A palliative care intervention for people with advanced chronic obstructive pulmonary disease (COPD) : Cultural adaptation and standardisation from the UK to other European contexts

Karadag, Didar and Walshe, Catherine and Marsden, Paul and Scherrens, Anne-Lore and Wichmann, Anne and Joseph Stevens, Julie and Koen, Pardon and Fulop, Balasz and Hammer, Nanna M. and Hernández-Marrero, Pablo and Preston, Nancy and EU PAL-COPD Consortium, on behalf of the (2025) A palliative care intervention for people with advanced chronic obstructive pulmonary disease (COPD) : Cultural adaptation and standardisation from the UK to other European contexts. Palliative Medicine, 39 (Suppl.). ISSN 0269-2163

Abstract

Background: Patients with advanced COPD have minimal access to palliative care. The ICLEAR model, a hospital-based palliative care intervention developed in the UK, aims to improve patient care and quality of life and reduce unwanted hospitalisations by helping clinicians adopt a palliative approach and shared care planning. The model required adaptation to use within six European healthcare settings (UK, Netherlands, Belgium, Hungary, Denmark, Portugal) prior to trial. Aim/Research question or hypothesis: To describe the adaptation process of a UK-based palliative care intervention for people with advanced COPD to enable implementation in the context of a trial in six European countries. Methods: A participatory consultation approach was used across six European countries. A draft intervention manual, based on pilot work and empirical evidence, was culturally adapted in two stages. Stage1 involved a series of consultation meetings with clinicians, patients and family carers in six countries leading to proposed adaptations. In stage 2, an international oversight group of researchers evaluated proposed adaptations for cultural relevance and international fidelity. The manual was revised based on their feedback. Results: In stage 1, 54 participants attended the consultation meetings in all countries (N=32 clinicians, N=10 patients and carers, N=12 facilitators) and 41 participants attended the second consultation meetings (N=20 clinicians, N=9 patients and carers, N=12 facilitators). The proposed adaptations were evaluated using the Model for Adaptation Design and Impact (MADI) framework to identify the core components of the intervention (such as the necessity of reviewing ongoing needs of the patients) while highlighting the elements that require flexibility (such as the terminology to use when introducing the intervention to patients) to increase the fit and acceptability of the intervention across different European countries. Discussion: This two-stage collaborative adaptation process provides a practical example for adapting interventions across diverse settings, illustrating how to balance core intervention components with contextual flexibility to enhance fit and acceptability.