Pediatric Annals

CME Article 

Adolescent Rheumatology Transition Care in the UK

Janet E. McDonagh, MD, FRCP; Karen L. Shaw, PhD, PgCert, MBPsS

Abstract

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.

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…

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

Transfer Timing

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

Self-Management

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

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

Staff Training

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.

Conclusion

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.

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Authors

Janet E. McDonagh, MD, FRCP, is Senior Lecturer in Pediatric and Adolescent Rheumatology, Birmingham Children’s Hospital NHS Foundation Trust, Steelhouse Lane, Birmingham, UK. Karen L. Shaw, PhD, PgCert, MBPsS, is a Research Fellow in the Department of Nursing and Physiotherapy, University of Birmingham, Birmingham, UK.

Drs. McDonagh and Shaw have disclosed no relevant financial relationships.

Address correspondence to: Janet E. McDonagh, MD, FRCP, fax: 0121 333 8715; email: .j.e.mcdonagh@bham.ac.uk

10.3928/00904481-20120426-15

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