Cancer care for people with dementia: Literature overview and recommendations for practice and research.

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.

Increased Breast and Colorectal Cancer Risk in Type 2 Diabetes: Awareness Among Adults With and Without Diabetes and Information Provision on Diabetes Websites.

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 = 1,458) and compared respondents with and without T2DM (n = 125 vs. n = 1,305); 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 section (n = 4/19), and fewer still included cancer screening among any noted cancer-protective behaviors (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 organizations.

People with type 2 diabetes (T2D) have a higher risk of developing breast and bowel cancers. Despite this, they are less likely to participate in cancer screening, which can improve survival from cancer. We addressed two questions. Are people aware that T2D increases the risk of breast and bowel cancer? Are people being told about this by diabetes care providers and organizations? We surveyed a large representative sample of the British public (aged 50­74). We also reviewed key information about diabetes-related health problems provided on 25 top-ranking diabetes websites. There were three main findings. (1) Relatively few people knew that T2D increases the risk of breast and bowel cancer. In contrast, many people knew that T2D increases the risk of other conditions like sight loss, foot problems, and heart disease. (2) Awareness of higher cancer risk was equally low among people with T2D and those without. In contrast, knowledge of other diabetes-related conditions (e.g., sight loss, foot problems) was higher among people with T2D than those without. (3) Few websites included cancer in their key information about diabetes-related health problems. In contrast, nearly all the diabetes websites listed the more well-known risks of sight loss, foot problems, and heart disease.

Navigating cancer treatment and care when living with comorbid dementia: an ethnographic study.

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 h) 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 the 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.

Understanding and identifying ways to improve hospital-based cancer care and treatment for people with dementia: an ethnographic study.

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: A 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.

Barriers to flexible sigmoidoscopy colorectal cancer screening in low uptake socio-demographic groups: A systematic review.

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.

Decision-making in cancer care for people living with dementia.

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.

Disparities in psychosocial cancer care: a report from the International Federation of Psycho-oncology Societies.

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).

The economic burden of cancer in the UK: a study of survivors treated with curative intent.

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 $ US 409 (95%CI: $ US 316-$ US 502) [mean: £ 260, 95%CI: £ 198-£ 322] and was incurred by 92% of patients. This was divided into costs to the National Health Service (mean: $ US 279, 95%CI: $ US 207-$ US 351) [mean: £ 177, 95%CI: £ 131-£ 224], patients' out-of-pocket (OOP) expenses (mean: $ US 40, 95%CI: $ US 15-$ US 65) [mean: £ 25, 95%CI: £ 9-£ 42] and the cost of informal care (mean: $ US 110, 95%CI: $ US 57-$ US 162) [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.

Illness perceptions within 6 months of cancer diagnosis are an independent prospective predictor of health-related quality of life 15 months post-diagnosis.

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 (∆R(2) 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.

End of life care for people with dementia and comorbid cancer: recent studies and research gaps.

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.

Effects of a modified invitation letter to follow-up colonoscopy for bowel cancer detection.

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.

Effects of a self-affirmation intervention on responses to bowel cancer screening information.

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.

Score equivalence of electronic and paper versions of the Social Difficulties Inventory (SDI-21): a randomised crossover trial in cancer patients.

PURPOSE: 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. METHODS: A randomised two-arm crossover trial in a sample of cancer patients with varied diagnoses. Patients completed electronic (via the internet) and paper versions of the SDI-21, with half randomly assigned to complete the electronic version first (n = 51) and half the paper version first (n = 60). Patients were asked to complete both versions at home, within 2 weeks. Analyses were performed for the SDI-21 summary score and three subscales. RESULTS: Score distributions and internal reliabilities for the paper and electronic versions were highly similar. There were no significant differences between mean summary or subscale scores for the two administration modes. All mean score differences (all <0.25 of a scale point) were well below the SDI-21's established minimally important differences, and all 95 % confidence intervals were narrow and included zero. Intraclass correlations between paper and electronic scores were uniformly high and significant (all ≥0.85) and above the standard acceptable level of reliability. CONCLUSIONS: Paper and electronic versions of the SDI-21 can be considered equivalent and used interchangeably. This is important because, despite the growth of electronic formats, paper versions are currently still necessary to ensure inclusive use of the SDI-21 with representative samples.

Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) system.

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.

A randomized trial of written emotional disclosure interventions in school teachers: controlling for positive expectancies and effects on health and job satisfaction.

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.

Cancer patients' and clinicians' opinions on the best time in secondary care to approach patients for recruitment to longitudinal questionnaire-based research.

PURPOSE: 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. METHODS: The sample comprised 15 patients with non-metastatic breast, colorectal or prostate cancer, and 15 clinicians including surgeons, oncologists and nurse specialists. Patients and clinicians participated in one face-to-face topic-guided audio-recorded interview. Data were analysed using thematic content analysis. RESULTS: Patients did not want to be approached about LO-PROMs research early in the care pathway, near diagnosis and treatment planning or before any surgery and its results. Patients felt that LO-PROMs research is best introduced from the time people are 'settled' on (post-surgical) treatment regimens, provided they are coping well emotionally and not experiencing significant physical side effects; patients emphasised variability in people's experience of and response to cancer and treatment. Clinicians also advised against approach near diagnosis, although generally recommended initiating recruitment somewhat sooner than patients. CONCLUSIONS: Patients expressed strong homogeneous preferences and ideally wanted to be approached about LO-PROMs research when their initial fears and anxiety about cancer treatment and survival had diminished, and they felt some sense of certainty and optimism about the future. As the timeline of clinical events varies, maximising recruitment may mean approaching patients at varied time points post-diagnosis. Further recruitment implications are discussed.

Barriers and facilitators to colonoscopy for cancer detection: patient and practitioner perspectives.

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.

Understanding the experiences and psychosocial support needs of caregivers of people with comorbid dementia and cancer.

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.

The Extent of Engagement With Telehealth Approaches by Patients With Advanced Cancer: Systematic Review.

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. TRIAL REGISTRATION: PROSPERO (International Prospective Register of Systematic Reviews) CRD42018117232; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018117232.