We conducted a search strategy for articles published between 1950 and January 2010 in MEDLINE, EMBASE and the Cochrane Library, using the terms described in Annex 2. We also sought information in the abstracts presented at the EULAR (European League Against Rheumatism) and ACR meetings, available on the official website of each agency. The search was limited to a population of adolescents, children and young adults. We included articles in English and Spanish.

The initial selection was conducted by reviewing the title and abstract of each article obtained with the search strategy and identified articles that met the inclusion criteria. These criteria were: adolescent or pediatric population, diagnosis of rheumatic pathology and those including information relevant to a transition unit. After a careful reading of the articles, the information needed was gathered to develop the narrative review. Some items were additionally obtained by reviewing the references of articles already included.

The rheumatic diseases during adolescence are of particular interest because musculoskeletal symptoms represent the third most common cause of primary care consultation at this age.12 On the other hand, a third of JIA adolescente13 debut in this age range and 15%–20% of cases of systemic lupus erythematosus (SLE) begin in childhood or adolescence, being more aggressive, more renal and meriting immunosuppressive treatment or steroids more often.14

The adolescent patient is complicated for several reasons. Adolescence is the only period in which the doctor does not deal directly with an adult and during childhood attention is focused on the parents. Some behaviors are typical of the adolescent and their management are difficult, such as tardiness or missing appointments, inattention, failure to follow recommended guidelines or defiant attitudes. Sometimes the adolescent identifies the physician as a parent to be separated from, in order to seek their own independence. On the other hand, this type of pathology at this age has a great physical, emotional and psicological15 impact.

Another aspect to consider is the difference in priorities between the adolescent and their caregivers. A clear example is when the teen chooses not to take steroids because they are concerned about side effects that may impair their physical appearance. Chronic damage and even death as a consequence of not taking medication are abstract concepts to them and it is even more difficult to convince them of the need for treatment when their disease is in remission.16

Adolescent medicine is a subspecialty recognized in the U.S. and specific training programs exist in Canada (http://www.mcs.bc.ca/ntiah.htm). Although in other countries it is not recognized as such, there are teenage patient education initiatives, as is the case of England (http://e-lfh.org.uk/projects/ah/team.html).

Some recommendations may be useful when facing adolescent patient care:

• 1.

  Promote mutual respect, for many teens the key determinants of the functioning of a transition unit in rheumatology are the qualities and personality of the physician.17

• 2.

  Confidentiality for adolescent patients is difficult if they suspect that the information provided will be forwarded to parents.

• 3.

  Avoiding bias when assessing the adolescent.

• 4.

  Continuity and consistency: young patients need about 4 or 5 visits to begin to trust their physician.18

• 5.

  Independence for visits without their parents in congenital heart disease patients has proven a success factor in transition19 units. Another important aspect is sufficient time for the patient, as quick reference can create anxiety in adolescents. The Royal College of Pediatrics and Child Health suggests that the time devoted to the adolescent patient should be longer than the adult-oriented or even children.20

• 6.

  Treat important health issues, such as substance abuse, sexuality and emotional and mental stability. A useful tool for psychological exploration that can be used in routine clinical practice is the HEADSS assessment, acronym adapted by McDonagh21 for the rheumatic patient and includes an assessment of family relationships (Home), level of education and/or expectations of future (Education) general exercise (Exercise), interests, friendships and aspirations (Activities, Affect, Ambition), drug and substance abuse (Drugs), driving (Driving) and diet or weight management (Diet), sleep hygiene (Sleep) and sexuality, especially contraception recommendations under some treatments (Sex). It is important to note that young patients are often reluctant to start these conversations, so the rheumatologist involved must take the lead in advising on these issues.

The evidence at our disposal today highlights the need for transitional units where young patients with rheumatic diseases are transferred to specialized care units for adults. When assessing the expectations and concerns of adolescents with chronic diseases in the transition process, it is striking how the majority of respondents feel “forced” to perform this process, although benefits are identified after being trasferreds.32 On the other hand, many young patients feel that when diagnosed during childhood and followed through adolescence cannot be evaluated as young adults and professionals fail to recognize their new necessities.28

From the point of view of the patient and the family, the main problem is the perception of care in adult units as being of less quality.33 Changing the relationships with parents and health professionals is an important factor in the process, as it has to increase the responsibility for their own care. Clearly, a unit requires more independent adults and this can be a problem, especially for adolescents more dependent on their parents.

In 2002, a consensus document developed by the American Academy of Pediatrics, American Academy of Family Physicians and the American Society of Internal Medicine set out the steps required to ensure a successful transition. According to this document, any young patient with rheumatic pathology should have a qualified professional with the necessary knowledge on the functioning of a transition process and should have a transition program that starts at 14 and includes regular updates of their health state and care based on prevention guidelines for the teen and has continuous health coverage.

Although there are several articles dealing with transition units, few programs are described in detail in the literature, and most of these units are developed in populations with JIA and, less frequently, in patients with SLE. In a small cohort of 23 patients described in Italy, the authors concluded that in the case of patients with SLE the primary objective for physicians should be monitoring adherence to treatment, especially in patients with active disease or risk of severe complications.34 Contraception is an important factor in these patients and pregnancy is a risk factor for severe complications that requires close monitoring.

In England, a Delphi study was conducted to develop a consensus on which aspects were necessary and feasible for a transition unit.27 There was agreement on the need to focus efforts on educational and psychosocial needs of adolescents, individualized transition programs, providing honest explanations about the state of health, provide opportunities for patients to express their opinions and being well informed decisions, continuity of staff and give the opportunity for the patient to be assessed without their parents. Other areas showed a limited viability: multidisciplinary teams, professionals trained in the care of adolescents, age-appropriate environment (waiting areas) and encounters with other teens in similar situations. These recommendations were used by the British Pediatric Society to develop a transition program for young people with arthritis (www.bspar.org.uk) and has shown a positive impact.29,35

A more recent study by Scala et al.,36 described how adolescents with arthritis received different care in the context of a transition unit in the U.S. About 75% were encouraged to take responsibility for their health and 50% had a discussion with their doctor about the need for change in their health care when moving to adulthood. Only 1 in 5 received advice on two aspects: (a) the need to go to a doctor for adults, and (b) how to get health insurance once in adulthood. Compared with the transition units for other chronic diseases such as diabetes, this study found a delay in the transition process.

Another study conducted in Germany picked up the perception of patients and their families on the transition units through surveys. It is striking how only 30% of respondents had discussed with their pediatrician the transition process and only 23% had visited the consultation of transition. The worst evaluations were on how to get an emergency appointment and to discuss personal issues.37

Although the transition unit should not focus only on medical aspects and control of disease, the transition should take place in periods of remission, as the adolescent patient will be more receptive to such interventions.

Several models have been proposed transition. While et al. described 4 types: direct transition (only communication and information sharing), transition sequence (include the development of new services), transition from development (include training and support) and professional transition (with personnel qualified for the transfer). It is unclear which of these described models may be the most efficacious.38

Within the field of rheumatology there are 3 working groups that have published the details of the proposed transition programs.39–41

The transition program developed by McDonagh et al. has been shown to improve quality of life, vocational preparation and satisfaction with health status among adolescents aged between 11 and 17 years,29 although it is unknown whether these improvements are maintained at follow-up into adulthood and if they affect a positive and different long-term outcome.

Tucker et al. have described a model for young adults with rheumatic disease (YARD) that included patients 18–24 years.40 They proposed developing a clinic shared between pediatricians and rheumatologists, with a multidisciplinary team that includes nurses, physiotherapists, occupational therapy practitioners and social workers. The goal is that, when the patient turns 24 years of age, he or she is fully prepared to be transferred to an adult consultation. An interesting aspect of this program is that parents are invited to attend the first visit if the adolescent patient agrees.

The program described by Rettig et al., based on a population of 100 adolescents with JIA, SLE and dermatomyositis. In this program, the nurse coordinates the transition unit and consists of a pre-transitional phase, in which pediatrician teams assess whether the adolescents and their families are prepared for the transition process, and a transitional unit within adults.41

Some recommendations that can be useful if there is the possibility of launching a transition unit are: to identify professionals who may be interested in their training and support, to identify other specialties that have this type of units in operation and which can provide support and experience, consider the integration of these units in routine clinical development to facilitate in-service support for the rest of the service, to become familiar with some of the websites that give recommendations on educational and psychosocial issues in these age groups (for example, arthritis guide for teens to be found in www.arc.org.uk)35 or other pages that provide different resources (Table 3).