Musculoskeletal symptoms are the third most common presentation of young people to primary care,1 underlining the importance of musculoskeletal assessment as a core competency in adolescent health.2 The onset of many long-term rheumatic conditions occurs during adolescence, including systemic lupus erythematosus (SLE) and certain juvenile idiopathic arthritis (JIA) subtypes (ie, rheumatoid factor positive polyarthritis; enthesitis-related JIA; and inflammatory bowel-associated arthritis).3 Other adolescent onset noninflammatory conditions include chronic idiopathic pain syndromes, anterior knee pain syndrome, Scheuermann’s syndrome, spondylolisthesis and nonspecific mechanical back pain.3
The impact of chronic rheumatic disease during adolescence is rarely referenced alongside other long-term conditions such as diabetes or cystic fibrosis. Yet, evidence suggests that adolescents with rheumatic conditions rate their mental health, use of health services, and activities at school, work, and home more negatively than those without chronic disease or with other chronic disease.4
Similar morbidities exist in adulthood, and although there have been significant therapeutic advances, research conducted in 2006 indicated that only 35% of young people with JIA were in remission at mean follow-up of 16.2 years5 and those with active disease had more negative measures of pain, mobility, self-care, domestic, and social life compared with controls. Skarin and colleagues6 have also reported active uveitis in 49% of young people with JIA at 24-year follow-up.
Impact on Vocational Readiness
With respect to vocational outcomes, emerging adults with JIA are at risk of increased unemployment despite comparable academic attainment to controls.7 Not all will need specific educational or occupational support,8 but it appears that vocational success may not currently mirror the social successes reported in young people with long-term conditions.9,10
This has serious implications for financial security and long-term well-being. There are concerns about whether the necessary expertise is routinely available to rheumatology teams that treat transferred patients.11 In a UK survey, occupational therapists rated addressing vocational readiness as important and appropriate aspects of their role but rated themselves as having limited knowledge and confidence about these important areas, revealing unmet training needs.11 With proper training, occupational therapists could liase with teachers, careers advisers, and potential employers, who may have low expectations of young people’s vocational potential.12
The significant burden of such morbidities and the cost of JIA in adulthood is recognized in the literature13 but considering reports of up to 52% loss to follow-up,14 the true extent of this burden, whether medical, psychosocial, and/or vocational may not be fully realized. Further study is needed to understand the full range of adult morbidity and the best ways to address these within a rheumatology service.
The impact of effective transitional care, as well as new biologic therapy, should be borne in mind, particularly as a transition program that included vocational readiness has been reported to improve this particular outcome.15
Timing of transfer to adult providers is generally age dependent (usually at 16, 18, or 21 years to reflect socio-legal definitions of “adulthood” and institutional bureaucracy), and is rarely based on the patient’s clinical status. This was apparent before implementation of the transitional care program in the authors’ institution, at which time 80% of 17-year-olds (the frequent age of transfer in the UK) had active disease, with 55% reporting moderate-to-severe disability and two-thirds receiving disease-modifying antirheumatic drugs.16
The consequences of unstable disease at transfer are not clear, but may be a concern; Hersh and colleagues17 have reported that 30% of adolescents with JIA had increased disease activity posttransfer. There are similar trends in diabetes, with a significant increase in hospital admissions posttransfer.18
Transition is widely accepted, including within the rheumatology field.19–23 Unfortunately, universal implementation is frustrated by cultural, attitudinal, and bureaucratic barriers.24,25 This is evident in the authors’ institution (which has an upper-age criteria of 16 years). Here, one-third of JIA patients within the rheumatology transition program still had ongoing transition-related issues at this age.
For example, at time of transfer, only 48% of those requiring joint injections had received them without general anesthetic (typical in adult care) and 20% had not been seen independently of parents.26 Such data support the need for flexibility in the age criteria for transfer, so those who are not yet “ready” for adult care can stay within a program that can effectively train them to acquire the necessary skills before transfer.
Suboptimal transitional care was also evident in the US National Survey of Children with Special Health Care Needs from 2005 to 2006.27 This study revealed a substantial number of parents of 12- to 17-year-olds within the arthritis cohort (n = 1,052) had yet to discuss core aspects of care with providers before transfer, including self-management (not discussed in 25% of cases); changing health needs in adulthood (47.9%); health insurance in adulthood (77.5%); and transfer (81%).27
Baseline analysis of the authors’ Transition Program revealed limited patient and parent knowledge of necessary disease self-management skills before implementation;15 and unsatisfactory levels of self-responsibility (including involvement in independent consultations and self-medication). This is of concern, given the results of a Dutch study involving 12- to 19-year- olds with various long-term conditions (n = 954).29 This study demonstrated that feeling self-efficacious in skills for independent hospital visits and greater perceived independence during consultations were most strongly associated with being ready to transfer. Young people with a more positive attitude toward transition and those who reported more discussions about future transfer also felt more prepared. By contrast, disease-related factors explained very little of the variance in transfer readiness.29 Reassuringly, there are areas of transitional care relatively easy to implement and showed rapid improvement in the authors’ institution after the Transition Program was introduced; rising from only 27% of 15- to 18-year olds being seen alone30 to 80% of all pediatric patients (11 to 18 years) 2 years later.26
Unfortunately, self-management training in adolescent rheumatology is lacking, with young people themselves calling for greater support to develop skills,31,32 including communication with doctors, pain management, and managing emotions.32 The provision of effective educational and self-management interventions is similarly indicated in other long-term conditions.33,34–37
A systematic review of online self-management interventions for young people with chronic health conditions has revealed varied outcomes.38 Although improvement in symptoms was observed in seven of nine interventions, there was conflicting evidence regarding improvement in disease-specific knowledge and quality of life, and limited evidence regarding impact on health care utilization.38
Role of Parents
Some authors have suggested that the impact of transition is greater on parents than young people.39 The experience of parenting during transition was eloquently described by Lynn Brodie and colleagues in Journeying from Nirvana with Mega-mums and Broken Hearts: the Complex Dynamics of Transition from Pediatric to Adult Settings.39
Parental involvement can certainly influence a child’s ability to take responsibility for his or her health care; overprotective and under-protective parenting40 have been implicated as barriers to successful transition. For example, a cardiology study has shown that parents who assumed total responsibility for their adolescent’s disease management were less likely to encourage age-appropriate behaviors (eg, self-medication). The children themselves were less knowledgeable and less likely to communicate directly in consultations.40 Transition planning with parents is therefore equally important as with young people. In the rheumatology Transition Program, individualized transition planning checklists were successfully completed by 91% of participating parents,41 who showed significant improved satisfaction with care 12 months after entering the Program,15 using the Mind the Gap scale.42,43
A notable area of parental issues during transition is the discrepancy between parent proxy report and adolescent report. Shaw and colleagues44 reported 50% of parents of adolescents with JIA (n = 303) either overestimated or underestimated their child’s pain, functional ability, global well-being and health-related quality of life. Differences have also been reported between mothers’ and fathers’ proxy reports of their child’s symptoms, quality of life, and measures of their mood and beliefs about their child’s illness.45 Further research into the impact of these differences will be useful in knowing how best to work with families during the transition process.
Transition Care Team Members
Several authors have highlighted the instrumental role of a transition champion or lead, particularly while embedding transitional care within routine clinical practice.46,47 Ideally, this should be a senior staff member, but the individual’s commitment, adolescent health expertise, and enthusiasm for transitional care should be a greater determinant than professional background. This needs to be consolidated with good succession planning to ensure the service’s sustainability.
The role of a coordinator has been recurrently advocated and is particularly important for young people who have complex conditions and require collaborative care between multiple disciplines and agencies.48 However, benefits for less complex patients are also apparent, and having a named key worker was considered the most important resource over and above paper-based resources in the rheumatology Transition Program.41
A health navigator role of a team member may also be useful. These maintain telephone and email contact with emerging adults during the transition period to support access to health care services and have been reported as acceptable and feasible in diabetes.49 However, further evaluation is required to establish their influence on long-term outcomes.
Many of the drivers for transition have been centered within pediatrics, yet the role of the adult physician is equally important. Meeting the adult team before transfer is a priority for many young people, regardless of their condition,31,50–55 and may increase subsequent appointment adherence.51
There have been several studies to identify what adult specialists consider important for transition care, which provide preliminary insight about effectively preparing for young people’s transfer to adult centered care.56,57 Work by the authors has shown that parents of young people with JIA rate provider characteristics as more important than aspects of the physical environment (eg, dedicated adolescent waiting areas) or process issues (eg, clinic waiting times), with staff honesty and knowledge rated as the most essential aspects of best practice.42
Transition Evaluation Tools
As yet, there is no consensus about the best way to assess transition readiness. In many programs, individual transition planning checklists are used, as was the case in the rheumatology Transition Program. These are effective clinical tools to facilitate discussion and improve the efficacy of consultations; however, they are not validated and are based on self-report, often with no verification that the emerging adult patient has mastered the task being assessed. This is exemplified in the pediatric liver transplantation literature in which older adolescents (16 to 20 years of age) using the Transition Readiness Survey reported greater self-management, but were at a higher risk for medication nonadherence as measured by drug blood level.58 It will be important, therefore, to ensure that self-report assessments are supported by objective data where appropriate and possible.
As well as tools reported in the literature, 42,,43,58–62 other simple routine data indicators are available to assess transitional planning services. Optimal service improvement will depend upon the development of more robust data collection methods that reflect the essential elements of transitional care, but also acknowledge the competing demands on the patients and clinicians. The use of modern technologies may improve the acceptability of such tools.
Administration of Patient Transfer
The transfer of information between child and adult-centered care is rated as a key aspect of best practice by physicians56,57,63, but remains suboptimal64 and a concern for young people and parents.31,55 National guidance in many countries advocates that summaries of the medical history are also provided to the young people themselves, yet this does not occur in up to 50% of cases.64,65 Appointment of a transitional care coordinator has been invaluable in the authors’ institution (which refers to approximately 30 different adult rheumatologists), and reduced the level of unknown transfers from about 33% of patients to 2% (personal communication). Differential use and understanding of transition terminology is a major barrier to effective transitional care. This is exemplified by the 5th UK Pediatric Diabetes Survey, which reported 66% of clinics had a transition “protocol”; yet on closer inspection, 21% had interpreted this to mean sending a transfer letter only.66 If professionals misguidedly perceive they are correctly “doing transition,” there will be little momentum to develop services and improve standards. Ensuring mutual understanding of terminology and conceptual frameworks during the transition process is, therefore, a critical first step in service improvement and research.
A written transition policy that is agreed upon by all major stakeholders, including the adult team, has been advocated in many guidance documents, including those in the UK and US.25,66 However, implementation of such policies is slow to progress, as evident in the rheumatology Transition Program in which, despite having been supplied with a template to complete,41 only 2 of 10 participating rheumatology centers had a written policy at completion of the 3-year project.
The reasons for this are unclear, but having such policies are vital to ensure mutual understanding, consistency, continuity, and consensus between pediatric and adult teams and represent an important component of transition itself. Where possible, policies should address situations in which the specific adult institution may not be known to the pediatric team. In such situations, the patient may require additional skills to maintain their own medical records and navigate the health system. In such circumstances, the primary adult care provider should be supported by the pediatric team to assist in ensuring continuity of care and providing an important safety net during the transfer period.
Patient participation in adolescent rheumatology service design, delivery, and development is an important quality criterion of a young person-friendly service. Too often, when young people are consulted regarding service developments, adults ask the questions but also decide which answer to accept. Within the authors’ institution, a commitment to involve young people in consultation, participation, monitoring, and evaluation of services has resulted in development of the “Hear By Right” charter;68 involvement in the recruitment of staff (clinical and research), creation of two DVDs that provide guidance from young people to professionals about appropriate communication with adolescents, and support for peers regarding health care management. Also, a chapter written by young people for an adolescent rheumatology textbook,69 was commended in a review in The New England Journal of Medicine.70 Actively involving young people in decision-making improves the responsiveness of health care services and promotes citizenship and social inclusion, which are important to the health of any community. Moreover, strategies for enhancing participation can foster self-esteem, personal development, and skill development. An excellent resource to support doctors in developing and implementing participation strategies is Not Just a Phase, published by the Royal College of Pediatrics and Child Health in the UK.71
An important quality criterion for an effective transition program is a well-trained staff. Having professionals who are knowledgeable about transitional care is considered best practice, but was considered only feasible in a few UK hospitals at the time our Transition Program was developed.63 At that time, there was limited formal training in adolescent health in the UK. This was ranked by professionals as one of the main barriers to delivering transitional and/or adolescent health care.72–74
The situation has yet to be resolved, with a recent study showing that 54% to 66% of adult gastroenterologists did not feel competent addressing developmental aspects of adolescents.56,57 This is reflected in other studies, including one by Suris and colleagues 75 that found at least one-third of adult physicians did not discuss sensitive issues such as substance use, emotional well-being, and sexual health. Yet, psychosocial screening is a core principle of adolescent medicine, with significant implications to rheumatic disease, particularly as it relates to drug therapies, but this screening does not appear routine in pediatric specialist clinics (including rheumatology).63,76,77 In a study of pediatric diabetes health professionals, communication skills to address psychosocial issues were considered more important than those for medical issues, yet they reported less confidence in their ability to do so.78
Allen and Gregory79 propose that rather than asking how best to manage transition, researchers should ask how best to meet the needs of young people with chronic conditions at this stage of the life course. In subsequent papers, they emphasize the importance of continuity to effective transitional care, whether it be informational, relational, or cross-boundary, to name but a few.
Another framework is presented by Kennedy and Sawyer,80 who consider transition as interdependent with adolescent medicine, self-management, and the structure of health care systems. Regardless of which framework is considered most appropriate, the interdependence of transition and the principles of adolescent medicine must be acknowledged, given the impact of long-term conditions on adolescent development.
The young adult clinic is a model of care provision that has been reported to be ideally suited to rheumatology,23,81 as it facilitates age and developmentally appropriate care, facilitates transitional care in adult facilities, and facilitates completion of other transitions (work, independent living, etc). A systematic review of evidence of effectiveness of transitional care programs showed that only three of the eight studies incorporating combined clinics (pediatric and adult) were successful, whereas three of the four studies incorporating a young adult clinic were successful.82
Exciting developments in neuroscience are revealing that adolescent brain development extends into the 20s, with the changes being primarily related to aspects of executive functioning such as forward planning, evaluation of risk and reward, and regulation of behavior and emotion.83 It appears, therefore, that specific clinics for 16- to 25-year-olds may be very developmentally appropriate.
Perhaps it was short-sighted to identify transitional care as a defined entity. Instead, it may be better to redefine it as an integral component of adolescent health, regardless of the specific long-term condition. As one young person in the original rheumatology research states, “It’s not about arthritis; it’s about living with it.”31
Indeed, although there is a “paucity of robust evidence” to support transitional care, there is credible evidence already available in adolescent medicine, self-management, and health service provision.
Effective communication should not be limited to our engagement with young people, but also should be used with our clinical and academic colleagues to clarify key concepts in transitional care. By embracing these challenges, we can improve the quality of life for today’s young people attending rheumatology services and support them to become tomorrow’s fulfilled, productive, and independent adults.
- 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. doi:10.1136/bmj.321.7259.486 [CrossRef]
- 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. doi:10.1016/j.jpeds.2008.08.013 [CrossRef]
- Cassidy JT, Petty RE, Laxer R, Lindsley C. Textbook of Pediatric Rheumatology. 6th edition. Elsevier, 2011
- 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.
- Arkela-Kautiainen M, Haapasaari J, Kautiainen 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.
- Skarin A, Elborgh R, Edlund E, Bengtsson-Stigmar E. Long-term follow-up of patients with uveitis associated with juvenile idiopathic arthritis: a cohort study. Ocul Immunol Inflamm. 2009;17(2):104–8. doi:10.1080/09273940802650398 [CrossRef]
- Foster HE, Marshall N, Myers A, Dunkley P, Griffiths ID. Outcome in adults with juvenile idiopathic arthritis. Arthritis Rheum. 2003;48:767–775. doi:10.1002/art.10863 [CrossRef]
- 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. doi:10.1002/art.24100 [CrossRef]
- 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. doi:10.1016/j.jadohealth.2010.12.001 [CrossRef]
- 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. doi:10.1016/j.jadohealth.2008.03.005 [CrossRef]
- Shaw KL, Hackett J, Southwood TR, McDonagh 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.
- Shaw KL, Hackett J, Southwood TR, McDonagh 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.
- Minden K, Niewerth M, Listing J, Biedermann T, Schontube M, Zink A. Burden and cost of illness in patients with juvenile idiopathic arthritis. Ann Rheum Dis. 2004;63:836–842. doi:10.1136/ard.2003.008516 [CrossRef]
- Hazel E, Zhang X, Duffy CM, Campillo S. High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatric Rheumatology2010;8:2. Available at: www.ped-rheum.com/content/8/1/2. Accessed April 12, 2012. doi:10.1186/1546-0096-8-2 [CrossRef]
- 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. doi:10.1093/rheumatology/kel198 [CrossRef]
- Shaw KL, Southwood TR, McDonagh JEon behalf of the British Society of Paediatric and Adolescent Rheumatology. Growing up and moving on in Rheumatology: a multicentre cohort of adolescents with Juvenile Idiopathic Arthritis. Rheumatology. 2005;44:806–812. doi:10.1093/rheumatology/keh603 [CrossRef]
- 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;8;7:13. doi:10.1186/1546-0096-7-13 [CrossRef]
- 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. doi:10.1542/peds.2009-0041 [CrossRef]
- McDonagh JE. Transition of care from paediatric to adult services in rheumatology. Arch Dis Child. 2007;92(9):802–7. doi:10.1136/adc.2006.103796 [CrossRef]
- McDonagh JE. Young people first – JIA second. Arthritis Care Res. 2008;59:1162–1170. doi:10.1002/art.23928 [CrossRef]
- McDonagh JE, Jordan A. Transitional care for young people with connective tissue diseases. J Paediatr Child Health. 2010;20.2:79–82.
- Robertson L. When should young people with chronic rheumatic conditions move from paediatric to adult centred care?Best Pract Res Clin Rheumatol. 2006;20(2):387–397. doi:10.1016/j.berh.2005.11.005 [CrossRef]
- Tucker LB, Cabral DA. Transition of the adolescent patient with rheumatic disease: issues to consider. Pediatr Clin North Am. 2005;52(2):641–652. doi:10.1016/j.pcl.2005.01.008 [CrossRef]
- 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.
- 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.
- 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.
- Scal P, Horvath K, Garwick A. Preparing for adulthood: healthcare transition counselling for youth with arthritis. Arthritis Rheum. 2009;30:52–57.
- Scal P, Horvath K, Garwick A. Preparing for adulthood: healthcare transition counselling for youth with arthritis. Arthritis Rheum. 2009;30:52–57.
- 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. doi:10.1016/j.jadohealth.2010.07.009 [CrossRef]
- 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.
- Shaw KL, Southwood TR, McDonagh JEon 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. doi:10.1093/rheumatology/keh175 [CrossRef]
- 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. doi:10.1002/art.23244 [CrossRef]
- 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. doi:10.1542/peds.113.3.e197 [CrossRef]
- 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. doi:10.1001/jama.287.14.1832 [CrossRef]
- 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.
- Hollen PJ, Hobbie WL. Decision making and risk behaviours of cancer surviving adolescents and their peers. J Pediatr Oncol Nurs. 1996;13:121–133.
- Reeve DK, Lincoln NB. Coping with the challenge of transition in older adolescents with epilepsy. Seizure. 2002;11:33–39. doi:10.1053/seiz.2001.0574 [CrossRef]
- 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. doi:10.1093/jpepsy/jsn115 [CrossRef]
- 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 paediatric to adult settings. Int J Child Adol Health. 2010;3(4): 517–526.
- 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. doi:10.1016/S0828-282X(09)70145-X [CrossRef]
- 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. doi:10.1177/1367493506060203 [CrossRef]
- 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. doi:10.1111/j.1365-2214.2006.00698.x [CrossRef]
- 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. doi:10.1111/j.1365-2214.2006.00699.x [CrossRef]
- 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. 200655(2):189–98. doi:10.1002/art.21834 [CrossRef]
- 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. doi:10.1002/art.25008 [CrossRef]
- 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.
- 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.
- Betz CL, Redcay G. Dimensions of the transition service coordinator role. J Spec Pediatr Nurs. 2005;10(2): 49–59. doi:10.1111/j.1744-6155.2005.00010.x [CrossRef]
- 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. doi:10.2337/dc07-2247 [CrossRef]
- 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 Transplantation2009;9:614–619. doi:10.1111/j.1600-6143.2008.02515.x [CrossRef]
- 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. doi:10.1046/j.1464-5491.2002.00757.x [CrossRef]
- 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. doi:10.1016/j.jadohealth.2008.11.007 [CrossRef]
- 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.
- 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.
- 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. doi:10.1111/j.1365-2214.2008.00844.x [CrossRef]
- 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 Gastroenterol Nutrition. 2008;48:61–65. doi:10.1097/MPG.0b013e31816d71d8 [CrossRef]
- 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.
- 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] doi:10.1111/j.1399-3046.2010.01349.x [CrossRef]
- Donkervoort M, Wiegerink DJHG, Van Meeteren J, Stam HJ, Roebroeck ME. Transition to adulthood: validation of the Rotterdam transition Profile for young adults with cerebral palsy and normal intelligence. Dev Med Child Neuro. 2008;51:53–62. doi:10.1111/j.1469-8749.2008.03115.x [CrossRef]
- 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. doi:10.1093/jpepsy/jsp128 [CrossRef]
- Williams TS, Sherman EMS, Mah JK, Blackman 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.
- Department of Health. ‘You’re welcome’ quality criteria. Making health services young people friendly. May2011. www.dh.gov.uk. Accessed April 12, 2012.
- Shaw KL, Southwood TR, McDonagh JEon 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. doi:10.1093/rheumatology/keh216 [CrossRef]
- 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. doi:10.1177/0009922807310938 [CrossRef]
- 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. doi:10.1542/peds.2007-2217 [CrossRef]
- Gosden C, Edge JA, Holt RI, et al. The fifth UK paediatric diabetes services survey: meeting guidelines and recommendations?Arch Dis Child. 2010. Jul6. [Epub ahead of print] doi:10.1136/adc.2009.176925 [CrossRef]
- 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/transition. Accessed April 12, 2012.
- National Youth Agency. Hear By Right Charter. available at: www.nya.org.uk/quality/hear-by-right. Accessed July 23, 2011.
- McDonagh JE, White PH (editors). Adolescent Rheumatology. Taylor and Francis, New York, 2008
- Lazarus H. Adolescent Rheumatology (Book Review). N Engl J Med. 2008;359:1298. doi:10.1056/NEJMbkrev0804695 [CrossRef]
- 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)
- 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. doi:10.1093/rheumatology/keh163 [CrossRef]
- McDonagh JE, Minnaar G, Kelly KM, OConnor 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. doi:10.1080/08035250500449858 [CrossRef]
- Dieppe CR, Kumar M, Crome I. Adolescent exploratory behaviour – what do trainees know?J Adol Health. 2008;43: 520–522. Epub 2008 June 16. doi:10.1016/j.jadohealth.2008.03.001 [CrossRef]
- 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. doi:10.1016/j.jadohealth.2009.05.011 [CrossRef]
- 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.
- 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 Dis2006:65:74–80. doi:10.1136/ard.2004.032292 [CrossRef]
- Hambly H, Robling M, Corwne E, Hood K, Gregory JWfor the DEPICTED study team. Communication skills of healthcare professionals in paediatric diabetes services. Diab Med. 2009;26:502–509 doi:10.1111/j.1464-5491.2009.02708.x [CrossRef]
- Allen D, Gregory J. The transition from children’s to adult diabetes services: understanding the “problem.”Diabet Med. 2009;26(2):162–166. doi:10.1111/j.1464-5491.2008.02647.x [CrossRef]
- Kennedy A, Sawyer S. Transition from pediatric to adult services: are we getting it right?Curr Opin Pediatr. 2008;20:403–409. doi:10.1097/MOP.0b013e328305e128 [CrossRef]
- Jordan A, McDonagh JE. Recognition of emerging adulthood in UK rheumatology: the case for young adult rheumatology service developments. Rheumatology (Oxford). 200746(2):188–191. doi:10.1093/rheumatology/kel368 [CrossRef]
- 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. doi:10.1136/adc.2010.202473 [CrossRef]
- Steinberg L. A behavioral scientist looks at the science of adolescent brain development. Brain Cogn. 2010;72(1):160–164. doi:10.1016/j.bandc.2009.11.003 [CrossRef]