Telepalliation – A way of increasing a feeling of coherence in the care of patients with terminal illness across sectors

Background: An estimated 20 million people are in need of palliative care worldwide, each year. The majority of these are suffering from cancer, followed by cardiovascular disease and chronical obstructive pulmonary disease. A web-based Telepalliation program and digital platform was developed (offering video calls, treatment planning, patient related outcome reporting, chat function and information on palliative subjects), through a participatory design process involving patients and their relatives, health care professionals and researchers.Objective: The aim of the study is to explore the experiences of patients in palliative care participating in the TelePal ProgramMethods: The overall method of the study is the case study method. The theoretical framework is Antonovsky “sense of coherence” theory. In this sub-study semi-structured qualitative interviews were carried out with 6 men (ages 55-82) and 4 women (46-76). All ten patients were diagnosed with cancer. The interviews were recorded and analyzed inspired by Brinkman and Kvale using Nivivo 12.0.Results: Patients participating in the Telepalliation program articulated their experiences in terms of the following themes: The TelePal platform a) facilitates better communication with patients and healthcare professionals across sectors b) makes illness and symptoms easier to understand c) creates a sense of security d) gives a sense of coherence in caring across sectors e) increased freedom. Only few patients found it overwhelming to participate in the study.Conclusions: Preliminary findings indicate that patients participating in a Telepalliation program experience a sense coherence in their care process and integrated care across sectors for the individual patients. They also feel a sense of security and freedom. Further research is needed on exploring benefits and drawbacks of the Telepalliation platform and program

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

BackgroundThe World Health Organization defines end-of-life palliative care 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.” Over 20 million people worldwide are in need of palliative care. In Denmark, palliative care is given at a general and a specialist level. The general level comprises health care professionals (HCPs) who do not perform palliative care full-time. The specialist level comprises specialized palliative care (SPC), where HCPs perform palliative care full-time. In total, 20%-30% of patients who need palliative care are referred to SPC. Challenges with SPC include a short time span from referral to end of life, patients who are very ill and may therefore find it hard to travel to an outpatient clinic, and the SPC unit having a relatively small staff. The need for SPC is expected to rise, as the number of patients dying from terminal diseases is increasing. Telehealth has been successfully implemented in different home care settings, including palliative care. ObjectiveThe aim of the study is to present the research design of the clinical testing of a telepalliation program by the use of a digital platform for patients in palliative care and their relatives. MethodsThe telepalliation program will be conducted as a multimethod randomized controlled trial. 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. Secondary outcomes include enhanced sense of security; reduced experience of pain; satisfactory experiences of patients and relatives with the TelePal platform and degree of satisfaction in being a part of the program; experiences with the use of the TelePal platform on the part of HCPs and the professionals’ experiences of being a part of the program; the use of a cross-sector communication platform and the telepalliation program by patients, relatives, and HCPs; and the projected lower cost of health care services. These outcomes will be assessed using questionnaires, data generated by digital technologies, and semistructured interviews. ResultsThe collection of data began in May 2021 and will be completed in August 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. ConclusionsThe 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 on future telepalliation for those patients who are referred to a palliative team. Trial RegistrationClinicalTrials.gov NCT04995848; https://clinicaltrials.gov/study/NCT04995848 International Registered Report Identifier (IRRID)DERR1-10.2196/4994