Transition of care from paediatric to adult rheumatology

Abstract

The origin of paediatric rheumatology in the UK mainly lies in adult rheumatology and this has proved invaluable in terms of transition provision, education and training, and collaborative research. The last 5 years have seen adolescent rheumatology gather momentum with the creation of an objective evidence base, a sound foundation for future work addressing the many unanswered questions and hypotheses in the area of transitional care. The aim of this paper is to review the evidence supporting the recent developments in transitional care within rheumatology. Acknowledging the non‐categorical nature of transition, the author will also refer to evidence from other chronic illnesses which has informed these developments.

Transition should never be considered a sprint, a baton pass or simply the event of transfer between paediatrics and adult care. Transition is in reality a marathon, starting on the day of diagnosis. Transition is an age and developmentally appropriate process, addressing the psychosocial and educational/vocational aspects of care in addition to the traditional medical areas. Transition starts within paediatrics but continues on into adult services and is therefore, by definition, a paediatric and adult concern. The specific evidence base supporting the need for, the processes, and the outcomes of transition will be discussed.

Evidence of need

Experience of young people themselves

There has been limited provision of transitional care in UK rheumatology centres with only nine of 61 units in the UK which see children reporting specific clinics for adolescents.¹ The consequences of such deficiency are that young people with chronic rheumatic diseases such as juvenile idiopathic arthritis (JIA) and their families have found transition challenging² similarly to their counterparts with other chronic conditions.³,⁴,⁵,⁶,⁷ There is evidence that the quality of medical care of young people with physical disabilities declines after transfer to adult services in the UK.⁵ The reduction in services following transfer and the lack of preparation for such differences are further concerns of young people with JIA and/or physical disabilities and their families in the UK.²,⁵,⁶

Adolescent onset disease

Adolescent health has particular importance in rheumatology. Musculoskeletal symptoms are the third most common reason for teenagers attending primary care⁸ and up to a third of JIA presents during adolescence.⁹ Adolescent onset disease provides particular challenges for health professionals, particularly if the patients are cared for in paediatric services with inflexible transfer policies fixated on mid adolescence. The prevalence of ongoing issues in the peri‐transfer period is a further challenge to paediatric and adult rheumatologists alike.⁹

Morbidity of rheumatic disease during adolescence and young adulthood

The exemplars of childhood‐onset chronic illnesses usually listed in the literature rarely include rheumatic disease despite its prevalence and significant reported morbidity. Adam et al reported that young people aged 12–19 years with “arthritis or rheumatism” reported greater effects on measures of mental health, health services use, school, work and home activities compared to individuals with other chronic diseases or without chronic disease.¹⁰ Such morbidity is not limited to adolescence. Over a third of young adults with JIA will have ongoing active joint inflammation¹¹,¹²,¹³,¹⁴ with significant burden and cost of illness.¹⁵ Other morbidities reported in young adults with JIA include osteoporosis,¹⁶ gynaecological problems,¹⁷,¹⁸ increased anxiety,¹⁹ depression (particularly in late adolescence),¹⁹ lower health perception,²⁰ relationship difficulties¹⁴,¹⁷,²¹ and reduced employment.¹¹,¹²,²²

Adolescent antecedents of adult morbidity

Since adolescence is the time when adult health promoting and self‐management behaviours become established, it is pertinent to reflect on the adolescent antecedents of the aforementioned adult morbidities and consider potential interventions during adolescence to limit the adult ill‐health burden on society. For example, osteoporosis is increasingly recognised in association with many chronic childhood‐onset diseases. In a population based study of adults with JIA (most of whom had arthritis limited to less than five joints), 41% of patients were osteopaenic.¹⁶ Three of the four risk factors for low bone mineral density included adolescent determinants, that is, calcium intake, lack of participation in organised sports and smoking during adolescence.¹⁶ Risk factors for vascular disease (eg, smoking, weight management, exercise) are also of particular relevance to young people with systemic lupus erythematosus (SLE) in view of the significant reported cardiovascular mortality in adulthood.²³ Such risk factors can be readily addressed within adolescent rheumatology clinics but will require age and developmentally appropriate interventions to be effective.²⁴

Delayed psychosocial milestones

Delay in achieving psychosocial milestones (including vocational and sexual) have been reported in several chronic illnesses²⁵,²⁶ including JIA.¹⁴,¹⁷,²¹,²² Several authors have reported increased unemployment in young adults with JIA,¹¹,¹²,²² which is not always related to disability or educational achievement. The importance and/or relevance of other markers of vocational readiness have been reported and include the lower expectations of professionals.²⁷ How vocational aspects of transition are addressed within rheumatology remains unclear, particularly as significant unmet training needs in occupational therapists – the professionals most likely to implement vocational strategies – have been reported.²⁸

Evidence of process

Planning

Integral to transition is the “envisioning of a future”²⁹ for the young person by all concerned. The importance of asking the question “what do you want to do when you leave school?” lies not so much in the answer as in the optimistic message the question itself conveys. Effective (and inclusive) planning is the main component of the process of transition. Lack of planning has been associated with increased admission of young adults to paediatric hospitals³⁰ as well as with young people with more complex diseases.⁶,³⁰ Furthermore, 40% of young people reported minimal or no involvement in the planning process.⁷ Despite national guidelines, studies from the UK and North America have all reported suboptimal prevalence of transition planning.³¹,³² In a national survey of rheumatology professionals, 77% considered individualised transition plans to be very important for young people and their parents.³³ Such plans, developed following an extensive national needs assessment,²,³³,³⁴,³⁵ addressed a variety of health, psychosocial and educational issues and are successfully completed by the majority of young people in both clinical³⁶ and research settings³⁷ (table 1). Further sources of similar plans and other transition resources are listed in table 2.

Table 1 Issues specifically addressed in individualised transition plans for young people with juvenile idiopathic arthritis.

Health transitions

Arthritis

Knowledge, treatment, outcome

Pain and fatigue management

Independent calls/visits, self‐medication, adherence

Procedural pain management including intra‐articular injections

Self‐management when travelling away from home

Generic health: exercise, sleep, sexual health, smoking, alcohol,

recreational/illegal drugs

Home transitions

Chores, independence, self‐care, benefits, mobility, driving, social and

peer support

Educational/vocational transitions

Career plan, work experience

Impact of arthritis, disclosure

Table 2 Examples of web based resources for transition.

UK

http://www.transitioninfonetwork.org.uk

http://www.dh.gov.uk/transition

http://www.dreamteam‐uk.org

http://www.transitionpathway.co.uk

http://www.youngminds.org.uk/publications/booklets/adulthood.php

http://www.tsa.uk.com

Australia

http://www.rch.org.au/transition

USA and Canada

http://www.door2adulthood.com

http://hctransitions.ichp.edu

http://depts.washington.edu/healthtr/index.html

http://chfs.ky.gov/ccshcn/ccshcntransition.htm

Written policy

In addition to individual planning, planning within a rheumatology service is important. A written transition policy has been advocated for every specialty clinic,³⁸ although the existence of such policies in practice remains uncertain.³⁶ It should be emphasised that the actual exercise of policy development within the rheumatology team involving both paediatric and adult teams is as important as the content of the actual written document. Transition policy templates can therefore usefully serve as both a clinical service as well as an educational document, particularly when there are limited training opportunities available. A key component of the policy is the nomination of a particular person responsible for the strategic coordination of transitional care. However, which member of the multidisciplinary team is best to take this role on is likely to vary according to available resources. In one study, nurses have been reported to be more likely than other providers to demonstrate transition.³⁹ In a multicentre research study of transitional care involving nurses, occupational therapists and physiotherapists in a coordinating role, adolescents with JIA perceived the role, irrespective of the profession, to be better than paper based resources.³⁶

Timing

The essence of transition is flexibility, acknowledging the need that it should be age and developmentally appropriate, particularly when development (physical, psychosocial and/or cognitive) may be delayed in the context of chronic illness. Timing of transition should never be solely determined by chronological age but rather by a combination of physical and cognitive maturity, current medical status, the state of preparation of the young person and/or their family, and the readiness of the young person and/or their parent/guardian.

In the author's centre, the transitional care programme commences when the patient is around 11–12 years old, ideally coinciding with their move to secondary school and/or entry into early adolescence. The greatest improvement in knowledge following participation in an evidence based transition programme was observed in 11 year olds as compared to 14 and 17 year olds.⁴⁰ Early intervention has been reported to be associated with more favourable vocational outcomes.⁴¹

Programme

Although there have been many papers discussing transition, few objectively evaluated programmes have been described in detail in the literature. In the UK, following an extensive national needs assessment,²,³³,³⁴ a Delphi study was conducted to determine the consensus on what was best practice and feasible with respect to transitional care for adolescents with JIA.³⁵ A summary of the results is detailed in table 3. These results were then used as a framework for the development of a transitional care programme which has been described in detail³⁶ and its evaluation reported elsewhere.⁴⁰

Table 3 Best practice and feasibility of aspects of transitional care according to a Delphi panel.

Aspects of care strongly agreed to be best practice and considered as highly feasible in most UK centres:

Address young people's psychosocial and educational/vocational needs

Use an individualised approach

Provide honest explanations of the adolescent's condition and associated

health care

Provide opportunities for adolescents to express opinions and make

informed decisions

Have continuity in health personnel

Give adolescents the option of being seen by professionals without their

parents

Aspects of care agreed to be best practice, but considered as having limited feasibility in most UK centres:

Multidisciplinary teams (consultants only)

Professionals who are knowledgeable about adolescent development

Age appropriate physical environment

Dedicated adolescent environments (eg, adolescent waiting areas)

Proving opportunities to meet similar others

*The panel included young people with juvenile idiopathic arthritis, their parents and relevant health professionals.³⁵

Skills training

A useful concept in transitional care is to remember that young people are new users of health services previously accessed by parents on their behalf. Skills in navigating and negotiating health care services are important for all young people and particularly those with chronic illnesses and/or disability.

One such skill is accessing health care independently of parents. Giving adolescents the option of being seen by professionals without their parents was considered best practice and feasible in a Delphi study.³⁵ Young people value this opportunity.²,⁴² In current practice, however, only a minority are seen alone,³¹ which may be their choice or because they do not realise that they are able to choose to be seen independently. Young people need to be given the skills (and confidence) to be seen independently of their parents and this in turn is a gradual process. Independent visits have been shown to be one of the few determinants of attending appointments at one adult grown up congenital heart disease (GUCH) clinic.⁴³ Furthermore, it has been reported to be one of the five main ways to demonstrate transition³⁹ and is associated with improvement in health related quality of life in adolescents with JIA.⁴⁰ It should always be stressed, however, that it remains the choice of the young person as to who accompanies them and that the right to confidentiality as well as to a chaperone remain. However, the latter should not be assumed to be their parent.

Another transition skill is that of disclosure of a condition and/or disability. This was identified as a concern of young people with JIA² and is an issue highlighted by authors in other specialties including sickle cell disease.⁴⁴ To be able to disclose you need to know something about your condition. Knowledge deficits,⁴⁵ even in long‐term clinic attendees,⁴⁶ have been reported in JIA with similar findings in populations of young people with cancer⁴⁷ and congenital heart disease.⁴⁸ Provision of informational resources in addition to appropriate signposting of other agencies are therefore integral to a transitional care service and are quality criteria for adolescent friendly service.⁴⁹ A range of modalities are important²,⁵⁰ as no two young people are the same, nor are the needs of one young person consistent across time. There is a growing evidence base in the literature that skills training for young people with chronic illnesses can be associated with positive outcomes. For example, a psycho‐educational group intervention in a heterogeneous cohort of young people with chronic illnesses was associated with improvement (short and medium term) in behavioural‐emotional outcomes, social competence, information seeking, relaxation and positive thinking.⁵¹

Parents

As well as addressing the transitional needs of young people, the needs of the parents require attention during adolescence as the role of parents is evolving throughout. Transitional programmes need to remain inclusive of parents, enabling them to become good advocates for their children with appropriate levels of protectiveness and support to foster resilience. However, a third of health professionals reported parental difficulties during transition and perceived parental and family factors as influences of successful transition.³³ Discrepancies between professional and parental perspectives⁵² in addition to those between parent and adolescent⁵³ need to be acknowledged and sensitively negotiated during transition.

Parents have suggested ways for health professionals to help them to become better advocates for their children.² These include professionals actively involving young people during consultations and continuity in professionals to build trust. Under these circumstances, parents perceived they would be able to gradually withdraw from their primary role in triadic consultations.² However, they also proposed that this would provide time for their own needs to be met² with respect to parenting an adolescent with a chronic illness and/or disability as advocated in the National Service Framework for Children and Young People.³⁸ In a US based study of adolescents with sickle cell disease, Telfair et al reported that 44% of adolescents reported that transition programs should offer “ways to help parents let their adolescents grow up”!.⁴⁴ Such service provision has obvious resource allocation demands in terms of clinic space and/or time in addition to staffing levels, particularly for those practitioners not working within a multidisciplinary team.

Administrative transfer

The actual physical transfer of information is a concern of the young people and their parents²,⁵⁴ with a suboptimal exchange being reported by several authors.³¹,⁵⁵ The thin set of hospital notes on the adult rheumatologist's desk at the first visit might convey the message to the young person that the adult team do not know anything about the young person who had four volumes of notes in the children's hospital or it may convey a new start for the emerging young adult! Providing the young person with their own summary prior to transfer, either in paper form or on a memory stick, can alleviate some of these concerns for the young person. Ideally this could be incorporated into the disease education programme with the summary being developed with active involvement of the young person (see www.healthspace.nhs.uk;http://depts.washington.edu/healthtr/healthhistory/default.html).

Psychosocial transitions

A useful psychosocial screening tool for use in routine assessment of psychosocial transitions is the HEADSS acronym originally described by Goldenring⁵⁶ and shown in a modified format for adolescent rheumatology clinics in table 4. It serves as a useful strategy both to engage young people and to assess level of risk and assist in the formulation of the transition plan.

Table 4 A psychosocial screening tool for adolescent rheumatology clinics*.

		Areas for discussion	Examples of useful trigger questions
H	Home	Assessment of the dynamics between family members.	Where do you live? Who do you live with? Who are you closest to?
		Involvement in household chores	Who do you go to if you have a problem?
E	Education	Day to day management at school	Are you at school? What year are you in?
		Access and ergonomic issues	What is your favourite subject? What do you want to do when you
		Transition to further education, training and/or	leave school? Do you think your condition will affect this?
		employment
		Work experience
		Expectations of young person, their family, professionals
		Awareness of available resources
	Exercise		How do you keep fit? What about dancing, martial arts…
A	Activities	Extra‐curricular activities	Tell me about your friends. How many friends do you have? What
			are their ages?
		What interests the young person	What do you do with your friends out of school?
		Peers, friendship circles, disclosure	What can you do on your own? What would you like to do on your own?
			Do your friends know about your condition? What have you told them?
	Affect	Mood, adjustment to chronic illness, self‐harming	Many young people feel down or sad at times. When did you last feel
		behaviour	like this? Have you ever felt that life is not worth living? Have you ever
			felt like hurting yourself?
	Ambition	Career aspirations, dreams!	What do you want to do when you leave school? If your condition
			disappeared tonight, what would you do tomorrow?
D	Drugs and	Understanding of implications of drug therapy	Some young people experiment with cigarettes/drugs/alcohol. In your
	substance	and condition as well as healthy living	year at school, do people smoke/drink/use street drugs? What about your
	use		friends? and you?
		Awareness of available resources	Where would you go to get help/advice about ….?
			Problem solving strategies, eg “Imagine you are at a party and your
			friends are drinking and you are aware that you have had your limit for
			your methotrexate, what do you do?”
	Driving	Preparation for driving
		Use of public transport
	Diet and	Specific dietary issues (eg, bone health, obesity, steroid	How do you compare yourself to peers in your class/grade? How do you
	weight	therapy), abnormal eating behaviours	feel about the size you are? Would you like to be taller/shorter, fatter/thinner?
	management	Body image issues	What part of your body do you like the most/the least?
S	Sleep	Sleep hygiene issues	Do you feel refreshed when you wake up? Do you have a TV/computer
		Fatigue	in your room?
	Sex	Sexuality	Most young people become more interested in closer relationships at your
		Contraception	age. Do you have a close friend? Have you ever been sexually active?
		Parenting	What does “safe sex” mean? Do you know where to go to for advice
		Awareness of available resources	regarding sexual health/contraception?

*Modified for use in adolescent rheumatology from original not proposed by Goldenring and Cohen.⁵⁶

Of note, several generic health issues are addressed in this tool including sexual health and substance use, both of which have specific relevance to antirheumatic therapy with drugs such as methotrexate.⁵⁷ Consideration of the wider concept of health is vital to transitional care, particularly in view of the adolescent antecedents of adult health described above in addition to the way in which adolescents access health care in general. Rheumatology professionals should be aware that they may be the only health professional trusted by individual young people and therefore it is important that those working in adolescent rheumatology at least have basic signposting skills and knowledge. Although there is no difference in the prevalence of risk behaviours compared with healthy controls,⁵⁸ onset of such behaviours in adolescence may be delayed in patients compared to their peers.⁵⁹ Young people are unlikely to initiate discussion of sensitive issues⁶⁰ and adolescent rheumatology professionals need to practice a proactive approach with trigger questions such as “some young people with JIA worry about…. have you ever worried about this? If you ever do, know you can ask me”. Knowledge of and skills in accessing other relevant agencies are also important to assess.

Models

It is not yet known which transition model is associated with the best outcomes. Various models have been proposed,⁶¹ many of which are used in practice within the UK. Although paediatric rheumatology (including training programmes) is now firmly based within paediatrics, there are still young people in the UK who receive all their rheumatology care from adult rheumatologists. “Cradle to grave” care from adult rheumatologists may have its advantages for adolescents as care will not need to be transferred as for those young people within paediatric services. However, unmet adolescent health training needs of adult (and paediatric) rheumatology professionals have been identified³⁴ and adolescent rheumatology has only recently been specifically detailed in the adult rheumatology UK training curricula. Furthermore, although young people who had the same rheumatology team from diagnosis through to adulthood expressed fewer concerns about transfer, they did report that professionals who had known them as children failed to see them as the young adults they now were and failed to respond to their changing needs.² These participants also found it more difficult to be seen independently as there was no natural break in the status quo.² The re‐registration proposed for adolescents within primary care⁶² may be worthy of consideration within secondary care.

As in the US,⁶³ the majority of transition models in rheumatology are specialty based rather than generic based. One exception is the young adult team for young people with disabilities in Leeds which has been shown to cost no more to implement than an ad hoc approach and was more likely to enhance participation of involved young people in society.⁶⁴ Tucker and Cabral have described a model of a “young adults with rheumatic disease” (YARD) clinic for young people aged 18–24 years⁶⁵ involving both paediatric and adult rheumatology professionals. The young adult clinic concept is particularly appropriate to address the discrepancy between the average age and/or case mix of patients between paediatric and adult clinics (eg, diabetes, arthritis).⁶⁶ Furthermore, they potentially facilitate uninterrupted health care provision of age and developmentally appropriate care and the completion of the other key adolescent transitions in terms of vocation, independent living, etc. Finally, young adult clinic development will facilitate the development of transitional care and adolescent health care provision within the adult facility and potential paediatric–adult collaboration in terms of clinical service, education, and training and research.⁶⁶ Interestingly, Telfair reported that professionals who saw both adolescent and adult patients were the best professionals at demonstrating transition.³⁹

Evidence of outcome

The benefits of transition have been reported by several authors in terms of improved follow‐up for young people with JIA,⁶⁷ improved satisfaction for young people with cystic fibrosis,⁴²,⁶⁸ improved disease control in young people with diabetes⁶⁹,⁷⁰ and adherence to appointments post transfer.⁷¹ Results from a large multicentre study of an evidence based coordinated transitional care programme in rheumatology has reported significant improvements at 6 and 12 months for adolescents and their parents compared to baseline in terms of health related quality of life, knowledge, satisfaction with health care and vocational readiness.⁴⁰ In the latter study, a centre audit also reported significant improvements in the documentation for transitional care issues following centre participation in the project.³¹ There are, however, challenges to translating into and maintaining these research findings in clinical practice in the current climate of the NHS.

Conclusions

In summary, there is an evolving evidence base supporting the need for, the processes and the positive outcomes of transitional care within rheumatology. The change from the British Paediatric Rheumatology Group to the British Society of Paediatric and Adolescent Rheumatology was welcomed by adolescent advocates in the profession and hopefully other organisations might be similarly enlightened! Against the background of limited training opportunities in adolescent health and the resulting lack of awareness,⁷² the distinct nature of adolescent health needs to be acknowledged in clinical service provision, education and training, research and current literature.⁷³ Transitional care is an area ripe for development in all these areas and will require the involvement of young people themselves and their families and/or carers as well as paediatric and adult care providers in health, education, social services and the voluntary sector if the true picture is to be realised. Recognition of the non‐categorical nature of transition in the context of chronic illness and/or disability and subsequent sharing of knowledge and expertise between specialities will aid the “walking of the (transitional care) talk”. In so doing, we can help improve the health related quality of life of all young people with chronic illness and/or disability, including those with rheumatic disease, and enable them all to reach their true potential!