Recognition of emerging adulthood in UK rheumatology: the case for young adult rheumatology service developments

Current available evidence is persuasive of the need to improve the transition and transfer of young people with chronic rheumatic disease to adult-centred rheumatology services [ 1 , 2 ]. Recent years have witnessed the arrival of long-awaited governmental support for this in the form of several major documents including the National Service Framework (NSF) for Children, Young People and Maternity Services [ 3 , 4 ] and Transition: Getting it Right [ 5 ]. These have been further supported by important documents from professional bodies including the Royal College of Paediatrics and Child Health [ 6 ] and the Royal College of Nursing [ 7 ]. Although transition starts ideally in early adolescence, it does not finish until the young adult is participating fully in adult health care. Much of the research in transition has been paediatrically driven and it is now timely to start addressing what happens following transfer to adult-centred care. This article proposes one way forward—that of developing rheumatology services specifically for 16- to 25-yr-olds—and presents the evidence to support it. Unfortunately age criteria is a well-recognized barrier within adolescent health developments. In the following discussion, the term adolescent will refer to 10- to 19-yr-olds (as defined in the National Service Framework for Children, Young People and Maternity Services, NSF) [ 3 , 4 ] and the term young adults to incorporate late adolescence and the early twenties i.e. up to the age of 25 yrs. The rationale for young adult rheumatology services centres on the need for age and developmentally appropriate care for all young people ( Table 1 ). The reciprocal influences and inter-relationships of growth and development (physical, psychosocial and cognitive) on health and illness during the whole duration of adolescence [ 8 ] must be acknowledged by health professionals involved in the care of such young people. Adolescence has major sociocultural influences which are potentially prolonging adolescent development into the twenties. The same sociocultural shifts are loosening the linkages between the health, psychosocial and vocational transitions which characterize adolescence and young adulthood and making them less age-related and more complex. For example, although the young adult may be in full-time education or employment, they may still be residing in the parental home i.e. not yet made that transition to independent living! With the increasing numbers going into higher education, the transition into employment is also delayed. There have been recent calls from psychologists to recognize this stage as another stage of adolescent development—that of ‘emerging adulthood’ [ 9 , 10 ]. This period of late adolescence and young adulthood too often is at risk of becoming a twilight zone with young people falling out of paediatrics, but not yet successfully falling into and participating fully in adult medicine. Reassuringly, the definition of youth by some governmental policy statements [ 11 , 12 ] in addition to the European Union [ 13 ] have elected to include the ‘invisible early twenties’ [ 12 ]. Rationale for the development of services for young adult rheumatology service developments Rationale for the development of services for young adult rheumatology service developments A disproportionate prevalence of disadvantage is reported in the 16- to 25-yr-old age group in the UK [ 12 ], the age band which represents 11% of the UK population. Data suggests that there are significant numbers of 16- to 25-yr-olds with musculoskeletal conditions who could potentially benefit from such services [ 14 ] ( Table 2 ). Turner et al . [ 15 ] reported one whole time equivalent consultant rheumatologist per 164, 165 of the UK population in 2001. Using this data, a consultant rheumatologist could potentially have 745 young people aged 16 to 24 yrs with conditions associated with disability as defined in Table 1 , i.e. who would potentially require medium to long-term follow-up. Musculoskeletal conditions in 16- to 25-yr-olds in the UK [ 14 ] mHAQ, modified Health Assessment Questionnaire score. Musculoskeletal conditions in 16- to 25-yr-olds in the UK [ 14 ] mHAQ, modified Health Assessment Questionnaire score. Musculoskeletal morbidity during adolescence is not without consequence. In a large Canadian study, greater effects on measures of mental health, health services use, school, work and home activities of affected individuals (12- to 19-yr-olds) compared with individuals without chronic disease or with other chronic disease have been reported [ 16 ]. With two-thirds of childhood pain being musculoskeletal [ 17 ], the evidence that reports of pain during childhood and early adolescence are associated with reports of pain in early adulthood [ 18 ] supports the provision of age appropriate pain management programmes [ 19 ]. This is particularly pertinent when the cost-of-illness to UK society of adolescent chronic pain has been estimated to be a staggering £3840 million p.a. [ 20 ]. In a large multicentre study of adolescents with juvenile idiopathic arthritis (JIA) in the UK, the greater pain scores were observed in the 17-yr-old cohort i.e. those about to transfer to adult care [ 21 ]. Young people with JIA present adult services with significant morbidity at the time of transfer. In a national cohort of 17-yr-olds with JIA, 80% had active disease, 54.6% had moderate-to-severe disability and 67.5% were requiring disease-modifying anti-rheumatic drugs. With respect to competencies to participate fully in adult rheumatology care, 68.5% had not had any joint injections without general anaesthetic, 55.8% had not seen the rheumatologist independently of their parents and 20% were not yet self-medicating [ 21 ]. In a later study, a third of patients with JIA in the authors’ institution had unresolved issues at transfer to adult care despite involvement in a paediatrically based transitional care programme [ 22 ]. In a national UK study, young people (adolescents and young adults) with JIA have reported significant difficulties with transfer to adult care including the preparation for the reduction in services such as therapy following transfer [ 2 ]. Young people have reported finding adult rheumatology environments isolating, particularly with reference to the discrepancy between the average age and case mix of patients between paediatric and adult clinics [ 2 ]. As in rheumatology-based studies [ 2 ], other studies have reported that although young people with chronic illness may be reluctant to leave paediatric care; they also favoured changes towards more adult-oriented care [ 23 , 24 ]. The outcome of JIA into adulthood and the significant burden and cost of illness [ 25 ] provides further support for developmentally appropriate services. The reported morbidities in terms of mental health [ 26 ], relationship difficulties [ 27 , 28 ], health perception [ 29 ], general exercise [ 29 ], sexual and reproductive health [ 27 , 28 ], osteoporosis [ 30 ] and vocation [ 31–33 ], all have significant adolescent antecedents. In the context of chronic rheumatic illness, development with respect to many of these issues may be further delayed. For example, although there is no difference in the prevalence of risk behaviours with healthy controls [ 34 ], onset of such behaviours may be delayed later in adolescence compared with their peers [ 35 ]. Such data raises questions regarding the availability of professional expertise in adult rheumatology services for young adults addressing such issues as vocation and mental health. The importance of the 16- to 25-yr-old age range with respect to vocational morbidity has been highlighted by reports of significant divergence of experience and aspiration in early adulthood, among young adults with disability and their non-disabled counterparts in the UK, not present at 16 yrs [ 36 ]. Mental health professionals have proposed that the 16- to 19-yr-old age range must be accorded a separate identity with greater consideration of their need [ 37 ]. The latter is particularly pertinent in view of the reports of young adults with JIA. Of the fifth who reported depression at some time, over a third reported their first episode of depression as occurring between the ages of 15 and 25 yrs [ 26 ]. Adolescent onset disease presents particular challenges to health professionals particularly if they are in adult-centred care or in paediatric care with transfer policies fixated on mid-adolescence. Up to a third of JIA presents during adolescence [ 21 ] and over three-quarters of childhood systemic lupus erythematosus (SLE) starts in 11- to 16-yr-olds [ 38 ]. Chronic idiopathic pain syndromes also classically have a peripubertal, early adolescent onset [ 39 ]. The decision to transfer to adult care should not just rest on local policy but also consider maturity both physical and cognitive, current medical status, adherence, independence, preparedness and readiness of both the young person and the parent. The NSF states that a flexible approach is called for with respect to timing of transition and one that takes developmental readiness into account and links to other social transitions such as leaving school [ 3 ]. This is echoed by the Royal College of Paediatrics and Child Health who have stated that transfer should not happen until growth and puberty is complete [ 6 ]. Adolescent rheumatology care delivered by adult rheumatologists has also not been formally evaluated to date. The knowledge and/or awareness of the NSF and other documents pertaining to adolescent-friendly services (inclusive of adolescents up to the age of 19 yrs [ 3 , 4 , 40 ] is not yet known in adult rheumatology. The ‘cradle to grave’ care by adult rheumatologists may have it's advantages for adolescents as care will not need to be transferred compared with those young people within paediatric services. However, although young people who had the same rheumatology team from diagnosis through 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 care [ 41 ] may be worthy of consideration within secondary care. In view of the above evidence, the recent inclusion of adolescent health into adult rheumatology training curricula nationally should be warmly welcomed by paediatric and adult rheumatologists alike. In support of this, Telfair et al . [ 42 ] reported that providers treating both adolescent and adult populations were more likely to demonstrate transition in practice compared with other professionals. As adolescent rheumatology and transitional care is, by definition, multidisciplinary, inclusion of adolescent health into the national training curricula at undergraduate level and of nursing and allied professionals working in paediatric and adult sectors will similarly be welcomed. In these times of fiscal prudence, the evidence of benefits of new service development is necessary. Although formal cost-evaluation of current young adult rheumatology services [ 38 ] have not been reported, the current literature can still provide us with some useful information in this regard. Bent et al . [ 43 ] reported that a young adult team approach to the care of young people with a range of disabilities in this age group (including JIA) costed no more to implement than an ad hoc approach and was more likely to enhance participation of such young people in the society. Evaluation of young adult services in diabetes has shown no negative impact on glycaemia control [ 44 ] which can be adversely affected at this time. Young people themselves welcome services which actively involve both paediatric and adult providers at this time [ 2 , 45–48 ]. Such services have been associated with improved adherence to appointments following transfer [ 48 ]. An evidence-based transitional care programme in rheumatology has been reported to improve health-related quality of life, vocational readiness, satisfaction with health care and knowledge for adolescents aged 11- to 17-yrs-old [ 49 ]. However, it remains unknown if such improvements can be sustained following transfer and into adulthood and whether they will positively influence the long-term outcomes of JIA in adulthood. Such research will only be feasible with effective collaboration between paediatric and adult rheumatologists and would be readily facilitated by young adult service developments. Although the latter are unlikely to be completely cost-neutral, there is much that can happen without extra resources with a ‘creative’ shift in attitude and approach to young people and transition by health professionals. Some practical tips to consider when embarking on developing a young adult rheumatology service are listed in Table 3 . If health care commissioners support rheumatology in embarking on such a venture, mutual respect between paediatric and adult providers will be the key for success. Flume et al . [ 50 ] reported that there were higher perceived concerns in paediatric programme directors for cystic fibrosis compared with their adult counterparts. Telfair et al . [ 42 ] explored these differences further and reported differences between genders of provider, whether they worked in an urban or rural practice and whether they treated adults and adolescents. Integral to the development of such respect will be mutual acceptance of the well-described differences in culture of care between paediatrics and adult medicine [ 51 ]. Practical tips to ‘Make it Happen!’ Practical tips to ‘Make it Happen!’ In summary, young adult rheumatology services will facilitate the age and developmentally appropriate care this age group deserve. Such services will reflect the differences between child/adolescent onset disease and adult-onset disease and the important transitions occurring between 16 and 25 yrs in terms of health, education, vocation and independent living. Transitional care can then be completed within adult facilities and, hopefully, improve in time the long-term outcome of these young people, who deserve to be enabled and empowered by rheumatology professionals so that they can grow up ready to live long, enriched and independent lives as adults. Thanks are extended to the West Midlands Deanery for helping to facilitate a 6-month post in adolescent rheumatology of A.J. during her adult rheumatology training. Thanks are also extended to the adult rheumatologists within the West Midlands who provide ongoing invaluable support to the authors and in particular, Dr Elizabeth Rankin and Dr David Carruthers who have taken this further in setting up young adult clinics in Birmingham. The authors have declared no conflict of interest.