EU PAL-COPD Behind the Scenes: Testing Together — Strengthening the ICLEAR Intervention Across Europe

Chronic Obstructive Pulmonary Disease (COPD) is a progressive illness often marked by breathlessness, persistent coughing, fatigue, depression, and anxiety [1]. Research has shown that palliative care can provide valuable physical, psychosocial, and existential support for people with advanced COPD. However, in practice, it is still often introduced only at the very end of life for people with COPD [2].

The aim of the EU PAL-COPD project is to improve the quality and timing of palliative care for people living with advanced COPD. To do this, we are introducing the ICLEAR intervention—an interdisciplinary, non-pharmacological service model developed in the United Kingdom. There are indications that this intervention may be beneficial for patients, reflected by reduced hospitalisations. Moreover, it brought together patients, family caregivers, and healthcare professionals to prepare a patient-centred care strategy for the future. We will implement the first large-scale, international clinical trial of ICLEAR, taking place in 18 hospitals across six countries (Belgium, Denmark, Hungary, Portugal, The Netherlands, and United Kingdom). To do so, the original intervention was adapted to European healthcare systems by ensuring the intervention and the accompanying materials were culturally relevant, readable, comprehensible, and useful. Subsequently, a small-scale testing of the adapted intervention and materials was done in one additional hospital in the five participating EU-countries. The feasibility, adherence, and acceptability of the ICLEAR-EU intervention were evaluated through feedback from local patients, their family caregivers, and healthcare professionals.

The University of Copenhagen and Ghent University jointly prepared and delivered training sessions on data-analysis to researchers of all involved countries, ensuring consistency across borders. Each country’s progress was regularly documented in a shared Excel file, and insights gathered from each hospital were discussed during online meetings with researchers from all six countries. These discussions helped identify local barriers and facilitators, and formed the basis for refining the intervention and materials. Lancaster University then took on the task of fine-tuning the ICLEAR-EU materials, integrating feedback from all other five countries to prepare for the upcoming large-scale trial. This small-scale testing phase not only helped us improve the intervention—it also strengthened collaboration, enhanced coordination, and brought our international team closer together. Additionally, it was an opportunity for doctoral researchers, post-doctoral researchers, principal investigators, and clinicians to join forces. As we move toward the large-scale trial, we do so with confidence in both our intervention and our partnership.

References

[1] Maddocks M, Lovell N, Booth S, Man WD c, Higginson IJ. Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease. The Lancet [Internet]. 2017 Sep 1;390(10098):988–1002. Available from: https://doi.org/10.1016/s0140-6736(17)32127-x

[2] Iyer et al., 2021: Iyer AS, Sullivan DR, Lindell KO, Reinke LF. The role of palliative care in COPD. CHEST Journal [Internet]. 2021 Nov 3;161(5):1250–62. Available from: https://doi.org/10.1016/j.chest.2021.10.032

 

This article was prepared by the partners from UGENT, ULANC and UCPH.