The double-edged sword of ovarian cancer information for women at increased risk who have previously taken part in screening

Background: Women at increased risk who decide not to have, or to delay, risk-reducing salpingo-oophorectomy have to rely on early diagnosis through symptom awareness and presenting to primary care as soon as possible in the absence of screening. However, little is known about the acceptability to women of this strategy. We aimed to gain an in-depth understanding of women’s perceptions and previous experiences of ovarian cancer symptom management, and the influences on ovarian cancer awareness and anticipated symptom presentation. Method: Qualitative interviews were conducted with eight women at increased risk of ovarian cancer who had previously taken part in ovarian cancer screening and analysed using interpretative phenomenological analysis (IPA). Results: Familial experience of ovarian cancer and perceived personal risk shaped women’s perceptions and behavioural responses to disease threat. Ovarian cancer information was perceived to be a double-edged sword, regarded as either useful for increasing knowledge and confidence in discussing symptom concerns with health professionals or to be avoided due to fears about cancer. Conclusion: Women may be cautious about searching for information independently and in the absence of routine ovarian screening. Practice implications: Thought needs to be given to how best to create and disseminate credible ovarian cancer symptom information materials

Development of an ovarian cancer symptom awareness tool with tailored content for women at increased genetic risk of developing ovarian cancer

In the absence of a routine ovarian screening programme, ovarian cancer symptom awareness is a potential route to earlier symptomatic presentation and disease diagnosis. However, materials to support this strategy may need to be tailored according to risk. The work presented in this thesis identified the contributors to anticipated symptomatic presentation for women at increased genetic risk of ovarian cancer. A mixed-method approach was used to identify determinants of anticipated symptomatic presentation, and included a systematic search of existing ovarian cancer symptom awareness tools, cross-sectional surveys with two risk populations and qualitative interviews with women at increased genetic risk. Additionally, a systematic search and a virtual reference group were used to identify symptom content. Cognitive interviews were undertaken to pilot the draft tool for acceptability and usability with a sample of potential users and providers. Endorsing more benefits than barriers to presentation was associated with earlier anticipated presentation in both risk populations; however, differential effects of underlying health beliefs on anticipated presentation were also identified. In those at increased genetic risk, emotional (worry) rather than cognitive aspects of risk perception predominate in influencing earlier anticipated presentation. Interviews with women at increased genetic risk revealed that personal experience with ovarian cancer shaped beliefs about the disease. The identified health beliefs were incorporated into OvSTAT (ovarian cancer symptom awareness tool), with core content applicable for women from the general population and tailored content to address the specific needs of women at increased genetic risk. OvSTAT was well received in user testing. Overall, the findings suggest that the emotional representation of risk distinguishes earlier anticipated presentation in women at increased genetic risk from that in the general population. OvSTAT could be a mechanism through which appropriate symptomatic presentation is improved, by helping women to manage worry associated with their increased genetic risk status

Influences on anticipated time to ovarian cancer symptom presentation in women at increased risk compared to population risk of ovarian cancer

Background In the absence of routine ovarian cancer screening, promoting help-seeking in response to ovarian symptoms is a potential route to early diagnosis. The factors influencing women’s anticipated time to presentation with potential ovarian cancer symptoms were examined. Methods Cross-sectional questionnaires were completed by a sample of women at increased familial risk (n = 283) and population risk (n = 1043) for ovarian cancer. Measures included demographic characteristics, symptom knowledge, anticipated time to symptom presentation, and health beliefs (perceived susceptibility, worry, perceived threat, confidence in symptom detection, benefits and barriers to presentation). Structural equation modelling was used to identify determinants of anticipated time to symptomatic presentation in both groups. Results Associations between health beliefs and anticipated symptom presentation differed according to risk group. In increased risk women, high perceived susceptibility (r = .35***), ovarian cancer worry (r = .98**), perceived threat (r = −.18**), confidence (r = .16**) and perceiving more benefits than barriers to presentation (r = −.34**), were statistically significant in determining earlier anticipated presentation. The pattern was the same for population risk women, except ovarian cancer worry (r = .36) and perceived threat (r = −.03) were not statistically significant determinants. Conclusions Associations between underlying health beliefs and anticipated presentation differed according to risk group. Women at population risk had higher symptom knowledge and anticipated presenting in shorter time frames than the increased risk sample. The cancer worry component of perceived threat was a unique predictor in the increased risk group. In increased risk women, the worry component of perceived threat may be more influential than susceptibility aspects in influencing early presentation behaviour, highlighting the need for ovarian symptom awareness interventions with tailored content to minimise cancer-related worry in this population

Evaluation of a national lung cancer symptom awareness campaign in Wales

Background Lung cancer is the leading cause of cancer mortality in Wales. We conducted a before- and after- study to evaluate the impact of a four-week mass-media campaign on awareness, presentation behaviour and lung cancer outcomes. Methods Population-representative samples were surveyed for cough symptom recall/recognition and worry about wasting doctors’ time pre-campaign (June 2016; n = 1001) and post-campaign (September 2016; n = 1013). GP cough symptom visits, urgent suspected cancer (USC) referrals, GP-ordered radiology, new lung cancer diagnoses and stage at diagnosis were compared using routine data during the campaign (July–August 2016) and corresponding control (July–August 2015) periods. Results Increased cough symptom recall (p < 0.001), recognition (p < 0.001) and decreased worry (p < 0.001) were observed. GP visits for cough increased by 29% in the target 50+ age-group during the campaign (p < 0.001) and GP-ordered chest X-rays increased by 23% (p < 0.001). There was no statistically significant change in USC referrals (p = 0.82), new (p = 0.70) or early stage (p = 0.27) diagnoses, or in routes to diagnosis. Conclusions Symptom awareness, presentation and GP-ordered chest X-rays increased during the campaign but did not translate into increased USC referrals or clinical outcomes changes. Short campaign duration and follow-up, and the small number of new lung cancer cases observed may have hampered detection effects

Barriers to cancer symptom presentation among people from low socioeconomic groups: a qualitative study

Abstract Background Socioeconomic inequalities in cancer survival can in part be explained by long patient intervals among people from deprived groups; however, the reasons for this are unclear. This qualitative study explores the actual and anticipated barriers to cancer symptom presentation in the context of socioeconomic deprivation. Methods Thirty participants were recruited through the International Cancer Benchmarking Partnership Welsh database (n = 20), snowball sampling (n = 8) and community partners (n = 2). Semi-structured qualitative interviews were conducted with symptomatic and asymptomatic adults over the age of 50 years, who were identified as being from a low socioeconomic group based on multiple individual and group level indicators. Transcripts were analysed using a Framework approach based on the COM-B model (Capability, Opportunity, Motivation-Behaviour). Results There was evidence of poor awareness of non-specific cancer symptoms (Capability), fearful and fatalistic beliefs about cancer (Motivation), and various barriers to accessing an appointment with the family physician (Opportunity) and full disclosure of symptoms (Capability). These in combination were associated with a lengthened patient interval among participants. Social networks (Opportunity) were influential on the formation of knowledge and beliefs about cancer. Participants’ behavioural and normative beliefs were usually formed and reinforced by people they knew with cancer, and such beliefs were considered to lengthen the patient interval. Discussing symptoms with a family member or friend before a visit to the family physician was the norm, and could act as a barrier or facilitator depending on the quality of advice given (Opportunity). Economic hardship meant fulfilling basic day-to-day needs such as finding money for food were prioritised over medical help seeking (Opportunity). Conclusions The complex interaction between individual characteristics and socio-environmental factors is important for understanding cancer symptom presentation behaviour, especially in the context of socioeconomic deprivation. Interventions targeted at deprived communities should take into account the wider social influences on symptom presentation behaviour

Application of the pMHC array to characterise tumour antigen specific T cell populations in leukaemia patients at disease diagnosis

Immunotherapy treatments for cancer are becoming increasingly successful, however to further improve our understanding of the T-cell recognition involved in effective responses and to encourage moves towards the development of personalised treatments for leukaemia immunotherapy, precise antigenic targets in individual patients have been identified. Cellular arrays using peptide-MHC (pMHC) tetramers allow the simultaneous detection of different antigen specific T-cell populations naturally circulating in patients and normal donors. We have developed the pMHC array to detect CD8+ T-cell populations in leukaemia patients that recognise epitopes within viral antigens (cytomegalovirus (CMV) and influenza (Flu)) and leukaemia antigens (including Per Arnt Sim domain 1 (PASD1), MelanA, Wilms’ Tumour (WT1) and tyrosinase). We show that the pMHC array is at least as sensitive as flow cytometry and has the potential to rapidly identify more than 40 specific T-cell populations in a small sample of T-cells (0.8–1.4 x 106). Fourteen of the twenty-six acute myeloid leukaemia (AML) patients analysed had T cells that recognised tumour antigen epitopes, and eight of these recognised PASD1 epitopes. Other tumour epitopes recognised were MelanA (n = 3), tyrosinase (n = 3) and WT1126-134 (n = 1). One of the seven acute lymphocytic leukaemia (ALL) patients analysed had T cells that recognised the MUC1950-958 epitope. In the future the pMHC array may be used provide point of care T-cell analyses, predict patient response to conventional therapy and direct personalised immunotherapy for patients

New targets for therapy: antigen identification in adults with B-cell acute lymphoblastic leukaemia

Acute lymphoblastic leukaemia (ALL) in adults is a rare and difficult-to-treat cancer that is characterised by excess lymphoblasts in the bone marrow. Although many patients achieve remission with chemotherapy, relapse rates are high and the associated impact on survival devastating. Most patients receive chemotherapy and for those whose overall fitness supports it, the most effective treatment to date is allogeneic stem cell transplant that can improve overall survival rates in part due to a ‘graft-versus-leukaemia’ effect. However, due to the rarity of this disease, and the availability of mature B-cell antigens on the cell surface, few new cancer antigens have been identified in adult B-ALL that could act as targets to remove residual disease in first remission or provide alternative targets for escape variants if and when current immunotherapy strategies fail. We have used RT-PCR analysis, literature searches, antibody-specific profiling and gene expression microarray analysis to identify and prioritise antigens as novel targets for the treatment of adult B-ALL

Development of a behaviour change intervention to encourage timely cancer symptom presentation among people living in deprived communities using the Behaviour Change Wheel

We are grateful to the National Awareness and Early Diagnosis Initiative (NAEDI) for funding this work. The NAEDI funding consortium, under the auspices of the National Cancer Research Institute (NCRI), consists of Cancer Research UK; Department of Health (England); Economic and Social Research Council; Health and Social Care R&D Division, Public Health Agency (Northern Ireland); National Institute for Social Care and Health Research (Wales); and the Scottish Government. We would like to thank ABACus project management team members Tim Banks and Maura Matthews from Tenovus Cancer Care for their ongoing support and involvement in the project. The authors would also like to acknowledge the support of the ABACus steering group (Danny Antebi, Tracey Deacon, Karen Gully, Jane Hanson, Sharon Hillier, Alex Murray, Richard Neal, Gill Richardson, Mark Rogers, and Sara Thomas). Compliance with Ethical StandardsPeer reviewedPublisher PD