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
3536 - Palbociclib plus an aromatase inhibitor as first-line therapy for metastatic breast cancer in US clinical practices: Real-world progression-free survival analysis
Presenter: Mylin Torres
Session: Poster Display session 2
Resources:
Abstract
4022 - Ribociclib (RIB) plus letrozole (LET) in male patients (pts) with hormone receptor-positive (HR+), human epidermal growth factor receptor-2–negative (HER2–) advanced breast cancer (ABC) from the CompLEEment-1 trial
Presenter: Mario Campone
Session: Poster Display session 2
Resources:
Abstract
3599 - Comparative effectiveness of palbociclib plus letrozole vs letrozole for metastatic breast cancer in US real-world clinical practices
Presenter: Rachel Layman
Session: Poster Display session 2
Resources:
Abstract
901 - Pharmacokinetics (PK), safety, and efficacy of [fam-] trastuzumab deruxtecan with OATP1B/CYP3A inhibitors in subjects with HER2-expressing advanced solid tumors
Presenter: Yung-Jue Bang
Session: Poster Display session 2
Resources:
Abstract
2777 - A Phase 2 study of abemaciclib in patients (pts) with brain metastases (BM) secondary to non-small cell lung cancer (NSCLC) or melanoma (MEL).
Presenter: Solmaz Sahebjam
Session: Poster Display session 2
Resources:
Abstract
3980 - Ribociclib (RIB) + letrozole (LET) in patients (pts) with visceral metastases (VM) or bone-only metastases (BOM) in hormone receptor-positive (HR+), human epidermal growth factor receptor-2–negative (HER2–) advanced breast cancer (ABC): Subgroup analysis from the CompLEEment-1 trial
Presenter: Michelino De Laurentiis
Session: Poster Display session 2
Resources:
Abstract
4024 - Ribociclib (RIB) + letrozole (LET) in patients (pts) with hormone receptor-positive (HR+), human epidermal growth factor receptor-2–negative (HER2–) advanced breast cancer (ABC) and central nervous system (CNS) metastases: Subgroup analysis from the phase 3b CompLEEment-1 trial
Presenter: Paul Cottu
Session: Poster Display session 2
Resources:
Abstract
2151 - Clinical outcome and toxicity data in patients with advanced breast cancer treated with cyclin-dependent kinase 4/6 (CDK4/6) inhibitors combined with endocrine therapy in a real-world clinical setting.
Presenter: Elena Fountzilas
Session: Poster Display session 2
Resources:
Abstract
3994 - Safety and efficacy of Ribociclib (RIBO) + letrozole (LET) in patients (pts) with hormone receptor-positive (HR+), human epidermal growth factor receptor 2-negative (HER2–) advanced breast cancer (ABC): Interim results from the Italian cohort of the CompLEEment-1 (C-1) study.
Presenter: Michele De Laurentiis
Session: Poster Display session 2
Resources:
Abstract
1370 - Interim Results From CompLEEment-1 (A Phase 3b Study of Ribociclib and Letrozole as First-Line Therapy for Advanced Breast Cancer in an Expanded Population): Spanish cohort results
Presenter: Javier Salvador
Session: Poster Display session 2
Resources:
Abstract