New research has highlighted a stark evidence gap for the impact of digital tools on the quality of life of children receiving palliative care.

A review of current data identified just three studies that have evaluated how digital health technologies could benefit the mental wellbeing of young people undergoing care for a life-limiting illness and their families. All three studies focused on remote care, known as telehealth.

“We see this as a huge opportunity as it opens up many avenues for further research and impact." Ivor Williams Institute of Global Health Innovation

This is despite the increasing availability and use of a broad range of digital tools in paediatric palliative care and healthcare more widely, from mobile phone apps to virtual reality.

Two of the studies reported psychological and social benefits, improving peace of mind and family empowerment. Yet due to the small sample sizes involved the potential positive impact of these tools on the quality of life of paediatric patients and their families remains unknown, the authors from the Institute of Global Health Innovation conclude.

Ivor Williams, study author and Senior Design Associate at the Institute of Global Health Innovation, said: “The past decade has seen an explosion of digital healthcare products and services and there is growing evidence of their benefits. But as our research has demonstrated, our understanding of how these tools may support or improve the psychological wellbeing of young people receiving palliative care is extremely limited.

“We see this as a huge opportunity as it opens up many avenues for further research and impact in this important but neglected area.”

The researchers identified a comparatively large number of abstracts from conferences (28) that had not translated into peer-reviewed papers, which other experts not involved in this study have suggested could be due to the topic not being considered a priority.

"It is the duty of designers, healthcare professionals and researchers to work together to ensure that new interventions have been adequately tested." Dr Stephanie Archer Institute of Global Health Innovation

Alongside the need to address this knowledge gap, the researchers call on decision-makers to consider whether impact on quality of life should be included when new digital health tools are evaluated for effectiveness, a step necessary to meet certain regulatory standards.

Dr Stephanie Archer, study author and Honorary Research Fellow at the Institute of Global Health Innovation, said: “It is concerning that few research papers explore the impact of digital health interventions on psychological health.

“In order to provide safe and effective care for this group of patients and their families, it is the duty of designers, healthcare professionals and researchers to work together to ensure that new interventions have been adequately tested and are suitable for use.”

The research, published in the journal Palliative Medicine, is part of a wider programme of end-of-life care work at the Institute. Alongside building evidence to shape policy, the programme is designing and developing evidence-based technologies that could improve end-of-life and palliative care. One such tool is Chiara, an intelligent chatbot that can help families at home to care for their child by helping them to find appropriate and actionable information and support.

Find out more about IGHI’s end-of-life care research here.