Learning Workstream – Uncertainty from a patient perspective

All patients suffering with any type of illness must cope with a degree of uncertainty. Dealing with the uncertainty associated with transplantation has recently been identified as a key priority for those awaiting a transplant, those who have received a transplant and for transplant professionals.

Uncertainty can lead to problems with adaptation, and if left neglected or unmanaged may lead to psychological issues, such as stress, anxiety and depression. There is evidence that uncertainty varies over time; such as when there is a change in treatment or symptoms, when waiting for a transplant and when complications occur. The way that uncertainty is experienced by different groups of patients is also likely to vary with the duration of illness and the type of organ being transplanted.

Uncertainty is also likely to differ between those waiting for a transplant and those who have received one. Before a transplant there is uncertainty about how the disease may progress, how long the wait will be before the transplant takes place and how to cope with the ongoing demands of treatment. After a transplant the focus shifts to the newly transplanted organ and whether complications, such as rejection, will occur and how long the organ will last.

Uncertainty in the pre-transplant period, fear of graft rejection and uncertainties related to the donor will be discussed in the activities planned within this workstream.

Preliminary Activities (all webinars are free of charge):

SURVEY ON THE MAIN CONCERNS OF TRANSPLANT PATIENTS IN EVERYDAY LIFE:
This survey was jointly developed by ETAHP, ELPAT and EDTCO and launched in April 2020 with the aim of establishing a solid platform and fruitful interaction with the European Transplant Patient Organizations (ETPO). The programme of the learning workstream “Uncertainty from a patient perspective” was developed on the basis of the survey results.

TLJ 2.0 PREPARATORY WEBINAR SERIES: LEARNING WS (1) – Coping with uncertainty during the COVID-19 pandemic (27 April, 2020)

Click here to view the webinar recording, the Q&A sessions, and the webinar report

TLJ 2.0 PREPARATORY WEBINAR SERIES: Learning WS (1) – How long will I wait? Understanding uncertainty on the waiting list (18:00-19:00, 29 October, 2020)

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TLJ 2.0 PREPARATORY WEBINAR SERIES: Learning WS (2) – Uncertainty in offering and accepting an organ – sharing a decision (18:00-19:00, 5 November, 2020)

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Programme Activities:

The main concerns of transplant patients: results from a European survey (20 min) Live Q&A (10 min) – 16 November, 14:45-15:15 CET

Fear of graft rejection: an open conversation (15 min)

Live Q&A (15 min) – 16 November, 17:15-17:45 CET

Uncertainty in illness: impact on patient self-efficacy and self-management (35 min) Live Q&A (25 mins) – 17 November, 16:45-17:45 CET

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*** SPECIAL FEE AVAILABLE FOR TRANSPLANT PATIENTS AND PATIENT SOCIETY MEMBERS/REPRESENTATIVES ***

Target group: physicians, transplant donor coordinators, nurses, allied healthcare professionals, professionals focusing on the ethical, legal and psychosocial aspects of organ transplantation, representatives of patient organizations, individual patients and their significant others. 

Workstream leaders: Anna Forsberg (Sweden), Nichon Jansen (The Netherlands), Hannah Maple (UK), Emma Massey (The Netherlands), David Paredes Zapata (Spain), Peter Carstedt (Sweden), Pisana Ferrari (Italy)

 

Please visit the page of the ESOT Patient inclusion initiative to learn more about our activities.