Development of a Standardized Epistaxis Severity Score (ESS) in HHT in Order to Validate Therapy Efficacy
David and Clara Bartley Jordan Epistaxis Research Grant Award
Cure HHT awarded Dr. Jeffrey Hoag, Drexel University School of Medicine, $34,375 to develop a uniform epistaxis severity scoring system.
Proposed Research Study
A major limitation in testing the success of current and new therapies, is the lack of a standardized grading system for the severity of nose bleeding in this population. Therefore, the purpose of this proposed study is to develop a standardized nose bleeding severity scoring system. Dr. Hoag will develop this scoring system through the integration of factors related to HHT-related nose bleeding obtained from both patients with the disease and physicians with expertise in the treatment of HHT-related nose bleeding.
This Epistaxis Severity Scoring system will be used to assess the effectiveness of specific treatments for HHT-related epistaxis. HHT-Epistaxis Severity Scores will help to validate current treatment algorithms, and serve as a benchmark for the development of future medical and surgical treatment strategies. The study will involve a population of 245 participants with a varying range of epistaxis severity which will provide an adequate representation of the population of patients with HHT-related epistaxis.
- Aim 1 – The study will try to determine the factors associated with epistaxis in HHT. A standardized list of patient perceived important variables combined with provider perceived important variables will provide a comprehensive list of factors associated with HHT-related epistaxis. This list will be developed with patient care providers from HHT Centers of Excellence and Patient Focus Groups through the support of the HHT Foundation International.
- Aim 2 – (Epistaxis Severity Score) This study will develop a uniform epistaxis severity scoring system.
- Aim 3 – To validate the HHT-Epistaxis Severity Score through correlation with standardized quality of life (QOL) assessments and statistical models.
- Aim 4 – (Assessment of Epistaxis Treatment) To use the HHT-Epistaxis Severity Score to assess the effectiveness of specific treatments for HHT-related epistaxis. HHT-Epistaxis Severity Scores will help to validate current treatment algorithms, and serve as a benchmark for the development of future medical and surgical treatment strategies.
Research Study Update
Dr. Hoag presented his research at the HHT Scientific Meeting held in Santander, Spain in 2009 and published his findings in the April 2010 edition of Laryngoscope. The Epistaxis Severity Scoring Tool developed by Dr. Hoag is used by ENT’s at HHT Treatment Centers around the world to determine severity of nosebleeds and improvements realized from laryngology treatments, including the 2011 NOSE Study.
This study was made possible through a generous donation from David and Clara Barley Jordan and many other Cure HHT members who made donations to the HHT Epistaxis Fund.