Abstract 5694
Background
In 2017, The NET Patient Foundation (NPF) set up a unique specialist Psychological Counselling Service, in response to finding that 50% of NEN patients had psychological care needs that were not being met (INCA Stakeholder Survey 2017). Many NEN patients tend to ‘live with’ their condition over several years (rather than conform to a more typical ‘treatment plus recovery/decline model’) and thus require psychological flexibility and endurance over time.
Methods
Clients were asked to complete an anonymous online feedback survey at the end of sessions. Data on presenting and emerging issues were collected by counsellors at commencement, and upon completion. In its first 12 months, 25 clients were seen for an average of 7.4 sessions each.
Results
NEN patients can suffer additional anxiety due to the unpredictability of distressing symptoms and prognosis uncertainty and low confidence in HCP’s. The psychological ‘toll’ of these can corrode pre-existing coping mechanisms over time. Findings supported evidence of suicidality from the Genetic Alliance Report 2018 ‘Living with Rare Condition’, in that 20% of NPF clients disclosed suicidal thoughts. Fears for the future (81%) anxiety (92 %) depression and low mood (88%) grief and loss (84%) anger (75%) and managing symptoms or treatment (82%) were key features of sessions. Dealing with diagnosis (71%), was a significant issue not just for those newly diagnosed, but also following periods of stability, where patients were processing the emotional impact of their condition either again, or for the ‘first’ time. Anger was an important common emotion to be expressed (75%).
Conclusions
The findings indicate a need for greater awareness of, and access to support for, the particular psychological burden upon NEN patients and families who live with this rare condition; the impact of diagnosis not just initially but over time, and greater training and support for all HCP’s working with them. Also requiring further research is the notable 67% of patients who reported either improved emotional tolerance of difficult physical symptoms, or a decline in intensity of them, over the course of the counselling sessions.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
The NET Patient Foundation.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.
Resources from the same session
5472 - Early response evaluation and CEA response in patients treated in a Danish randomized study comparing trifluridine/tipiracil (TAS-102) with or without bevazicumab in patients with chemorefractory metastatic colorectal cancer (mCRC)
Presenter: Camilla Qvortrup
Session: Poster Display session 2
Resources:
Abstract
2037 - Updated survival analysis of the randomized phase III trial comparing S-1 versus capecitabine in the first-line treatment of metastatic colorectal cancer (SALTO) by the Dutch Colorectal Cancer Group.
Presenter: Johannes Kwakman
Session: Poster Display session 2
Resources:
Abstract
3053 - JFMC51-1702-C7: Phase II study investigating efficacy and safety of trifluridine/tipiracil (FTD/TPI) plus bevacizumab (BEV) in patients (pts) with metastatic colorectal cancer (mCRC) refractory or intolerant to standard chemotherapies.
Presenter: Keisuke Kazama
Session: Poster Display session 2
Resources:
Abstract
3183 - Bevacizumab plus trifluridine/tipiracil in elderly patients with previously untreated metastatic colorectal cancer (KSCC 1602): A single-arm, Phase 2 study
Presenter: Akitaka Makiyama
Session: Poster Display session 2
Resources:
Abstract
3233 - Biweekly TAS-102 and Bevacizumab as a Third-Line Chemotherapy for metastatic colorectal cancer: A Phase II Multicenter Clinical Trial (TAS-CC4 study)
Presenter: Yoichiro Yoshida
Session: Poster Display session 2
Resources:
Abstract
5907 - Liquid biopsy concordance based on clonality and timing of testing in patients with metastatic colorectal cancer
Presenter: Pashtoon Kasi
Session: Poster Display session 2
Resources:
Abstract
1866 - Plasma clearance of RAS mutation under therapeutic pressure is a rare event in metastatic colorectal cancer
Presenter: Emilie Moati
Session: Poster Display session 2
Resources:
Abstract
2312 - High Circulating miR-1247 is a marker for poor prognosis in patients with metastatic colorectal cancer treated with chemotherapy and cetuximab
Presenter: Jakob Schou
Session: Poster Display session 2
Resources:
Abstract
5602 - Clinical relevance of circulating tumor (ct)DNA genotyping for first line cetuximab-based treatment monitoring in metastatic colorectal cancer (mCRC): a prospective multicentric study
Presenter: JOANA Vidal Barrull
Session: Poster Display session 2
Resources:
Abstract
3182 - Clonal hematopoiesis mutations in plasma cfDNA RAS/BRAF genotyping of metastatic colorectal cancer
Presenter: Beili Wang
Session: Poster Display session 2
Resources:
Abstract