Five paediatric patients with mycosis fungoides and our approach to provide age-appropriate information and psychological support.
Veronica MelchiondaEleni IeremiaRubeta N MatinTess McPhersonPublished in: Clinical and experimental dermatology (2024)
Cutaneous lymphoproliferative diseases in childhood are rare and they are clinically and pathologically heterogeneous, which makes their diagnosis challenging. Although there is limited long-term data and guidance on management, evidence suggests these to be different conditions from cutaneous lymphoma in adults, highlighting the need for age-appropriate patient information. We present clinical outcomes for our paediatric cohort of five patients with mycosis fungoides, emphasizing that despite diagnostic delays, mycosis fungoides in this age group tends to yield a good prognosis. It remains uncommon to provide clinical expertise together with psychological support in a dermatology paediatric service. Here, we provide our experience in offering this combined service. In conjunction with these patients, we have co-produced an accessible patient information leaflet targeted at a younger audience for support and to clarify potential misconceptions from a diagnosis of cutaneous lymphoma.
Keyphrases
- intensive care unit
- emergency department
- end stage renal disease
- mental health
- healthcare
- diffuse large b cell lymphoma
- case report
- health information
- ejection fraction
- newly diagnosed
- chronic kidney disease
- epstein barr virus
- peritoneal dialysis
- prognostic factors
- electronic health record
- heart failure
- big data
- sleep quality
- physical activity
- machine learning
- atrial fibrillation
- drug delivery
- risk assessment
- young adults
- patient reported
- human health