Integrated Short-term Palliative Rehabilitation to improve quality of life and equitable care access in incurable cancer (INSPIRE): a multinational European research project

Author:

Bayly Joanne1ORCID,Ahmedzai Hilde Hjelmeland2ORCID,Blandini Maria Grazia3,Bressi Barbara4,Caraceni Augusto Tommaso3,Carvalho Vasconcelos Joana56,Costi Stefania47ORCID,Fugazzaro Stefania4ORCID,Guberti Monica8ORCID,Guldin Mai-Britt9,Hauken May2ORCID,Higginson Irene5,Laird Barry J.A.10,Ling Julie11ORCID,Normand Charles5,Nottelmann Lise912ORCID,Oldervoll Line213ORCID,Payne Cathy11ORCID,Prevost A. Toby56,Stene Guro B.214,Vanzulli Elisa3,Veber Eduardo15,Economos Guillaume16,Maddocks Matthew5

Affiliation:

1. Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, 5 Bessemer Road, London SE59PJ, UK

2. Centre for Crisis Psychology, University of Bergen, Bergen, Norway

3. Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy

4. Physical Medicine and Rehabilitation Unit, Azienda USL – IRCCS di Reggio Emilia, Reggio Emilia, Italy

5. Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, London, UK

6. Nightingale-Saunders Clinical Trials and Epidemiology Unit, King’s College London, London, UK

7. Surgical, Medical and Dental Department of Morphological Sciences, University of Modena and Reggio Emilia, Reggio Emilia, Italy

8. Research and EBP Unit, Health Professions Department, Azienda USL – IRCCS di Reggio Emilia, Reggio Emilia, Italy

9. Research Unit for General Practice, Aarhus University, Aarhus, Denmark

10. Western General Hospital and Institute of Genetics and Cancer, University of Edinburgh, Edinburgh, UK

11. European Association for Palliative Care, Vilvoorde, Belgium

12. The Research Unit, Department of Palliative Medicine, Bispebjerg Hospital, København, Denmark

13. Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Trondheim, Norway

14. Department of Neuromedicine and Movement Science, Norwegian University of Science and Technology, Trondheim, Norway

15. European Cancer Patient Coalition, Brussels, Belgium

16. Centre Hospitalier Lyon-Sud, Palliative Care Centre, Pierre-Benite, France

Abstract

Background: Disability related to incurable cancer affects over a million Europeans each year and people with cancer rank loss of function among the most common unmet supportive care needs. Objectives: To test the clinical and cost-effectiveness of an integrated short-term palliative rehabilitation intervention, to optimise function and quality of life in people affected by incurable cancer. Design: This is a multinational, parallel group, randomised, controlled, assessor blind, superiority trial. Methods: The INSPIRE consortium brings together leaders in palliative care, oncology and rehabilitation from partner organisations across Europe, with complementary expertise in health service research, trials of complex interventions, mixed-method evaluations, statistics and economics. Partnership with leading European civil society organisations ensures citizen engagement and dissemination at the highest level. We will conduct a multinational randomised controlled trial across five European countries, recruiting participants to assess the effectiveness of palliative rehabilitation for people with incurable cancer on the primary outcome – quality of life – and secondary outcomes including disability, symptom burden and goal attainment. To support trial conduct and enhance analysis of trial data, we will also conduct: comparative analysis of current integration of rehabilitation across oncology and palliative care services; mixed-method evaluations of equity and inclusivity, processes and implementation for the intervention, at patient, health service and health system levels. Finally, we will conduct an evidence synthesis, incorporating INSPIRE findings, and a Delphi consensus to develop an international framework for palliative rehabilitation practice and policy, incorporating indicators, core interventions, outcomes and integration methods. Scientific contribution: If positive, the trial could produce a scalable and equitable intervention to improve function and quality of life in people with incurable cancer and reduce the burden of care for their families. It could also upskill the practitioners involved and motivate future research questions. The intervention could be adapted and integrated into different health systems using existing staff and services, with little or no additional cost.

Funder

H2020 Health

Innovate UK

Publisher

SAGE Publications

Subject

Advanced and Specialized Nursing

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