POSTER LISTING
POSTER ABSTRACTS
1. Trials and tribulations: a case study of haemophilia 1911-2025
Dr Alana Hansen
Outline: Haemophilia A has been in Family H since 1911. The mutated gene was passed from the matriarch to two of her five children – her son (OO) and third daughter (BO). OO died in 1941 aged 29 years with no progeny. Two of BO’s children, her eldest daughter, and son NH, inherited the gene which has been passed on to descendants in the next two generations. This study details this familial history of severe haemophilia A over a 114-year period, highlighting the similar and different challenges faced by OO and his nephew NH born 40 years later in 1951.
Supported by anecdotal and clinical evidence, we discuss both men’s experiences of living with haemophilia. We document the basic treatments prescribed for OO’s bleeds and compare these to self-treatment, monoclonal antibodies, and gene therapy options available today. In different eras both men were at the forefront of advancements in new treatments for haemophilia. For NH the latter decades of the 20th century saw rapid medical advances, but also the negative health consequences of the presence of blood-borne viruses in factor VIII concentrates.
Conclusion: Haemophilia A has not changed over time but fortunately treatments have, providing new hope for current and future generations of Family H, and others similarly affected. Due to the benefit of modern science NH now has less bleeds but faces a new and arguably more challenging prospect – ageing. This has been accompanied by age-related conditions including cardiac disease, stroke, musculoskeletal problems, and surgeries with post-operative complications. These issues that were once unheard of for sufferers of yesteryear, are now more commonly seen in those affected, but no doubt will be met with the resilience so often present in the bleeding disorders community.
4. Therapy switching: emicizumab and factor therapies in haemophilia A
Ashley Fletcher, Dr Sally Campbell, Dr. Janis Chamberlain, Dr. Stephanie P’ng
Aim: This study investigates therapy switching patterns in individuals with haemophilia A, with a focus on transitions to and from emicizumab. Analyses are stratified by disease severity, prior treatment type (prophylaxis vs. on-demand), and subsequent therapies following emicizumab discontinuation. We also examine reasons for discontinuation and rates of spontaneous bleeding while on emicizumab.
Method: Data were sourced from the Australian Bleeding Disorders Registry (ABDR) and a national survey of Haemophilia Treatment Centre Directors. Patients who received emicizumab were included, with subgroup analysis by severity: mild (n=16), moderate (n=102), and severe (n=569). Sankey plots were used to visualise treatment transitions, excluding those recorded solely on emicizumab.
The study examined prior factor therapy type, transitions to emicizumab, and subsequent therapies after discontinuation including reason for transition from emicizumab. Major spontaneous bleeds requiring factor intervention and annualised bleeding rates (ABR) are currently being assessed and will be presented.
Results: Therapy switching patterns differed significantly by severity and prior treatment type, with notable differences between prophylaxis and on-demand transitions in severe (p<0.05) and moderate (p=0.04) groups. Eighteen patients (2%) discontinued emicizumab, citing reasons including sport (33%), non-compliance (11%), remote location (11%), mental health concerns (11%), and other reasons (28%). Data on ABR’s, inhibitor status and outcomes for patients not on emicizumab will be presented, data pending.
Conclusion: This analysis provides early insights into real-world therapy transitions involving emicizumab in haemophilia A. Visualisation through Sankey plots illustrates distinct switching patterns by severity. Differences in prior treatment type underscore the importance of personalised treatment planning. Further analyses incorporating inhibitor status will support clinical decision-making and policy development.
5. A current review of bleeding disorders physiotherapy service in Australia
Abi Polus, Alison Morris
Outline and Description: An up-to-date review of the service provision of dedicated bleeding-disorder/haemophilia physiotherapy in the HTCs throughout Australia. This will be collected and presented alongside the statistics of the number of patients per Centre and the number of severe haemophilia patients per Centre.
Collected statistical data from Centres within Australia and the ABDR identifies location of Centres, the number and type of patients serviced and provision of physiotherapy services of each Centre, presented pictorially. This will allow identification of areas of increased need. This in turn can aid with requesting physiotherapy resources and services in order to align with the standard of care outlined in the World Federation of Hemophilia (WFH) Guidelines of the management of haemophilia and the AHCDO principles. These cite that access to a dedicated bleeding disorder physiotherapy service as part of the multi-disciplinary comprehensive care team, is an essential part of the management of people with bleeding disorders.
Outcome and conclusions: This poster presents a project that allows us to clearly see the number of people with haemophilia and the service provision of dedicated physiotherapy available. It will aid in service provision. It identifies areas where more service is required. Further research is required to capture the non-haemophilia data.
6. Haemophilia gym group
Wade McGrath, Abi Polus, Catherine Haley
Background: Regular physical activity is widely accepted to be beneficial for both physical and mental health in the general population. This is no different for those with bleeding disorders, with growing evidence showing the positive effects of both resistance and aerobic exercise specifically in these individuals.
Structured exercise is now accepted to be safe for those with haemophilia and may help combat the higher rates of osteoporosis and poorer aerobic capacity in these individuals. Exercise does not appear to increase bleeding risk and can lead to improved muscle strength, proprioception and decreased pain perception.
Barriers to exercise exist for those with haemophilia, such as joint dysfunction, fear of injury and associated pain. Other potential barriers to participation include mobility issues, fatigue, lack of motivation and lack of time.
Outline and description of topic: In an attempt to increase the exercise and activity levels of patients in Victoria within our haemophilia treatment centre at The Alfred Hospital, we have recently introduced a weekly “Haemophilia Gym Group”. This group runs for one hour and participants are supervised by a physiotherapist who works within the haemophilia department.
All patients are required to have had a one-on-one session with the physiotherapist prior to their commencement in the class to familiarise themselves with both the therapist, environment and equipment. Each participant is also required to complete the “Haemophilia Activities List” outcome measure prior to their first session to assess their self-reported limitations in various activities of daily living, which will then be reassessed in the future to see if the gym group has been effective.
Conclusions/Outcomes: Although in its infancy, the initial response from both staff and participants has been positive, and there are plans to expand to multiple days per week. We hope that this service will help our patients with haemophilia from both a physical and psychological perspective and help them feel more comfortable and confident exercising going forward.
7. The importance of multidisciplinary management of muscle haematomas in mild haemophilia: A case study
Hayley Coulson, Joanna McCosker, Dr Simon Brown, Tristan Reddan
Multidisciplinary management of muscle haematomas in patients with haemophilia is essential for complication-free recovery. Muscle haematomas are one of the most common sites of bleeding in haemophilia patients and develop when the muscle is over-stretched or when there is direct trauma to the muscle.
In this case study we discuss the management of an adolescent male with mild haemophilia who presented to a regional hospital following a sporting injury to his thigh. On review, the patient had a swollen, firm, warm thigh with considerable pain and limited active range of movement at the knee and hip. Objectively, there was a 5cm circumferential difference when comparing the thighs. This injury was later diagnosed on ultrasound as a large muscle haematoma within the vastus intermedius muscle with herniation through the fascia to the posterior border of the rectus femoris muscle. Treatment with recombinant factor VIII was delayed due to the unavailability of the factor concentrate at the regional hospital, which resulted in an inpatient admission and lengthy rehabilitation.
Many individuals with mild haemophilia may not be aware they have the condition or have limited experience in recognising the early signs of bleeding, particularly muscle haematomas. This can contribute to a potential delay in diagnosis and initiation of treatment, increasing the risk of significant complications and poorer outcomes. We highlight the importance of serial imaging with ultrasound as a useful adjunct in the management of muscle haematomas, as it is increasingly accessible and provides a direct measurement of the haematoma volume. This is not only important at baseline to grade the severity of the bleed and guide initial treatment decisions, but also to ensure no recurrence during the rehabilitation phase. At 15 weeks, the ultrasound showed almost complete resolution of the muscle haematoma, with the patient successfully rehabilitated back to sport complication free.
8. HaemPref Survey: Understanding haemophilia treatment preferences and goals in Australian adults and parents of children with haemophilia
Simon Fifer, Suzanne O’Callaghan, Natashia Coco, Hannah Deen
Outline and description: With haemophilia therapies rapidly evolving, and the potential for several emerging therapies to be made available in Australia, understanding the treatment preferences of affected Australians is crucial. In partnership with Haemophilia Foundation Australia, Community and Patient Preference Research (CaPPRe) conducted an online survey with Australian adults and parents/carers of children with haemophilia. Participants were offered several hypothetical (imaginary) treatment options and were asked to indicate their treatment preferences through a Discrete Choice Experiment (DCE) and their treatment goals through a Best-Worst Scaling exercise (BWS). 72 participants completed the survey: 38 adults with haemophilia and 34 parents/carers of children with haemophilia under 18 years. 48 participants or their child had experienced a recent bleed (in the last 12 months); 24 participants or their child had not experienced a recent bleed.
Conclusion/outcomes: The DCE modelling predicted that 72% of participants who had (or whose child had) experienced a recent bleed (in the past 12 months) and 80% of participants who had not (or whose child had not) experienced a recent bleed would choose a monthly subcutaneous injection treatment over a gene therapy that had an 80% success rate and effects lasting up to 5 years. This was when both options offered the same reduction in annual bleeds and improvements in physical activity, and similar risks of side effects. Many participants would switch their preference to a gene therapy that had a 99% success rate and effects lasting up to 7 years, with modelling predicting that 62% of participants with a recent bleed and 50% of participants without a recent bleed would choose this option. The modelling predicted even more participants would choose a gene therapy that had a 99% success rate and effects lasting up to 10+ years (predicted preference with a recent bleed: 75%; without a recent bleed: 65%). Participants prioritised the following treatment goals in the BWS: independent and pain free physical activity, social engagement and maintaining physical and emotional well-being.
These findings underline the need for ongoing long-term research into gene therapy and effective health communication regarding its expected success rate and length of effect. Shared decision-making will also be an important way for treating teams and patients/parents to respond effectively to individuals’ treatment preferences and goals.
9. Evaluating support for treatment decision-making:
WFH Shared Decision-Making tool survey
Suzanne O’Callaghan, Natashia Coco
Outline and description: The current treatment environment for bleeding disorders involves both new and emerging therapies and personalised treatment. When exploring treatment options, the shared decision-making process between a patient with a bleeding disorder and their treating team is increasingly important. The World Federation of Hemophilia (WFH) has developed a Shared Decision Making tool (SDM – https://sdm.wfh.org) to support the process. Haemophilia Foundation Australia conducted a survey of Haemophilia Treatment Centre nurses, psychosocial workers and physiotherapists to seek their views on the tool and appropriate promotion.
Conclusion/outcomes: In total 23 health professionals completed the survey: 12 nurses, 6 social workers/psychologists and 5 physiotherapists. The greater majority (19/20) thought the tool would help when discussing treatments with their patients. They thought the tool was well-structured, had supporting information that was easy to understand and that it would encourage discussion between the patient and clinicians in the process of considering treatment options. Some thought it could be improved by adding an alternative version that is suitable for patients with lower literacy.
These responses support the value of the WFH Shared Decision Making tool and the benefit of promoting the SDM tool to Haemophilia Treatment Centres and the bleeding disorders community as a useful support in the shared decision-making process around treatment options.
10. Establishing the HFA Council Women and girls Advisory Group (WOMAG): A female voice at the table
Suzanne O’Callaghan, Natashia Coco, Leonie Demos
Outline and description: Internationally, it is well recognised that women and girls with bleeding disorders are underdiagnosed and underserved and experience a lack of understanding of their unique needs.
Recognising the work that needs to be done to represent and support women and girls more effectively, HFA Council has established the Women and girls Advisory Group (WOMAG) to advise it on the needs and issues of women and girls affected by bleeding disorders and to propose a national strategic response. Women with a variety of experiences were invited by HFA to join the Group and cover the range of states and territories, ages and types of bleeding disorders. There is a permanent seat on Council for the Chair of the group, meaning that women’s voice is always at the table. The Group held its inaugural meeting at a workshop in Sydney in February 2025.
Conclusion/outcomes: During the workshop the Group explored background issues, identified needs across the lifespan and considered some short and longer-term strategies to work towards change. The Group developed the tagline of ‘education, equality, engagement’ to promote the priority goals identified in the workshop. The first goal of ‘education’ focuses on educating the affected and broader community and health professionals about the needs of women and girls and raising awareness about appropriate diagnosis and inclusion in the Australian Bleeding Disorders Registry (ABDR). The second goal of ‘equality’ aims to achieve equal access to testing, treatment and research/clinical trials and an evolving understanding and female-centric approach to women and girls with bleeding disorders. The third goal of ‘engagement’ proposes strategies to engage women, the community and champions among health professionals and other strategic supporters in this work. This is an important step in addressing issues for girls and women with bleeding disorders.
11. MDT care of a regional patient with inherited factor VII deficiency and subsequent inhibitor from diagnosis to now
Lara Nicholson, Dr Simon Brown, Hayley Coulson, Elise Mosey
M was seven when her significant epistaxis, ankle injury and bruising led to a GP referring to the QCH Haemophilia Treatment Centre and the diagnosis of a severe and rare bleeding disorder – FVII deficiency complicated by inhibitors.
M immediately began Novo seven treatment; however, even with this treatment, M’s existing left ankle bleed led to degenerative changes shown in treatment associated imaging over a period of months. The FVII inhibitor level was initially monitored and FVIIa dose frequency increased. Due to rising inhibitor titre and frequent bleeding symptoms, they then commenced on rituximab and had a total of four doses over four weeks. The family and team attempted to stabilise M’s complex diagnosis alongside continued episodes of epistaxis, bruising and increased limits to M’s capacity to mobilise. M required a wheelchair to mobilise at this acute phase and the Haemophilia team subsequently advocated strongly to NDIS to evidence the functional impact of their ankle degeneration and need to mobilise at home.
The family required an NDIS Package for supports specific to the permanent nature of M’s condition and this included a wheelchair to mobilise at home and school. M is now walking and making functional improvements under close supervision and monitoring from parents and the HTC. This physiotherapy approach in M’s care has changed after two years of treatment and care where walking was not safe and this change was also a trigger point of anxiety for the family.
Trauma informed counselling has been relevant at this later stage, despite M becoming more independent. The team have supported the family to adjust to an evolving treatment plan and process significant adjustments to M’s diagnosis as they have physically developed and responded to treatment. A psychosocial focus on trauma-informed counselling alongside building capacity for a complex medical patient inclusive of NDIS advocacy, was crucial at two stages of M’s treatment journey.
12. A family and team’s CALM approach to procedural distress in paediatric haemophilia
Lara Nicholson, Dr. Sally Campbell, Tiara Tan, Joanna McCosker, Tamara Shannen, Elizabeth Kehoe, Janelle Keyser
Procedural distress in paediatric haemophilia, while very different now in 2025, continues to remain a challenge for both family and medical teams. QCH recently launched a CALM framework for clinicians to use when working with procedural distress. This team have begun to use the framework when working with small children with haemophilia having procedural anxiety, adapting its content in partnership with families. Two particular children experienced significant procedural anxiety across various admissions through the emergency department, in outpatient clinics and at home.
After many admissions involving cannulation, B’s parents engaged with social work and the team to create a CALM Plan for their 2-year-old with moderate haemophilia A. During counselling sessions, B’s parents identified the unique strategies, routine and rewards that have worked for them thus far and adapted them to the Comfort, Analgesia, Language and Mindfulness categories on a one-page document they can screen shot and show emergency staff (who also have it on patient’s record) in times of emergency admissions.
The process of identifying B and their parents’ unique existing practice wisdom and validating this on a workable reference tool aims to reduce anxiety for parents and child in this setting. K’s parents had struggled with their now five-year-old child with moderate haemophilia B, having repeated procedural distress. K’s parents also had existing skills and wisdom to input to the CALM framework within a CALM session and have noticed an increase in their confidence as well as much reduced procedural distress.
Procedural distress with babies and small children will always pose significant challenges for families and the treating teams. Using a trauma-informed CALM framework within strengths-based and trauma-informed counselling from an attachment perspective can potentially help build capacity for parents of children with haemophilia.
14. Understanding patient information needs when undergoing gene therapy for haemophilia
Natashia Coco, Suzanne O’Callaghan, Dr Liane Khoo, Dr Stephanie P’ng
Outline and description: Undergoing gene therapy for haemophilia can involve significant decision-making, preparation and follow-up, as well as the gene therapy infusion itself. To support the person with haemophilia in managing this process, appropriate patient information is crucial. Haemophilia Foundation Australia and Australian Haemophilia Centre Directors’ Organisation conducted an anonymous online survey of patients who had undergone gene therapy for haemophilia to evaluate their satisfaction with information provided during their treatment experience. The survey asked participants if they had received enough information before, during and after the gene therapy infusion and any other information that would have been helpful.
Conclusion/outcomes: Thirteen people with haemophilia completed the survey: 10/13 with haemophilia A; 3/13 with haemophilia B. All (13/13) were satisfied with the information they received during decision-making; 12/13 responded that they had enough information before infusion day; and similarly 12/13 had enough information after infusion day. Suggestions for other helpful information included psychological support, managing side-effects (eg, steroids), length of time required for follow-up testing, and therapy required for invasive procedures/surgery. When asked how they would have liked to receive the information, nearly all (12/13) would like to talk to the clinical team, 8/13 would like to receive printed fact sheets/booklets and smaller numbers would like to access a range of digital options.
Overall people with haemophilia were very satisfied with the patient information they received during the gene therapy process. Responses about other helpful information and formats will be used to develop patient information resources and approaches in the future.
15. Exploring the current use of point of care ultrasound by physiotherapists working in Haemophilia Treatment Centres around Australia
Alison Morris, Abi Polus
Outline and Description: Point-of-care ultrasound (POCUS) is an emerging tool in haemophilia care, offering real-time, non-invasive assessment of joint health. It is used for both the early detection of joint bleeds and serial monitoring of joint health over time. The Australia and New Zealand Physiotherapy Group (ANZHPG) is a specialist group of physiotherapists working in HTCs across Australia. The extent of POCUS utilisation by this group is currently unclear.
The co-chairs of the ANZPHG undertook a preliminary survey of all members to:
- Determine the availability of an ultrasound machine within their HTC
- Determine current usage patterns
- Understand the level of training the physiotherapist has had in POCUS and
- Determine any barriers to use.
Results / Conclusion: Despite recognition of the importance of POCUS as an adjunct to other assessment methods, physiotherapists identified many barriers to routine implementation within their centre. Key barriers included restricted access to ultrasound equipment, not having physiotherapy FTE dedicated to the HTC, lack of formal training and mentoring, time constraints, and limited organisational support.
The findings of this survey will be used to determine future strategies to encourage wider adoption of POCUS in haemophilia physiotherapy practice across Australia.
16. Shifting landscapes: A comparison of surgery and procedures in haemophilia patients over two 12-month periods 10 years apart
Penny McCarthy, Megan Walsh, Kara Cordiner
Haemophilia is a rare inherited bleeding disorder caused by deficiencies in clotting factors VIII (haemophilia A) or IX (haemophilia B). Significant advancements in prophylactic treatment and overall health management – particularly in an ageing population—have expanded both the range and necessity of surgical procedures safely available to individuals with haemophilia.
Over the past decade, innovations such as extended half-life factor concentrates, non-factor therapies, and individualized perioperative care protocols have significantly reshaped the surgical landscape for this population. This poster presents a comparative snapshot of the types of surgeries performed in people with Haemophilia during two 12-month periods, in 2014 and 2024, highlighting how evolving treatment paradigms have influenced surgical trends and opportunities.
17. Haemophilia Foundation Queensland:
Supporting the Bleeding Disorders Community
Lauren Green, Amanda Johnson
Haemophilia Foundation Queensland (HFQ) is committed to supporting individuals and families affected by bleeding disorders across Queensland. This poster presents the scope of HFQ’s work, which includes advocacy, education, awareness campaigns, and direct community support, with a strong focus on inclusion and meaningful connection.
Awareness is a core aspect of HFQ’s mission. Approximately 2,000 Queenslanders live with diagnosed bleeding disorders, including haemophilia, von Willebrand disease, and other rare factor deficiencies. HFQ highlights the diverse experiences of community members – women, children, and those ageing with a disorder – to promote understanding and reduce stigma. Each October, ‘Bleeding Disorders Awareness Month’ features initiatives that engage both the public and healthcare professionals. A key event, the ‘Light It Up Red’ campaign, sees over 100 Queensland landmarks illuminated in red. The month officially begins with an event at Government House, hosted by the Governor and attended by HFQ members and supporters.
HFQ also provides essential support through regional outreach, visiting locations such as Cairns, Townsville, and Rockhampton. These clinics offer guidance on treatment, subsidies, and HFQ services, ensuring rural and remote communities are not left behind.
Community connection is fostered through regular social gatherings, including men’s and women’s lunches that offer safe spaces for sharing experiences. The annual HFQ Family Camp is a highlight, encouraging peer support through inclusive, family-friendly activities. Programs tailored to children – such as day trips and theme park visits – help younger members build confidence and community ties.
Through ongoing advocacy, education, and inclusive engagement, HFQ continues to be a trusted and responsive organisation for all Queenslanders living with bleeding disorders, working to improve quality of life and foster lifelong connections.
18. Patient, consumer and societal perceptions on high-cost gene therapies for haematological disorders
Dr Amanda Rush, Kristine Pierce, Prof Richard De Abreu Lourenco, Prof Kylie Mason, Prof Kirsten Howard, Dr Garry Lynch, Pippy Walker, Prof Rosalie Viney
Outline: While novel gene therapies have the potential to improve patient outcomes, many are associated with high upfront costs. Additionally, the long-term benefits and risks of these therapies remain unknown. These uncertainties present challenges for Health Technology Assessment (HTA) committees, such as the Pharmaceutical Benefits Advisory Committee (PBAC) and Medical Services Advisory Committee (MSAC). These committees systematically assess health interventions that seek public subsidy. To inform HTA, it is critical to seek insights from those with lived experience on what matters when thinking about funding new health care interventions.
This study aimed to understand preferences for funding of high-cost gene therapies for haemophilia B, sickle cell disease and beta thalassemia, major disease targets for gene therapies. Eight interviews and 15 focus groups with those living with haematological disease, their carers, disease advocates, and a cross-section of the general population were undertaken (total 87 participants) between June and September 2024. Interviews and discussions were transcribed, and inductive thematic analyses were undertaken using NVivo (Version 14).
Five key themes were identified: patient, disease and treatment considerations; access; impacts (benefits and harms); impacts (costs); and uncertainties. Each theme was further divided into sub-themes, such as evidence of prior success, awareness of options, trust in clinicians, geographical distance from therapy centres, societal benefits, and effectiveness.
Conclusion: Identified themes from discussions with patients and carers provide important insights into health and social factors that may influence individual decision making and HTA. This work forms part of a larger research project funded by Australia’s Medical Research Futures Fund and led by Professor Kirsten Howard: ‘Development of a generalisable evaluation framework for high upfront-cost gene therapies: clinical, financial, ethico-legal and cultural considerations’. This project aims to provide decision-makers with a robust basis upon which to assess the clinical and cost-effectiveness of new and emerging gene therapies.