Working Groups

Patient-centric support management

The aim of this WG is to provide personalised coaching for the improvement of health-related quality of life (QoL) of patients with BTC. We will implement patients’ centric palliative care interventions and develop BTC-dedicated educational material that contributes to their psychological well-being and enables them to make decisions as part of the multidisciplinary team that is built around the patient.

Tasks & Activities

To conduct surveys of patients, caregivers, clinicians, and nurses to identify patients’ specific needs. Participants in the surveys will be recruited at Action events with participation of all the stakeholders.

To create educational material to cover the needs of patients with BTC; nutritional support, exercise, and management of symptoms and complications (sarcopenia, cachexia, etc).

To reduce disparities in palliative therapy by providing access in different languages to educational material (information sheets, infographics, videos).

To facilitate the access to support groups, in collaboration with patient associations and advanced practice nurses.

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