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
5205 - Immune status of patients with different stages of colorectal cancer with and without circulating tumor cells
Presenter: Anastasia Sitkovskaya
Session: Poster Display session 2
Resources:
Abstract
5658 - Detection of 5-hydroxymethylcytosine in Circulating-Free DNA for Early Diagnosis of Colorectal Cancer
Presenter: Tianyu Liu
Session: Poster Display session 2
Resources:
Abstract
5779 - Detection of 5-hydroxymethylcytosine in Circulating-Free DNA for Prediction of The Efficacy of Conversion Therapy for Colorectal Cancer Liver Metastases
Presenter: Wenju Chang
Session: Poster Display session 2
Resources:
Abstract
4672 - mCRC gene profiling using the Idylla platform
Presenter: Christopher Bricogne
Session: Poster Display session 2
Resources:
Abstract
3393 - PIK3CA mutation in metastatic colorectal cancer (mCRC): association with clinico-pathological features and outcome
Presenter: Valentina Fanotto
Session: Poster Display session 2
Resources:
Abstract
1317 - Patient-Derived Xenografts (PDX) Identifies JMJD6 Inhibitor as an Effective Therapeutic Medicine in Colorectal Cancer.
Presenter: Feng Ye
Session: Poster Display session 2
Resources:
Abstract
1228 - DACH1 induced stemness of intestinal organoids by directly suppressing BMP signaling and contributes to intestinal tumorigenesis
Presenter: Xiang Hu
Session: Poster Display session 2
Resources:
Abstract
1147 - miR-148a inhibits early relapsed colorectal cancers and the secretion of VEGF by indirectly targeting HIF-1α under non-hypoxia/hypoxia conditions
Presenter: Hsiang-lin Tsai
Session: Poster Display session 2
Resources:
Abstract
1158 - Long noncoding RNA CASC21 promotes cell proliferation and metastasis in colon cancer.
Presenter: Qun Zhang
Session: Poster Display session 2
Resources:
Abstract
1259 - Prognostic and Predictive Impact On FMS-like Tyrosine Kinase 3 (FLT3) Amplification In Patients With Metastatic Colorectal Cancer
Presenter: Hiroko Hasegawa
Session: Poster Display session 2
Resources:
Abstract