A principal source of advice, support and information on psoriasis and psoriatic arthritis
A registered charity no: 1118192
A registered charity no: 1118192
Approximately 1 in 1000 children in the UK have Juvenile Idiopathic Arthritis (JIA) ie a chronic arthritis of unknown cause presenting before the age of 16. Juvenile Psoriatic Arthritis (JPSA) is one of 7 subtypes of JIA and represents 7% of cases. JIA does not always “burn out” and one third of patients continue to have active inflammation into adulthood. Up to 60% will have limitations in activities of daily living and despite average or above average educational achievement, young people with JIA are 2-3 times more likely to be unemployed. This is not related to level of disability or type of arthritis and the exact cause is unknown but concerning.
Why then is there a need to highlight the particular needs of adolescents with JPSA? It is important to remember that adolescent are NOT just small children nor are they small adults. They present with different diseases, their bodies and minds are still developing and their relation¬ships within the family and outside the family are continuously evolving.
Chronic illnesses like JPSA and/or psoriasis can potentially affect all aspects of adolescent development. Persistent active joint inflam¬mation can affect their physical development eg delay growth and puberty. Drug side effects, pain, depression and tiredness due to persistent active disease can affect their brain (cognitive) development. Conversely, one must remember the stage of development when communicating with adolescents especially with respect to teaching them about the disease and treatment and involving them in decision-making. Chronic arthritis and/or psoriasis can also affect an adolescent’s psychosocial development in terms of their relationship with their friends, their sexual identity, their self-esteem etc. Conversely, psychosocial issues such as risk-taking behaviour eg alcohol have implications to their treatment as is the case with methotrexate.
Transitional care for adolescents with a chronic illness like JPSA and/or psoriasis has been defined as a multifaceted, active process that attends to the medical, psychosocial and educational/vocational needs of adolescents as they move from child to adult centred care. The aims of transition are
(i) provision of co¬ordinated, comprehensive, uninterrupted healthcare which is age and developmentally appropriate promotion of skills in communication, decision-making, assertiveness, self -care
(iii) enhance sense of control and independence in healthcare.
(iv) Transition is NOT a single event but a process that should start early (round age 10-11 years) and be planned. It must be remembered that as well as moving from paediatric to adult health-care young people also have to negotiate the transition from school to work or further education as well as from family to independent living.
Transfer to adult core is part of the transition process but has no fixed age or time. Ideally young people should transfer when they are in disease remission, when they are independent in their health-care and adherent with treatment and when they themselves feel ready to move on. The young person is at the centre of the transition process and plays an active and integral part in the planning and development of their transition plan. Other key players include their family, their GP, paediatric and adult multidiscipline” teams, school teachers, social services and voluntary organisations.
When young people with JIA have been asked what they want from an adolescent rheumatology service they have requested more information about their disease and treatment options. Studies have shown that unfortunately even long-term clinic attendees with JIA may have significant misunderstandings about their disease and treatment. One reason for this is that if they were diagnosed when they were young, most of the disease education and information was directed primarily at the parents. Other areas requested by adolescents with JIA include counselling particularly about relationships and sex, careers counselling and information about benefits. Studies also report that young people with JIA also want to be more involved in decision-making.
One of the big issues in adolescent rheumatology clinics is to gradually and sensitively introduce the concept of the young person being seen alone without their parents. 50% of 15 year olds in the community are actually seeing their GP on their own. Sometimes this is difficult for the adolescent as well as the parent to contemplate but it is part of the process of helping the young person becoming a good and effective self advocate. Other important aspects of self-advocacy are a full understanding of the illness, active involvement in decision-making, self-medication, making their own appointments etc.
The parents of young people with chronic arthritis may also need help becoming better advocates for their son/daughter with chronic arthritis. Such help may include: understanding adolescent development and the dynamic role of a parent; involving their son/daughter in decision-making from an early age; ensuring their son/daughter gradually becomes a good self advocate; being aware of resources available and to help them in career exploration. Getting a job is not simply a matter of qualifications but also about the expectations of the young person and their family and teachers, their own self-esteem, their knowledge of relevant services and resources available, having work experience as well as society’s attitude to chronic illnesses and disability in general.
In recognition of the needs of these young people and the deficiencies in the current service provision in the NHS, the British Paediatric Rheumatology Group, the Children’s Chronic Arthritis Association and the Lady Hoare Trust for Physically disabled children have embarked on a national multi-centre 3 year study to see if a co-ordinated transitional care program can actually improve the quality of life for these young people. This is funded by the Arthritis Research Campaign and formally started in September 2000.
In summary, adolescents with JPSA and/or psoriasis have distinct needs and issues that differ from those of children and also adults. Both paediatric and adult rheumatology and dermatology teams need to be aware of these differences and support a multidisciplinary approach actively involving the young people themselves as they grow up into fulfilled and independent adults