open access publication

Article, 2024

A Digital Platform (Telepalliation) for Patients in Palliative Care and Their Relatives: Protocol for a Multimethod Randomized Controlled Trial

JMIR Research Protocols, ISSN 1929-0748, Volume 13, Page e49946, 10.2196/49946

Contributors

Sigaard, Jarl Voss Andersen 0000-0003-2417-8113 (Corresponding author) [1] [2] Henneberg, Nanna Celina 0000-0001-9408-2833 [1] Schacksen, Cathrine Skov 0000-0003-0815-2909 [1] Kronborg, Sissel Højsted 0009-0001-3722-9234 [1] Petrini, Laura 0000-0002-5320-1944 [1] Kidholm, Kristian 0000-0003-1037-6514 [2] [3] Birgisdóttir, Una Rósa [1] Spindler, Helle 0000-0002-7098-5699 [4] Dinesen, Birthe Irene 0000-0001-5893-9676 [1]

Affiliations

  1. [1] Aalborg University
    2. [NORA names: AAU Aalborg University; University; Denmark; Europe, EU; Nordic; OECD];
  2. [2] Odense University Hospital
    3. [NORA names: Region of Southern Denmark; Hospital; Denmark; Europe, EU; Nordic; OECD];
  3. [3] University of Southern Denmark
    4. [NORA names: SDU University of Southern Denmark; University; Denmark; Europe, EU; Nordic; OECD];
  4. [4] Aarhus University
    5. [NORA names: AU Aarhus University; University; Denmark; Europe, EU; Nordic; OECD]

Abstract

BACKGROUND: The 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. OBJECTIVE: The 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. METHODS: The 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. RESULTS: The 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. CONCLUSIONS: 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 on future telepalliation for those patients who are referred to a palliative team. TRIAL REGISTRATION: ClinicalTrials.gov NCT04995848; https://clinicaltrials.gov/study/NCT04995848. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/49946.

Keywords

DERR1, Denmark, INTERNATIONAL REGISTERED REPORT IDENTIFIER, International, International Conference, Secondary outcomes, Telep, assessment, care, care full-time, care professionals, care program, care services, care settings, challenges, clinic, clinical impact, clinical testing, collection, collection of data, communication platform, conference, control, control group, controlled trials, cost, cost of health care services, data, degree, degree of satisfaction, design, digital platforms, digital technologies, disease, early identification, end-of-life palliative care, enhanced sense, enhanced sense of security, experiences of patients, experiments, fall, full-time, group, health, health care professionals, health care services, home, home care setting, identification, identifiers, impact, increase quality, increased quality of life, increased sense, increased sense of security, intervention, intervention group, interviews, journals, levels, life, multimethod, outcomes, outpatient clinic, pain, palliation, palliative care, palliative team, patients, peer-reviewed journals, people, platform, prevention, problem, professional experience, professionals, program, protocol, quality of life, questionnaire, randomized controlled trials, reduced experience, referral, relations, relief, relief of suffering, research, research design, results, satisfaction, security, semistructured interviews, sense of security, services, sets, short time span, span, specialist level, specialized palliative care, specialized palliative care units, staff, standards, study, suffering, team, technology, telehealth, terminal disease, test, time span, traditional standards, treatment, treatment of pain, trials, units, world

Funders

  • Danish Cancer Society

Data Provider: Digital Science

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