Presentation Details
| Structured Education for Newly Diagnosed Persons with von Willebrand Disease: A Hemophilia Treatment Center Quality Improvement Project Abstract Dominique N.Barclay, Sarah E.Gonzales, Marsha Hurn, Amanda Kilgore, Jesla Ryan, Jonathan C.Roberts, Michael D.Tarantino. Bleeding and Clotting Disorders Institute, Peoria, IL, USA |
Abstract
Background:
At Comprehensive Care Clinic visits following the new diagnosis of von Willebrand disease (VWD) patients verbalized lack of understanding of their diagnosis, treatment, and the different types of clinics provided at BCDI a federally recognized treatment center for persons with bleeding disorders. BCDI staff noted inconsistencies in patients and families receiving education, documentation of education and the new diagnosis in the electronic medical record (EMR). Without consistent, comprehensive education, patients are unable to self-advocate, receive optimal care or improve their health outcomes. To address this process, BCDI developed a quality improvement project. VWD was the pilot disorder to implement the structured education program.
Project Aims:
1) Improve patients’ understanding of the diagnosis, treatment options and services offered by BCDI.
2) Develop a standardized method to deliver education to patients and families utilizing BCDI approved educational materials.
3) Improve documentation of diagnosis and education materials provided within the EMR.
Methods:
Data was collected by reviewing newly diagnosed patients at BCDI from January 2022 to September 2022. Focusing on new VWD diagnoses, data included diagnosis date and when documented, patient notificaton date, documentation of education materials provided, whether a school in-service was scheduled, type of follow-up visits, personnel who entered diagnosis in problem list. The team developed an education visit plan, reviewed available education materials and ensured they were up-to-date and available for patient use, developed an education visit checklist outlining the visit, and created pre- and post-visit questionnaires to evaluate project effectiveness. Questions utilized a 0-4 scale with 4 being the best rating, other questions were in multiple choice format.
Results:
Ten newly diagnosed VWD patients participated in the pilot educational program. A pre-visit questionnaire was completed by each patient and then the education nurse reviewed diagnosis, laboratory results, educational materials, inheritance of VWD, signs & symptoms, and treatment options with each patient. The Medical Social Worker reviewed assistance programs, travel letters, medical jewelry, school in-services, BCDI’s patient advisory board and BCDI’s website. The Physical Therapist reviewed the Comprehensive Care model and the NHF “Play It Safe” booklet. Patients then completed the post-visit questionnaires. Two weeks after the education visit the Education Nurse completed a follow-up phone call to answer any additional questions. Analysis of the pre- and post-visit questionnaires revealed that patient’s familiarity with the VWD diagnosis, using 0-4 scale, improved from pre-visit educaton score of 0.8 (0-2) to 3.6. (3-4). Fig 1a. Patient understanding of medications to avoid improved with 9/10 correct answers to multiple choice question, compaired to 2/10. Of fifteen services, patients chose which they believed BCDI provided before and after the education visit. Improvement was seen after education visit. Fig 3a, 3b. Conclusion:
Analysis demonstrated marked improvement in the patients understanding of diagnosis, treatment and services provided by BCDI. We plan to use the data from VWD and expand this process for other disorders of hemostasis and thrombosis managed at BCDI.
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.
At Comprehensive Care Clinic visits following the new diagnosis of von Willebrand disease (VWD) patients verbalized lack of understanding of their diagnosis, treatment, and the different types of clinics provided at BCDI a federally recognized treatment center for persons with bleeding disorders. BCDI staff noted inconsistencies in patients and families receiving education, documentation of education and the new diagnosis in the electronic medical record (EMR). Without consistent, comprehensive education, patients are unable to self-advocate, receive optimal care or improve their health outcomes. To address this process, BCDI developed a quality improvement project. VWD was the pilot disorder to implement the structured education program.
Project Aims:
1) Improve patients’ understanding of the diagnosis, treatment options and services offered by BCDI.
2) Develop a standardized method to deliver education to patients and families utilizing BCDI approved educational materials.
3) Improve documentation of diagnosis and education materials provided within the EMR.
Methods:
Data was collected by reviewing newly diagnosed patients at BCDI from January 2022 to September 2022. Focusing on new VWD diagnoses, data included diagnosis date and when documented, patient notificaton date, documentation of education materials provided, whether a school in-service was scheduled, type of follow-up visits, personnel who entered diagnosis in problem list. The team developed an education visit plan, reviewed available education materials and ensured they were up-to-date and available for patient use, developed an education visit checklist outlining the visit, and created pre- and post-visit questionnaires to evaluate project effectiveness. Questions utilized a 0-4 scale with 4 being the best rating, other questions were in multiple choice format.
Results:
Ten newly diagnosed VWD patients participated in the pilot educational program. A pre-visit questionnaire was completed by each patient and then the education nurse reviewed diagnosis, laboratory results, educational materials, inheritance of VWD, signs & symptoms, and treatment options with each patient. The Medical Social Worker reviewed assistance programs, travel letters, medical jewelry, school in-services, BCDI’s patient advisory board and BCDI’s website. The Physical Therapist reviewed the Comprehensive Care model and the NHF “Play It Safe” booklet. Patients then completed the post-visit questionnaires. Two weeks after the education visit the Education Nurse completed a follow-up phone call to answer any additional questions. Analysis of the pre- and post-visit questionnaires revealed that patient’s familiarity with the VWD diagnosis, using 0-4 scale, improved from pre-visit educaton score of 0.8 (0-2) to 3.6. (3-4). Fig 1a. Patient understanding of medications to avoid improved with 9/10 correct answers to multiple choice question, compaired to 2/10. Of fifteen services, patients chose which they believed BCDI provided before and after the education visit. Improvement was seen after education visit. Fig 3a, 3b. Conclusion:
Analysis demonstrated marked improvement in the patients understanding of diagnosis, treatment and services provided by BCDI. We plan to use the data from VWD and expand this process for other disorders of hemostasis and thrombosis managed at BCDI.
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.