key: cord-0835310-89iafeyp authors: O’Donovan, Mairead; Buckley, Catherine; Benson, Julie; Roche, Sheila; McGowan, Mark; Parkinson, Laura; Byrne, Patricia; Rooney, Gloria; Bergin, Catherine; Walsh, Deirdre; Bird, Rachel; McGroarty, Feargal; Fogarty, Helen; Smyth, Elizabeth; Ahmed, Saad; O’Donnell, James S.; Ryan, Kevin; O'Mahony, Brian; Dougall, Alison; O’Connell, Niamh M. title: Telehealth for delivery of haemophilia comprehensive care during the COVID‐19 pandemic date: 2020-09-30 journal: Haemophilia DOI: 10.1111/hae.14156 sha: a85cfce8b0b0e747cd12dfbb2a4c27068e594262 doc_id: 835310 cord_uid: 89iafeyp INTRODUCTION: The COVID‐19 pandemic caused an unprecedented impact to haemophilia healthcare delivery. In particular, rapid implementation of telehealth solutions was required to ensure continued access to comprehensive care. AIMS: To explore patient and healthcare provider (HCP) experience of telehealth in a European Haemophilia Comprehensive Care Centre. METHOD: A systematic evaluation was performed to survey patient and HCP experience and compare clinical activity levels with telehealth to in‐person attendances. RESULTS: Public health measures implemented in March 2020 to reduce COVID‐19 spread resulted in a 63% decrease in medical/nursing clinic consultation activity compared to the same period in 2019. Implementation of digital care pathways resulted in marked increase in activity (52% greater than 2019). Importantly, enhanced patient engagement was noted, with a 60% reduction in non‐attendance rates. Survey of patients who had participated in medical/nursing teleconsultations demonstrated that teleconsultations improved access (79%), reduced inconvenience (82%), was easy to use (94%) and facilitated good communication with the HCP (97%). A survey exploring the telemedicine experience of HCPs, illustrated that HCPs were satisfied with teleconsultation and the majority (79%) would like to continue to offer teleconsultation as part of routine patient care. In addition to medical/nursing reviews, continued access to physiotherapy with virtual exercise classes for people with haemophilia and teleconsultation for acute dental issues was equally successful. CONCLUSION: During an unprecedented public health emergency, telehealth has enabled continued access to specialized haemophilia comprehensive care. Our novel findings show that this alternative is acceptable to both patients and HCPs and offers future novel opportunities. The COVID-19 pandemic has changed the way medicine is practised. In particular, haemophilia comprehensive care centres across the world have been forced to find innovative ways to provide healthcare access and high-quality specialized care to the bleeding disorder community despite current challenges. 1 Telemedicine (TM) (or telehealth), is defined by the National Institute of Health (NIH) as the use of technology to provide and support healthcare at a distance 2 (Figure 1 ). Traditional medicine has been slow to embrace telehealth as a routine tool in the delivery of healthcare, partly due to resistance to change and partly due to reported limitations of remote consultation. Barriers to the use of telehealth include concern regarding the patient-physician relationship, legal issues such as privacy and data concerns, as well as social issues such as variable digital access and familiarity with telecommunications technologies. In some jurisdictions reimbursement and cost are also a concern. 3 Prior to the COVID-19 pandemic, telehealth had been identified as having a potentially important role in the delivery of comprehensive care for people with haemophilia and inherited bleeding disorders, including virtual TM clinics, telephysical therapy and rehabilitation. 4 Critically, however, limited data have been collected regarding the use of TM in haemophilia comprehensive care. The role of TM in perioperative management and rehabilitation following orthopaedic surgery in a patient with severe haemophilia was recently reported. 5 TM can facilitate early and appropriate treatment in the setting of an acute bleed. Video consultations in children with haemophilia with acute complications 6 allowed care to be delivered more conveniently and did not adversely affect the quality of the patient-physician relationship. Substantial cost savings for patients with haemophilia and related bleeding disorders who attended clinics locally and received speciality care remotely using TM have been reported. 7 The Irish National Haemophilia Service has been an advocate for telehealth delivery of care to people with haemophilia. A National Electronic Health Record (EHR) for haemophilia and inherited bleeding disorders has been in place since 2006, and upgraded in 2019 to a fully cloud-based EHR. 8 Haemophilia treatments are also managed electronically using a track and trace solution and a scanning smartphone App, documenting supply and utilization. A bidirectional patient portal to enable direct access to patient healthcare information and to the Haemophilia Treatment Centre is being implemented currently. The COVID-19 pandemic resulted in an unprecedented upheaval to healthcare delivery requiring a rapid response to replace the traditional care model with innovative telehealth solutions to maintain access and services to a patient cohort with varied health needs. In this paper, we discuss the Irish patient and healthcare provider (HCP) experience of telehealth which was implemented rapidly to ensure continuity of specialist haemophilia comprehensive care during the COVID-19 pandemic. A multidisciplinary service evaluation was undertaken to survey patient and HCP experience of telehealth as implemented in a European Haemophilia Comprehensive Care Centre (EHCCC) and to compare telehealth clinical activity levels to in-person attendances during the same time period in 2019. All HCPs in the EHCCC, including physicians, nurses, physiotherapists, dentist, psychologist and social worker, adopted telehealth ( Figure 2 ), to ensure continued healthcare access for patients. Telephone consultations were carried out using a combination of speaker phones and headsets. Blue Eye (RedZinc Services Limited, Guinness Enterprise Centre, Taylor's Lane, Dublin 8, Ireland), a video communications system which connects patient's smartphone to the HCP on a web-based platform via a secure SMS or email link, was used for video consultations. Verbal consent was obtained from all patients prior to commencing teleconsultation. Subsequently, two patient surveys were carried out. Firstly, an anonymized, patient experience survey (5-point Likert scale) was posted to patients who had a medical telehealth consultation between 11th March and 30th April 2020. All patients who had a video consultation and a random sample (every third patient), who had a telephone consultation received a survey. The patients were new and return patients F I G U R E 1 Glossary of terms Use of technology to provide and support healthcare at a distance Telehealth Includes all aspects and systems involved in delivery of remote healthcare, though oŌen used interchangeably with telemedicine Video consultaƟon PaƟent assessment by a healthcare provider using the medium of video, parƟcipants are able to see each other on screen Telephone consultaƟon PaƟent assessment using the telephone TeleconsultaƟon R emote paƟent assessment by any mode of telecommunicaƟon and includes both video and telephone consultaƟon Clinic consultaƟon R ouƟne paƟent review in a clinic seƫng, can be face-to-face or virtual TeledenƟstry Use of telehealth systems in denƟstry Telepsychotherapy U se of telehealth systems in psychotherapy TelerehabilitaƟon U se of telehealth systems in rehabilitaƟon TeleeducaƟon Remote educaƟon by any mode of telecommunicaƟon Teletwinning CollaboraƟon between healthcare providers, as well as paƟents, in developing and developed countries using telecommunicaƟons Finally, data were collected directly from patients who contacted a dental helpline which was established to provide access to a teledentistry service operated by a consultant dental surgeon and dental nurse working remotely, for a 6-week period. Data collected included pain scores, validated short form oral health related quality of life tool, 9 bleeding phenotype with a provisional diagnosis and management plan. In In keeping with our clinical activity data we also observed a 60% reduction in non-attendance rates for clinic appointments after the introduction of teleconsultations, decreasing from 15% (March-May 2019) to 6% for the same time period in 2020 ( Figure 3B ). In total, 89 telephone or video consultations were conducted during a 6-week period for acute dental issues. Pain scores of ≥7 were recorded by 18 (20%) patients, with 10% reporting maximum scores. Dental problems impacted significantly on relationship, sleep, nutrition or mood for 26 (29%) people and pain relief prescription was required for 29 (33%) patients who were not managing their dental pain adequately. Teletutoring on self-placement of temporary fillings was provided for seven patients. Dental extractions with risk assessed management plans were arranged for 22 patients who had facial swelling due to dental abscess or severe toothache. Of the 22 dental extractions, 10 were carried out at the EHCCC dental clinic, following triage, for those patients with more severe bleeding phenotypes requiring factor replacement therapy in addition to dental-specific local measures. In contrast, 12 extractions were managed locally for people with milder bleeding disorders using a combination of antifibrinolytic and local haemostatic dental measures. Telementoring for patients and their dentist, to assure their confidence and competence, was a key feature to ensure safe outcomes. There was no oral bleeding reported during the 6 weeks of data collection. With An anonymous online survey was performed to explore the early TM experience of HCPs within the EHCCC, 84% (21/25) survey response rate. Respondents included 9 (43%) nurses, 8 (38%) physicians, 3 (14%) allied health professionals (AHP), and 1 (5%) dentist. All those who responded had engaged with teleconsultation, 14 (67%) with telephone consultation and 7 (33%) with both video and telephone consultation. The majority of HCPs were confident using teleconsultation, with 19/21 (90%) reporting confidence with telephone consultation and 6/7 (86%) with video consultations ( Figure 6A ). Duration of teleconsultations was also a concern with 12/21 (57%) reporting telephone consultations and 3/7 (43%) reporting video consultations take longer than face-to-face consultations ( Figure 6B ). Interestingly 8 (38%) HCPs did not find that teleconsultations took longer than in-person consultations. Individual psychotherapy sessions were carried out by the Clinical Psychologist during this time period using telehealth consultation, including 18 telephone consultations and 12 video consultations. Video consultation performed better than expected for psychotherapy and manualized cognitive behavioural therapy interventions for pain also worked well through this medium. Inpatients referred for Social Work consultations were reviewed by phone during the pandemic, and the social worker reported that face-to-face contact was more beneficial for establishing rapport and conducting a comprehensive assessment than teleconsultation. Video-based teleconferencing has been used successfully for weekly multidisciplinary team meetings since the onset of COVID- Video consultaƟon takes longer than telephone consultaƟon (n = 7) Telephone consultaƟon takes longer than video consultaƟon (n = 7) Video consultaƟon takes longer than face to face consultaƟon (n = 7) Telephone consultaƟon takes longer than face to face consultaƟon (n = 21) Remote consultaƟon does not take longer than a face to face consultaƟon (n = 21) % posiƟve response monthly webinar series, building on the existing relationships and work programme. 10 There is evidence from studies, including randomized controlled trials, in other chronic disease settings that telehealth services can deliver safe and effective outcomes for patients. [11] [12] [13] Collectively, our data suggest that telehealth may not replace traditional physician-patient interactions in all circumstances, but has the potential to augment face-to-face model of care. A pathway to arrange face-to-face consultation, if required, addresses HCP concerns regarding the inability to conduct a physical exam or take a blood test. Access to dental care during the pandemic has been severely impacted as patients are unable to wear masks during assessments and aerosol generating procedures are common. Teledentistry, including intra-oral photographs using a mobile phone, enabled urgent dental problems to be identified and addressed using a patient-centred approach. Telementoring of dentists unfamiliar with haemophilia dental protocols alongside multidisciplinary online meetings enabled safe care using optimal clotting factor replacement regimes. Teledentistry has the possibility to improve access for this population after the pandemic has ceased. Telehealth physiotherapy sessions were feasible and well-received whether for acute assessment or for innovative strategies such as a teleexercise classes for people with haemophilia. This initiative is especially important as high rates of physical inactivity, overweight/obesity, increased waist-hip ratio and netting. HCP will require support for the technical, professional and organizational changes required to underpin this significant change in practice. 16 Limitations of this study include an expected limited response to the patient postal survey response (36% and 29%) raising the possibility that there are uncaptured views amongst non-responders. Those who responded may have been influenced by the public health crisis to answer positively and responses might be different in the absence of public health restrictions. The strength of the study is that it represents a national service and a typical EHCCC in Western Europe. There is a need for ongoing assessment of patient experience and other outcomes of TM in haemophilia care. In conclusion, current optimal treatment for haemophilia needs to be personalized taking into account patient preferences, bleeding phenotype, joint status and activities. 17 The implementation of telehealth in the COVID-19 pandemic has also heralded a new service delivery paradigm -the personalization of delivery of haemophilia comprehensive care through a blended model of face-to-face and TM. This hybrid model enables individualized care which is flexible and adaptable and recognizes the variability of personal circumstances. The application of a TM care model for people with bleeding disorders was rapidly implemented in response to a particular public health emergency but the benefits demonstrated for patient experience and choice, mean that TM should be maintained into the future. The authors thank all members of the multidisciplinary team and patients of the National Coagulation Centre, Dublin who contributed data for this study. We would also like to acknowledge the collaboration with the Irish Haemophilia Society who advertized the telehealth service to their members. 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