Telepalliation – A Digital Platform for Patients in Palliation and Their Relatives: Protocol for a Randomized Controlled Trial (Preprint)

Abstract

The World Health Organization defines end of life Palliative Care (PC) as ‘prevention and relief of suffering, by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’. More than 20 million people worldwide are estimated of being in need of palliative care. In Denmark, as in most other Western countries, PC is given at two different levels, basic and advanced. The basic level comprises health care professionals (HCPs), such as general practitioners (GPs) and primary care nurses, who do not perform palliative care on a full-time basis. The advanced level comprises specialized palliative care (SPC) where HCPs perform palliative care on a full-time basis at a specialist level. 20-30% of patients in need of PC are referred to SPC. There are several challenges connected with SPC, such as the very short time span from referral to the end of the patient’s life, the fact that patients are very ill and may therefore find it hard to travel to an outpatient clinic, and that the SPC unit has a relatively small staff. The need for SPC is expected to rise in the future, as the number of patients dying from life-threatening diseases, including cancer, is increasing. As an increasing number of these patients prefer to be cared for at home, the demand for SPC is expected to increase. The use of telehealth has been introduced in different settings and at different levels of home care and has also been used with success in palliative care. Demand for telehealth solutions has also increased due to the Covid-19 pandemic.

This paper aims to describe the clinical test of a Telepalliation program, a digital platform for patients in palliation and their relatives. The paper describes the research design, outcome measures and techniques used for data collection.

The Telepalliation program will be conducted as a randomized controlled study. The intervention group will follow the Telepalliation program, while the control group will follow the traditional standard of care program for palliative care. The primary outcome of the study is increased quality of life, measured by EORTC QLQ-C15-PAL. Secondary outcomes include the enhanced sense of security; reduced experience of pain; satisfactory experiences of both patients and relatives on the use of TelePal.dk platform and degree of satisfaction in being a part of a Telepalliation program; experiences with the actual use of the TelePal.dk platform from healthcare professionals and the professionals’ experiences of being a part of a telepalliation program; the usability of a cross-sector communication platform and telepalliation program by patients, relatives, and health care professionals; and the projected lower cost of healthcare services, in terms of quantity of phone/video calls, equipment, etc. These outcomes will be assessed using questionnaires, through data generated by digital technologies and through semi-structured interviews.

Collection of data began in May 2021 and will be completed in June 2024. The results of the study will be published in peer-reviewed journals and presented at international conferences. Results from the Telepalliation program are expected to be published by fall 2024.

The expected outcomes of the study are increased quality of life and increased sense of security. We also expect that the study will have a clinical impact for future telepalliative care for those patients who are referred to a Palliative Team.

NCT04995848 and N-202000094