M L Avila1, L R Brandão1, S Williams1, M I Montoya1, J Stinson2,3,4, A Kiss5, B M Feldman1,2,3. 1. Department of Pediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada. 2. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada. 3. Child Health Evaluative Sciences, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada. 4. Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada. 5. Department of Research Design and Biostatistics, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada.
Abstract
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.
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.
Authors: Laura Avila; Noelle Cullinan; Michael White; Marian Gaballah; Anne Marie Cahill; Deepti Warad; Vilmarie Rodriguez; Cristina Tarango; Anna Hoppmann; Stephen Nelson; Tomas Kuhn; Tina Biss; Aaron Weiss; Michael Temple; João G Amaral; Nour Amiri; Ana C Xavier; Samuele Renzi; Leonardo R Brandão Journal: J Thromb Haemost Date: 2021-04-01 Impact factor: 5.824
Authors: Denise Bastas; Jennifer Vincelli; Riddhita De; Eliana Benia; Sarah Gairdner; Leonardo R Brandão; Laura Avila Journal: Res Pract Thromb Haemost Date: 2022-07-29
Authors: Jeanine J Sol; Moniek van de Loo; Marit Boerma; Klasien A Bergman; Albertine E Donker; Mark A H B M van der Hoeven; Christiaan V Hulzebos; Ronny Knol; K Djien Liem; Richard A van Lingen; Enrico Lopriore; Monique H Suijker; Daniel C Vijlbrief; Remco Visser; Margreet A Veening; Mirjam M van Weissenbruch; C Heleen van Ommen Journal: BMC Pediatr Date: 2018-02-23 Impact factor: 2.125
Authors: Maria Laura Avila; Brian M Feldman; Eleanor Pullenayegum; Celeste Lumia; Madeline I Montoya; Jennifer Vincelli; Suzan Williams; Leonardo R Brandão Journal: Res Pract Thromb Haemost Date: 2019-08-28
Authors: Maria L Avila; Brian M Feldman; Suzan Williams; Leigh C Ward; Madeline I Montoya; Jennifer Stinson; Alex Kiss; Jennifer Vincelli; Celeste Lumia; Leonardo R Brandão Journal: Res Pract Thromb Haemost Date: 2018-04-17
Authors: Maria L Avila; Jennifer Stinson; Celeste Lumia; Suzan Williams; Madeline I Montoya; Brian M Feldman; Leonardo R Brandão Journal: Res Pract Thromb Haemost Date: 2018-04-15