Dr Laura Ashley

OBJECTIVES: This study had three aims: 1) to investigate whether cardiovascular responses to laboratory stress and levels of emotional distress were attenuated following written emotional disclosure; 2) to test, in addition to the potential main effects, whether levels of alexithymia moderated the impact of writing; and 3) to examine whether alexithymics who successfully disclosed emotion in their essays would experience positive effects following writing. DESIGN AND METHODS: Eighty-seven participants wrote about their most stressful life experience or about a non-stressful experience, for 15 minutes, over 3 consecutive days. Two weeks later, blood pressure (BP) responses to laboratory stress and levels of emotional distress were assessed. Emotional characteristics of the disclosure essays were analysed with the Linguistic Inquiry and Word Count programme and alexithymia was assessed at baseline using the Toronto Alexithymia Scale-20. RESULTS: Analyses found no evidence in support of the main effects of disclosure on cardiovascular responses to stress or on emotional distress. However, alexithymia was found to moderate the impact of writing such that non-alexithymic participants in the experimental condition reported significantly lower emotional distress 2 weeks later. In addition, alexithymic participants who disclosed a greater number of negative when compared with positive emotion words exhibited reduced systolic and diastolic responses to stress. Conversely, non-alexithymic participants who disclosed more positive and less negative emotion words displayed attenuated BP reactivity to stress. CONCLUSIONS: The results of this exploratory study are important as they highlighted, in the absence of main effects, the importance of examining potential moderators of the emotional writing process. These findings may have implications for the development of cardiovascular health interventions.

Abstract

Caregivers have been found to experience high levels of depression and anxiety. This study explored the efficacy of two writing interventions aimed at reducing psychological distress in informal caregivers and examined the moderating effects of alexithymia. Caregivers (N = 150) were randomly assigned to (1) write about the stress related to being a caregiver, (2) write about positive life experiences or (3) write about a control topic for 20 min on 3 days at home. Depression and anxiety symptoms were assessed at baseline, 2 weeks, 2 months and 6 months post‐intervention. Analysis of variance for a mixed design revealed no main effects of writing condition on the follow‐up measures. However, among caregivers with lower scores on alexithymia, those who wrote about positive experiences reported less anxiety and/or depression on follow‐ups at 2 weeks, at 2 months and at 6 months. Moreover, in the control condition, less anxiety was reported by caregivers with lower scores on alexithymia at 2 weeks and at 6 months. No effects of stress disclosure were observed; therefore, writing about caregiver stress should not be encouraged in this vulnerable group. These findings highlight the importance of examining moderating factors, such as individual differences variables as well as exploring the efficacy of alternative writing interventions. Copyright © 2011 John Wiley & Sons, Ltd.

Failure Mode and Effects Analysis (FMEA) is a proactive risk assessment tool used to identify potential vulnerabilities in complex, high-risk processes and to generate remedial actions before the processes result in adverse events. FMEA is increasingly used to proactively assess and improve the safety of complex health care processes such as drug administration and blood transfusion. A central feature of FMEA is that it is undertaken by a multidisciplinary team, and because it entails numerous analytical steps, it takes a series of several meetings. Composing a team of busy health care professionals with the appropriate knowledge, skill mix, and logistical availability for regular meetings is, however, a serious challenge. Despite this, information and advice on FMEA team assembly and meetings scheduling are scarce and diffuse and often presented without the accompanying rationale.

To empirically compare 2 different commonly used failure mode and effects analysis (FMEA) scoring procedures with respect to their resultant failure mode scores and prioritization: a mathematical procedure, where scores are assigned independently by FMEA team members and averaged, and a consensus procedure, where scores are agreed on by the FMEA team via discussion.

To assess and improve the safety of hospital-based adult chemotherapy administration.

BACKGROUND: Cancer survivors can face significant physical and psychosocial challenges; there is a need to identify and predict which survivors experience what sorts of difficulties. As highlighted in the UK National Cancer Survivorship Initiative, routine post-diagnostic collection of patient reported outcome measures (PROMs) is required; to be most informative, PROMs must be linked and analysed with patients' diagnostic and treatment information. We have designed and built a potentially cost-efficient UK-scalable electronic system for collecting PROMs via the internet, at regular post-diagnostic time-points, for linking these data with patients' clinical data in cancer registries, and for electronically managing the associated patient monitoring and communications; the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. This study aims to test the feasibility of the ePOCS system, by running it for 2 years in two Yorkshire NHS Trusts, and using the Northern and Yorkshire Cancer Registry and Information Service. METHODS/DESIGN: Non-metastatic breast, colorectal and prostate cancer patients (largest survivor groups), within 6 months post-diagnosis, will be recruited from hospitals in the Yorkshire Cancer Network. Participants will be asked to complete PROMS, assessing a range of health-related quality-of-life outcomes, at three time-points up to 15 months post-diagnosis, and subsequently to provide opinion on the ePOCS system via a feedback questionnaire. Feasibility will be examined primarily in terms of patient recruitment and retention rates, the representativeness of participating patients, the quantity and quality of collected PROMs data, patients' feedback, the success and reliability of the underpinning informatics, and the system running costs. If sufficient data are generated during system testing, these will be analysed to assess the health-related quality-of-life outcomes reported by patients, and to explore if and how they relate to disease, treatment and/or individual differences characteristics. DISCUSSION: There is currently no system in the UK for collecting PROMs online and linking these with patients' clinical data in cancer registries. If feasible, ePOCS has potential to provide an affordable UK-scalable technical platform to facilitate and support longitudinal cohort research, and improve understanding of cancer survivors' experiences. Comprehensive understanding of survivorship difficulties is vital to inform the development and provision of supportive services and interventions.

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.

The Social Difficulties Inventory (SDI-21) assesses everyday problems experienced by cancer patients, including difficulties with self-care, work and relationships. Early development and psychometric evaluation studies have validated the SDI-21 for computer administration. However, several recent studies have administered the SDI-21 on paper. We sought to test the score equivalence of electronic and paper versions of the SDI-21.

Writing expressively about distressing experiences has been found to have beneficial health effects. This study examined the effects of written emotional disclosure (WED) interventions on the self-reported health and job satisfaction of school teachers, and compared standard WED instructions with two commonly used more prescriptive variants. The study also controlled and measured the between-condition comparability of participants' post-writing benefit expectations. Teachers (final N = 77) were randomized to a control writing condition or one of three WED conditions that varied the number and/or type of experiences participants wrote about. All teachers wrote for 20 min on three consecutive days at home. Psychological health, physical health, and job satisfaction were assessed at baseline, two weeks, two months, and six months post-intervention. Participants' expectations of benefit following writing were equivalent across conditions. There was no significant effect of any of the three WED interventions, compared to control writing, on psychological or physical health or job satisfaction. There was, however, a significant and sizeable improvement in physical health across writing conditions from baseline to two-month follow-up, and this was maintained at six months. The findings show that control writing can produce comparable expectations of benefit to WED, and are consistent with the possibility that benefit expectancies can effect health improvements following disclosure or control writing. Most previous studies have examined WED with students or patient groups, and the findings also raise an important question about the feasibility of multi-session writing interventions for mid-life working samples. Further studies with occupational groups are warranted, as is further investigation into the role of positive expectancies in WED effects.

Background: Routine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries. Objective: This study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis. Methods: Patients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system. Results: ePOCS ran efficiently with few technical problems. Patient participation was 55.21% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4%, 490/798) than by telephone (48.8%, 21/43) or letter (41.0%, 125/305). Older and less affluent patients were less likely to join (both P<.001). Most non-consenters (71.1%, 234/329) cited information technology reasons (ie, difficulty using a computer). Questionnaires were fully or partially completed by 85.1% (541/636) of invited participants at T1 (80 questions total), 70.0% (442/631) at T2 (102-108 questions), and 66.3% (414/624) at T3 (148-154 questions), and fully completed at all three time-points by 57.6% (344/597) of participants. Reminders (mainly via email) effectively prompted responses. The PROs were successfully linked with cancer registry data for 100% of patients (N=636). Participant feedback was encouraging and positive, with most patients reporting that they found ePOCS easy to use and that, if asked, they would continue using the system long-term (86.2%, 361/419). ePOCS was not administratively burdensome to run day-to-day, and patient-initiated inquiries averaged just 11 inquiries per month. Conclusions: The informatics underlying the ePOCS system demonstrated successful proof-of-concept – the system successfully linked PROs with registry data for 100% of the patients. The majority of patients were keen to engage. Participation rates are likely to improve as the Internet becomes more universally adopted. ePOCS can help overcome the challenges of routinely collecting PROs and linking with clinical data, which is integral for treatment and supportive care planning and for targeting service provision.

BACKGROUND: Understanding the psychosocial challenges of cancer survivorship, and identifying which patients experience ongoing difficulties, is a key priority. The ePOCS (electronic patient-reported outcomes from cancer survivors) project aims to develop and evaluate a cost-efficient, UK-scalable electronic system for collecting patient-reported outcome measures (PROMs), at regular post-diagnostic timepoints, and linking these with clinical data in cancer registries. METHODS: A multidisciplinary team developed the system using agile methods. Design entailed process mapping the system's constituent parts, data flows and involved human activities, and undertaking usability testing. Informatics specialists built new technical components, including a web-based questionnaire tool and tracking database, and established component-connecting data flows. Development challenges were overcome, including patient usability and data linkage and security. RESULTS: We have developed a system in which PROMs are completed online, using a secure questionnaire administration tool, accessed via a public-facing website, and the responses are linked and stored with clinical registry data. Patient monitoring and communications are semiautomated via a tracker database, and patient correspondence is primarily Email-based. The system is currently honed for clinician-led hospital-based patient recruitment. CONCLUSIONS: A feasibility test study is underway. Although there are possible challenges to sustaining and scaling up ePOCS, the system has potential to support UK epidemiological PROMs collection and clinical data linkage.

Despite reported differences in breastfeeding rates amongst women of different ethnic groups, little research has investigated whether the thoughts and feelings (social cognitions) of women from these different groups during pregnancy influence their later breastfeeding behaviour.

A priority of the UK National Cancer Survivorship Initiative is to increase collection of patient-reported outcome measures (PROMs) longitudinally post-diagnosis. This study aimed to gather cancer patients' and clinicians' opinions and preferences about the best time, in the secondary care pathway, to approach patients about joining longitudinal observational PROMs-based (LO-PROMs) research.

Failure Modes and Effects Analysis (FMEA) is a prospective quality assurance methodology increasingly used in healthcare, which identifies potential vulnerabilities in complex, high-risk processes and generates remedial actions. We aimed, for the first time, to apply FMEA in a social care context to evaluate the process for recognising and referring children exposed to domestic abuse within one Midlands city safeguarding area in England. A multidisciplinary, multi-agency team of 10 front-line professionals undertook the FMEA, using a modified methodology, over seven group meetings. The FMEA included mapping out the process under evaluation to identify its component steps, identifying failure modes (potential errors) and possible causes for each step and generating corrective actions. In this article, we report the output from the FMEA, including illustrative examples of the failure modes and corrective actions generated. We also present an analysis of feedback from the FMEA team and provide future recommendations for the use of FMEA in appraising social care processes and practice. Although challenging, the FMEA was unequivocally valuable for team members and generated a significant number of corrective actions locally for the safeguarding board to consider in its response to children exposed to domestic abuse.

OBJECTIVE: We aim to describe the economic burden of UK cancer survivorship for breast, colorectal and prostate cancer patients treated with curative intent, 1 year post-diagnosis. METHODS: Patient-level data were collected over a 3-month period 12-15 months post-diagnosis to estimate the monthly societal costs incurred by cancer survivors. Self-reported resource utilisation data were obtained via the electronic Patient-reported Outcomes from Cancer Survivors system and included community-based health and social care, medications, travel costs and informal care. Hospital costs were retrieved through data linkage. Multivariate regression analysis was used to examine cost predictors. RESULTS: Overall, 298 patients were included in the analysis, including 136 breast cancer, 83 colorectal cancer and 79 prostate cancer patients. The average monthly societal cost was $US409 (95%CI: $US316-$US502) [mean: £260, 95%CI: £198-£322] and was incurred by 92% of patients. This was divided into costs to the National Health Service (mean: $US279, 95%CI: $US207-$US351) [mean: £177, 95%CI: £131-£224], patients' out-of-pocket (OOP) expenses (mean: $US40, 95%CI: $US15-$US65) [mean: £25, 95%CI: £9-£42] and the cost of informal care (mean: $US110, 95%CI: $US57-$US162) [mean: £70, 95%CI: £38-£102]. The distribution of costs was skewed with a small number of patients incurring very high costs. Multivariate analyses showed higher societal costs for breast cancer patients. Significant predictors of OOP costs included age and socioeconomic deprivation. CONCLUSIONS: This study found the economic burden of cancer survivorship is unevenly distributed in the population and that cancer survivors may still incur substantial costs over 1 year post-diagnosis. In addition, this study illustrates the feasibility of using an innovative online data collection platform to collect patient-reported resource utilisation information. Copyright © 2015 John Wiley & Sons, Ltd.

BACKGROUND: The rising financial burden of cancer on health-care systems worldwide has led to the increased demand for evidence-based research on which to base reimbursement decisions. Economic evaluations are an integral component of this necessary research. Ascertainment of reliable health-care cost and quality-of-life estimates to inform such studies has historically been challenging, but recent advances in informatics in the United Kingdom provide new opportunities. METHODS: The costs of hospital care for breast, colorectal and prostate cancer disease-free survivors were calculated over 15 months from initial diagnosis of cancer using routinely collected data within a UK National Health Service (NHS) Hospital Trust. Costs were linked at patient level to patient-reported outcomes and registry-derived sociodemographic factors. Predictors of cost and the relationship between costs and patient-reported utility were examined. RESULTS: The study population included 223 breast cancer patients, 145 colorectal and 104 prostate cancer patients. The mean 15-month cumulative health-care costs were £12 595 (95% CI £11 517-£13 722), £12 643 (£11 282-£14 102) and £3722 (£3263-£4208), per-patient respectively. The majority of costs occurred within the first 6 months from diagnosis. Clinical stage was the most important predictor of costs for all cancer types. EQ-5D score was predictive of costs in colorectal cancer but not in breast or prostate cancer. CONCLUSION: It is now possible to evaluate health-care cost using routine NHS data sets. Such methods can be utilised in future retrospective and prospective studies to efficiently collect economic data.

Objective Studies have found that illness perceptions explain significant variance in health outcomes in numerous diseases. However, most of the research is cross‐sectional and non‐oncological. We examined, for the first time in breast, colorectal and prostate cancer patients, if cognitive and emotional illness perceptions near diagnosis predict future multidimensional health‐related quality of life (HRQoL). Methods UK‐based patients (N = 334) completed the illness perception questionnaire‐revised within 6 months post‐diagnosis and the quality of life in adult cancer survivors scale 15 months post‐diagnosis. Sociodemographic and clinical data were obtained from medical records. Hierarchical multiple regression analyses were conducted. Results The sociodemographic and clinical factors collectively significantly predicted 8/12 HRQoL domains, although for 5/8 accounted for <10% of the variance. For all 12 HRQoL domains, illness perceptions collectively explained significant substantial additional variance (∆R2 range: 5.6–27.9%), and a single illness perception questionnaire‐revised dimension was the best individual predictor of 9/12 HRQoL domains. The consequences dimension independently predicted 7/12 HRQoL domains; patients who believed their cancer would have a more serious negative impact on their life reported poorer future HRQoL. The emotional representations and identity dimensions also predicted multiple HRQoL domains. Conclusions Future research should focus on realising the potential of illness perceptions as a modifiable target for and mediating mechanism of interventions to improve patients' HRQoL.

Written emotional disclosure (WED) has beneficial effects on health outcomes. However, its effectiveness is influenced by a number of variables. This exploratory study tested whether trait rumination, which comprises brooding, a maladaptive component, and reflection, an adaptive component, moderated the effects of WED on ambulatory blood pressure (ABP) in female participants. Fifty-two participants were randomized to write about their most stressful/traumatic life experience(s) or non-emotive topics, for 20 minutes, on 3 consecutive days. Two weeks and 14 weeks later, ABP was recorded over a single day. Using hierarchical linear modelling, an effect of condition was found at 2 weeks but not at 14 weeks indicating that higher levels of ABP were observed following WED. There was also a significant condition by brooding interaction at two weeks such that higher ABP was observed in low brooders in the WED condition compared with low brooders in the control condition. However, within the WED condition, the lowest ABP was exhibited by participants high in brooding. The findings indicated that WED led to short-lived increases in ABP which disappeared in the medium term. Researchers ought to build upon this exploratory study and investigate further the potential moderating role of brooding within WED. Individual differences in brooding may account for (some of) the mixed and inconsistent findings in past WED research.

Objective: The aim of this paper is to provide new insights into the psychometrics of the Quality of Life in Adult Cancer Survivors (QLACS) questionnaire, originally developed for longer-term survivors 5 + years post-diagnosis. Specifically, to examine the classic psychometric properties of QLACS in a sample of shorter-term survivors, and to undertake Rasch analysis to explore the extent to which the Generic and Cancer-Specific summary scales (and separately-analysed Benefits of cancer domain) are unidimensional, with linear measurement properties and no differential item functioning (DIF). Methods: Patients with potentially curable breast, colorectal or prostate cancer completed QLACS 15 months post-diagnosis (N = 407). Score distributions, floor and ceiling effects, internal reliability, and feasibility (completion time and missing data) were examined. Rasch analysis included examination of item fit, DIF and unidimensionality. Results: The QLACS domains and summary scales had very similar score distributions and classic psychometric properties (no ceiling effects, majority no floor effects, acceptable reliability) to those found in development work with longer-term survivors. Median completion time was 10 min and total missing data 2.3%. The Generic summary scale contained several misfitting items and exhibited multidimensionality. The Cancer-Specific summary scale and Benefits domain showed fit to the Rasch model and demonstrated unidimensionality and no DIF, with just one or no item modifications respectively. Conclusion: QLACS demonstrates similarly good classic psychometric properties among shorter-term as among longer-term survivors, and has good feasibility. The Cancer-Specific summary scale and Benefits domain showed an impressive degree of fit to the Rasch model, although the validity of computing the Generic summary score was not supported. © 2014.

Objective To provide new insights into the psychometrics of the revised Illness Perception Questionnaire (IPQ-R) in cancer patients. To undertake, for the first time using data from breast, colorectal and prostate cancer patients, a confirmatory factor analysis (CFA) to assess the validity of the IPQ-R's core seven-factor structure. Also, for the first time in any illness group, to undertake Rasch analysis to explore the extent to which the IPQ-R factors form unidimensional scales, with linear measurement properties and no Differential Item Functioning (DIF). Methods Patients with potentially curable breast, colorectal or prostate cancer, within 6 months post-diagnosis, completed the IPQ-R online (N = 531). CFA was conducted, including multi-sample analysis, and for each IPQ-R factor fit to the Rasch model was assessed by examining, amongst other things, item fit, DIF and unidimensionality. Results The CFA showed a moderate fit of the data to the IPQ-R model, and stability across diagnosis, although fit was significantly improved following the removal of selected items. All seven factors achieved fit to the Rasch model, and exhibited unidimensionality and minimal DIF, although in most cases this was after some item rescoring and/or deletion. In both analyses, IPQ-R items 12, 18 and 24 were indicated as misfitting and removed. Conclusion Given the rigorous standard of Rasch measurement, and the generic nature of the IPQ-R, it stood up well to the demands of the Rasch model in this study. Importantly, the results show that with some relatively minor, pragmatic modifications the IPQ-R could possess Rasch-standard measurement in cancer patients.

BACKGROUND: The aim of the study was to understand the characteristics of the International Federation of Psycho-oncology Societies (FPOS) and possible disparities in providing psychosocial care in countries where psycho-oncology societies exist. METHOD: A survey was conducted among 29 leaders of 28 countries represented within the FPOS by using a questionnaire covering (i) characteristics of the society; (ii) characteristics of the national health care system; (iii) level of implementation of psycho-oncology; and (iv) main problems of psycho-oncology in the country. RESULTS: Twenty-six (90%) FPOS returned the questionnaires. One-third reported to have links with and support from their government, while almost all had links with other scientific societies. The FPOS varied in their composition of members' professions. Psychosocial care provision was covered by state-funded health services in a minority of countries. Disparities between countries arose from different causes and were problematic in some parts of the world (eg, Africa and SE Asia). Elsewhere (eg, Southern Europe and Eastern Europe), austerity policies were reportedly responsible for resource shortages with negative consequences on psychosocial cancer care. Half of FPOS rated themselves to be integrated into mainstream provision of care, although lack of funding was the most common complain. CONCLUSIONS: The development and implementation of psycho-oncology is fragmented and undeveloped, particularly in some parts of the world. More effort is needed at national level by strong coalitions with oncology societies, better national research initiatives, cancer plans, and patient advocacy, as well as by stronger partnership with international organizations (eg, World Health Organization and Union for International Cancer Control).

OBJECTIVE: To synthesise qualitative evidence related to barriers and facilitators of flexible sigmoidoscopy screening (FSS) intention and uptake, particularly within low socio-demographic uptake groups. FSS uptake is lower amongst women, lower socio-economic status (SES), and Asian ethnic groups within the United Kingdom (UK) and United States of America. METHODS: A total of 12 168 articles were identified from searches of four databases: EMBASE, MEDLINE, PsycINFO and Web of Science. Eligibility criteria included: individuals eligible to attend FSS and empirical peer-reviewed studies that analysed qualitative data. The Critical Appraisal Skills Program tool evaluated the methodological quality of included studies, and thematic synthesis was used to analyse the data. RESULTS: Ten qualitative studies met the inclusion criteria. Key barriers to FSS intention and uptake centred upon procedural anxieties. Women, including UK Asian women, reported shame and embarrassment, anticipated pain, perforation risk, and test preparation difficulties to elevate anxiety levels. Religious and cultural-influenced health beliefs amongst UK Asian groups were reported to inhibit FSS intention and uptake. Competing priorities, such as caring commitments, particularly impeded women's ability to attend certain FSS appointments. The review identified a knowledge gap concerning factors especially associated with FSS participation amongst lower SES groups. CONCLUSIONS: Studies mostly focussed on barriers and facilitators of intention to participate in FSS, particularly within UK Asian groups. To determine the barriers associated with FSS uptake, and further understand how screening intention translates to behaviour, it is important that future qualitative research is equally directed towards factors associated with screening behaviour.

Objective To investigate the effect of two brief self-affirmation interventions, immediately prior to reading standard information about bowel cancer screening, on state anxiety, message acceptance and behavioural intention to screen for bowel cancer. Methods 242 adults aged 49 were randomised to one of two self-affirmation interventions (health or values) or one of two control conditions, before reading an NHS England bowel cancer screening leaflet. Participant friend and family history of bowel cancer, state anxiety, message acceptance, behavioural intention to screen, trait self-esteem and spontaneous self-affirmation were measured. Data were analysed using between-participants analysis of variance, planned contrasts and moderated regression. Results No main effects of experimental condition on levels of state anxiety, message acceptance and behavioural intention were found. However, planned contrasts showed participants who self-affirmed about their health or values (conditions-collapsed) were significantly less anxious and reported significantly higher behavioural intentions compared to participants in the controls (conditions-collapsed). Irrespective of condition, higher levels of spontaneous self-affirmation and trait self-esteem were correlated with lower anxiety, higher intentions, and message acceptance. Conclusion There was some evidence of the effect of health-based self-affirmation on lowering anxiety; however, further research is needed to explore the effectiveness of different self-affirmation interventions in larger samples.

Objective To investigate whether modifications made to the current National Health Service (NHS) invitation letter for follow-up colonoscopy examination affect participant state anxiety and behavioural intentions to attend. Methods Five hundred and thirty-eight adults of bowel cancer-eligible screening age (56–74) were randomized to receive the current NHS invitation letter or the modified version of the letter as a hypothetical scenario. Modifications to the letter included fewer uses of the term cancer and awareness of alternative screening options. The history of the colonoscopy invitation, anticipated state anxiety, behavioural intention to attend the nurse appointment, and colonoscopy concerns upon reading the letter were measured. Results Behavioural intentions were high in both conditions; however, participants reading the current letter reported significantly higher behavioural intentions compared to the modified letter. There was no main effect of previous invite status or interaction between previous invite status and letter condition on behavioural intentions. However, the effect of the letter on levels of anxiety depended on the participant's invitation history. Those never invited for a colonoscopy were more anxious when reading the modified letter compared to the current letter. Conversely, previous colonoscopy invitees were less anxious following reading the modified letter than those reading the current letter. Those never invited for a colonoscopy were more concerned about embarrassment and test invasiveness. All findings remained the same when controlling for age and education. Conclusion Modifications to the invitation letter were not beneficial to levels of screening intention or anxiety.

OBJECTIVE: To further understand the barriers and facilitators to attending colonoscopy examination following a positive routinely offered stool test result, from the perspective of patients and Specialist Screening Practitioners (SSPs). METHODS: Qualitative semi-structured interviews were conducted. Participants (N = 32) were patients (n = 20) who, as part of the Bowel Cancer Screening Programme (BCSP) in England, were invited to attend a colonoscopy examination, and SSPs (n = 12), who worked for the BCSP in England. Framework analysis included inductive and deductive coding. RESULTS: Anxiety was as a key barrier cited by patients and SSPs, arising from the moment the patient received the invitation letter. Notably, procedural-related anxieties centred upon the fear of pain and discomfort and test invasiveness. The role of family, friends and the SSP were recognised by patients and SSPs to facilitate participation. Many patients, yet not SSPs, emphasised an obligation to attend all medical test invitations. CONCLUSION: Practically orientated strategies suggested by patients and SSPs address the patient barriers identified. These include earlier information to patients on the option of sedation for pain relief, earlier notification of potential financial support for patients unable to fund their own travel costs, and fewer uses of the term cancer within written materials.

Background: Telehealth approaches are increasingly being used to support patients with advanced diseases, including cancer. Evidence suggests that telehealth is acceptable to most patients; however, the extent of and factors influencing patient engagement remain unclear. Objective: The aim of this review is to characterize the extent of engagement with telehealth interventions in patients with advanced, incurable cancer reported in the international literature. Methods: This systematic review was registered with PROSPERO (International Prospective Register of Systematic Reviews) and is reported in line with PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 guidelines. A comprehensive search of databases was undertaken for telehealth interventions (communication between a patient with advanced cancer and their health professional via telehealth technologies), including MEDLINE, Embase, CINAHL, PsycINFO, Cochrane Library, Sociological Abstracts, and Web of Science, from the inception of each electronic database up until December 31, 2020. A narrative synthesis was conducted to outline the design, population, and context of the studies. A conceptual framework of digital engagement comprising quantitative behavioral measures (frequency, amount, duration, and depth of use) framed the analysis of engagement with telehealth approaches. Frequency data were transformed to a percentage (actual patient engagement as a proportion of intended engagement), and the interventions were characterized by intensity (high, medium, and low intended engagement) and mode of delivery for standardized comparisons across studies. Results: Of the 19,676 identified papers, 40 (0.2%) papers covering 39 different studies were eligible for inclusion, dominated by US studies (22/39, 56%), with most being research studies (26/39, 67%). The most commonly reported measure of engagement was frequency (36/39, 92%), with substantial heterogeneity in the way in which it was measured. A standardized percentage of actual patient engagement was derived from 17 studies (17/39, 44%; n=1255), ranging from 51% to 100% with a weighted average of 75.4% (SD 15.8%). A directly proportional relationship was found between intervention intensity and actual patient engagement. Higher engagement occurred when a tablet, computer, or smartphone app was the mode of delivery. Conclusions: Understanding engagement for people with advanced cancer can guide the development of telehealth approaches from their design to monitoring as part of routine care. With increasing telehealth use, the development of meaningful and context- and condition-appropriate measures of telehealth engagement is needed to address the current heterogeneity in reporting while improving the understanding of optimal implementation of telehealth for oncology and palliative care.

Objective In the United Kingdom (UK), 1 in 13 people living with dementia also have cancer. At some point, 41.3% of this population group will require care home support. Limited research has examined the care and support needs of people with dementia and comorbid cancer (DCC) in nursing homes (NHs). This study aimed to explore the care experiences of NH residents with DCC, their families, nursing home staff (NHS) and healthcare professionals (HCPs), and to identify challenges and good practices, to develop recommendations for practice improvement. Methods A focussed ethnography using interviews, observations, informal conversations, and review of care plan documentation. Data were analysed using ethnographically informed reflexive thematic analysis. Results Eight HCPs, Six NHS, 5 family caregivers and 7 residents with DCC were recruited from five NHs in Northern England. Two themes were developed: Complexities around cancer referral and treatment decision‐making and Relative invisibility of a resident's clinical cancer diagnosis. Findings suggested residents with DCC were not included in best interest decision‐making due to the potential distress knowing about a cancer diagnosis would cause. Families, HCPs and NH staff made collective decisions on the behalf of residents. Often cancer referral was deemed not appropriate. Thus, people with dementia had a clinical‐only cancer diagnosis, resulting in limited formal information about the cancer in care documentation and staff knowledge. Potential consequences of having a clinical‐only cancer diagnosis included: misattributing cancer symptoms to dementia, reactive care responses to cancer symptoms and the possibility of inadequately managed cancer symptoms. Conclusions Implementing earlier discussions about feasible care outcomes is crucial. These conversations should include considerations around hospital referral for oncology care or care through palliation in the NH. Without appropriate recognition of a clinical‐only cancer diagnosis and support for staff it could lead to advancement of symptoms that might be challenging and less well managed. We outline several recommendations to support NHS to deliver person‐centred care to residents with DCC.

INTRODUCTION: A large and growing number of patients with cancer have comorbid diabetes. Cancer and its treatment can adversely impact glycaemic management and control, and there is accumulating evidence that suboptimal glycaemic control during cancer treatment is a contributory driver of worse cancer-related outcomes in patients with comorbid diabetes. Little research has sought to understand, from the perspective of patients and clinicians, how and why different aspects of cancer care and diabetes care can complicate or facilitate each other, which is key to informing interventions to improve diabetes management during cancer treatments. This study aims to identify and elucidate barriers and enablers to effective diabetes management and control during cancer treatments, and potential intervention targets and strategies to address and harness these, respectively. METHODS AND ANALYSIS: Qualitative interviews will be conducted with people with diabetes and comorbid cancer (n=30-40) and a range of clinicians (n=30-40) involved in caring for this patient group (eg, oncologists, diabetologists, specialist nurses, general practitioners). Semistructured interviews will examine participants' experiences of and perspectives on diabetes management and control during cancer treatments. Data will be analysed using framework analysis. Data collection and analysis will be informed by the Theoretical Domains Framework, and related Theory and Techniques Tool and Behaviour Change Wheel, to facilitate examination of a comprehensive range of barriers and enablers and support identification of pertinent and feasible intervention approaches. Study dates: January 2021-January 2023. ETHICS AND DISSEMINATION: The study has approval from National Health Service (NHS) West Midlands-Edgbaston Research Ethics Committee. Findings will be presented to lay, clinical, academic and NHS and charity service-provider audiences via dissemination of written summaries and presentations, and published in peer-reviewed journals. Findings will be used to inform development and implementation of clinical, health services and patient-management intervention strategies to optimise diabetes management and control during cancer treatments.

Objective: Studies on psychological techniques to reduce stroke-related anxiety and/or distress are limited. More scarce is research on tailoring such techniques to suit stroke survivors’ needs, including the needs of those with aphasia. To address this gap, we report two sequential studies. Study 1 explored preferred psychological techniques (i.e., mindfulness and relaxation) and ways to modify them for stroke survivors, including those with communication difficulties. Study 2 examined the feasibility and acceptability of these modified techniques with a new sample of survivors. Design: Mixed-methods using qualitative and quantitative approach in both studies.

Purpose of review This narrative review examines recent research on end of life (EOL) care for people with dementia and comorbid cancer, highlighting the complexity and challenge of providing effective EOL care for this group and areas of interest for future research. Recent findings People with cancer and dementia and their family/supporters have more complex care and support needs at EOL that are less well met than those of older adults with cancer alone, including questionable use of aggressive EOL care interventions, poorer access to specialist palliative care teams and poor pain management. Those diagnosed with dementia at the same time as, or after their cancer diagnosis, are at greater risk of aggressive EOL care and EOL cancer treatment and care plans that are not able to meet their care needs as dementia progresses. Summary There is a lack of research on EOL care for people with cancer and dementia. There is little understanding of what good care for this population looks like and if and how EOL care can best meet the needs of people with cancer and dementia or their carers/supporters. More research is needed to inform improved care for this population.

Background: Cancer and dementia are common in older people and management of the conditions as comorbidities can be challenging, yet little is known about the size or characteristics of this group. We aimed to estimate the prevalence, characteristics and general practice resource usage of people living with both conditions in England. Methods: Anonymised electronic healthcare records from 391 National Health Service general practices across England using the TPP SystmOne general practice system were obtained from ResearchOne. Data included demographic and clinical characteristics, and general practice healthcare useage (appointments, prescriptions, referrals and secondary care contacts) for people aged 50 and over with a cancer and/or dementia diagnosis consistent with the Quality and Outcomes Framework between 2005 and 2016. Multi-level negative binomial regression was used to analyse the number of general practice appointments. Results: Data from 162,371 people with cancer and/or dementia were analysed; 3,616 (2.2%) people were identified as having comorbid cancer and dementia. Of people with cancer, 3.1% also had dementia, rising to 7.5% (1 in 13 people) in those aged 75 and over. Fewer people with both conditions were female (50.7%) compared to those with dementia alone (65.6%) and those with comorbid cancer and dementia were older than those with cancer alone [mean ages 83 (sd=7), 69 (sd=12) respectively]. Those with both conditions were less likely to have lung cancer than those with cancer alone (7.5% vs. 10.3%) but more likely to have prostate cancer (20.9% vs. 15.8%). Additional comorbidities were more prevalent for those with both conditions than those with cancer or dementia alone (68.4% 54 vs. 50.2% vs. 54.0%). In the year following the first record of either condition, people with cancer and dementia had 9% more general practice appointments (IRR:1.09, 95% 56 CI:1.01-1.17) than those with cancer alone and 37% more appointments than those with dementia alone (IRR: 1.37, 95% CI: 1.28-1.47). Conclusions: A significant number of people are living with comorbid cancer and dementia in England. This group have additional comorbidity and higher general practice usage than those with cancer/dementia alone. The needs of this group should be considered in future general practice care planning and research.

BACKGROUND: A growing number of people are living with comorbid dementia and cancer (CDC), and they are particularly likely to require support from family caregivers. Carers of people with CDC play a vital supportive role but have reported unmet support needs, including a lack of CDC-specific information resources and peer support. A targeted online peer support forum may provide an accessible way to help address unmet needs of carers of people with CDC. OBJECTIVE: This study aimed to explore the types and frequency of social support provided on an online peer support forum for caregivers of people with CDC, hosted by a dementia charity in the United Kingdom. METHODS: We conducted a mixed methods study using descriptive statistics and qualitative content analysis. All posts (N=893) on the forum since its launch in November 2018 to April 2024 were exported into Microsoft Excel for analysis. Descriptive statistics were used to examine forum use and user characteristics. Deductive content analysis was conducted to explore the types and frequency of social support provided on the forum. Posts were analyzed according to an adapted version of Cutrona and Suhr's Social Support Behavior Code, consisting of 5 main categories of support: informational, emotional, esteem, network, and tangible. Coding was completed independently by 2 coders, and any coding disagreements were resolved by reaching a consensus through discussion. RESULTS: A total of 258 usernames posted on the forum since its inception. There were 893 posts; 583 (65.3%) were coded as providing social support. All 5 Social Support Behavior Code categories were present in the forum posts. Informational support was the most common type of social support provided on the forum, which mostly involved providing suggestions for caregiving and coping strategies and sharing personal experiences that provide CDC-specific knowledge or insight. This was followed by emotional support, which consisted mostly of expressing shared understanding and empathy for caregivers in their unique situation of CDC and providing expressions of care for the recipient's well-being. Esteem, network, and tangible support were less common, though they included providing validation and relief of blame to other caregivers, typically in decision-making regarding cancer treatment; reminding caregivers that others were available on the forum for support; and expressing willingness to answer questions about their CDC caregiving experience. CONCLUSIONS: This study demonstrates the use and value of a CDC-specific online forum as a source of social support for carers of people with CDC, facilitating users' access to CDC-specific information and peer support. The relatively new forum shows promise as a free and accessible resource that can contribute to addressing carers' informational and peer support needs.

As many countries experience population aging, patients with cancer are becoming older and have more preexisting comorbidities, which include prevalent, age-related, chronic conditions such as dementia. People living with dementia (PLWD) are vulnerable to health disparities, and dementia has high potential to complicate and adversely affect care and outcomes across the cancer trajectory. This report offers an overview of dementia and its prevalence among patients with cancer and a summary of the research literature examining cancer care for PLWD. The reviewed research indicates that PLWD are more likely to have cancer diagnosed at an advanced stage, receive no or less extensive cancer treatment, and have poorer survival after a cancer diagnosis. These cancer disparities do not necessarily signify inappropriately later diagnosis or lower treatment of people with dementia as a group, and they are arguably less feasible and appropriate targets for care optimization. The reviewed research indicates that PLWD also have an increased risk of cancer-related emergency presentations, lower quality processes of cancer-related decision making, accessibility-related barriers to cancer investigations and treatment, higher experienced treatment burden and higher caregiver burden for families, and undertreated cancer-related pain. The authors propose that optimal cancer care for PLWD should focus on proactively minimizing these risk areas and thus must be highly person-centered, with holistic decision making, individualized reasonable adjustments to practice, and strong inclusion and support of family carers. Comprehensive recommendations are made for clinical practice and future research to help clinicians and providers deliver best and equitable cancer care for PLWD and their families.

Background: Family carers of people living with comorbid dementia and cancer (CDC) play a vital supportive role, but this may be particularly burdensome and adversely impact their own health and wellbeing. Objective: To examine the experiences and psychosocial support needs of caregivers of people with CDC. Methods: A flyer advertising the study was distributed to relevant UK voluntary sector organisations and shared across social media. 13 carers of people with CDC were recruited. In-depth semi-structured interviews were conducted and transcripts were analysed using reflexive thematic analysis, underpinned by an inductive phenomenological approach. Results: Complex interactions of dementia and cancer resulted in heightened responsibility for carers, who played a crucial role in recognition/management of symptoms, performing difficult cancer-related care, and treatment decision-making that posed difficult ethical challenges. Care-recipients had reduced insight into their cancer diagnosis and prognosis, so carers often carried the emotional burden alone. Responsibilities faced by carers were compounded by a lack of targeted, accessible information/support for CDC. Carers expressed a desire to talk to and learn from others who understand the unique challenges of navigating cancer-related decision-making, treatment and care for people who are also living with dementia. Conclusions: Cancer alongside dementia presents complex challenges for carers, who desire more cancer-related information and support which is tailored to people living with dementia and their family caregivers.

BACKGROUND: A growing number of people are living with comorbid dementia and cancer (CDC), and they are particularly likely to require support from family caregivers. Carers of people with CDC play a vital supportive role but have reported unmet support needs, including a lack of CDC-specific information resources and peer support. A targeted online peer support forum may provide an accessible way to help address unmet needs of carers of people with CDC. OBJECTIVE: This study aimed to explore the types and frequency of social support provided on an online peer support forum for caregivers of people with CDC, hosted by a dementia charity in the United Kingdom. METHODS: We conducted a mixed methods study using descriptive statistics and qualitative content analysis. All posts (N=893) on the forum since its launch in November 2018 to April 2024 were exported into Microsoft Excel for analysis. Descriptive statistics were used to examine forum use and user characteristics. Deductive content analysis was conducted to explore the types and frequency of social support provided on the forum. Posts were analyzed according to an adapted version of Cutrona and Suhr's Social Support Behavior Code, consisting of 5 main categories of support: informational, emotional, esteem, network, and tangible. Coding was completed independently by 2 coders, and any coding disagreements were resolved by reaching a consensus through discussion. RESULTS: A total of 258 usernames posted on the forum since its inception. There were 893 posts; 583 (65.3%) were coded as providing social support. All 5 Social Support Behavior Code categories were present in the forum posts. Informational support was the most common type of social support provided on the forum, which mostly involved providing suggestions for caregiving and coping strategies and sharing personal experiences that provide CDC-specific knowledge or insight. This was followed by emotional support, which consisted mostly of expressing shared understanding and empathy for caregivers in their unique situation of CDC and providing expressions of care for the recipient's well-being. Esteem, network, and tangible support were less common, though they included providing validation and relief of blame to other caregivers, typically in decision-making regarding cancer treatment; reminding caregivers that others were available on the forum for support; and expressing willingness to answer questions about their CDC caregiving experience. CONCLUSIONS: This study demonstrates the use and value of a CDC-specific online forum as a source of social support for carers of people with CDC, facilitating users' access to CDC-specific information and peer support. The relatively new forum shows promise as a free and accessible resource that can contribute to addressing carers' informational and peer support needs.

Background: People with Type-2 diabetes mellitus (T2DM) have a higher risk of developing breast and bowel cancers but are less likely to participate in cancer screening. Purpose: Two interlinked studies examined public awareness of the fact that T2DM increases breast and bowel cancer risk, and provision of this information on diabetes websites. Methods: Study-1: phase-1 surveyed awareness of T2DM-increased cancer risk in a nationally representative British sample aged 50-74 (N=1458) and compared respondents with and without T2DM (n=125 vs. n=1305); phase-2 surveyed an additional exclusively-T2DM sample (N=319). Study 2: High-ranking diabetes websites (N=25) were reviewed to determine the rate of inclusion of cancer risk and cancer screening information in evident sections about diabetes-related health conditions. Results: A low proportion of respondents were aware that T2DM increases risk of breast (13.7%) and bowel (27.6%) cancers, compared to much higher awareness of other diabetes-related conditions such as sight loss (82.2%) and foot problems (81.8%). Respondents with T2DM were significantly more likely than those without T2DM to be aware of all the surveyed diabetes-related health conditions (e.g., sight loss, OR:3.14,95%CI:1.61-6.15; foot problems, OR:2.58,95%CI:1.38-4.81), except breast (OR:0.82,95%CI:0.46-1.45) and bowel (OR:0.95,95%CI:0.63-1.45) cancer, for which awareness was equally low among people with and without T2DM. Few diabetes websites with a section on diabetes-related health conditions included cancer in this (n=4/19), and fewer still included cancer screening among any noted cancer-protective behaviours (n=2/4). Conclusions: There is low public awareness that T2DM increases the risk of developing breast and bowel cancers, even among people with T2DM, which may be partly due to limited information provision regarding T2DM-increased cancer risk from diabetes care providers and organisations.

Objective: Describe and synthesise existing published research on the experiences and support needs of informal caregivers of people with multimorbidity. Design: Scoping literature review. Primary database and secondary searches for qualitative and/or quantitative English-language research with an explicit focus on informal carers of people with multimorbidity (no date restrictions). Quality appraisal of included papers. Thematic analysis to identify key themes in the findings of included papers. Results: Thirty-four papers (reporting on 27 studies) were eligible for inclusion, the majority of which were rated good quality, and almost half of which were published from 2015 onwards. The review highlights common difficulties for informal carers of people with multiple chronic illnesses, including practical challenges related to managing multiple health care teams, appointments, medications and side effects, and psychosocial challenges including high levels of psychological symptomatology and reduced social connectedness. Current gaps in the literature include very few studies of interventions which may help support this caregiver group. Conclusion: Interest in this research area is burgeoning. Future work might fruitfully examine the potential benefits of audio-recorded health care consultations, and digitally-delivered psychosocial interventions such as online peer support forums, for supporting and enhancing the caring activities and wellbeing of this caregiver group.

Objectives: Despite cancer and dementia being conditions in which prevalence increases with age, there remains limited research on the cancer treatment and care needs of this population. Our study aimed to address this gap and this paper reports on the role of supportive networks in enabling people with dementia to access cancer treatment and care. Materials and methods: An ethnographic study involving seventeen people with cancer and dementia, 22 relatives and nineteen oncology staff. It comprised observations (46 hrs) of and informal conversations during oncology appointments attended by people with dementia and their relatives and semi-structured interviews (n=37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services. Data were analysed using thematic analysis. Results: Patients and oncology staff relied on and expected relatives to provide practical and emotional support around cancer treatment and care. Families varied in their ability to provide required support due to extent of the family network, practical issues, knowledge of the patient and their wishes, family conflict and the patient’s willingness to accept help. Where no family network was available, support provision was complex and this could compromise access to cancer treatment. Conclusions: People with comorbid cancer and dementia rely heavily on a supportive family network to access treatment and care. Oncology services need to assess the supportive networks available to individual patients in developing cancer treatment plans. Urgent consideration needs to be given to how those with no family networks can be appropriately supported.

A growing number of people live with cancer and dementia. Dementia creates a particular set of challenges in all aspects of cancer treatment and care, including diagnosis, decision-making, access to appointments, monitoring of signs and symptoms of cancer and side effects of cancer treatment, and management of self-care tasks. People with cancer and dementia often require extensive support from family carers, and those without family support face additional challenges. This article uses the emerging UK evidence base on cancer and dementia to discuss the challenges that arise when providing cancer treatment and care to people with dementia and their families, and to make research-based recommendations on how to improve service provision for that population.

Objective: Increasing numbers of people are expected to live with comorbid cancer and dementia. Cancer treatment decision-making for these individuals is complex, particularly for those lacking capacity, requiring support across the cancer care pathway. There is little research to inform practice in this area. This ethnographic study reports on the cancer decision-making experiences of people with cancer and dementia, their families, and healthcare staff. Methods: Participant observations, informal conversations, semi-structured interviews, and medical note review, in two NHS trusts. Seventeen people with dementia and cancer, 22 relatives and 19 staff members participated. Results: Decision-making raised complex ethical dilemmas and challenges and raised concerns for families and staff around whether correct decisions had been made. Whose decision it was and to what extent a person with dementia and cancer was able to make decisions was complex, requiring careful and ongoing consultation and close involvement of relatives. The potential impact dementia might have on treatment understanding and toleration required additional consideration by clinicians when evaluating treatment options. Conclusions: Cancer treatment decision-making for people with dementia is challenging, should be an ongoing process and has emotional impacts for the individual, relatives, and staff. Longer, flexible, and additional appointments may be required to support decision-making by people with cancer and dementia. Evidence-based decision-making guidance on how dementia impacts cancer prognosis, treatment adherence and efficacy is required.

Background: Managing multiple conditions is difficult for patients and their families, increasing complexity in care. Two of the most common long-term conditions, cancer and dementia, both disproportionately affect older adults. However, little is known about the needs and experiences of those living with both conditions, which could inform practice in the area. Objectives: This focused ethnographic study sought to understand how oncology services balance the unique and complex needs of these patients with those of the service more widely. Design: Focused ethnography. Setting: Two NHS trusts. Participants: Seventeen people with dementia and cancer, 22 relatives and 19 staff members participated. Methods: Participant observation, informal conversations, semi-structured interviews, and medical notes review. Results: Improved satisfaction and outcomes of care were reported when staff were delivering person-centred care. Staff tried to balance the need for personalised and flexible support for individuals with dementia with managing targets and processes of cancer care and treatment. The importance of continuity of people, places, and processes was consistently highlighted. Conclusion: Navigating and managing the delicate balance between the needs of the individual and the needs of services more widely was difficult for both staff and patients. Improved awareness, identification and documentation of dementia would help to ensure that staff are aware of any specific patient needs. Consistency in staffing and appointment locations should develop familiarity and routine for people with dementia.

Background: Providing cancer care and treatment for ageing populations with complicating comorbidities like dementia is a growing global challenge. This study aimed to examine the hospital-based cancer care and treatment challenges and support needs of people with dementia, and identify potential ways to address these. Methods: Two-site ethnographic study in England involving semi-structured interviews, observations and accompanying conversations, and medical-record review. Participants (N=58) were people with dementia and comorbid cancer (n=17), informal caregivers (n=22) and hospital staff (n=19). Ethnographically informed thematic analysis was conducted. Results: There was an accumulated complexity of living with both illnesses simultaneously. People with dementia and families could feel confused and uninformed due to difficulties understanding, retaining and using cancer information, which impacted their informed treatment decision-making. Dementia increased the complexity and burden of travelling to and navigating unfamiliar hospital environments, frequent lengthy periods of waiting in hospital, and self-managing symptoms and side-effects at home. Oncology staff were often working without the full picture, due to variable documenting of dementia in medical-records; dementia training was limited; and time and resource pressures impeded the highly-individualised, flexible cancer care required by people with dementia. Supportive family carers were crucial in enabling people with dementia to access, navigate and undergo cancer treatment and care Conclusions: Dementia complicates cancer care in a range of ways accumulating across the cancer pathway. Our findings suggest there are several strategies and interventions, which we list here, with potential to improve cancer care and treatment for people with dementia and their families.

Objectives: The risks of developing cancer and dementia increase as we age, however this comorbidity remains relatively under-researched. This study reports on the challenges that people affected by comorbid cancer and dementia face when navigating engagement with cancer treatment within secondary care. Materials and methods: An ethnographic study recruiting 17 people with cancer and dementia, 22 relatives and 19 oncology staff in two UK National Health Service Trusts. Observations (46 hrs) and informal conversations were conducted during oncology appointments involving people with dementia. Semi-structured interviews (n=37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services were also carried out. Data were analysed using ethnographically informed thematic analysis. Results: People with cancer and dementia experienced challenges across three areas of navigating cancer treatment and care: navigating through multiple services, appointments and layers of often complex information; repeatedly navigating transport to and from hospital; and navigating non-dementia friendly hospital outpatient environments alongside the cognitive problems associated with dementia. Conclusions: Dementia impacts patients’ abilities to navigate the many practical aspects of attending hospital for cancer treatment and care. This study indicates the importance of addressing ways to improve the experience of travelling to and from hospital, alongside extending the ongoing efforts to develop ‘dementia friendly’ hospital in-patient areas and practices, to outpatient departments. Such steps will serve to improve hospital-based cancer treatment and care and more broadly outpatient appointment experiences for people with dementia and their families.

Background  Due to an ageing population, and the increasing prevalence of older adults living with comorbidities, a growing proportion of people are living with dementia and comorbid cancer (DCC) in nursing homes (NH). People with DCC are diagnosed at a later stage, receive less treatment, and have poorer survival. Very few studies, and none in the United Kingdom, have examined the care and support needs of people with DCC living in nursing homes (NH).  Aims  The aims of this thesis are: (1) what are the care and support needs of people with DCC living in NHs; (2) what are the barriers and facilitators to high-quality, person-centred care (PCC) for this resident group?; and (3) what are the target areas and outcomes for a future intervention to support and improve PCC for this group. Methods  Across five NHs I conducted: (1) interviews with 14 staff members and healthcare professionals, and 5 family caregivers; and (2) ethnographic observations (a) following the care experiences of 7 residents with DCC (approx. 90-hours over 10-months), and (b) broader NH observations (approx. 170-hours over 10-months). This research draws on aspects of the Cumulative Complexity Model (CCM) with an in-depth exploration of the Burden of Treatment (BOT) and Illness (BOI) placed on family caregivers, NH staff and residents with DCC.  Results  Four main themes were identified: (1) Complexity of decision-making– a collaboration of views from a resident’s care triad was crucial to determine the most appropriate care outcome for a resident; (2) Obstacles to accessing oncology services– generally, gaining an early cancer diagnosis is deemed both desirable and best practice in terms of its management. For most residents with severe dementia, physical and well-being factors showed receiving a diagnosis or treatment was not the most appropriate care route for this population; (3) Balancing delivery of dementia and cancer care – due to staffs’ incomplete knowledge about a resident’s cancer and how to manage this, their condition was often overlooked in care documentation and practice. Thus, a resident’s cancer was overshadowed by their dementia; (4) Consequences of dementia-orientated care for residents with cancer – if dementia-related care needs were prioritised, there was a higher risk of cancer symptoms being overlooked, inefficiently managed, or misattributed to a resident’s dementia.  Conclusion  Care and support inequalities are an identified risk for people with DCC in NHs for whom attending hospital to gain a formal cancer diagnosis is not feasible or in their best interests. This includes the risk of diagnostic overshadowing and heightened cancer-related symptoms that could lead to an emergency presentation. Recommendations for practice have included establishing ceilings of care with a resident’s care triad, outlining the logistics of accessing oncology services at the point of referral for residents that require hospital support, implementing areas in care plans to include a suspected diagnosis of cancer and related needs, utilise pain assessment tools to support cancer pain management, establish communication pathways with specialist palliative care teams and identify gaps in knowledge for nursing home staff to provide appropriate symptom management.