Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial.


Journal

BMC palliative care
ISSN: 1472-684X
Titre abrégé: BMC Palliat Care
Pays: England
ID NLM: 101088685

Informations de publication

Date de publication:
28 Dec 2021
Historique:
received: 21 12 2020
accepted: 10 12 2021
entrez: 29 12 2021
pubmed: 30 12 2021
medline: 31 12 2021
Statut: epublish

Résumé

Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers' quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads' emotional functioning and self-efficacy. We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 . 20211209_DIAdIC_Protocol_Article.

Sections du résumé

BACKGROUND BACKGROUND
Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers' quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads' emotional functioning and self-efficacy.
METHODS METHODS
We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver.
DISCUSSION CONCLUSIONS
DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare.
TRIAL REGISTRATION BACKGROUND
Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 .
DATE AND VERSION IDENTIFIER UNASSIGNED
20211209_DIAdIC_Protocol_Article.

Identifiants

pubmed: 34963453
doi: 10.1186/s12904-021-00895-z
pii: 10.1186/s12904-021-00895-z
pmc: PMC8713043
doi:

Banques de données

ClinicalTrials.gov
['NCT04626349']

Types de publication

Clinical Trial Protocol Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

193

Subventions

Organisme : Horizon 2020
ID : 825722

Informations de copyright

© 2021. The Author(s).

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Auteurs

Orphé Matthys (O)

End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium. orphe.matthys@ugent.be.

Aline De Vleminck (A)

End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium.

Sigrid Dierickx (S)

End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium.

Luc Deliens (L)

End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium.

Vincent Van Goethem (V)

End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium.

Lore Lapeire (L)

Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium.

Mogens Groenvold (M)

Department of Public Health, University of Copenhagen and Palliative Care Research Unit, Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark.

Line Lund (L)

Department of Public Health, University of Copenhagen and Palliative Care Research Unit, Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark.

Caroline Moeller Arnfeldt (CM)

Department of Public Health, University of Copenhagen and Palliative Care Research Unit, Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark.

Lisa Sengeloev (L)

Department of Oncology, Herlev Gentofte University Hospital, Herlev, Denmark.

Helle Pappot (H)

Department of Oncology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark.

Anna Thit Johnsen (AT)

University of Southern Denmark, Odense, Denmark.

Suzanne Guerin (S)

UCD School of Psychology, University College Dublin, Belfield, Ireland.

Philip J Larkin (PJ)

Palliative and Supportive Care Service, Chair of Palliative Care Nursing, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.

Catherine Jordan (C)

UCD School of Psychology, University College Dublin, Belfield, Ireland.

Michael Connolly (M)

School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland.

Paul D'Alton (P)

UCD School of Psychology, University College Dublin, Belfield, Ireland.

Massimo Costantini (M)

Scientific Directorate, Azienda USL-IRCCS di Reggio Emilia, Reggio Emilia, Italy.

Silvia Di Leo (S)

Psycho-oncology Unit, Azienda USL - IRCCS di Reggio Emilia, Reggio Emilia, Italy.

Monica Guberti (M)

Nursing & Health Care Professions Directorate, Azienda USL-IRCCS, Reggio Emilia, Italy.

Elena Turola (E)

Scientific Directorate, Azienda USL-IRCCS di Reggio Emilia, Reggio Emilia, Italy.

Agnes van der Heide (A)

Deparmtent of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, the Netherlands.

Erika Witkamp (E)

Deparmtent of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, the Netherlands.

Judith Rietjens (J)

Deparmtent of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, the Netherlands.

Maaike van der Wel (M)

Deparmtent of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, the Netherlands.

Kevin Brazil (K)

School of Nursing and Midwifery, Queen's University of Belfast, 97 Lisburn Road, Belfast, Northern Ireland, BT9 7BL, UK.

Gillian Prue (G)

School of Nursing and Midwifery, Queen's University of Belfast, 97 Lisburn Road, Belfast, Northern Ireland, BT9 7BL, UK.

Joanne Reid (J)

School of Nursing and Midwifery, Queen's University of Belfast, 97 Lisburn Road, Belfast, Northern Ireland, BT9 7BL, UK.

David Scott (D)

School of Nursing and Midwifery, Queen's University of Belfast, 97 Lisburn Road, Belfast, Northern Ireland, BT9 7BL, UK.

Katherine Bristowe (K)

King's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, London, UK.

Richard Harding (R)

King's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, London, UK.

Charles Normand (C)

Centre for Health Policy and Management, Trinity College Dublin, Dublin, Ireland.
Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, London, UK.

Peter May (P)

Centre for Health Policy and Management, Trinity College Dublin, Dublin, Ireland.
The Irish Longitudinal Study on Ageing, Dublin, Ireland.

Catherine Cronin (C)

Centre for Health Policy and Management, Trinity College Dublin, Dublin, Ireland.

Laurel Northouse (L)

School of Nursing, University of Michigan, Ann Arbor, MI, USA.

Peter Hudson (P)

Centre for Palliative Care, St Vincent's Hospital, Melbourne, Australia.
Vrije University Brussels (VUB), Brussels, Belgium.

Joachim Cohen (J)

End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium.

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