Development of CAPTSureTM - a new index for the assessment of pediatric postthrombotic syndrome.

Essentials We developed a discriminative and evaluative index for pediatric postthrombotic syndrome (PTS). A Delphi-survey was used for item reduction and multi-criteria decision analysis for item weighting. The new index assesses limb PTS based on the relative severity of each sign and symptom. Higher scores related to higher odds of parental dissatisfaction with their child's condition. SUMMARY: Background Postthrombotic syndrome (PTS) is a complication of deep vein thrombosis defined by the presence of characteristic signs and symptoms. We developed a discriminative and evaluative index for the assessment of upper extremity (UE) and lower extremity (LE) pediatric PTS. Methods The items to be included in the index were voted for by 26 pediatric thrombosis experts invited to participate in a Delphi survey. Subsequent item weighting was based on item importance elicited by the use of multicriteria decision analysis (MCDA); 122 healthcare providers and patients/parents were invited to participate in item weighting. The implications of the overall scores were explored by comparison with PTS diagnosis (independently assessed by two clinical experts) and parental satisfaction/dissatisfaction with their child's current condition. Results Items voted for inclusion by at least 70% of the Delphi survey respondents (81% response rate) were pain, paresthesia, swelling, heaviness, endurance, collateral circulation and arm circumference difference for the UE, and pain, paresthesia, swelling, heaviness, tightness, tired limb, redness/purple or blotchy skin, endurance, ulcers and thigh/calf circumference difference for the LE. Items were then weighted by the use of MCDA (82% response rate). The index had excellent discrimination for patients with/without PTS. For every 10-point increase in index scores (with higher scores being indicative of worse PTS), the odds of parental dissatisfaction increased by 75% and 92% in the UE and LE, respectively. Conclusion We report the development of the CAPTSure™ (index for the Clinical Assessment of Postthrombotic Syndrome in children), which reflects collective judgement of the severity of pediatric PTS. We also provide information on the meaning of the scores.

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

OBJECTIVE: Our goal was to conduct the item generation and piloting phases of a new 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 subjects 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 item performance. 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: The diagnostic properties of the items and their correlations with post-thrombotic syndrome severity 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.