Identified unmet needs and proposed solutions in mild-to-moderate haemophilia: A summary of opinions from a roundtable of haemophilia experts.

INTRODUCTION: The experiences of patients with mild-to-moderate haemophilia differ from those of patients with severe haemophilia or those without a bleeding disorder and include a challenging diagnosis and variability in bleeding symptoms and treatment needs. In addition, there is a significant lack of data on mild-to-moderate haemophilia, and many unmet needs remain to be identified and addressed in this group of patients. METHODS: Challenges for these patients, including women with haemophilia, were identified during a roundtable meeting attended by a group of US-based experts including healthcare professionals (e.g., physicians, nurses, and physical therapists) and patients who live with a bleeding disorder. RESULTS: Identified unmet needs included a lack of proper education on the management of their disorder and prompt treatment of bleeds, absenteeism from school and work, and challenges with personal relationships. Initiatives to assist with alleviating these unmet needs were proposed and include suggestions for healthcare professionals, haemophilia treatment centres (HTCs) and national and local organizations within the bleeding disorders community. These included HTC and community engagement programmes for patients with mild-to-moderate haemophilia, revised transition guidelines for these patients as they approach adulthood and revised diagnostic classification of mild and moderate haemophilia. Challenges unique to women with haemophilia and ways to address these issues were also discussed. CONCLUSION: This paper summarizes the challenges, initiatives and suggestions that were identified by the haemophilia experts during the roundtable meeting.

Influence of speaker gender on listener judgments of tracheoesophageal speech.

The objectives of this prospective and exploratory study are to determine: (1) naïve listener preference for gender in tracheoesophageal (TE) speech when speech severity is controlled; (2) the accuracy of identifying TE speaker gender; (3) the effects of gender identification on judgments of speech acceptability (ACC) and naturalness (NAT); and (4) the acoustic basis of ACC and NAT judgments. Six male and six female adult TE speakers were matched for speech severity. Twenty naïve listeners made auditory-perceptual judgments of speech samples in three listening sessions. First, listeners performed preference judgments using a paired comparison paradigm. Second, listeners made judgments of speaker gender, speech ACC, and NAT using rating scales. Last, listeners made ACC and NAT judgments when speaker gender was provided coincidentally. Duration, frequency, and spectral measures were performed. No significant differences were found for preference of male or female speakers. All male speakers were accurately identified, but only two of six female speakers were accurately identified. Significant interactions were found between gender and listening condition (gender known) for NAT and ACC judgments. Males were judged more natural when gender was known; female speakers were judged less natural and less acceptable when gender was known. Regression analyses revealed that judgments of female speakers were best predicted with duration measures when gender was unknown, but with spectral measures when gender was known; judgments of males were best predicted with spectral measures. Naïve listeners have difficulty identifying the gender of female TE speakers. Listeners show no preference for speaker gender, but when gender is known, female speakers are least acceptable and natural. The nature of the perceptual task may affect the acoustic basis of listener judgments.