A clinical practice guideline for primary care physiotherapy in patients with haemophilia.

Introduction: As a result of centralisation of haemophilia care to a limited number of intramural settings, many persons with haemophilia have to travel long distances to attend their haemophilia specialised treatment centre. However, regular physiotherapy treatment can be provided by primary care physiotherapists in the person's own region. Due to the rarity of the disease most primary care physiotherapists have limited experience with this population.

Joint health and pain in the changing hemophilia treatment landscape.

Introduction: Hemophilia is an inherited bleeding disorder. Bleeding, and in particular joint hemorrhage results in chronic arthropathy and disability. Acute and chronic pain are frequent and limit activity and participation and result in decreased health-related quality of life.

The Effects of Wastewater Reuse on Smallmouth Bass (Micropterus dolomieu) Relative Abundance in the Shenandoah River Watershed, USA.

Municipal and industrial wastewater effluent is an important source of water for lotic systems, especially during periods of low flow. The accumulated wastewater effluent flows-expressed as a percentage of total streamflow (ACCWW%)-contain chemical mixtures that pose a risk to aquatic life; fish may be particularly vulnerable when chronically exposed. Although there has been considerable focus on individual-level effects of exposure to chemical mixtures found in wastewater effluent, scaling up to population-level effects remains a challenging component needed to better understand the potential consequences of exposure in wild populations.

Expert United Kingdom consensus on the preservation of joint health in people with moderate and severe haemophilia A: A modified Delphi panel.

Aim: For people with haemophilia A (PwHA), bleeding in the joints leads to joint damage and haemophilia-related arthropathy, impacting range of motion and life expectancy. Existing guidelines for managing haemophilia A support healthcare professionals (HCPs) and PwHA in their efforts to preserve joint health. However, such guidance should be reviewed, considering emerging evidence and consensus as presented in this manuscript.

Using theory of change to co-create a programme theory for a telerehabilitation intervention for pain management in people with haemophilia.

Background: Improved approaches for chronic pain management are a clinical and research priority for people with haemophilia (PWH). Involving people with lived experience in the design of a complex rehabilitation intervention strengthens the credibility and plausibility of the intervention, particularly in relation to rare disorders. Here we describe using a 'Theory of Change' (ToC) dialogue-based stakeholder process to create a programme theory for a telerehabilitation intervention.

Humanistic burden of problem joints for children and adults with haemophilia.

Introduction: The "problem joint" (PJ) concept was developed to address patient-centric needs for a more holistic assessment of joint morbidity for people with haemophilia (PwH).

Aim: To quantify the humanistic burden of PJs in PwH to further support validation of the PJ outcome measure.

Methods: Multivariable regression models evaluated the relationship between PJs and health-related quality of life (HRQoL, EQ-5D-5L) and overall work productivity loss (WPL) using data from the 'Cost of HaEmophilia: a Socioeconomic Survey' population studies (adults: CHESS II, CHESS US+; children/adolescents: CHESS-Paeds).

Promoting physical activity for people with haemophilia in the age of new treatments.

Haemophilia treatment has seen great advances in recent years with an accompanied reduced risk of physical activity (PA) related bleeds. Based on its known health benefits, people with haemophilia (PWH) are currently encouraged to regularly engage in PA. However, this may not always translate to increased levels of PA.

The Hemophilia Joint Health Score version 2.1 Validation in Adult Patients Study: A multicenter international study.

Background: The Hemophilia Joint Health Score (HJHS) was developed and validated to detect arthropathy in children. Additional evidence is required to show validity in adults. We studied the convergent and discriminant construct validity of the HJHS version 2.

The statistical power to detect regional temporal trends in riverine contaminants in the Chesapeake Bay Watershed, USA.

Chemical contamination of riverine ecosystems is largely a result of urbanization, industrialization, and agricultural activities occurring on adjacent terrestrial landscapes. Land management activities (e.g.

Fitness enhances psychosocial well-being and self-confidence in young men with hemophilia: Results from Project GYM.

Introduction: Contemporary hemophilia care supports physical activity, its benefits being well recognized. Despite recognition of the psychological challenges encountered by people with hemophilia, little is known about the psychological impact of physical fitness in this population.

Aim: To identify changes in psychological well-being in young men with hemophilia through participation in a gym program.

Project GYM: A randomized feasibility study investigating effect on motivation of personal trainer-led exercise in young men with hemophilia.

Introduction: Many young men with hemophilia engage in physical activity and sport but face challenges to participation because of their hemophilia. Project GYM aimed to investigate the feasibility of a hemophilia-specific fitness program led by a personal trainer (PT) and its impact on gym activity, motivation, and adherence to exercise.

Methods: This was a nonblinded, randomized feasibility study, recruiting participants aged 18 to 25 years with hemophilia A or B (all severities, ± inhibitor) from three London hemophilia centers.

The Role of Physiotherapy in the New Treatment Landscape for Haemophilia.

The physiotherapist plays an essential role for people with haemophilia, an inherited bleeding disease responsible for musculoskeletal complications. Yet, with the advent of new and advanced therapies, the medical landscape is changing, and physiotherapy must adapt alongside. This paper considers whether there will still be a need for physiotherapy in the era of advanced therapies, and discusses ways in which services should evolve to complement emerging treatment paradigms for haemostasis in people with haemophilia.

The importance of casting an eye beyond the dental arch: A case report.

Study models are frequently used in orthodontics and are a key part of both initial assessment and treatment planning. They are an important part of comprehensive orthodontic records; furthermore, study models are an essential diagnostic aid that can be studied in detail without the patient being present. We present a case of a 14-year-old boy with an abnormal palatal swelling detected by his specialist orthodontist after review of study models taken at the initial appointment.

Physiotherapy interventions for pain management in haemophilia: A systematic review.

Purpose: Approximately 35%-50% of people with haemophilia (PWH) report living with chronic musculoskeletal pain. Although exercise based rehabilitation is effective for pain in other arthritises, there are no published guidelines for management of chronic pain in PWH. This review aims to evaluate and appraise the current evidence of effectiveness of physiotherapy interventions on (a) pain intensity, (b) quality of life (QoL) and (c) function in PWH.

Scope of practice of haemophilia physiotherapists: A European survey.

Introduction: European guidelines on the care of haemophilia recommend ready access to a range of services provided by a multidisciplinary team of specialists including physiotherapy. However, the scope of physiotherapy provided is unknown.

Methods: The Physiotherapists Committee of the European Association for Haemophilia and Allied Disorders (EAHAD) conducted a web-based survey to quantify the role and scope of practice of physiotherapists involved in haemophilia care.

Investigating the relationship between the HJHS and HAL in routine clinical practice: A retrospective review.

Introduction: Comprehensive musculoskeletal assessment for monitoring joint health in haemophilia includes both physical assessment with Haemophilia Joint Health Score (HJHS) and assessment of self-reported function by Haemophilia Activities List (HAL).

Methods: Correlation between physical assessment and joint function was undertaken between HJHS and HAL in patients with SHA and SHB who had both assessments at the same visit over a one-year period.

Results: Data from 120 patients (96-SHA/24 = SHB) with a median age 33 years (range 19-73) were included.

Recent advances in musculoskeletal physiotherapy for haemophilia.

Physiotherapy is directed towards the movement needs and potential of individuals, providing treatment and rehabilitation to develop, maintain and restore maximum movement and functional ability throughout the lifespan. Recent systematic reviews and randomized controlled trials have extended evidence for the clinical efficacy of physiotherapy interventions and rehabilitation for people with haemophilia. This narrative review synthesizes recent evidence to discuss; differentiating musculoskeletal bleeding and haemophilic arthropathy, efficacy of physiotherapy and rehabilitation for acute musculoskeletal bleeding and arthropathy, as well as monitoring musculoskeletal health.

Probing binding specificity of the sucrose transporter AtSUC2 with fluorescent coumarin glucosides.

The phloem sucrose transporter, AtSUC2, is promiscuous with respect to substrate recognition, transporting a range of glucosides in addition to sucrose, including naturally occurring coumarin glucosides. We used the inherent fluorescence of coumarin glucosides to probe the specificity of AtSUC2 for its substrates, and determined the structure-activity relationships that confer phloem transport in vivo using Arabidopsis seedlings. In addition to natural coumarin glucosides, we synthesized new compounds to identify key structural features that specify recognition by AtSUC2.

The second Team Haemophilia Education Meeting, 2016, Frankfurt, Germany.

The first Team Haemophilia Education (THE) Meeting was held on 7-8 May 2015 in Amsterdam, The Netherlands. It aimed to promote the optimal care of patients with haemophilia through education of the multidisciplinary treatment team. This was achieved by reviewing the latest developments in haemophilia management, considering how these can be implemented in the clinic to improve patient care and providing a platform for networking and debate for all haemophilia treatment team members.