Cross-cultural assessment of the influence of the COVID-19 pandemic on the perceived mental health and medical experiences of persons with inherited bleeding disorders and their parents/guardians.

Background: Objectives were to 1) assess COVID-19-associated medical and psychological challenges facing persons with inherited bleeding disorders (PIBD) and their parents/guardians (PG) in Germany, the US, and the UK; 2) describe similarities and differences among these countries; 3) identify needs and opportunities for intervention by patient advocacy organizations (PAGs).

Research Design & Methods: A cross-sectional, international survey was conducted in three countries using validated psychometric instruments and investigator-developed items.

Results: Five hundred and four surveys were included.

Physical therapy within US HTCs: A multicentre survey of utilization, practice patterns and pain management approaches.

Introduction: Practice patterns and utilization of physical therapists (PTs) affiliated with Hemophilia Treatment Centers (HTCs) in the United States (US) are not well known.

Aims: Describe utilization, role responsibilities and practice patterns of US HTC PTs. Identify practice patterns specifically focusing on assessment and treatment of pain.

Understanding the Pain Management Landscape Within the US Bleeding Disorder Community: A Multi-Center Survey.

Objectives: Pain is a known complication in persons with hemophilia (PWH) as a result of muscle and joint bleeding. Little is known regarding national Hemophilia Treatment Center (HTC) practice patterns related to pain management. The aim of this study was to: 1) Describe pain management practice patterns of HTC providers, 2) Identify gaps and areas of alignment with the CDC pain guidelines, and 3) Address educational opportunities for pain management.

Interrelationship between depression, anxiety, pain, and treatment adherence in hemophilia: results from a US cross-sectional survey.

Purpose: Depression, anxiety, pain, and treatment adherence have reciprocal effects not characterized extensively in hemophilia. This study explored the relationships between depression, anxiety, chronic pain, and treatment adherence in adults with hemophilia.

Patients And Methods: Adults with self-reported hemophilia A or B completed the cross-sectional IMPACT QoL II survey.

Patient, caregiver, and provider perceptions of pain and pain management in adolescents and young adults with bleeding disorders.

Introduction: Recurrent bleeding and associated pain are critical components in the management of bleeding disorders, yet scant data describe perceptions of pain in this patient population.

Objective: This study assessed perceptions of pain and pain management in adolescents and young adults (AYAs) with haemophilia or von Willebrand disease (VWD) to determine agreement/disagreement between patients, caregivers and health care providers.

Methods: Using an online questionnaire, AYA patients (N=89), their caregivers (N=77), and providers (N=54) reported on pain perception, pain treatment and pain control.

Echo-guided mitral repair.

Background: Echocardiography is available in the most basic healthcare environments. Mitral repair is potentially curative and, when possible, recommended over replacement. The efficacy of echo-guided repair has not been established.

Non-respiratory indications for polysomnography and related procedures in children: an evidence-based review.

Objective: This evidence-based review provides a systematic and comprehensive review of the literature regarding the utility of polysomnography for the evaluation of non-respiratory sleep disorders in children including hypersomnias, parasomnias, sleep-related movement disorders, and sleep in other special populations.

Methods: A task force of pediatric sleep medicine experts performed a systematic review of the literature regarding the use of polysomnography for non-respiratory sleep disorders in children. They identified and graded 76 papers as evidence.

Executive summary of respiratory indications for polysomnography in children: an evidence-based review.

Objective: This comprehensive, evidence-based review provides a systematic analysis of the literature regarding the validity, reliability, and clinical utility of polysomnography for characterizing breathing during sleep in children. Findings serve as the foundation of practice parameters regarding respiratory indications for polysomnography in children.

Methods: A task force of content experts performed a systematic review of the relevant literature and graded the evidence using a standardized grading system.