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Completed Studies

AVALPROFS logo
AVALPROFS

Assessing the VALue to patients of PROgression Free Survival

To determine the 'value' of PFS to patients with metastatic cancer: 1. Patient understanding of theraprutic intent 2. Their goals and priorities 3. Tade-offs between burdens/toxicities/QoL and Survival (PFS and OS) 4. Patient characteristics that under-pin decusuons about treamtment options 5. Association of PFS improvement and/or deterioration with QoL and underlying mechanism 6. Association of PFS improvement and/or deterioration of psychological well-being. Progression Free Survival (PFS) is commonly used as an endpoint in clinical trials of novel cancer therapies. This study aims to find out what this means for patients. What they understand about and expect from these treatments and if the benefits from the treatment controlling the cancer make it worth any side effects they could or do experience.

Project Stage Archived

Project Start Date 01/12/2012

Project End Date 11/01/2016

BRCA Direct logo
BRCA Direct

BRCA-DIRECT: development and piloting of a digital platform to deliver Clinically-Integrated, Clinician-Independent, Rapid, Digital, Genetic Susceptibility Biomarker Testing

Project Stage Closed

Project Start Date 01/02/2020

Project End Date 31/12/2022

CU FITTER logo
CU FITTER

Cancer survivors' experiences of a community-based cancer-specific exercise programme: results of an exploratory survey

Exercise levels often decline following cancer diagnosis despite growing evidence of its benefits. Treatment side-effects, older age, lack of confidence and opportunity to exercise with others in similar circumstances influence this. The CUFITTER study explored the experiences of people attending a cancer-specific community-based exercise programme (CU Fitter™).

Project Stage Archived

Project Start Date 01/07/2016

Project End Date 31/10/2016

DIAMOND Phase 1-4 logo
DIAMOND Phase 1-4

Development and pilot testing of a web-based decision aid for people with motor neurone disease considering a gastrostomy feeding tube

Developing a decision aid for people with MND to decide if they want a gastrostomy fitted

Project Stage Analysis and Write Up

Project Start Date 01/08/2021

Project End Date 28/02/2023

ENDOPREDICT logo
ENDOPREDICT

Optimising decision-making about chemotherapy in breast cancer

The use of a prognostic tool (EndoPredict®) to inform adjuvant chemotherapy decisions in low to medium risk oestrogen receptor positive, Her-2 negative early breast cancer: feasibility, acceptability and economic impact in multicentre UK NHS practice. The primary quantitative aim is the change in decision made by the patient and clinician around chemotherapy as a result of the additional information in the EndoPredict® test. Specifically the overall increase or decrease in chemotherapy use.

Project Stage Closed

Project Start Date 16/07/2015

Project End Date 31/10/2016

IMPACTOR logo
IMPACTOR

IMPact of AbemaCiclib on patienTs rOles and Responsibilities

Looking at quality of life (QoL) in women starting abemaciclib treatment for locally advanced or metastatic breast cancer.

Project Stage Closed

Project Start Date 01/09/2020

Project End Date 31/08/2023

IMPARTER Phase 1 logo
IMPARTER Phase 1

IMproving PAtient undeRstanding of GEP TEst Results

This study evaluated two short information films (PIF) designed by SHORE-C, explaining GEP testing using the Oncotype DX test or Prosigna test.

Project Stage Complete

Project Start Date 01/10/2020

Project End Date 30/09/2021

Jaw Study logo
Jaw Study

Quality of life & communication in orthognathic (jaw straightening) surgery

The study aims were to: 1. use a validated patient reported outcome to quantify the health-related quality of life of a sample of QVH patients before they started orthognathic treatment and in a separate sample who were at 2yrs post-surgery follow up  2. explore the relationship between quality of treatment communication and the patient reported health-related quality of life outcome of patients that have completed corrective jaw surgery treatment.

Project Stage Closed

Project Start Date 04/09/2014

Project End Date 31/03/2016

LIMBER logo
LIMBER

LIving with Metastatic Breast CancER

The primary aim of LIMBER was to produce an online survey to provide a UK perspective of information and support needs for individuals living with metastatic breast cancer (MBC).

Project Stage Closed

Project Start Date 01/07/2021

Project End Date 30/11/2022

PEATY logo
PEATY

Perceptions and Experiences of Abemaciclib and Endocrine TherapY

This study looked at the expectations and experiences of women who were taking abemaciclib (a targeted therapy) and hormone therapy for high-risk early breast cancer. The study invovled a series of interviews with women before the start of treatment and 4 and 8 weeks later.

Project Stage Closed

Project Start Date 15/12/2021

Project End Date 31/08/2023

PRAGMATIC logo
PRAGMATIC

Patients' experiences of a suppoRted self-manAGeMent pAThway In breast Cancer

A 24-month longitudinal study of 110 patients to assess the effectiveness of the SSM programme in breast cancer and its impact on costs. We used the FACT PRRS, and the FACT-B to examine quality of survival (QoS) and cancer-specific QoL at baseline, 3, 6 and 12 months. Generic health-related quality of life was measured using EQ-5D . In addition, we interviewed a subgroup of patients (n=32) to explore experiences of the SSM pathway in more detail.

Project Stage Closed

Project Start Date 01/02/2020

Project End Date 31/03/2023

PROACT logo
PROACT

Patient Reported Outcomes in cancer, impact of Age and Carer/role demands associated with Treatment

Phase one of the study will comprise systematic reviews of PROs in advanced cancer (stream A) and caregiver impact (stream B) and a qualitative interview study to inditfy the key areas of importance relating to patient quality of survival and caregiver impact. Phase two will use the findings of phase one to develop, evaluate and validate two subscales which we hope will sit within the Functional Assessment of Chrinuc Illness Therapy (FACIT) Measurement System.

Project Stage Closed

Project Start Date 02/03/2015

Project End Date 31/08/2019

REFLECTIONS logo
REFLECTIONS

REmote Follow-up consultations: Lessons and Experiences during Covid-19 Time In ONcology Services

The REFLECTIONS service evaluation described & explored the experiences of doctors and patients of having to change from the usual routine of face-to-face meetings, to either telephone or video consultations.

Project Stage Complete

Project Start Date 01/09/2020

Project End Date 28/02/2021

Related logo
Related

Patient related Outcome Study for Phase II Study of prophylactic octreotide

This multi-centre international randomised controlled trial evaluated the efficacy of prophylactic octreotide in the prevention or reduction of diarrhoea in patients with advanced or metastatic breast cancer receiving treatment with lapatinib and capecitabine. The impact of chemotherapy-induced diarrhoea (CID) was investigated from the patient's perspective by collecting patient-reported outcome data (including a study-specific diarrhoea management diary) before and over the course of the treatment. After an interim analysis the trial was stopped early due to futility, however the collected patient-reported study outcomes were analysed and published to provide a better understanding of the burden of CID.

Project Stage Closed

Project Start Date 01/02/2014

Project End Date 11/04/2018

TRUSTING Workshops 2020-21 Evaluation logo
TRUSTING Workshops 2020-21 Evaluation

Talking about Risk, UncertaintieS of Testing IN Genetics

Evaluation of a series of pilot workshops developed to help helathcare professionals with the difficult conversations with patients and their relatives around genetic risk in breast cancer.

Project Stage Closed

Project Start Date 19/11/2020

Project End Date 01/06/2022

TRUSTING Workshops 2022-23 Evaluation logo
TRUSTING Workshops 2022-23 Evaluation

Talking about Risk and UncertaintieS of Testing IN Genetics

Following the successful evaluation of the intial series of TRUSTING workshops (training healthcare professionals how to communicate with patients about genetic testing in breast cancer), a group of facilitators was trained to deliver the course more widely around the UK. This second series of workshops was evaluated by measuring healthcare professionals knowledge and confidence in talking about genetic testing in breast cancer, before and after the workshops, as well as collecting feedback on the workshops themselves.

Project Stage Analysis and Write Up

Project Start Date 07/02/2023

Project End Date 31/12/2023

UKCTOCS logo
UKCTOCS

United Kingdom Collaborative Trial of Ovarian Cancer Screening

The research questions being addressed by the Psychosocial arm of the UKCTOCS study are: 1. To examine the knowledge, beliefs and attitudes of women in a general population sample to ovarian cancer screening. 2. To investigate the effect of different screening procedures on women's anxiety, depression and sexual functioning. 3. To examine women's perception of ovarian cancer risk and the impact that this has on willingness to attend for screening and subsequent compliance. 4. To compare women's satisfaction with, and acceptability of, the different screening procedures.

Project Stage In follow-up

Project Start Date 21/06/2000

Project End Date continuing

EMAIL: adminshore-c@sussex.ac.uk PHONE: 01273 873019 TWITTER: https://twitter.com/SussexSHORE_C LOCATION: MAP