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"Watson, Eila K"
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Quality of life and patient reported outcomes in the UK Mammo-50 randomised trial of annual versus less frequent mammographic surveillance in people with breast cancer aged 50 years and over
2025
Background
Mammo-50, a randomised phase III trial, demonstrated that for women aged 50 years or older and 3-years post breast cancer diagnosis, less frequent mammograms (2-yearly after conservation surgery; 3-yearly after a mastectomy) were non-inferior to annual mammograms in terms of detection of recurrences, or new breast primaries. It is important to assess Quality of life (QoL) in this population to ensure no detriment is associated with a less frequent mammographic surveillance schedule.
Methods
A mixed methods QoL sub-study was undertaken to explore potential differences between the trial arms in terms of fear of recurrence, QoL and distress levels and to explore patient reported experiences. Participants were asked to complete a questionnaire booklet annually whilst on the trial. Longitudinal random effects regression models were fitted to assess changes in QoL over time and across trial arms. Free text data were collected on participants worries or concerns.
Results
5235 women were randomised between April 2014 and September 2018, from 114 UK sites of which 4488 women (86%) returned a baseline QoL booklet. With a median 5.7 years follow-up (8.7 years post-curative-surgery), no differences between trial arms were identified for any of the QoL scales measured. Themes identified from the free text data included co-morbidities, family problems and side-effects of hormone therapy.
Conclusions
There were no differences in any of the QoL scales between the trial arms of Mammo-50, implying that less frequent mammographic surveillance does not adversely impact participants’ QoL. Women were concerned with co-morbidities or family problems and side-effects of treatment rather than worries about having less frequent mammograms.
Trial registration
ISRCTN48534559, 26 February 2014.
Journal Article
The experiences and needs of couples affected by prostate cancer aged 65 and under: a qualitative study
2021
PurposeProstate Cancer (PCa) is often considered to be an illness affecting older men, however the prevalence in younger men (<=65 years) is rising. Diagnosis and treatment for PCa can have a significant impact on the lives of both the man with PCa and his partner. This study explored the experiences and needs of younger men and their partners affected by PCa. The findings will be used to inform service provision and develop interventions appropriate to need.MethodsParticipants were recruited from respondents to a national PROMS study (Life After Prostate Cancer Diagnosis (LAPCD), who indicated on completed questionnaires their willingness to be interviewed. Semi-structured telephone interviews were conducted with twenty-eight couples, separately (56 participants). Data were analysed using the Framework Method.ResultsFollowing the diagnosis of PCa, couples’ experienced changes in their intimate relationships, parental/familial roles, work and finances, and social connections and activities. Couples adopted a range of strategies and behaviours to help their adjustment to PCa, such as communicating with each other, distancing, distraction, and adopting a positive mindset towards PCa. This, in turn, influenced how their identity as a couple evolved.ConclusionsFollowing a diagnosis of PCa, the identity of couples are continually evolving. It is important that these couples are provided with the appropriate information, support and resources to help them transition along the cancer pathway.Implications for Cancer SurvivorsKey areas of support identified for younger couples include: 1) couple focused support programme to foster relationship strategies/behaviours that facilitate couple adjustment; 2) age-specific support, e.g. ‘buddying systems’ connecting younger couples affected by PCa and providing them with tailored information (written/online/app).
Journal Article
Experiences and supportive care needs of UK patients with pancreatic cancer: a cross-sectional questionnaire survey
2019
ObjectivesPatients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer. This survey aimed to describe their experiences of care and supportive care needs to inform future service provision.DesignCross-sectional questionnaire survey of patients with pancreatic cancer in the UK.SettingIndividuals at any stage along the care pathway were recruited via five National Health Service sites in the UK, and online, from January to June 2018.Participants274 individuals completed the questionnaire (78% (215) were completed online). Approximately half of participants were diagnosed within the last year (133/274). Of 212 providing gender details, 82 were male and 130 were female. Ninety per cent (192/213) described themselves as White British.Primary outcome measuresExperiences of communication and information; involvement in treatment decisions; supportive care needs.ResultsCommunication with, and care received from, clinical staff were generally reported positively. However, 29% (75/260) of respondents did not receive enough information at diagnosis, and 10% (25/253) felt they were not involved in decisions about their treatment, but would have liked to be. Supportive care needs were greatest in psychological and physical/daily living domains. 49% (108/221) of respondents reported one or more moderate/high unmet needs within the last month, of which the most commonly reported were: dealing with uncertainty about the future; fears about the cancer spreading; not being able to do things they used to; concerns about those close to them; lack of energy; anxiety; feelings of sadness and feeling down/depressed. Experiences were poorer, and unmet supportive care needs greater, in patients with unresectable disease.ConclusionsPatients with pancreatic cancer have unmet information and support needs across the cancer trajectory. Psychological and physical support appears to be the biggest gap in care. Needs should be assessed and supportive care interventions implemented from the point of diagnosis, and monitored regularly to help patients live as good a quality of life as possible.
Journal Article
Rethinking the message on alcohol and breast cancer with UK women: a Delphi study
2025
Abstract
Alcohol consumption is a well-established, yet, under-recognized risk factor for breast cancer (BCa) in women. Low public awareness of this link limits informed decision-making and undermines support for evidence-based alcohol policy. Existing communication strategies often neglect the socioemotional context in which such messages are received. This study offers a novel, participant-informed approach to message development, grounded in rigorous qualitative methods and public involvement. A Delphi study engaged 260 women aged 40–65—drinkers, ex-drinkers, and those with BCa—via an open-ended survey. Responses were explored in greater depth through seven online focus groups (n = 33) and a workshop (n = 7), to review themes and findings. Reflexive thematic analysis identified two overarching themes: (i) barriers to effective communication, including social norms, mistrust of public health messaging, psychological defence mechanisms, and fear of stigma and (ii) messaging strategies for overcoming these barriers, with narrative-based approaches (e.g. personal stories) identified as a promising alternative to hard-hitting or fear-based messaging. These findings extend existing literature by offering a framework for constructing public health messages that resonate with diverse audiences while avoiding unintended harms. By foregrounding the emotional and cultural dynamics of risk perception, this research contributes significant and timely evidence to inform cancer prevention campaigns and alcohol policy advocacy.
Journal Article
Diet and nutrition in patients who have received pelvic radiotherapy: A mixed-methods study to explore dietary habits, nutritional awareness, and experiences of nutritional care
2021
Individuals who have survived cancer may benefit from dietary modifications to improve quality of life and future health outcomes. The aim of this study was to explore dietary habits and experiences of nutritional support in patients with a cancer diagnosis who have received radiotherapy to the pelvic area.
A mixed-methods approach was used. Individuals diagnosed with a pelvic cancer (anal, bladder, rectal, and cancers of the reproductive organs), either undergoing or having completed pelvic radiotherapy 6 to 24 mo previously, were invited to participate in a postal survey. A purposive subsample was also invited to take part in telephone interviews. Thematic analysis of interview data was undertaken and integrated with data from quantitative analysis.
The survey was completed by 254 (38%) respondents. Two-thirds of respondents (170) reported dietary changes since diagnosis; most notable changes were reduction of sugary foods (48%) and alcohol (41%). Receipt of support from the health care team was significantly associated with dietary change (odds ratio, 3.26; 95% confidence interval, 1.58–6.75); however, only 43% (108) had received dietary support from the health care team. Of the respondents, 68% (171) said they would like to receive additional dietary support. The effect of the condition on diet was highlighted in the theme “Impact of diagnosis and treatments on dietary choices.” Self-management of disease was influenced by personal resources, social resources, comorbidities and disabilities, influence of work, regaining normality, and barriers to dietary changes.
Lack of routine provision of nutritional care to patients after a cancer diagnosis and patient interest in this area highlighted unmet needs in managing diet-related problems and leading a healthy future lifestyle.
•Individuals who have survived cancer may benefit from dietary modifications.•Individuals who have survived pelvic cancers make changes in their diet post-diagnosis.•Patients with pelvic cancers express concerns about their diet and are interested in receiving information.•Support in diet and nutrition was not routinely provided.•Facilitators and barriers affect the ability to self-manage diet post-diagnosis.
Journal Article
Annual versus less frequent mammographic surveillance in people with breast cancer aged 50 years and older in the UK (Mammo-50): a multicentre, randomised, phase 3, non-inferiority trial
by
Audisio, Riccardo
,
Barrett-Lee, Peter J
,
Hartup, Sue
in
Aged
,
Breast cancer
,
Breast Neoplasms - diagnostic imaging
2025
The frequency of mammographic surveillance for women after diagnosis of breast cancer varies globally. The aim of this study was to evaluate whether less than annual mammography was non-inferior in terms of breast cancer-specific survival in women aged 50 years or older.
Mammo-50 was a multicentre, randomised, phase 3 trial of annual versus less frequent mammography (2-yearly after conservation surgery; 3-yearly after a mastectomy) for women aged 50 years or older at initial diagnosis of invasive or non-invasive breast cancer and who were recurrence free 3 years post curative surgery. The trial was conducted at 114 National Health Service hospitals in the UK. Participants were randomly assigned (1:1) to annual or less frequent mammograms at 3 years post curative surgery and were followed up for 6 years. The co-primary outcomes were breast cancer-specific survival and cost-effectiveness. The cost-effectiveness analysis will be reported elsewhere. Breast cancer-specific survival was assessed in the intention-to-treat population. Secondary outcomes were recurrence-free interval, overall survival, and referrals back to the hospital system. 5000 women provided 90% power to detect a 3% absolute non-inferiority margin for breast cancer-specific survival with 2·5% one-sided significance. The trial was registered with the ISRCTN registry, ISRCTN48534559; recruitment is complete but longer-term follow-up is ongoing.
Between April 22, 2014, and Sept 28, 2018, 5235 women were randomly assigned to annual mammography (n=2618) or less frequent mammography (n=2617). 3858 (73·6%) women were aged 60 years or older, 4202 (80·3%) had undergone conservation surgery, 4576 (87·4%) had invasive disease, 1159 (22·1%) had node positive disease, and 4330 (82·7%) had oestrogen receptor-positive tumours. With a median of 5·7 years follow-up (IQR 5·0–6·0; 8·7 years post curative surgery), 343 women died, including 116 who died of breast cancer (61 in the annual mammography group and 55 in the less frequent mammography group). 5-year breast cancer-specific survival was 98·1% (95% CI 97·5–98·6) in the annual mammography group and 98·3% (97·8–98·8) in the less frequent mammography group (hazard ratio 0·92, 95% CI 0·64–1·32), demonstrating non-inferiority of less frequent mammography at the pre-specified 3% margin (non-inferiority p<0·0001). 5-year recurrence-free interval was 94·1% (95% CI 93·1–94·9) in the annual mammography group and 94·5% (93·5–95·3) in the less frequent mammography group. Overall survival at 5 years was 94·7% (95% CI 93·8–95·5%) and 94·5% (93·5–95·3), respectively. 224 (64·9%) of 345 breast cancer events were detected from emergency admissions or symptomatic referrals back to the hospital system, including 108 (61·7%) of 175 in the annual mammography group and 116 (68·2%) of 170 in the less frequent mammography group.
For patients aged 50 years or older and at 3 years post diagnosis, less frequent mammograms were non-inferior compared with annual mammograms for breast cancer-specific survival, recurrence-free interval, and overall survival, and should be considered for this population.
National Institute for Health Research Health Technology Assessment programme.
Journal Article
The Finding My Way UK Clinical Trial: Adaptation Report and Protocol for a Replication Randomized Controlled Efficacy Trial of a Web-Based Psychological Program to Support Cancer Survivors
by
Millington, Sue
,
Watson, Eila K
,
Jackson, Richard
in
Adaptation
,
Behavior modification
,
Breast cancer
2021
Background: Cancer survivors frequently report a range of unmet psychological and supportive care needs; these often continue after treatment has finished and are predictive of psychological distress and poor health-related quality of life. Web-based interventions demonstrate good efficacy in addressing these concerns and are more accessible than face-to-face interventions. Finding My Way (FMW) is a web-based, psycho-educational, and cognitive behavioral therapy intervention for cancer survivors developed in Australia. Previous trials have demonstrated that FMW is acceptable, highly adhered to, and effective in reducing the impact of distress on quality of life while leading to cost savings through health resource use reduction. Objective: This study aims to adapt the Australian FMW website for a UK cancer care context and then undertake a single-blinded, randomized controlled trial of FMW UK against a treatment-as-usual waitlist control. Methods: To an extent, our trial design replicates the existing Australian randomized controlled trial of FMW. Following a comprehensive adaptation of the web resource, we will recruit 294 participants (147 per study arm) from across clinical sites in North West England and North Wales. Participants will have been diagnosed with cancer of any type in the last 6 months, have received anticancer treatment with curative intent, be aged ≥16 years, be proficient in English, and have access to the internet and an active email address. Participants will be identified and recruited through the National Institute for Health Research clinical research network. Measures of distress, quality of life, and health economic outcomes will be collected using a self-report web-based questionnaire at baseline, midtreatment, posttreatment, and both 3- and 6-month follow-up. Quantitative data will be analyzed using intention-to-treat mixed model repeated measures analysis. Embedded semistructured qualitative interviews will probe engagement with, and experiences of using, FMW UK and suggestions for future improvements. Results: The website adaptation work was completed in January 2021. A panel of cancer survivors and health care professionals provided feedback on the test version of FMW UK. Feedback was positive overall, although minor updates were made to website navigation, inclusivity, terminology, and the wording of the Improving Communication and Sexuality and Intimacy content. Recruitment for the clinical trial commenced in April 2021. We aim to report on findings from mid-2023. Conclusions: Replication studies are an important aspect of the scientific process, particularly in psychological and clinical trial literature, especially in different geographical settings. Before replicating the FMW trial in the UK setting, content updating was required. If FMW UK now replicates Australian findings, we will have identified a novel and cost-effective method of psychosocial care delivery for cancer survivors in the United Kingdom. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN) 14317248; https://www.isrctn.com/ISRCTN14317248 International Registered Report Identifier (IRRID): DERR1-10.2196/31976
Journal Article
A qualitative study exploring the experience of the partners of cancer survivors and their views on the role of primary care
2012
Purpose
The partners of cancer survivors may experience distress, anxiety, fear and uncertainty whilst also caring for and supporting a partner who is ill. As they concentrate on the cancer survivor’s needs, their own needs may remain unaddressed. Primary care staff may be well placed to support partners as they are generally accessible and may have a better knowledge of the patient’s background and family relationships. However, their current involvement in the cancer survivor’s and partner’s cancer-related care is unclear. This study aimed to describe the experience of the partners of cancer survivors in dealing with cancer-related issues in the first 3 years post-diagnosis, their use of primary care services in relation to these issues and the barriers in doing so and their views on the role that primary care could potentially play in supporting them as carers during this period.
Methods
Semi-structured interviews with 22 partners of cancer survivors diagnosed within the last 3 years and recruited through six GP practices in the Thames Valley Region of the UK were analysed using the ‘framework’ approach to thematic analysis.
Results
Three issues were identified as of particular concern to partners: providing practical support, providing emotional support and managing their own health and well-being. Few partners had sought or received support from primary care specifically for cancer-related issues, indicating confidentiality, lack of knowledge of family relationships and the greater need of the cancer survivor as barriers. Most partners would welcome a proactive approach from primary care and felt that this would provide an opportunity to discuss issues they were concerned about.
Conclusions
Needs and concerns of the partners of cancer survivors in caring for patients are often not addressed. There is a scope for primary care to elicit these needs and provide greater support. Changes to clinical practice in primary care could lead to greater involvement of and to better outcomes for cancer survivors and their partners. A proactive approach to patients and their partners or other close family members at the time of diagnosis through an offer of support and the inclusion in a designated review appointment at the end of initial treatment would be useful.
Journal Article
Views of primary care physicians and oncologists on cancer follow-up initiatives in primary care: an online survey
by
Sugden, Elaine M.
,
Rose, Peter W.
,
Watson, Eila K.
in
Attitude of Health Personnel
,
Attitudes
,
Cancer
2010
Introduction
Primary care physicians (PCPs) are playing an increasing role in the follow-up of cancer in England. In 2003 a Cancer Care Review (CCR) was introduced to ensure contact between PCPs and cancer patients within 6 months of diagnosis. The NHS also intends to introduce survivorship care plans (SCP). The aims of this study were to: describe current practice and views in primary care with respect to the CCR and information provision from secondary to primary care following final discharge from hospital follow-up; and to seek views on the perceived usefulness, content, and feasibility of a SCP.
Methods
An on-line questionnaire survey of 100 oncologists and 200 PCPs.
Results
Half of PCPs undertook the CCR opportunistically, and only 64% had an agreed structure. Forty percent felt the CCR was useful for the doctor, and 60% useful for the patient. Most PCPs and oncologists think a SCP would be useful, but only 40% oncologists thought that it would be easy to produce. At discharge from follow-up, more than half of oncologists said they provided information on histology, treatment, requirements for screening and surveillance, and referral guidance. Less than half provide information on potential late effects and symptoms of recurrence. PCPs felt that information on all of these areas was important and that the information they receive is often inadequate.
Discussion/Conclusions
The CCR has not been implemented systematically. There is support for the introduction of a SCP and broad agreement on content. However, careful planning is needed to ensure all necessary information is included and to overcome barriers of implementation.
Implications for cancer survivors
Further research should explore what cancer survivors would find useful in a primary care-based CCR and what should be included in a SCP. This should be clearly communicated to the relevant health care professionals to maximise the benefits cancer survivors and their families gain from these policy initiatives.
Journal Article
Development and evaluation of a general information leaflet for women with a family history of breast cancer
by
Mackay, James
,
Watson, Eila K
,
Andermann, Anne A J
in
Adult
,
Aged
,
Breast Neoplasms - diagnosis
2002
The increasing number of women consulting primary care about a family history of breast cancer need basic information for use in a primary care setting.
A research-based leaflet was developed by assessing women's information needs and synthesizing the current best evidence addressing these needs. The leaflet was then evaluated with the intended audience.
Over 90% of respondents (RR 76%, n = 114/190) felt the leaflet covered what they wanted to know in an understandable and caring way.
This leaflet, which is informed by patients and evidence-based, meets the needs of women who have family histories of breast cancer.
Journal Article