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
1058 - Assessment of CPS+EG, Neo-Bioscore and modified Neo-Bioscore in breast cancer patients treated with preoperative systemic therapy: a multicenter cohort study
Presenter: LING XU
Session: Poster Display session 2
Resources:
Abstract
1156 - The concordance of treatment decision guided by Oncotype and the PREDICT tool in early stage breast cancer
Presenter: Hadar Goldvaser
Session: Poster Display session 2
Resources:
Abstract
3447 - Influence of first treatment delay on survival among breast cancer subtypes
Presenter: Irene Zarcos Pedrinaci
Session: Poster Display session 2
Resources:
Abstract
3505 - Clinical features of early-stage (I-III) triple-negative breast cancer (TNBC) patients with tumors exhibiting low-overall change in molecular profile after neoadjuvant therapy.
Presenter: Nour Abuhadra
Session: Poster Display session 2
Resources:
Abstract
5442 - Meta-analysis in HER2+ early breast cancer therapies and cost-effectiveness in a Brazilian perspective
Presenter: Marcos Magalhaes
Session: Poster Display session 2
Resources:
Abstract
1570 - Anti-mullerian hormone (AMH) levels and antral follicle counts (AFC) may predict ovarian reserves before systemic chemotherapy (SC) in women with breast cancer(BC); a prospective clinical study
Presenter: Cetin Ordu
Session: Poster Display session 2
Resources:
Abstract
2698 - Prognosis of selected triple negative apocrine breast cancer patients who did not receive adjuvant chemotherapy.
Presenter: Giuseppe Cancello
Session: Poster Display session 2
Resources:
Abstract
3104 - Novel Blood Based Circulating Tumor Cell Biomarker For Breast Cancer Detection
Presenter: Chun-Yu Liu
Session: Poster Display session 2
Resources:
Abstract
4631 - Multi-Gene Prognostic Signatures and Prediction of Pathological Complete Response of ER-Positive HER2-Negative Breast Cancer Patients to Neo-Adjuvant Chemotherapy
Presenter: Claudia Mazo
Session: Poster Display session 2
Resources:
Abstract
4632 - Impact of menopause status on breast cancer outcomes and amenorrhea incidence during adjuvant tailored dose dense chemotherapy
Presenter: Andri Papakonstantinou
Session: Poster Display session 2
Resources:
Abstract