Identification of Digital Health Priorities for Palliative Care Research: Modified Delphi Study.

BACKGROUND: Developments in digital health have the potential to transform the delivery of health and social care to help citizens manage their health. Currently, there is a lack of consensus about digital health research priorities in palliative care and a lack of theories about how these technologies might improve care outcomes. Therefore, it is important for health care leaders to identify innovations to ensure that an increasingly frail population has appropriate access to palliative care services. Consequently, it is important to articulate research priorities as the first step in determining how finite resources should be allocated to a field saturated with rapidly developing innovation. OBJECTIVE: The aim of this study is to identify research priority areas for digital health in palliative care. METHODS: We selected digital health trends, most relevant to palliative care, from a list of emerging trends reported by a leading institute of quantitative futurists. We conducted 2 rounds of the Delphi questionnaire, followed by a consensus meeting and public engagement workshop to establish a final consensus on research priorities for digital technology in palliative care. We used the views of public representatives to gain their perspectives on the agreed priorities. RESULTS: A total of 103 experts (representing 11 countries) participated in the first Delphi round. Of the 103 experts, 55 (53.3%) participated in the second round. The final consensus meetings were attended by 10.7% (11/103) of the experts. We identified 16 priority areas, which involved many applications of technologies, including care for patients and caregivers, self-management and reporting of diseases, education and training, communication, care coordination, and research methodology. We summarized the priority areas into eight topics: big data, mobile devices, telehealth and telemedicine, virtual reality, artificial intelligence, smart home, biotechnology, and digital legacy. CONCLUSIONS: The priorities identified in this study represent a wide range of important emerging areas in the fields of digital health, personalized medicine, and data science. Human-centered design and robust governance systems should be considered in future research. It is important that the risks of using these technologies in palliative care are properly addressed to ensure that these tools are used meaningfully, wisely, and safely and do not cause unintentional harm.

Video hospice consultation in COVID-19: professional and patient evaluations.

BACKGROUND: Providing care for our patients during the COVID-19 pandemic required a rapid shift to video consultations (VCs). A service evaluation was performed to capture hospice professionals' (HPs) and patients' experiences of VC. METHODS: Online or postal surveys were sent to HPs and patients, who had participated in VC between March and July 2020, focusing on their experience and satisfaction with the service. RESULTS: 31 responses from HPs were received. 19 (61.3%) rated their experience of VC as good, despite 29 (93.5%) having no prior VC experience. One-third of HPs had undertaken potentially sensitive consultations, including resuscitation discussions. 23 (74.2%) undertook a VC that included a family member and 18 (58.1%) had included an external healthcare professional. 25 (80.6%) wanted to offer VC as an option going forward. Well-being staff successfully provided multiple group support sessions via video. 26 responses from patients (23) and carers (3) were received. 22 (84.6%) had access to a smartphone. 8 (30.8%) included a family member in their consultation. All patients/carers reported satisfaction with their VC, although 10 (38.5%) expressed a preference for face-to-face consultations. 22 (84.6%) patients would be happy to receive care via VC going forward and 21 (80.8%) stated they would recommend the use of VC to others. CONCLUSION: Patients reported VC to be an acceptable way to receive support from a hospice service and HPs would like to continue to offer VC in the future. VC can be offered as an alternative to face-to-face consultations with the potential to continue and improve access to a wide range of hospice services.

Virtual visits in palliative care: about time or against the grain?

While the additional value from adding the option of virtual visits is not in question, numerous issues are raised around how to decide between face-to-face and virtual visits in individual cases and how best to set up such provision within an organisation. With only limited palliative care-specific literature and no time to set up and evaluate pilots, we had to get on and set up a prototype 'virtual visits' model, retro-fitting guidance and a supporting ethical framework. We looked at the issues spanning clinical, ethical and logistics domains; identifying areas of benefit as well as drawbacks, some specific to the rushed implementation because of COVID-19's infective risks and the 'rules' of lockdown, but many are generic areas to help guide longer term service design. Unsurprisingly, it appears clear that a 'one-size-fits-all' mentality is a poor fit for the individualised needs of the heterogeneous palliative care population. Virtual visits have great potential even if they are not a panacea.

Rare genetic variants in Shiga toxin-associated haemolytic uraemic syndrome: genetic analysis prior to transplantation is essential.

We present a case of haemolytic uraemic syndrome (HUS) in a 16-year-old female with serological evidence of acute Escherichia coli O157:H7 infection. She progressed to established renal failure and received a deceased donor kidney transplant. Shiga toxin-associated HUS (STEC-HUS) does not recur following renal transplantation, but unexpectedly this patient did experience rapid and severe HUS recurrence. She responded to treatment with the terminal complement inhibitor eculizumab and subsequent genetic analysis revealed a rare variant in a complement gene. This highlights the importance of genetic analysis in patients with STEC-HUS prior to renal transplantation so that management can be individualized.