Monitoring involves the mulitidisciplinary team and needs to cover many aspects. Nurse-led clinics may cover many of these aspects in specialist care. However primary, community and school nurses are also integral to the monitoring process.
- Growth and development - chronic illness can result in short stature and delayed puberty. This impact is less with good disease control with adherence to the management / treatment plan and avoidance of chronic corticosteroid exposure.
- Immunisations - chronic illness and immunosuppression (from disease or treatment) may impact on immunisations which may be less effective and as a general rule, live vaccines are contraindicated.
- School attendance - chronic illness may affect school attendance and school performance. Bullying takes many forms and is not uncommon. Working with teachers and school nurses is important to support the child in school and interact with their peers.
- Transition is a challenging time for young people with chronic illness and transitional care needs to address generic and disease specific issues. Transitional care to adult rheumatology is important to support young people to take on more responsibility for their own care. Many of the drugs may have an impact on lifestyle (e.g., Methotrexate and alcohol) and many drugs may be teratogen or have unknown long term risk (e.g., Biologics and need for contraception).
- Safeguarding concerns must be considered and addressed.
- Disease management - nurses play a key role in the education and support for families with chronic illness and complex medicines that may be given at home.
- Adherence issues are common and may affect disease control.
- The need for regular clinic visits, blood tests to monitor the response to drugs and assess for side effects as well as eye screening must be stressed.
- Shared care and outreach clinics nearer to home may help reduce the burden for families.
- Families need to know when to seek prompt medical care if the child is unwell and especially if they develop chickenpox or herpes zoster (shingles), as these can be serious and potentially life threatening.
- Vigilance regarding infection is important, especially as the classical symptoms and signs may not be apparent, and urgent referral is warranted if infection is suspected.
The photograph shows zoster infection in a child who is immunosuppressed