Background: PTS is the most common long-term complication of limb deep vein thrombosis (DVT) in children. As the frequency of DVT and survival rates of children with DVT increases, so does the frequency of PTS, thus becoming a relevant health care problem.
Aims: To describe CAPTSureMe©, a program for the assessment and care of paediatric PTS centred on the use of the index for the Clinical Assessment of PTS (CAPTSure©) in children.
Methods: Paediatric patients who sustain a limb DVT are followed up in the Thrombosis Clinic at SickKids under the CAPTSureMe© program starting 6 months from their index DVT onset. At every clinic visit, CAPTSure© is applied to diagnose and rate PTS severity. CAPTSure© is a validated tool consisting of a clinician component (CC) that assesses PTS signs and a patient/proxy component (PC) to determine PTS symptoms. It can be easily and reliably applied by a wide range of individuals including non-clinicians. Importantly, children can self-report PTS symptoms at age ≥10 years and are, in fact, more reliable than parents.
Results: The final CAPTSure© score (CC+PC) ranges from 0-100 points. A score of 0 points indicates no PTS, whereas 100 points indicate the worst possible PTS. Scores >10 points signal clinical relevance, and score changes of >10 points indicate a change in PTS severity. CAPTSure© helps to determine whether an intervention is required or whether closer observation is preferred. Under the CAPTSureMe© program, patients are followed for up to 10 years following their initial DVT at a frequency determined by their CAPTSure© score. In addition, the program addresses knowledge gaps by providing patients with educational materials related to DVT, PTS, and PTS management.
Conclusions: CAPTSureMe© is a valuable program aimed at surveillance and PTS diagnosis and management that incorporates patient’s voice, and stresses the importance of ongoing education and long-term follow-up.
To cite this abstract in AMA style:Vincelli J, Brandao LR, Amiri N, De R, Williams S, Avila L. Improving Post-Thrombotic Syndrome (PTS) Care in Children: A Child’s Voice [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 2). https://abstracts.isth.org/abstract/improving-post-thrombotic-syndrome-pts-care-in-children-a-childs-voice/. Accessed August 15, 2022.
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ISTH Congress Abstracts - https://abstracts.isth.org/abstract/improving-post-thrombotic-syndrome-pts-care-in-children-a-childs-voice/