Pediatric post-thrombotic syndrome in children: Toward the development of a new diagnostic and evaluative measurement tool

Abstract

Objective: Our goal was to conduct the generation and piloting of a discriminative and evaluative tool for pediatric post-thrombotic syndrome.Methods: We followed a formative model for the development of the tool, focusing on the signs/symptoms (items) that define post-thrombotic syndrome. For item generation, pediatric thrombosis experts and diagnosed with extremity post-thrombotic syndrome during childhood nominated items. In the piloting phase, items were cross-sectionally measured in children with limb deep vein thrombosis to examine the performance of the items.Result: Twenty-three experts and 16 subjects listed 34 items, which were then measured in 140 subjects with previous diagnosis of limb deep vein thrombosis (70 upper extremity and 70 lower extremity). The items with strongest correlation with post-thrombotic syndrome severity and largest area under the curve were pain (in older children), paresthesia, and swollen limb for the upper extremity group, and pain (in older children), tired limb, heaviness, tightness and paresthesia for the lower extremity group.Conclusion: Diagnostic properties and correlation with post-thrombotic syndrome severity of the different signs and symptoms varied according to the assessed venous territory.The information gathered in this study will help experts decide which item should be considered for inclusion in the new tool.

Characteristics of pain, other symptoms and function in pediatric post‐thrombotic syndrome

“…In a previous study we showed that PODCI, which measures activities and participation in children, might be a reasonably good approximation to assess the impact of PTS on the lower extremities. However, PODCI was not sensitive enough to measure the impact of PTS on the upper extremities . This is likely due to the fact that children with impaired endurance may find that most of the activities listed in PODCI for the evaluation of upper extremities are easy to perform.…”

“…However, PODCI was not sensitive enough to measure the impact of PTS on the upper extremities. 13 This is likely due to the fact that children with impaired endurance may find that most of the activities listed in PODCI for the evaluation of upper extremities are easy to perform. In contrast, some of the activities listed for the evaluation of lower extremities are more challenging and require better endurance.…”

Post‐thrombotic syndrome in children: Measurement properties of CAPTSure, a new diagnostic tool

“…At the time of study enrollment, 2 assessors measured PTS signs applying the clinician assessment component of CAPTSure, which includes the assessment of thigh and calf circumference difference and ulcers for the lower extremity and arm circumference difference and collaterals for the upper extremities (Appendix S1). Assessors took 3 measurements, as previously described, and averaged the obtained values to determine limb circumference difference. In addition, the assessor evaluated pain intensity in children aged 4 to 9 years using the Faces Pain Scale–Revised (FPS‐R) .…”

“…The index for the Clinical Assessment of PTS (CAPTSure) is a tool developed for the diagnosis and severity rating of PTS in children . Whereas PTS signs are measured by the clinician using a clinician assessment component, PTS symptoms are reported by either the patient or their proxy, according to the age of the child being assessed, using a patient/proxy questionnaire component.…”

“…1 The index for the Clinical Assessment of PTS (CAPTSure) is a tool developed for the diagnosis and severity rating of PTS in children. 2,3 Whereas PTS signs are measured by the clinician using a clinician assessment component, PTS symptoms are reported by either the patient or their proxy, according to the age of the child being assessed, using a patient/proxy questionnaire component. The scores of signs and symptoms are combined to obtain a final score that ranges from 0 to 100 points, which are indicative of PTS severity of the upper or lower extremity; 100 points indicate the worst possible PTS.…”