MRKH (Mayer Rokitansky Kusser Hauser syndrome) is a congenital anomaly of the reproductive tract. Approximately 1 in 5,000 female babies are born with this birth defect that includes: an absent uterus and cervix, an absent or incomplete vagina and often a solitary kidney. We currently have one of the largest referral centers in the country for teens and young women diagnosed with MRKH (vaginal agenesis). Every patient is evaluated by our team of experts consisting of: a pediatric/adolescent gynecologist, clinical nurse specialist, and social worker. Currently, once the diagnosis is confirmed and the patient chooses to proceed with a non-surgical method to create a neovagina (dilation), the process is initiated at that visit and monthly follow-up visits in our clinic are scheduled to assess progress for creation of a functional vagina. We are acutely aware that many of our patients travel long distances to centers that specialize in congenital anomalies of the reproductive tract for the initial diagnosis and formation of a treatment plan. The 1-2 month follow up visits require specialist input however the greatest impact on patient’s lives include missing school, financial burden (travel and hotels), and stress. Until now there has been no alternative to in-person follow-up visits for MRKH patients choosing dilation therapy.
TARGET AUDIENCE: Young women diagnosed with MRKH who indicate that: the expense associated with travel is a barrier to follow-up care; they own a smartphone, or laptop computer, a strong and consistent internet connection and a private, quiet area with sufficient lighting where the Telehealth visits can take place.
GOALS and OBJECTIVES: The overall goal is to provide optimal follow-up care for patients diagnosed with MRKH choosing dilation treatment to create a functional vagina. Objectives: 1. Develop a safe, patient-centric, secure, efficient and cost-effective way to assess patient progress during dilation therapy. 2. Develop a new standard for gynecologists using technology to assess patient progress during dilation treatment. 3. Demonstrate patient satisfaction associated with MRKH follow-up care.
METHODS We have identified and trained a team of clinicians and support staff involved in the Telehealth pilot study. Equipment, including cell phone stands for patients so that they can use the vaginal dilator without having to hold their cell phone during the dilation process. Patients will complete a pre-survey, and post survey/evaluations of the Telehealth program.
OUTCOMES To date six patients have met the criteria for participation and have agreed to participate in the pilot study. Telehealth visits will commence on or before Oct. 6, 2016. Enrollment in the Telehealth program will be ongoing. We plan to report the successes and challenges we face along with the practical solutions and a summary of the pre-survey and post-survey patient evaluations.
Co-Director, Center for Young Women's Health
Boston Children's Hospital
Phaedra Thomas-Kowal is a clinical nurse specialist, nurse educator and one of the Co-Directors of the Center for Young Women's Health (CYWH) at Boston Children's Hospital. She has over 20 years experience writing health guides, grants, and resources for the CYWH's award winning website: www.youngwomenshealth.org Additionally, she teaches and counsels young women diagnosed with MRKH on how to use vaginal dilators to create a functional vagina. Ms. Thomas-Kowal has a wealth of knowledge developing programs and overseeing clinical projects for the Division of Gynecology at Boston Children's Hospital. She created a online chats and a yearly conference for patients diagnosed with MRKH and their families that focuses on education and support. The 12th conference is planned for the fall of 2017. Ms. Thomas-Kowals will oversee the Telehealth project for MRKH patients.
Center for Young Women's Health, Boston Children's Hospital
Anna Miller is the media coordinator at the Center for Young Women’s Health and works to design, update, and manage all of the Center’s online content and published materials. She works to ensure that all of the Center’s information is accurate and accessible to young women around the world. She has also developed workshops and provided technical support for the Center’s annual MRKH conferences. She will now help patients diagnosed with MRKH who elect to participate in the Telehealth program to download the required software, show them how to use the program, and help to prepare them for their follow-up appointments.
Division of Gynecology, Boston Children's Hospital
Ashley is the social worker for the Division of Gynecology at Boston Children's Hospital where she provides counseling to patients with various gynecological issues including patients diagnosed with MRKH and their families. Ashley is the co-director of the annual MRKH Conference at Boston Children's Hospital and the co-author of many resource materials for patients diagnosed with MRKH. Her role in the pilot will be to help screen potential participants, review safety and privacy procedures and provide emotional support during the Telehealth follow-up visits.
Chief of Gynecology
Boston Children's Hospital
Dr. Marc Laufer is the Chief of Gynecology and the Co-Director of the Center for Young Women's Health at Boston Children's Hospital where he sees patients with gynecological issues including congenital anomalies of the reproductive tract (ex. MRKH), endometriosis, menstrual disorders, etc. He is also a Professor of Gynecology at Harvard Medical School where he lectures to medical student, fellows, and clinical staff about many gynecological conditions including muellarian anomalies. He is considered an international expert on treating young women diagnosed with Mayer Rokitansky Kusser Hauser syndrome. Patients travel from around the globe for a consultation with him and for treatment. He is the co-author of the book, Pediatric Adolescent Gynecology, now in it's 6th edition and has written numerous articles on congenital anomalies of the reproductive tract. Dr. Laufer will provide the initial consultation to all eligible participants diagnosed with MRKH electing to participate in the pilot and together with the Telehealth nurse, will explain all of the details about the Telehealth program. He will be present and observe every patient during the Telehealth follow-up visist and provide next step instructions based on his observations and assessments. Dr. Laufer will work closely with the Telehealth team to promote optimal followup care for patients diagnosed with MRKH electing to participate in the Telehealth experience..
Telehealth Program Manager
Boston Children's Hospital
Patrick McCarthy, MBA (Telehealth Program Manager) is responsible for developing the hospital’s portfolio of patient-facing telehealth programs. He leads all of the direct-to-patient telehealth programs at Boston Children’s Hospital, and is an telehealth industry expert. Mr. McCarthy will support the pilot by providing guidance regarding technical and operational deployment of HIPAA compliant video technology for centralized clinicians and patients at home.