Authors: Dr Nicola Ayers Palliative Care Advisor, Federal Ministry of Health, Addis Ababa University, Ethiopia, Roma Maguire, Professor of Digital Health and Care, University of Strathclyde, Dr Yohans Wodaje, founder and CEO of ‘Hello Doctor’ and General Manager, Telemed Medical Services, Addis Ababa Ethiopia, Ephrem Abathun, Executive Director of Hospice Ethiopia, Dr Catherine Royce, Freelance Medical Advisor and previous volunteer surgeon at Arba Minch, Ethiopia and Dr Nicola Carey, Reader in Long Term Conditions, University of Surrey, UK.
‘It’s like having a doctor in my pocket’; this was the feedback from one of the patients at Hospice Ethiopia during user testing of the latest version ‘Ayzot’ a new mobile phone app for palliative care. The idea of using an app to support palliative care coverage in Ethiopia has been the vision of Dr Nicola Ayers, Dr Nicola Carey and Professor Roma Maguire for several years. After multiple meetings, developing ideas, gathering a team and securing funding, the ‘Ayzot’ app was developed during 2019-2020 and is the work of an international team from the University of Surrey, University of Strathclyde, Hello Doctor Ethiopia, Hospice Ethiopia and the Federal Ministry of Health.
Ethiopia has a population of over 114 million people, the majority of whom live in a rural setting; so, palliative care coverage is a real challenge. This situation is compounded by the current Covid-19 pandemic where access to palliative care services have been disrupted and access for home visiting has been restricted.
The Ayzot app (Ayzot is a common Ethiopian word which is used to encourage or soothe a person who has had a misfortune or who is sick) was developed using a co-design approach. From the very beginning, ideas and experiences were gathered from health care professionals, religious leaders, patients, family members, software/app developers and community members to inform the app content and structure. Working with Ethiopian based software developer Dr Yohans Wodaje, the app has been developed so it can be used by patients and family members to provide support with pain and symptom control and other related palliative care issues.
The app has undergone three rapid cycles of development and now comprises a self-assessment symptom management system that leads the patient or carer through common PC symptoms e.g., pain, nausea, drowsiness, breathlessness, tiredness, sadness, appetite and well-being. Patients/carers assess the severity of each symptom using a combination of Likert scales, emoji faces and the pain assessment scale. It contains both pharmacological and non-pharmacological medicines information and where appropriate, directs the patient/carer where to get help. Additional aspects of the app include advice on wound care, spiritual care and diet. A patient diary is included so users can record other symptoms they may experience with a free text area for notes/comments that can be shared with their palliative care nurse/doctor. Patients/carers can also track their symptom severity and app usage via a graph feature.
During the short period of beta user-testing, carers reported positive changes in how they treated their loved one’s wounds because of the advice found on the app with good results. Furthermore, carers shared how they accessed spiritual fathers to support their loved ones because of the advice found on the app. Health care professionals commented on how they felt the app could support them in delivering targeted care with the limited palliative care resources available. Patients reported feeling more reassured and supported with their pain and symptom control as they used the app.
Currently, the team are looking for further funding to perform a feasibility study and test the app in several rural areas of the country. It is hoped that the app will be embedded into national palliative care clinical provision to support palliative care professionals provide coverage in Ethiopia.