The medical recommendations for adult LCH have been published in Orphanet Journal of Rare Diseases.

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Follow-up

Author(s): Euro Histio Net Work Group for LCH Guidelines for adults (see introduction page), Created: 2012/07/26, last update: 2013/08/18

LCH may reactivate and lead to chronic local symptoms or induce organ dysfunction. Rarely LCH is associated with malignant tumors. Therefore, follow-up investigations of disease and monitoring of functional impairments are necessary.

General follow-up

LCH may reactivate in course and induce organ dysfunction. Moreover, LCH is associated with malignant tumors. Therefore, follow-up investigations of disease and monitoring of functional impairments are necessary.

Restaging every 2-3 months is standard. Follow-up intervals depend on the primary extent and activity of disease within 3 to 12 months (see table 9). In case of affirmed reactivation, clinical evaluation should include all investigations (see pretreatment clinical evaluation). (Grade D2 *)

Follow-up schedule
 

Table 9: Recommendations for follow-up

  
   

Patients with single system disease and with no disease activity

  

Test

Frequency

Grade *

  • History (especially of thirst, polyuria, cough, dyspnea, bone pain, skin changes, neurological symptoms)

• every clinic visit
 

D2
 

  • Clinical assessment, blood count and blood chemistry (as described in baseline diagnostics), ultrasound  

• end of therapy
• every 6 month (for the next 2 years)
• then once a year (for at least 3 years)

D2
 
 

  • Chest XR

• annually (for at least 3 years)

D2

Patients after multisystem LCH and with no disease activity

  

Test

Frequency

Grade *

  • History (especially of thirst, polyuria, cough, dyspnea, bone pain, skin changes, neurological symptoms)

• every clinic visit
 

D2
 

  • Clinical assessment, blood count and blood chemistry (as described in baseline diagnostics), ultrasound

 
• end of therapy
• every 3 month (for the next 2 years)
• every 6 month (for the next 3 years)
• then once a year (for at least 5 years)

 
D2
 
 
 

  • Chest XR

• annually (for at least 3 years)

D2

  • TSH, free T4

 
• Once a year until end of routinely follow up

D2

Patients with active disease

  

Test

Frequency

Grade *

• Frequency is depending on rates and velocity of recurrences

D2

Patients with primary pulmonary LCH (pLCH)

  

Test

Frequency

Grade *

  • History (in case of non-pulmonary symptoms: look for MS LCH, see table 4)

Every clinic visit

D2

  • Diagnostic procedures are depending on symptoms und course of pLCH (baseline: chest X-ray, lung function (+DCLO)

• End of therapy
• every 6 month (for the next 2 years)
• then once a year (for at least 5 years)

D2
 
 

* Grades of recommendation see here.