Welcome to Sussex Health Outcomes
Research & Education in Cancer

Research PublicationsDVDs

The central aim of Sussex Health Outcomes, Research & Education in Cancer (SHORE-C) is to conduct pragmatic research in psychosocial oncology. Our work includes:

  1. Measuring Quality of Life (QoL) in clinical trials of cancer therapy

  2. Designing Patient Reported Outcome (PRO) measures

  3. Developing and evaluating interventions to help patients deal with treatment side-effects

  4. Producing educational materials and helping to improve communication skills of Cancer Healthcare Professionals


"Pulmonary Metastasectomy versus Continued Active Monitoring in Colorectal Cancer (PulMiCC): a multicentre randomised clinical trial " Trials Open Access article first published online 12 December 2019

"Understanding of prognosis in non-metastatic prostate cancer: a randomised comparative study of clinician estimates measured against the PREDICT prostate prognostic model " British Journal of Cancer 16 September 2019

"Insights into the use of social comparisons within an advanced cancer setting " Journal of Psychosocial Oncology Research and Practice - online version ahead of print

"Patients' and partners' views of care and treatment provided for metastatic castrate-resistant prostate cancer in the UK " European Journal of Cancer Care - online version before inclusion in an issue

"Sexual functioning in 4,418 postmenopausal women participating in UKCTOCS: a qualitative free-text analysis " Menopause

"Talking about risk in the context of genomic tests (TARGET): development and evaluation of an educational program for clinicians " Breast Cancer Research and Treatment

"Development and validation of the caregiver roles and responsibilities scale in cancer caregivers " Quality of Life Research

"Effects of Neratinib on Health-Related Quality-of-Life in Women with HER2-Positive Early-Stage Breast Cancer: Longitudinal Analyses from the Randomized Phase III ExteNET Trial " Annals of Oncology, Oxford University Press

"Efficient development and usability testing of decision support interventions for older women with breast cancer " Patient Preference and Adherence, Dove Press

"The cost-effectiveness of EndoPredict to inform adjuvant chemotherapy decisions in early breast cancer " Health Policy and Technology

"Treatment experiences, information needs, pain and quality of life in men with metastatic castrate-resistant prostate cancer: results from the EXTREQOL study " Clinical Oncology

"Quality of life assessment using patient reported outcome (PRO) measures - still a Cinderella outcome? Published in Annals of Oncology by Oxford University Press.Download the pdf

"Development and validation of the patient roles and responsibilities scale in cancer patients " Quality of Life Research

"4th ESO–ESMO International Consensus Guidelines for Advanced Breast Cancer (ABC 4)" Download from

"Do drugs offering only PFS maintain quality of life sufficiently from a patient’s perspective? Results from AVALPROFS (Assessing the ‘VALue’ to patients of PROgression Free Survival) study " Supportive Care in Cancer

"Psychological Issues in Breast Cancer" in The Sixth Edition of The Companion to Specialist Surgery published by Elsevier

"RAZOR: A phase II open randomized trial of screening plus goserelin and raloxifene versus screening alone in premenopausal women at increased risk of breast cancer " Cancer Epidemiology Biomarkers and Prevention

"Quality of life and communication in orthognathic treatment" Journal of Orthodontics

"Cancer survivors’ experiences of a community-based cancer-specific exercise programme: results of an exploratory survey" Supportive Care in Cancer

"Enhancing decision-making about adjuvant chemotherapy in early breast cancer following EndoPredict testing" published by Psycho-Oncology

"EXTREQOL Identifies Ongoing Challenges in Maximising Quality of Survival in Men with Metastatic Castrate-Resistant Prostate Cancer" published by Clinical Oncology

“Patient-Centred Decision Making: Communication Challenges” Chapter 4 in Problem Solving in Patient-Centred and Integrated Cancer Care published by EBN Health Books

"Efficacy and safety of subcutaneous trastuzumab and intravenous trastuzumab as part of adjuvant therapy for HER2-positive early breast cancer: final analysis of the randomised, two-cohort PrefHer study" European Journal of Cancer

"Quality of Survival: a new concept framework to assess the quality of prolonged life in cancer" Expert Review of Quality of Life in Cancer Care

"Self-reported sexual health: Breast cancer survivors compared to women from the general population – an observational study" BioMed Central

"The Cost-effectiveness of Screening for Ovarian Cancer: Results from the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS)" The British Journal of Cancer

"A new paradigm or a misrepresentation of current communication research and teaching." Letter to the Editor of Medical Education

"A user-centred approach to developing bWell, a mobile app for arm and shoulder exercises after breast cancer treatment." Journal of Cancer Survivorship

"The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers." Journal of Cancer Survivorship

"Switching between intravenous and subcutaneous trastuzumab: Safety results from the PrefHer trial". The Breast

"Long-Term Follow-Up of the Intergroup Exemestane Study." Journal of Clinical Oncology

"The effect of ovarian cancer screening on sexual activity and functioning: results from the UK collaborative trial of ovarian cancer screening RCT" in British Journal of Cancer (restricted access/subscription required).

Chapter 18 “The Effects of Breast Cancer Treatments on Cognition” in Alistair Ring & Marina Parton (Eds) Breast Cancer Survivorship Springer

Too hot, too cold or can we get it just right? What emotional distance should oncologists keep from their patients? Read morered arrow

Patient-reported outcome measures of the impact of cancer on patients’ everyday lives: a systematic review. Read morered arrow

Confusion Over Differences in Registration and Randomization Criteria for the LORIS (Low-Risk DCIS) Trial. Read morered arrow

3rd ESO-ESMO international consensus guidelines for Advanced Breast Cancer (ABC3). Simultaneously published in Annals of Oncology and The Breast. Read morered arrow

Final results of the TANIA randomised phase III trial of bevacizumab after progression on first-line bevacizumab therapy for HER2-negative locally recurrent/metastatic breast cancer. Read morered arrow

Sexual dysfunction in breast cancer survivors: cross-cultural adaptation of the Sexual Activity Questionnaire for use in Portugal. Read morered arrow


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TRUSTING Workshops

Talking about Risk, UncertaintieS of Testing IN Genetics

Professors Lesley Fallowfield and Valerie Jenkins are running a series of TRUSTING Workshops from April to July this year

These residential workshops last 8 hours split over 2 half days and attract 9 cPD points. Courses are funded via a BCRF research grant and are free of charge, including accommodation and rasonable travel expenses. Click here for more information about the TRUSTING study.

Professor Valerie Jenkins Inaugural Lecture

Val Jenkins inaugural lecture

More than 170 people attended, including colleagues from SHORE-C and local sixth form students. Prof Jenkins presented her research in communicating about clinical trials, studies exploring the phenomenon of 'brain fog' and reflected on her career in psycho-oncology. The lecture was introduced by Prof Debra Humphris (above left), Vice-Chancellor at the University of Brighton, and concluded by Prof Malcolm Reed (right), Dean at BSMS.

Professor Valerie Jenkins Inaugural Lecture, Wednesday November 13

Lesley and Val at San Diego

A night out in San Diego!

Lesley and Val at San Diego

Dame Lesley and Dr Val Shilling are presenting papers on SHORE-C's recently developed patient and caregiver roles and responsibilities scales at the 26th ISOQOL Annual Conference in San Diego, California.

Post Menopausal Research Discussion on Radio BBC Sussex

Kathryn Monson, SHORE-C's Senior Trials Manager, presented a poster at the fifth International Clinical Trials Methodology Conference, held on 6–9 October at the Hilton Brighton Metropole.

Katherine Monson

The International Clinical Trials Methodology Conference is organised by the Medical Research Council Network of Hubs for Trials Methodology Research. It provides a platform for clinical trials researchers and statisticians to present their work on methodological aspects such as novel trial design, improving patient recruitment, data management and statistical analysis. Kathryn Monson, Senior Trials Manager from Sussex Health Outcomes Research and Education in Cancer (SHORE-C), attended the conference and presented a poster on patient-reported outcome data collected in the 'POsitive Sentinel NOde: adjuvant therapy alone versus adjuvant therapy plus Clearance or axillary radiotherapy' (POSNOC) trial. More info here.

Post Menopausal Research Discussion on Radio BBC Sussex

Dr Helena Harder

Dr Helena Harder, Research Fellow at Sussex Health Outcomes, Research and Education in Cancer (SHORE-C) featured on BBC Sussex's 'Drive at 5' show this week. Helena discussed a study she led, which found that less than a quarter of postmenopausal UK women are sexually active and a mere 3% are happy with their sex life. Listen to the interview by clicking on the image above (the interview starts at 20 minutes in).

Filming for TRUSTING at SHORE-C

picture of filming for TRUSTING

We are producing a new educational series, which aims to help healthcare professionals when discussing genetic testing with patients and their families who are a high genetic risk of breast, ovarian and prostate cancer. More news to follow ...

SHORE-C article finds that many postmenopausal UK women have disappointing sex lives

Less than a quarter of postmenopausal UK women are sexually active and a mere 3% are happy with their sex life, according to a our new study. We analysed free text comments made on a sexual activity questionnaire by more than 4,000 women taking part in an ovarian cancer screening trial (UKCTOCS). Four major classification themes were identified: partner availability, physical and sexual health, mental wellbeing and interpersonal relationships. Despite 65% of women having partners, findings showed that only around a third of these women were sexually active. Just 3% referred to positive sexual experiences, yet only 6% had sought help for their sexual problems.

Press coverage for SHORE-C article on sexual functioning in older women

Following the online publication of "Sexual functioning in 4,418 postmenopausal women participating in UKCTOCS: a qualitative free-text analysis ", articles about the study are published today in the news media including in Reuters, Yahoo!, and The Daily Mail.

Film of the publication!

Many postmenopausal UK women have disappointing sex lives. According to our new study on sexual_functioning in 4,418 postmenopausal women in the UK, less than a quarter are sexually active and a mere 3% are happy with their sex life.


Congratulations to Lucy Matthews, our Clinical Trials Coordinator, who obtained her level II certificate in counselling studies this month.

Breast Cancer Research Foundation fund two new films for SHORE-C

Lesley and film crew

We have been busy filming two new scenarios to add to our Breast Cancer Research Foundation funded TARGET (Talking about Risk in the Context of Genomic Tests) educational program for clinicians working in breast cancer. The scenarios deal with giving risk of recurrence results using Prosigna - a genomic test that was recently approved by the National Institute for Health and Care Excellence. The production was funded by Nanostring; one scenario starred Dr Marina Parton from the Royal Marsden Hospital (pictured with Lesley and the actors), and the other featured Dr Judy King from the Royal Free Hospital, London.

TARGET paper - Talking about risk in the context of genomic tests (TARGET): development and evaluation of an educational program for clinicians published and online

target word map of treatments

The paper, with results from the seven TARGET workshops held over the past year, has been accepted by Breast Cancer Research and Treatment. Thanks to all the clinicians who attended. You can read the paper here.

Academy of Medical Science DEPARTURE LOUNGE

Dame Lesley was interviewed on Radio Five Live by Adrian Chiles last week about death and dying and the Academy of Medical Science project, The Departure Lounge. You can find the innovative public engagement space in Lewisham Shopping Centre. Two of our researchers, Rachel Starkings and Dr Susan Catt, were facilitators, spending two days each there last week and over the weekend. The Academy of Medical Sciences want to demystify death and it was designed to encourage conversations about death and tackle some of the taboos around dying.

ESO Umberto Veronesi Memorial Award

Dame Lesley receiving her Umberto Vronesi Foundation Prize

Dame Lesley was awarded the Umberto Veronesi Foundation prize at this year's St Gallen International Breast Cancer Conference, which took place in Vienna on 20-23 March. Prof Veronesi, who died in 2016 aged 90, contributed enormously to the research showing that all women with breast cancer did not necessarily need to have a mastectomy. Dame Lesley was given the award in recognition of her leading role in advancing science and care of breast cancer patients.

Dame Lesley giving her lecture at Gallen

Commenting on the award, she said: "I am absolutely thrilled and immensely proud that the Awards Committee have nominated me, a psycho-oncologist rather than a surgeon, for this prestigious award. I knew Prof Veronesi well and he was always very kind and encouraging to me in the early stages of my career. I am sure that the title of my talk 'How heretical thoughts and challenging orthodoxy improves breast cancer care' which epitomised his own private and professional life, would make him smile.

BPOS 2019, Chester, UK

Two of our researchers, Lucy Matthews and Rachel Starkings are at BPOS in Chester. Here Lucy presents some results from the EXTREQOL study.

New mentoring lead for BSMS

The BSMS Inclusivity Team is delighed that Dr Val Shilling has taken on the role of mentoring working group lead. Dr Shilling replaces Dr Sara Balouch, who started a new position at BPP University in January. Dr Shilling brings a wealth of experience to the role having been both a mentee and mentor in the scheme.

Welcome to our new member of staff, Elizabeth Renvoize!

Beth joins us as Department Assistant. Good luck to her and all for 2019!


More news ...

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