A multidisciplinary approach to optimising the virtual management of haemophilia: a roundtable meeting of UK experts

International guidelines recommend that comprehensive haemophilia care should be delivered by a MDT, usually consisting of a haematologist, nurse, psychologist, laboratory specialist and physiotherapist ^[3,17–20]. In the United States (US), the addition of a clinical haemophilia pharmacist to the MDT was associated with a reduction in bleeding rates and medication costs ^[20].

Several best practices for haemophilia care, including MDT care, have been identified by healthcare professionals (HCPs) in the UK and Canada (Table 1), which involve a non-hierarchical team attitude and regular meetings ^[21]. In the US, haemophilia treatment centres (HTCs), specifically designed to provide multidisciplinary care, have received high levels of patient satisfaction and have been associated with fewer bleeds and associated emergency department visits, as well as a positive impact on patients’ quality of life ^[22]. Tools and algorithms are also in development to improve MDT care and assist with shared patient and provider decision-making in the current landscape of multiple diverse therapy options ^[13].

The necessity of MDT care is well recognised globally ^[3]; however, there are still several associated unmet needs associated, such as pain management, improved access to HTCs and involvement of additional specialities during HTC visits ^[23,24]. Moreover, priorities in resource-limited countries differ from those in rich countries. The importance of medication access and the potential challenges associated with adherence have been the focus of literature from these regions ^[25,26].

Prior to the COVID-19 pandemic, virtual MDT haemophilia care was gaining support worldwide ^[27–29]; however data was limited ^[15]. The pandemic necessitated rapid implementation of innovative virtual solutions to ensure continued access to multidisciplinary care ^[15]. In the US, the use of telemedicine showed a 78-fold increase between February and April 2020. Despite a subsequent decrease, a 38-fold increase versus the pre-pandemic level was still evident in February 2021 ^[16]. During the pandemic, paediatric care remained accessible to patients but in adapted forms (e.g., via telemedicine) across HTCs in Europe, Israel and Canada ^[30]. A European survey completed in 2021 reported that virtual pharmacokinetic tools were being utilised by many centres ^[31]. One mobile application in development for patients with haemophilia features medication reminders, remote communication with healthcare providers and self-monitoring logs, with the aim of aiding self-management ^[32]; however, data privacy and the patient’s willingness/ability to use technology require further consideration ^[33].

In the UK, virtual MDT care was widely used throughout the pandemic; however, the format varied depending on the healthcare setting and available resources. A mix of video software/platforms, including Microsoft Teams, Attend Anywhere, Zoom, Skype, accuRx and WhatsApp, were used prior to and during the pandemic, with the choice of platform depending on HCP and MDT preferences and local policy. Following a reduction in COVID-19 rates, hybrid care formats were being adopted in most settings, enabling greater flexibility in the delivery and personalisation of care.

The format of virtual MDT care depends on the healthcare setting, available resources, HCP and MDT preferences and local policy. The implementation of hybrid formats will further facilitate MDT/patient flexibility and the personalisation of care.

Several studies have described the benefits associated with virtual MDT care. Implementation of a multidisciplinary approach using a virtual platform at a HCCC in Belfast, UK, was positively viewed by patients and staff and was associated with higher attendance rates (93% virtual versus 69% face-to-face clinics) ^[34]. In Dublin, Ireland, the use of telehealth for the delivery of comprehensive care (e.g., medical, nursing and physiotherapy appointments) (Figure 1) increased the number of patients undergoing consultations and reduced non-attendance rates compared to the previous year ^[15].

Figure 1.

The challenges of virtual haemophilia care have been particularly described for physiotherapy and rehabilitation ^[35]. Although telehealth may be applicable to some aspects of this care (e.g., triaging for acute concerns), some face-to-face contact is expected to remain necessary ^[36]. When assessing patients, physical examination is an important tool and both physiotherapists and patients have expressed concerns that this is not possible in a virtual setting ^[35,36]. In addition, patients may not own the correct equipment to adequately benefit from the virtual session ^[35]. Assessment tools, such as the Haemophilia Joint Health Score, intended for in-person consultations, require adaptation for remote use ^[36]. While newer products may provide improvements in treatment effectiveness, the need for physiotherapy is expected to persist and services will need to evolve as the landscape progresses ^[37].

Further challenges of virtual consultations include the lack of deep discussion and disclosure of private information ^[34]. The inability to carry out physical examinations or specific testing may lead to further face-to-face appointments ^[34]. In addition, video consultations require access by both patients and HCPs to appropriate IT equipment, and organisational processes may require adjustments to avoid dependence on physical presence ^[15].

The advisors agreed that virtual MDT care is associated with several benefits, which include improved convenience and choice for their patients, as well as access to a wider network of patients. However, there are also many patient-specific challenges, such as difficulties building relationships and gaining the trust of new or newly diagnosed patients, and complexities with gaining a thorough understanding of the patient’s needs. For paediatric patients, ensuring sufficient engagement and safeguarding, and that parents/guardians are present throughout the appointment, can be challenging. Furthermore, in virtual settings, indicators of abuse/neglect may be less recognisable.

Logistical difficulties, such as space limitations and ensuring privacy from other household members, may be encountered when evaluating patients virtually. In particular, joint and musculoskeletal assessments may be restricted, due to only being able to observe instead of assessing hands-on. Consultations overrunning or taking longer, inappropriate appointment locations (e.g., whilst driving) and technical issues may also present problems. From the perspective of the healthcare system, students and trainees may not get the opportunity to undertake placements and practical learning experiences. Opportunities to optimise virtual care include the development of new hybrid care models and interactive virtual materials, plus increased use of administrative staff to organise hybrid care, including checking-in patients and confirming key information prior to virtual appointments.

Advisors agreed that virtual MDT care is associated with several benefits such as improved convenience/choice for their patients and wider patient reach; however, many patient-specific and logistical challenges exist and require attention. Hybrid care models may provide an opportunity to overcome these challenges and further optimise MDT care.

The World Federation of Hemophilia (WFH) recommends that patients are taught how to manage their care at home, empowering them to recognise bleeds and to self-infuse. Self-management promotes rapid treatment, minimising the effects of bleeding. Ability to recognise and treat breakthrough bleeding is important for patients receiving prophylaxis with new types of coagulation therapy, and this capability should be assessed by their physician ^[3].

Patients should keep detailed records of treatments administered and bleeding episodes experienced ^[3]. It has been demonstrated that electronic diaries may be associated with more comprehensive data reporting, as well as an improvement in treatment adherence ^[38]. In the UK, Haemtrack is an established and widely used system for patients with bleeding disorders ^[39]. Although paper versions are available, the majority of patients opt to use the electronic diary, accessible via PC software and mobile applications ^[39]. Haemoassist^TM 2 is another system, predominantly used in Spain and Germany, shown to be effective in enabling patients to document their prophylactic infusions and treatment of bleeding ^[40]. A study in Hong Kong reported that patients are receptive to using mobile technology to organise their bleeding records and manage their health ^[41].

The care model for bleeding management varied among advisors. Some advisors prefer for patients to have a face-to-face assessment for acute bleeding and a virtual follow-up, while others prefer to assess remotely so the patient can rest, with a face-to-face follow-up after rehabilitation. Telephone consultations alone are not sufficient for assessing bleeds as it is not possible to identify non-verbal cues and movement restrictions. Advisors are more comfortable with assessing bleeds remotely in patients with whom they have strong and trusted relationships, enabling confidence in the patient’s ability to self-manage. Face-to-face assessments are preferable for new and newly diagnosed patients, patients with mild/moderate disease and those known to require ongoing support. The group agreed that patients should be assessed in person if there is any uncertainty surrounding the bleed.

It is important to encourage frequent and open dialogue with patients who are self-managing remotely. A bleeding episode described by a patient may not represent the overall clinical situation and may require further assessment. Virtual tracking tools (e.g., Haemtrack) are used in some centres to manage patients remotely and, while usage increased at the beginning of the pandemic, it has subsequently declined. Hesitancy among HCPs to rely on virtual tracking tools may be attributable to the risk that patients may not document their bleeds in an accurate or timely manner. The use of home delivery of medication was described by one advisor; their centre first implemented this during the pandemic and a positive reception was received.

The decision as to whether bleeds are managed virtually or face-to-face should depend on provider preference, the patient-provider relationship, and the patient’s disease severity, history, and ability to self-manage. As such, this should be assessed on a case-by-case basis. Virtual tracking tools should not be solely relied upon for MDT decision-making as patient accuracy cannot be ascertained.

No published literature reporting experiences of virtual paediatric care were found. Home therapy for children with haemophilia is advocated by the WFH ^[3]. For young children, family and carers may be trained to administer coagulation factor concentrates, while older children and teenagers can be taught self-infusion. The need for education is high; children must understand more about their condition as they become older and seek to gain the skills required for self-care ^[3]. It is important to note that educational activities may require adjustment according to each child’s health literacy and health numeracy ^[42]. Equally, the educational needs of parents must not be overlooked. It has been reported that parents want to be taught how to administer intravenous treatment and how to prevent/treat injuries ^[43].

Adherence to treatment among adolescents can be suboptimal, for reasons such as low burden of symptoms, forgetfulness, and poor knowledge of the disorder, as well as challenges with self-infusing. Young adults may feel pressure to appear normal and may be in denial about their condition ^[3,44]. Intravenous prophylaxis may also present challenges in the younger population; the potential option for subcutaneous administration could reduce the treatment burden but may also decrease the ability to self-infuse due to lack of venepuncture training ^[45].

Paediatric patients are as likely as adults to benefit from a virtual MDT approach; however, the composition of an ideal MDT may differ from that of adults and care must be taken to ensure that both patients and their caregivers receive appropriate support and communication to facilitate suitable virtual care.

Transitioning adolescent patients to adult clinics without face-to-face consultation is challenging, partly due to difficulties in building relationships when interacting virtually. It is important to start the prolonged transition process of these patients early, avoiding uncertainty in which service is responsible for their care and allowing a gradual increase in independence as they leave the paediatric clinic. Transition clinics should be adapted to the needs of patients and their parents and enhanced psychological support may be needed during the adjustment period. Patients may benefit from a hybrid care approach. One advisor described an adult transition clinic at their centre which runs into the evening, thereby minimising the amount of school that teenagers are missing due to clinic appointments.

It is difficult to train patients/parents to administer prophylactic treatment and provide support/reassurance virtually, particularly for newly diagnosed patients. Virtual care has facilitated increased use of creative platforms (e.g., YouTube, Instagram, TikTok) to educate and communicate with younger patients. Interactive and digital materials may help increase engagement among patients and their parents, particularly for those with mild disease who do not require regular appointments. Some suggestions for materials included virtual clinic tours, online biographies about their care providers, and digital leaflets.

The MDT composition for paediatric care should be tailored to the specific needs of the age groups and their parents/caregivers. Creative virtual platforms and interactive materials may assist with engaging and educating this population, whilst also providing support to patients and their family support system.

Hybrid, integrated MDT care, delivered via specialist treatment centres, is likely to remain the gold standard for haemophilia care. Virtual MDT care was exciting, novel and a necessity at the start of the pandemic but now there is virtual fatigue and a need to increase the availability of face-to-face care. The method of care delivery should be individualised to the patient, based on their preference, patient-provider relationship, and disease severity. One advisor voiced that paediatric patients with mild haemophilia can be seen virtually, but it is still important to have face-to-face appointments at an appropriate interval; children with severe haemophilia should be seen face-to-face every six months. Another advisor described how their centre sees adult patients with severe haemophilia once in person each year for a full musculoskeletal and medical review, and once virtually each year, with high patient satisfaction. Some elements of haemophilia care, such as musculoskeletal and joint health assessments and laboratory monitoring, cannot be satisfied virtually. Face-to-face connections will remain valuable for conducting physical assessments, building strong relationships, and enabling HCPs to provide patients with reassurance, understanding and support. Hybrid care models with an adaptable mixture of face-to-face and virtual appointments will help provide flexible and individualised care in the rapidly evolving haemophilia landscape.