Presentation Details
| The Impact of Multidisciplinary Perinatal Care for Women with Bleeding Disorders Vanessa Giuliano1, Natalya E.O’Neill1, Shamshah Aratia7, Shalene Wong7, Allison Rupnaraine, 7, Rebecca Sampat7, Filomena Meffe2, 3, Jeffrey Wassermann8, Jillian M.Baker4-6, Grace Tang7, Michelle Sholzberg1, 7, 9, 10. 1Department of Medicine, University of Toronto, Toronto, ON, Canada.2Department of Obstetrics and Gynecology, University of Toronto, Toronto, ON, Canada.3Department of Obstetrics and Gynecology, St.Michael’s Hospital, Toronto, ON, Canada.4Department of Pediatrics, St.Michael’s Hospital, Toronto, ON, Canada.5Department of Paediatrics, Division of Haematology-Oncology, The Hospital for Sick Children, Toronto, ON, Canada.6Department of Paediatrics, University of Toronto, Toronto, ON, Canada.7St.Michael's Hospital, University of Toronto, Toronto, ON, Canada.8Department Of Anaesthesia, University of Toronto, Toronto, ON, Canada.9Department of Laboratory Medicine and Pathobiology, University of Toronto, Toronto, ON, Canada.10Li Ka Shing Knowledge Institute, Toronto, ON, Canada |
Abstract
Background:
Women with bleeding disorders are at increased risk of heavy menstrual bleeding, non-anemic iron deficiency, iron-deficiency anemia, post-partum hemorrhage, and reduced health-related quality of life. Despite this, women with bleeding disorders often face barriers to receiving medical care, and thus are underdiagnosed and undertreated. The perinatal period poses unique hemostatic challenges, requiring personalized risk assessment based on diagnosis and bleeding history. Consideration of factors such as anesthetic planning, mode of delivery, and neonatal bleeding risk require meticulous management. To address these matters, the Multidisciplinary Clinic for Women with Bleeding Disorders (MCWBD) was established in 2014 at St. Michael’s Hospital. The clinic is comprised of a collaborative team including an adult hematologist, an obstetrician-gynecologist, a pediatric hematologist, an anesthesiologist, a nurse practitioner, a pharmacist, and specialized nurses. Together, they develop tailored care plans to optimize patient care for anesthetic interventions, labour, delivery, neonatal care, and the postpartum period.
Objectives:
This study aimed to characterize and understand the experiences of women with bleeding disorders who have been provided care plans by the MCWBD. We further aimed to assess the perceived effectiveness of these care plans. Methods:
The study involved semi-structured interviews with patients and healthcare providers identified from the MCWBD. Women aged 18 years and above with bleeding disorders who had received a care plan from the MCWBD and undergone labor and delivery were included. Interview transcripts were coded and analyzed using descriptive qualitative analysis. Interviews continued until thematic saturation was reached.
Results:
Eleven patient participants were interviewed. Four primary themes emerged: 1) impact of bleeding disorder on pregnancy, 2) challenges with the health care system, 3) MCWBD provided effective, patient-centered care, and 4) experiences with individualized care plans. Subthemes pertaining to the impact of the bleeding disorder on pregnancy included: a) heightened fear surrounding bleeding complications, and b) healthcare-related emotional trauma linked to the perinatal journey. Subthemes on challenges with the healthcare system included: a) perceived discomfort of non-specialized healthcare providers in recognizing bleeding symptoms, and b) observed inadequate training/awareness to manage their bleeding disorder, reinforcing the need for patient self-advocacy for emotional and medical safety. Subthemes pertaining to the theme of MCWBD providing effective, patient centered care included: a) perceived sense of support, b) recognized improved access to care, and c) experienced unburdening by providing them with external advocacy. Subthemes pertaining to experiences with their individualized care plan included perceptions that the care plans were comprehensive, reassuring, and empowering.
Conclusions:
This qualitative work provides evidence of benefit for multidisciplinary care for women with bleeding disorders - an already accepted standard of care for men with bleeding disorders. These findings suggest the need for widespread adoption of proactive, patient-centered, and coordinated multidisciplinary perinatal care for women with bleeding disorders.
No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author.
Women with bleeding disorders are at increased risk of heavy menstrual bleeding, non-anemic iron deficiency, iron-deficiency anemia, post-partum hemorrhage, and reduced health-related quality of life. Despite this, women with bleeding disorders often face barriers to receiving medical care, and thus are underdiagnosed and undertreated. The perinatal period poses unique hemostatic challenges, requiring personalized risk assessment based on diagnosis and bleeding history. Consideration of factors such as anesthetic planning, mode of delivery, and neonatal bleeding risk require meticulous management. To address these matters, the Multidisciplinary Clinic for Women with Bleeding Disorders (MCWBD) was established in 2014 at St. Michael’s Hospital. The clinic is comprised of a collaborative team including an adult hematologist, an obstetrician-gynecologist, a pediatric hematologist, an anesthesiologist, a nurse practitioner, a pharmacist, and specialized nurses. Together, they develop tailored care plans to optimize patient care for anesthetic interventions, labour, delivery, neonatal care, and the postpartum period.
Objectives:
This study aimed to characterize and understand the experiences of women with bleeding disorders who have been provided care plans by the MCWBD. We further aimed to assess the perceived effectiveness of these care plans. Methods:
The study involved semi-structured interviews with patients and healthcare providers identified from the MCWBD. Women aged 18 years and above with bleeding disorders who had received a care plan from the MCWBD and undergone labor and delivery were included. Interview transcripts were coded and analyzed using descriptive qualitative analysis. Interviews continued until thematic saturation was reached.
Results:
Eleven patient participants were interviewed. Four primary themes emerged: 1) impact of bleeding disorder on pregnancy, 2) challenges with the health care system, 3) MCWBD provided effective, patient-centered care, and 4) experiences with individualized care plans. Subthemes pertaining to the impact of the bleeding disorder on pregnancy included: a) heightened fear surrounding bleeding complications, and b) healthcare-related emotional trauma linked to the perinatal journey. Subthemes on challenges with the healthcare system included: a) perceived discomfort of non-specialized healthcare providers in recognizing bleeding symptoms, and b) observed inadequate training/awareness to manage their bleeding disorder, reinforcing the need for patient self-advocacy for emotional and medical safety. Subthemes pertaining to the theme of MCWBD providing effective, patient centered care included: a) perceived sense of support, b) recognized improved access to care, and c) experienced unburdening by providing them with external advocacy. Subthemes pertaining to experiences with their individualized care plan included perceptions that the care plans were comprehensive, reassuring, and empowering.
Conclusions:
This qualitative work provides evidence of benefit for multidisciplinary care for women with bleeding disorders - an already accepted standard of care for men with bleeding disorders. These findings suggest the need for widespread adoption of proactive, patient-centered, and coordinated multidisciplinary perinatal care for women with bleeding disorders.
No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author.