDonagh JE. User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2004;43:770–8.CrossRef
23.
go back to reference Westwood A, Henley L, Willcox P. Transition from paediatric to adult care for persons with cystic fibrosis: patient and parent perspectives. J Paediatr Child Health. 1999;35:442–5.PubMedCrossRef Westwood A, Henley L, Willcox P. Transition from paediatric to adult care for persons with cystic fibrosis: patient and parent perspectives. J Paediatr Child Health. 1999;35:442–5.PubMedCrossRef
24.
go back to reference Grant C, Pan J. A comparison of five transition programmes for youth with chronic illness in Canada. Child Care Health Dev. 2011;37:815–20.PubMedCrossRef Grant C, Pan J. A comparison of five transition programmes for youth with chronic illness in Canada. Child Care Health Dev. 2011;37:815–20.PubMedCrossRef
Metadata
Title
Evaluation of a Rheumatology Transition Clinic
Authors
Elizabeth Stringer
Rachel Scott
Dianne Mosher
Inez MacNeill
Adam M Huber
Suzanne Ramsey
Bianca Lang
Publication date
01-12-2015
Publisher
BioMed Central
Published in
Pediatric Rheumatology / Issue 1/2015
Electronic ISSN: 1546-0096
DOI
https://doi.org/10.1186/s12969-015-0016-x

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