12 When should young people with chronic rheumatic disease move from paediatric to adult-centred care? Lindsay Robertson * Consultant Adult Rheumatologist Plymouth Hospitals NHS Trust, Derriford Hospital, Derriford Road, Plymouth PL6 8DH, UK Many young people with childhood-onset diseases, including rheumatic diseases, continue to require medical care into adult life. There are many differences between paediatric and adult health care which can make this change a dramatic and difficult one for young people and their families. Transitional care services aim to equip young people with the appropriate knowledge and skills to cope with this change. This chapter will describe the differences between transition and transfer, and the different perspectives of those involved in the transition process, and will discuss the determinants of a successful transfer. Transition models currently used in practice will also be described, as will the evolving evidence base that is contributing to the further development of transitional care services. Key words: transition; transfer; juvenile idiopathic arthritis; adolescent health care. The move from adolescence to adulthood involves considerable change: moving from school to higher education, training or employment, from living with family/carers to more independent living, etc. Add a chronic disease into this period of a young person’s life and a further change occurs: that of moving from child- to adult-centred health care. The profile of this aspect of rheumatology and other specialties that also have patients moving from child to adult services has increased in recent years. This is because it has become evident that many young people with childhood-onset diseases continue to require medical care for either active disease or the consequences of active disease in adult life. 1 In addition, with improved care, what used to be solely diseases of childhood are now becoming diseases that begin in childhood and continue into adult life. 2,3 This chapter aims to describe the differences between transition and transfer and the evolving evidence base to support development of transitional care services. Best Practice & Research Clinical Rheumatology Vol. 20, No. 2, pp. 387–397, 2006 doi:10.1016/j.berh.2005.11.005 available online at http://www.sciencedirect.com 1521-6942/$ - see front matter Q 2005 Elsevier Ltd. All rights reserved. * Tel.: C44 1752 517895; Fax: C44 1752 763747. E-mail address: [email protected].
Transcript
Best Practice & Research Clinical RheumatologyVol. 20, No. 2, pp. 387–397, 2006
Many young people with childhood-onset diseases, including rheumatic diseases, continue torequire medical care into adult life. There are many differences between paediatric and adulthealth care which can make this change a dramatic and difficult one for young people and theirfamilies. Transitional care services aim to equip young people with the appropriate knowledge andskills to cope with this change. This chapter will describe the differences between transition andtransfer, and the different perspectives of those involved in the transition process, and will discussthe determinants of a successful transfer. Transition models currently used in practice will also bedescribed, as will the evolving evidence base that is contributing to the further development oftransitional care services.
Key words: transition; transfer; juvenile idiopathic arthritis; adolescent health care.
The move from adolescence to adulthood involves considerable change: moving fromschool to higher education, training or employment, from living with family/carers tomore independent living, etc. Add a chronic disease into this period of a young person’slife and a further change occurs: that of moving from child- to adult-centred health care.The profile of this aspect of rheumatology and other specialties that also have patientsmoving from child to adult services has increased in recent years. This is because it hasbecome evident that many young people with childhood-onset diseases continue torequire medical care for either active disease or the consequences of active disease inadult life.1 In addition, with improved care, what used to be solely diseases of childhoodare now becoming diseases that begin in childhood and continue into adult life.2,3
This chapter aims to describe the differences between transition and transfer andthe evolving evidence base to support development of transitional care services.
doi:10.1016/j.berh.2005.11.005available online at http://www.sciencedirect.com
1521-6942/$ - see front matter Q 2005 Elsevier Ltd. All rights reserved.
Transfer is described as an event that happens on one occasion when information orpeople move from one place to another. In the context of moving from paediatric toadult care, the moment of transfer can be considered to have happened when thepaediatrician discharges a young person from their care and sends a referral to an adultphysician or when the adult health-care team sees a patient for the first time. It is veryimportant that clinical responsibilities at this time are clearly defined by the paediatricand adult teams involved, so that it is clear to the patients and their families and to thehealth professionals who have the responsibility for the young person’s health care atany one time. This is particularly important for situations when urgent advice is soughtduring this period.
Transition is defined as a multifaceted active process that attends to the medical,psychosocial, and educational/vocational needs of adolescents as they move from child-orientated to adult-orientated life styles and systems.4 The aims of transition are toprovide coordinated, uninterrupted health care that is age-appropriate, developmen-tally appropriate and comprehensive. Promotion of skills training in communication,decision-making, assertiveness and self care are integral to transition, so that on movingto adult care a young person has control and independence with respect to their healthcare.
All young people go through transition processes which enable them to becomeindependent adults. Within medical care it is increasingly recognized that preparationfor the event of transfer is required for young people with chronic disease, and this hasled to the development of transitional care services in a variety of specialties: e.g.diabetes, cystic fibrosis, congenital heart disease and rheumatology. The move fromchild to adult clinics can be very daunting for a young person and their family. Closerelationships and trust with a paediatric team may have developed over many years, andleaving these behind can be difficult. The move to an adult service may also be seen asrepresenting a step closer to death or complications.5 Eiser et al found that in a surveyof patients attending a diabetic clinic for under-25-year-old, paediatricians wereperceived to emphasize family and social life, school or work progress; in contrast, adultphysicians tended to stress the risk of long-term complications, importance of exercise,and the need to maintain strict levels of glycaemic control.6 Paediatric and adult-centred care are very different, and it is important that young people, their families andhealth professionals are aware of these differences and are prepared for the changes(Table 1).
Table 1. The differences between paediatric and adult care.
Paediatric care Adult care
Family-orientated Individual-focused
Developmental aspects considered Focuses on health specifically
Coordination with schools and social services Less communication with social services and
workplace
More help with treatment regimes More accepting of treatment refusal
More trainee supervision Less trainee supervision
Paternalistic Shared treatment decisions with patient
From paediatric to adult-centred care 389
The adolescent/young adult period is not the primary focus of either paediatric oradult medicine, and consequently there is not a large amount of evidence on medicalcare during this phase of life7, or indeed appropriate training for all health professionalsinvolved in their care. However, the importance of this aspect of service provision isbeing increasingly recognized. Formal training programmes have been developed inCanada, Europe and Australia, but are not yet universally available.8–10 Healthy youngpeople do not necessarily fare any better than those with chronic conditions. Accessingadult health care when only forced to by circumstances results in neglect of primary/preventative care issues which are more difficult to address in emergency departmentsand drop-in clinics.11
PERSPECTIVES OF TRANSITION
Qualitative research to date has given some useful information about the perspectivesand attitudes of young people towards transition and transfer to adult services. A UKstudy of transition processes for physically disabled young people in three schooldistricts found that young disabled people experienced a poor handover to adultservices if they had no ‘statement of special educational need’ or if they went to furthereducation college. Young people with cerebral palsy or complex multiple problemsfared less well than those with spina bifida or juvenile arthritis.12 A survey of youngadults with cystic fibrosis (CF) pre- and post-transfer to an adult CF clinic found that ifquality of care was presumed to be good in the adult clinic, participants had a morepositive attitude to the transition programme provided.13
Some studies have highlighted the variation in the perceptions about transfer andtransition between young people, their parents, and paediatric and adult health-careproviders. In a survey of 743 parents of young people with special health-care needs and141 health professionals (primary paediatricians), Geenen et al found that time, training,financial constraints and other issues such as discomfiture, lack of applicability, anddifficulty accessing resources were the barriers perceived by the health professionals.14
However, there were significant differences between health professionals and parentsconcerning both the level of health professional involvement and the extent to which itwas the health professional’s responsibility to assist in various transition activities. Thehealth professionals reported significantly more involvement than parents perceivedthem to have for some transitional activities such as talking to the young person aboutalcohol, drugs and sexual issues, and teaching young people how to manage health.Parents also expressed the view that such issues/activities were less of a role for thehealth professional than the health professionals perceived. One of the lowest scores inthe parent group was for the perceived involvement of the health professional in findinganother professional to care for the young person in the adult setting, despite agreeingwith health professionals that involvement was appropriate.14
From a survey of paediatric and adult cystic fibrosis programme directors in the US,Flume et al found considerable differences between the perceptions of paediatric andadult programme directors as to the concerns of patients, parents, paediatric staff andadult staff.15 Paediatric programme directors perceived greater concerns than did adultprogramme directors-including higher perceived concerns in all parties, concerns aboutthe adult CF team’s ability to meet the medical and emotional needs of the patient-andalso viewed patients having greater concerns about severing strong relationships withpaediatric staff.15
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In a large multicentre study of transitional care for young people with juvenileidiopathic arthritis (JIA), Shaw et al conducted focus groups with adolescents and youngadults with JIA and their parents/carers in three geographical regions in the UK.16 Theyoung adults who had already undergone transfer to adult services described theprocess as having been sudden and that they had felt ill-prepared. Participants describedthemselves as having been ‘dumped’ or ‘tossed’ into adult services and felt ‘abandoned’by their paediatric health providers. Those who required a change in health-care teamand/or clinic and those who had known their paediatric team for many years found themove to adult care particularly stressful. Young people and their carers cited manyconcerns with respect to the prospect of transfer. These included lack of expertise,empathy and resources in adult care. There was also considerable criticism of thecoordination between services, which resulted in poor continuity of care.16 Whenpreparation for transfer was discussed, the difficulty of moving from family-based toindividual-based consultations was highlighted. Some young people viewed it positively,stating that such practices promoted disclosure and feelings of increased independenceand control; others felt ill-equipped to manage consultations alone. Most parentsacknowledged the importance of adolescents being able to manage consultations ontheir own, but nearly all felt it was their responsibility to ensure that their child receivedoptimal health care.16
DETERMINANTS OF SUCCESSFULTRANSITION AND TRANSFER
Successful transition and transfer may well have different meanings for young people,parents and health professionals. The optimal method to deliver transitional careservices is also not yet known.17,18 Choosing the right time to transfer a young personto adult services is likely to be the key to success, and this is potentially influenced bymany factors. The main determinants of the timing of transition are:
† chronological age;† maturity;† medical status;† adherence;† independence;† transitional issues;† adolescent readiness;† availability of an adult physician.
Traditionally, chronological age has been used as the basis of the decision as towhen to transfer from paediatric to adult care and has been reported as thecommonest criterion used.15 However, if used alone, difficulties can arise.Compared to their healthy peers, young people with chronic illnesses can oftenhave some delay in the development of the intellectual, emotional and interpersonalskills required to enable them to interact in adult environments. The potentialreasons for this are multiple and include the effects of treatments, absence fromschool, pain, depression and fatigue.
The medical status of a young person needs to be taken into account withrespect to transition and transfer. Ideally the condition should be as stable aspossible around the time when transfer is occurring. Steinkamp et al reported that
From paediatric to adult-centred care 391
a hospital admission (and therefore unstable disease) in young adults with cysticfibrosis in the year leading up to transfer to an adult clinic was associated with aless positive outlook towards transition compared to those who had remained inthe community.13 With many chronic conditions such as JIA and connective tissuediseases it is not always possible to be able to guarantee disease control at thetime of transfer. This also supports the concept of a transition period so thatyoung people and their families have some time to get used to the changes thatwill come with the eventual transfer to adult care, and disease/flare managementcan occur if necessary within this ‘safe’ arena while the transition processcontinues. This can also be part of the developmental process of enabling a youngperson to manage his or her own condition more effectively. It also allows someflexibility in the actual date of transfer should disease activity unexpectedlyincrease.
An adult care environment is more accepting of non-adherence and/or treatmentrefusal as it is within the rights of every adult person to refuse treatment as long as theyare deemed competent to understand the potential implications of their decision. Thepotential delay in maturity of young people with chronic disease poses some difficultywith this. While with respect to their chronological age in an adult clinic treatmentrefusal or non-adherence is acceptable, it should be borne in mind that these youngpeople may not be mature enough to appreciate the implications of their decisions oractions, and therefore treatment refusal and non-adherence are potentially notcompletely informed.
One of the key tasks of adolescence is to move from a situation of dependency(on family/carers) to being independent. Adolescents with chronic illness strugglewith independence, as their illness can often keep them tied to their families/carersfor physical, emotional and financial reasons. The need for regular medication,physiotherapy, visits to clinics etc places great demands on them and interfereswith everything they do.19 Adolescence is also a time characterized byexperimentation with drugs, alcohol and/or smoking which may or may notprogress into risk-taking behaviours. Adolescents may have limited and/or delayedcognitive development to appreciate the long-term consequences of their actions. Itis also a time when there is considerable pressure to become an accepted memberof a peer group. Such behaviours when combined with issues such as takingmethotrexate can be very problematic. It is therefore perhaps not surprising thatadolescents can sometimes have great difficulty in adhering to their treatmentregimes.
There are no standardized, validated measurements of adolescent readiness totransfer to adult care to date, but there have been reports of assessing some aspects ofsuccess of young people moving to adult services. Cappelli et al developed a 24-itemquestionnaire to assess readiness for transition in cystic fibrosis patients afterinterviewing adult and paediatric health professionals and adult patients. Thequestionnaire scores were found to be better predictors than age for success intransfer to adult care.20 Readiness can also be based on whether transitional issues havebeen addressed. The modified HEADS acronym is a useful aide memoire for this(Table 2).21 Transitional issues are often generic to any chronic illness eg futureutilization of health services but some are disease specific e.g injecting ownsubcutaneous methotrexate, having joint injections with local rather than generalanaesthesia etc.
The lack of availability of an appropriate adult provider to transfer young peopleto has been highlighted as a common difficulty in transitional care provision.
Table 2. Transitional issues: the modified HEADS acronym.21
Home-relationships/social support
Education—school, work experience, career plans
Exercise—general
Exercise—home programme
Activities—peers/social life
Alcohol
Driving
Drugs
Diet-general
Diet-calcium, vitamin D
Dental care
Sexual health—general
Sexual health—periods
Sexual health—contraception
Sleep
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Jefferson et al reported in 2003 that 47% of UK paediatric diabetes centres had noyoung adult clinic onto which to transfer young people.22 A survey of primaryphysicians regarding their role in transition acknowledged difficulty in identifyingadult providers as one of the most significant barriers to transition.23 Insufficientadult rheumatology support has been cited as a barrier to the development ofadolescent rheumatology services in the UK.18 There can be a lack of confidencein adult services by paediatric providers11,15,24 and also by young people and theirfamilies.16,25 With the more unusual or rare childhood-onset conditions there canbe difficulty in finding an adult provider with appropriate expertise and knowledgeof the condition. This can also be the case if the condition is one that previouslydid not result in survival to adulthood, so that adult services may have limitedexperience of and/or training in such conditions.
Looking further at the determinants of success of transfer, a case-note audit oftransfers of young people with diabetes to adult care in four different UK healthdistricts used attendance rates at adult clinics 2 years post-transfer as a measure ofsuccess. Higher rates of attendance at the adult clinics 2 years post-transfer were seenin districts where young people had had the opportunity to meet the adult diabetesconsultant prior to transfer. The importance of this opportunity was confirmed byquestionnaire responses on interview.26
To explore perceptions of best practice in transitional care, Shaw et al performed amodified two-stage Delphi study involving a range of rheumatology healthprofessionals, young people with JIA and their parents. Best practice and feasibility ofa range of aspects of transitional care were rated. Items strongly agreed to representbest practice and feasibility were addressing young people’s psychosocial andeducational/vocational needs; using an individualized approach; providing honestexplanations about an adolescent’s condition and health care; and giving adolescents theoption of being seen by professionals without their parents. However, it wasacknowledged by participants that although considered best practice, not all hospitalswould be able to provide other aspects such as adolescent-friendly environments,professionals knowledgeable in transitional care, and opportunity for young people tomeet others similar to themselves.27
From paediatric to adult-centred care 393
TRANSITION MODELS
Few detailed evaluations of different models for transitional care services have beenpublished to date, although several authors have proposed a range of models.17,28
Sawyer et al described three possible approaches:1 a primary-care-based coordinationof the move from child to adult care;2 a generic adolescent service for all specialitiescoordinated by health professionals with expertise in adolescent health; and3 disease-or specialty-based transitional services where the specialist paediatric and adult teamcoordinate the transfer of patients together.28
International, regional and local health service characteristics are likely to influencewhich models can be successfully applied in particular settings. In countries such as theUK and North America, where adolescent health services are not well developed in themajority of places, the second model would not be feasible. The Australian healthsystem, on the other hand, is more able to support such a model. Primary careexpertise and confidence may be inadequate for some of the less common conditionsrequiring transitional services. This would certainly apply in the UK with respect torheumatology where undergraduate and postgraduate training for musculoskeletaldisease in children is limited.29
The disease-based model is therefore likely to be the most appropriate for manycountries. This model, however, presents new challenges to paediatric and internalmedicine specialties with respect to coordination of their services. Traditionally theyhave worked independently, and transfer to adult services has been based onchronological age of the patients. It is now clear that this does not meet themultifaceted needs of the young people requiring ongoing medical care in adult services.Communication and collaborative working between the two services is of greatimportance and has been called for by young people and their families.16
Within the concept of a specialty-based transitional care service, there areseveral formats these could take. Again, exactly which format is adopted willdepend on the facilities and resources (geographical, logistical, financial) available ineach locality. The different formats potentially include:1 paediatric clinics whichcontinue at the same location, and the adult physician who will be taking over thepatient’s care takes part at defined times;2 a period when a young person hasoverlapping appointments at adult and paediatric clinics occurs before they aredischarged form the paediatric clinic; and3 a paediatric and adult physician conductclinics separately from their routine clinics, seeing only young people who requiretransitional services and then referring them on to their local specialist when theyare deemed ready to be fully in adult care.
The first option may be difficult for some specialties where there is a regionalpaediatric service that would refer patients on to various adult rheumatologists local totheir home. It would be logistically difficult to facilitate different local adult physicians toattend regional paediatric clinics. However, this approach may be the most appropriatefor other specialties that would be referring young people on to only one adult team.
The second option can potentially make continuity of care logistically difficult toprovide, particularly if the paediatric and adult clinics are in different locations.Communicating the outcome of consultations between the teams and definingresponsibilities during the overlap period is imperative for this format to work.Frustrations can develop if information regarding tests performed, results, changes inmedication etc are not available to each of the clinics in time for the subsequentappointment at the other clinic. In addition, confusion and uncertainty can occur if it is
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not clear to the patient which professional is actually in charge of their care and whothey should contact in an emergency situation.16
The third option may have the advantage of clearly setting the scene for patients andtheir families, although the issue of who to contact with queries etc would still need tobe addressed. Financial and clinic space constraints may be a potential issue for thisapproach, as instead of being included in existing services, as the first two options canbe, further defined time would be required of the paediatric and adult teams andadequate space to allow the clinic to run.
The Vancouver model for providing transitional care to young people withrheumatic diseases has also recently been described. A Young Adults with RheumaticDisease (YARD) clinic has been developed for young people aged 18 years and over toprovide appropriate rheumatology care and facilitate successful transfer to an adultclinic.30 It is a care clinic shared between paediatric and adult rheumatologists with anassociated team of allied health professionals—nurse specialist, physiotherapist,occupational therapist, social worker-and links to services that can provide vocationaland sexual health counselling and other youth-friendly medical subspecialties. Asupportive environment is provided, with education in advocacy and independenceskills for young adults aged 18 years, aiming for eventual transfer to adult care at age22–24 years. One interesting aspect of the service is that parents are invited to attend aportion of the young person’s first visit to the YARD clinic, if the young person agrees.Then after the first visit parents are not invited and are actively discouraged fromattending the clinic. While parents acknowledge the importance of the development ofindependence in health care, this can also be a difficult time for them in adjusting tobeing less involved with their child’s ongoing medical management. The move to adifferent clinic in a different place for transitional needs may well be advantageous inpromoting this change. The YARD clinic staff actually report that most young peopleattend the first appointment on their own, which is also the author’s experience in asimilar clinical setting. It may be that a move to a different clinic staffed by some differentpeople provides an appropriate signal to young people and their families to alter theirapproach to clinic appointments that may be more difficult to do if the clinic continuesin the same place with the same people.
The young adult clinic for 16 to 25-year-old is a useful concept for specialties likerheumatology as it addresses the discrepancy between average age and case mix ofpatients between paediatric and adult clinics. Furthermore, such clinics facilitateongoing age- and development-appropriate care beyond the paediatric facility,acknowledging that adolescent development may be delayed in chronic rheumaticconditions. Such clinics also facilitate continuation rather than cessation of transitionalcare in the adult facility and allow monitoring of completion of other importanttransitions (work, independent living, etc.).
EVIDENCE TO SUPPORT THE DEVELOPMENTOF TRANSITIONALSERVICES
A national UK audit of adolescent rheumatology services in 2000 highlighted the lack ofservice provision; 18% of units seeing children had a dedicated adolescent clinic, butgeneric adolescent health issues were addressed by only two of these clinics. A demandfor patient information resources (e.g. disease and drug information, careers)specifically aimed at adolescents with rheumatic diseases was identified. Obstacles to
From paediatric to adult-centred care 395
current service provision included funding, time constraints, insufficient patientnumbers, lack of adult rheumatology support, clinic space and setting. There were alsomany ideas for future developments such as increasing liaison between healthprofessionals, outreach support from regional centres, and provision of appropriatepatient information for young people and their parents, including vocational and benefitadvice and education for professionals.18 There has been increased recognition of theparticular needs of adolescents in the health-care setting, with national professionalorganizations in the US and UK publishing consensus statements highlighting theseneeds.31–33 In the UK the National Service Framework for Children, Young People andMaternity Services has also recognized the particular needs of adolescents andadvocated that children should be treated ‘as children and young people as youngpeople’, and that young people should ‘graduate smoothly into adult service at the righttime’.34
Shaw et al have recently published detailed information on the nature of the‘transitional care workload’ facing paediatric and adult rheumatologists in the UK.35
Amongst the 17-year-old (nZ77) of the multicentre cohort of adolescents with JIA(nZ308) there was a significant number of young people who had unmet transitionalneeds despite their imminent transfer to adult care. These issues included: never havingbeen seen alone by the rheumatologist without parents being present (55.8%), not self-medicating (20%), not having had intra-articular injection under local (rather thangeneral) anaesthetic (68.5%), and not having had any careers counselling (14%).36
Moving to an adult rheumatology clinic without these issues being addressed is likely toconsiderably affect future care with respect to likelihood of attendance, particularlywhen joint injections are routinely given with patients awake. Since adult physicians aretrained to focus on the patient rather than family and parents (Table 1), consultationsmay be inadequate because of lack of experience in dealing with the new situation by allinvolved-professionals, parents and patient alike. Lack of independent health behaviour(e.g. not self-medicating) also has wider implications for the ability of a young person tobe able to develop and lead an independent life separate from family which is recognizedas one of the main tasks of adolescence.
The evidence-based transitional care programme delivered to this national cohort ofadolescents with JIA has recently been described and incorporated a key worker role,paper-based age- and development-appropriate resources and individualized transitionplanning for both adolescent and parent, commencing at age 11 years.37 Evaluationfollowing implementation confirms acceptability and utilization of the programmecomponents by young people with JIA, their parents and the rheumatologyprofessionals involved.37 Preliminary outcome data from the programme has reportedimproved health-related quality of life, disease knowledge and satisfaction.36 Long-termoutcome of participants following transfer to adult care is awaited with interest.
SUMMARY
It is evident now that simply transferring the majority of young people with chronicdiseases from paediatric to adult care is inadequate to meet their needs at this time.The timing of the move to adult care is determined by many factors, and the importanceof each will differ between individual young people. Preparation for the change andcareful assessment of the right time to transfer is required. Transitional care serviceshave been developed to meet this need but are not yet universally available. However,
*
*
*
*
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increasing interest and awareness of transitional issues together with recent good-quality research from a variety of specialties-including rheumatology-will hopefullypromote wider development of service provision in this area. Ultimately this willhopefully result in improvements in the morbidity, vocational attainment, indepen-dence, psychological and general well-being for the considerable numbers of peoplewho grow up with childhood-onset disease. Continuing research and documentation ofoutcomes will continue to be very important to provide further guidance for theoptimal delivery of transitional care services in the future.
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