At the end of last year, the article describing the development process of the FOCUS+ program was published in the medical scientific journal Support Care in Cancer. The article presents the systematic translation and adaptation of the FOCUS program, a USA-based supportive intervention for persons with cancer and their family caregivers, for use in six European countries.

In summary, the main message of the article is that using Participatory and Iterative Process Framework for Language Adaptation (PIPFLA) methodology is an efficient framework to thoroughly adapt a complex psychoeducational USA-based program for use in six European countries, i.e. Belgium, Denmark, Ireland, Italy, the Netherlands, and the UK. The main purpose of this program is to support the dyads of patients with cancer and their family caregivers. The results have been achieved in collaboration with end users (e.g., nurses, patients, family caregivers) and researchers from all six countries reviewed program materials and advised on adaptations.

A participatory scientific approach was used to guide the translation to the local European contexts. The PIPFLA process resulted in one European version of the program in different languages (FOCUS+). The program and conversation manual are uniform across all countries. The main adaptations to the original FOCUS program included additional attention to needs; more emphasis on self-management, advance care planning, and shared responsibilities; outlook rather than optimism; educational role rather than therapeutic.

You can read more about it here.

As we all know, the COVID-19 pandemic has created unforeseen challenges and disruptions, which have significantly impacted people’s lives, all working processes and, in particular, DIAdIC project’s progress. This is why, together with the European Commission, we have decided to extend the duration of the project, providing the consortium with additional time to complete the project successfully and disseminate its results. Now the DIAdIC project will end on June 30, 2024.

This past month was a whirlwind of passion for advancing cancer care and palliative care at the highly anticipated European Association for Palliative Care 18th World Congress (15th-17th June) and the esteemed European Cancer Patient Coalition Annual Congress (23rd-24th June). We are thrilled to share the highlights from both events.

During the EAPC 18th World Congress, where groundbreaking insights in palliative care were shared, our project was presented by Professor Cohen, captivating attendees’ attention. Furthermore, during the engaging #BreakfastWith sessions, meaningful dialogue and knowledge exchange took place. It was truly informative and enlightening, filled with valuable perspectives.

At the European Cancer Patient Coalition Annual Congress our project was presented by the ECPC group, giving us a remarkable platform to showcase our groundbreaking research. We emphasized the importance of patient centered care in cancer research and improving outcomes for all.

The support and engagement from attendees at both congresses reaffirmed our belief in creating meaningful change together. It’s through collaboration, knowledge sharing, and collective efforts that we can make a significant impact on the lives of those affected by cancer and in the field of palliative care.

We express our sincere gratitude to ECPC team for their valuable partnership and to the organizers and participants of the #EAPC2023 for providing us with an exceptional opportunity to share our vision. Let’s continue working hand in hand, breaking barriers, and pushing boundaries in cancer research and palliative care.

Together, we have the power to make a lasting difference.

We had a chance to interview professor Peter Hudson and have a brief talk about the intervention study he is leading called “Improving the wellbeing of people with advanced cancer and their family carers: Research protocol for an effectiveness-implementation trial of a dyadic digital health intervention (FOCUSau)” . The project will run until 2026 and is financed by a National Health and Medical Research (NHMRC) grant.

1. What is the objective of your prepared intervention study?

The aim of the study is to determine the effectiveness and sustainability of a digital health intervention (FOCUSau) aimed at improving the wellbeing of patients with advanced cancer and their primary family carer.

The current project will determine the following aspects:

1. Changes in cancer patients and their primary family carers’ emotional wellbeing and self-efficacy (primary outcomes), QoL, appraisal of illness, communication and coping (secondary outcomes), through a RCT comparing FOCUSau with usual care (control group).

2. The effect of FOCUSau on the type and costs of health services use, through comparative analysis of data sets showing use by participants in the intervention group and the control group.

3. The potential for sustainability of FOCUSau as a service, using integrated implementation science and digital health evaluation methods to gauge acceptability, feasibility and scalability.

2. Could you briefly explain the main connection between Diadic iFOCUS and your current study?

Professor Cohen and Professor Hudson (Melbourne, Australia) led the work leading up to the Diadic EU grant application and from the outset had hoped that an opportunity might arise to conduct a similar study in Australia.

3. What are similarities and what are differences from scientific and practical perspectives?

We will only test the web-based version of Focus (iFOCUS) not the in-person version (FOCUS+) and our design is a Pragmatic Phase III hybrid effectiveness-implementation trial hence we will concurrently test the effectiveness of the intervention as well as its potential sustainability.

4. Could you please state the main challenges and your expectations from the study?

We are in the process of adapting iFOCUS to for the Australian context to create FOCUSau for subsequent testing in the trial. The main challenges thus far have mostly been administrative for example obtaining contractual agreements and also facilitation of transferring & housing of the FOCUS software within Australia.

We are very pleased to have had the opportunity to once again discuss the progress of the project and its goals.  A few months ago, April 26 – 28 (Wednesday – Friday), the consortium meeting took place in Reggio Emilia, Italy.

The meeting was conducted in a hybrid format, but more than 30 people from the whole consortium were present in person (which is great in the post-Covid era).

The main objectives of the meeting were trial updates, i.e. to exchange information on current progress and data, and to discuss important medium-term plans. As a result, the implementation and completion of the trial phase is expected in October-November of this year.

Practical experience and lessons learned have been given considerable space. Colleagues from the United States, the European Union, and the United Kingdom shared their insights. Specific practices and research methods (mixed methods) used to conduct research were also discussed.

An important part of the programme included workshops on topics yet to be implemented, such as workshops on process and implementation evaluation and economic evaluation.

In addition, the virtual conference and especially the final conference provided a forum for discussion in order to present the results of the project to all relevant stakeholders (policymakers, practitioners, patients, caregivers, etc.). These topics will be further discussed in the next session.

In terms of coordination, the important dates and steps that need to be taken were discussed, these are necessary for the successful implementation of the project.

Dyadic Psychoeducational Interventions for people with Advanced cancer and their Informal Caregivers (DIAdIC) is a transdisciplinary, cross-national research project. It aims to evaluate psycho-educational dyadic interventions, i.e. interventions that target the patient and family caregiver together. One intervention is a web-based e-health intervention, one is nurse-led face-to-face intervention.