IN THE NEWS
New Decision Aid
A web-based patient decision aid for people living with MND making a decision about whether to have a gastrostomy tube is now freely available to all via the MND Association website. Gastrostomy tube – is it for me? can be directly accessed here.
The film above provides a short introduction to the project and decision aid and you can read the peer-reviewed publication here. The decision aid was produced as part of the DiAMoND study, led by Dr Sally Wheelwright. Dr Wheelwright said: “People who have MND are faced with many difficult decisions about their care, including whether to have a gastrostomy tube. Gastrostomy tube – is it for me? is a resource which can supplement conversations with healthcare professionals during the decision-making process and help individuals to come to the right decision for them.”
They just don't know what to say or do
We have released a film "They just don't know what to say or do" looking at experiences, support needs and quality of life of women living with metastatic breast cancer, and aimed at helping their families and friends. The film uses quotes from the answers that patients gave to the question ‘What did family or friends say or do that helped or hindered?’ in our recent LIMBER survey. Professor Jenkins, who led the film production, said: “Unfortunately even individuals who may care deeply and wish to be helpful often do not know what to say or do when someone has disease which, although still treatable, can no longer be cured. Their actions and words can make their loved ones with cancer feel hurt, misunderstood or abandoned.” In the film Professor Fallowfield discusses these problems with Lesley Stephen, a mother of 4 children, who was diagnosed with secondary breast cancer in 2014 and given a life expectancy of one to two years. (07 Aug 2023)
You can read more about the study and the film on the BSMS website - here.
Researchers at SHORE-C (Brighton and Sussex Medical School) are looking for people with breast cancer to take part in a telephone interview for their views about receiving genetic test information and results online. The findings will help doctors introduce this in their clinics and improve accessibility for under-served patients.
We are looking for people with breast cancer (past or present diagnosis) who are: 70 years or older and/or from a non-white ethnic background and/or disadvantaged background (for example low household income).
You don't have to have experience with genetic testing to take part!
If you are interested, please contact firstname.lastname@example.org or 01273 873019. We offer a £25 voucher for participation.
Using virtual reality to navigate difficult converstations
To read more about the work Professor Dame Lesley Fallowfield has been doing with the RSM and BodySwaps to develop a virtual reality training program in navigating difficult conversations for doctors and medical students you can see the artciles on the Unversity of Sussex and Royal Society of Medicine websites.
Cancer Research Symposium 2023
Professor Fallowfield and Professor Jenkins gave a talk at the NIHR Cancer Research Symposium in Exeter, Devon, UK. The talk was entitled 'The Importance of Teams Talking Trials'.
British Breast Group Annual Conference (22 to 23 June 2023)
We were one of the main organisers of this very successful annual meeting held at the Mercure Hotel in Brighton. The meeting was attended by 85 participants and held over two days (22nd-23rd June). There were diverse presentations and many good updates on diagnostics and treatments. Professor Fallowfield delivered one of the plenary talks entitled ‘Communication – Past, present and future’. Other speakers included Professor Fiona Gilbert on the use of artificial intelligence in breast imaging, Professor Diana Eccles on genetic predisposition and decision making, Professor Peter Schmid on immunotherapy in breast cancer and Mr Stuart McIntosh on local treatment and de-escalation studies.
Dr Sally Wheelwright with other contributers to her Cachexia session at the MASCC Conference in Japan
Dr Sally Wheelwright was at MASCC in Japan talking about the role of psychological care in cancer cachexia. Her key message is that all health care professionals can provide it and it's essential for patients and caregivers
Professor Dame Lesley Fallowfield tells us about the latest Bodyswaps module, created in collaboration with the Royal Society of Medicine - Also:-
The Royal Society of Medicine is delighted to offer four inaugural Thompson Family scholarships of £5,000 each. Applicants will be invited to conduct a piece of research related to an innovative communication skills programme for healthcare professionals using virtual reality.
NEW: "Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC): quality of life and service use results " Supportive Care in Cancer Published September 2023
NEW: "Tumour stage, treatment, and survival of women with high-grade serous tubo-ovarian cancer in UKCTOCS: an exploratory analysis of a randomised controlled trial " Lancet Oncology Published September 2023
"Development of ‘Gastrostomy tube – Is it for me?’, a web-based patient decision aid for people living with motor neurone disease considering having a gastrostomy tube placed " Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Published July 2023
"Living with metastatic breast cancer (LIMBER): experiences, quality of life, gaps in information, care and support of patients in the UK " Supportive Care in Cancer Published July 2023
"Mortality impact, risks, and benefits of general population screening for ovarian cancer: the UKCTOCS randomised controlled trial " Health Technology Assessment 2023 Published May 2023
"Domestic Abuse in the Context of Life-Limiting Illness: A Systematic Scoping Review " Health & Social Care in the Community Published 10 April 2023
"A digital pathway for genetic testing in UK NHS patients with cancer: BRCA-DIRECT randomised study internal pilot " Journal of Medical Genetics Published 22 July 2022
"Talking about Risk, UncertaintieS of Testing IN Genetics (TRUSTING): development and evaluation of an educational programme for healthcare professionals about BRCA1 & BRCA2 testing " British Journal of Cancer Published 17 June 2022
"The role of patient-reported outcome measures in the continuum of cancer clinical care: ESMO Clinical Practice Guideline " Annals of Oncology Published 21 April 2022
"Health-related quality of life in patients with COVID-19; international development of a patient-reported outcome measure " Journal of Patient-Reported Outcomes Published 26 March 2022
"Developing Cancer Quality of Life Assessment Tools " Handbook of Quality of Life in Cancer Book Chapter, Published 26 March 2022
"Modifiable pre-treatment factors are associated with quality of life in women with gynaecological cancers at diagnosis and one year later: Results from the HORIZONS UK national cohort study " Gynecologic Oncology Published 26 March 2022
"A fascinating time to be involved with research’ Exploring the impact of COVID-19 on postgraduate psycho-oncology researchers " Psycho-Oncology Published 19 January 2022
"IMPARTER, Phase 1 of an intervention to improve patients’ understanding of gene expression profiling tests in breast cancer " Breast Cancer Research and Treatment Published 04 January 2022
- BRCA-DIRECT 2: SBRI Project - BRCA-DIRECT2
- IMPact of AbemaCiclib on patienTs’ rOles and Responsibilities - IMPACTOR
- IMproving PAtient undeRstanding of GEP TEst Results: Phase 4 - IMPARTER: Phase 4
- LIving with Metastatic Breast CancER - development of support tools to address the unmet information needs of caregivers - LIMBER FILM DEVELOPMENT
- A Phase III trial of surgery versus active monitoring for LOw RISk DCIS Trial - LORIS
- Perceptions and Experiences of Abemaciclib and Endocrine TherapY - PEATY
- POsitive Sentinel NOde: adjuvant therapy alone versus adjuvant therapy plus Clearance or axillary radiotherapy - POSNOC
- Quality of Life After Bladder Cancer - Q-ABC
- Repeated Drainage inUntreatable Cirrhosis: A Randomised Controlled Trial - REDUCe2
- Talking about Risk and UncertaintieS of Testing IN Genetics - TRUSTING WORKSHOPS