OBJECTIVES: Severe sialorrhea (drooling) can be observed in up to 60% of children with chronic neurological disorders. As little information is available on the management and costs of patients with severe sialorrhea, this study aimed at better understanding the care pathway and related costs associated with the management of this condition in France.

METHODS: Qualitative interviews with 10 healthcare professionals (HCP) and data on 50 patient cases were collected nationwide. Costs were estimated using French medico-economic data available in open access.

RESULTS: Among the 50 patient cases, mean age was 10 years old. Three main complaints arise from patients: one more burden added to the disease (86%), extra load with washing and change (84%), difficulty in dealing with others’ glance (46%). Severe sialorrhea severely damage the quality of life including impact on diet (77%), social relationships (60%) and sleep (58%). Several healthcare and paramedic professionals can be involved in the journey of patients with severe sialorrhea including neurologists, ENT specialists, pulmonologists, dietician, physiotherapists, psychomotricity specialists and speech therapists.

Four main therapeutical options were identified by the HCP interviewed, but no treatment is unanimously accepted: Scopolamine patches which are not reimbursed in France (monthly costs estimated at €80 to €100), with challenging dosing and possible adverse events; Trihexyphenidyl, a reimbursed antiparkinsonian treatment, used off-label for severe sialorrhea and with limited efficacy; Botulinic toxin injections (monthly costs estimated at €50 to €90), which are invasive and require local or general anesthesia; Atropine collyrium can be used ingested (monthly cost estimated at €150), but no clear dosage guidance exists.

CONCLUSIONS: This study highlights that no ideal therapies exist for the management of severe sialorrhea: there is a clear need for specific medications approved for this indication. Having reimbursed therapeutic option would also support patient and families to deal with this condition in the future.