There are more than 3M people in the UK living with a diagnosis of cancer. These are a varied group of people, ranging from those who had curative surgery 20 years ago to those who have exhausted all options and are under palliative care. However, the prevalent population is much larger than the incident population, and is under-researched, and we know very little about their healthcare utilisation or quality of life. In addition, there are open methodological questions about which questionnaires are best to use and how best to ask people for this information. To assess the feasibility of implementing, measuring and assessing the impact of timing on completion of questions about data linkage and the performance of different approaches to collecting quality of life and healthcare utilisation data in cancer survivors in a scalable robust manner via a pilot clinical trial. We designed and implemented an online randomised observational clinical study using an electronic survey platform. We provided trial information and obtained informed consent from all participants online and used randomisation to assess the acceptability of different quality of life tool and to assess the impact of timing on completion of questions about data linkage. We piloted the study in Northwest London and compared our trial population to the underlying patient population from the WSIC dataset. 135/345 GP practices in NWL participated, and sent SMS messages to 25044 people, of whom 2518 accessed the survey (9%); in addition, 761 accessed the survey via email and a further 15 participants via social media. 1600 provided informed consent and completed the EQ-5D-5L questionnaire and these formed our analytical cohort. The median age of participants was 68 years; 46% were female, 72% heterosexual. 15% from an ethnic minority. The commonest tumour sites were breast, prostate and colorectal cancer (respectively 35%, 15% and 11%). 67% of participants had been diagnosed more than 5 years ago. 90% described themselves as cured. 46% had accessed healthcare services in the last 12 months. Of those working, 33% had reduced their hours because of their diagnosis. 22% were disabled and 33% reported that the standard QoL questionnaires did not cover their cancer-related symptoms and participant rating of additional QoL questionnaires was broadly similar. 74% agreed to linkage with national cancer data. The implementation, and delivery of an online observational trial are feasible and enable us to recruit a prevalent cancer population, 2/3rds of whom had been diagnosed > 5 years ago. Most participants are happy to allow linkage to national cancer data. We used this pilot phase to refine some of search criteria, and the trial is currently recruiting nationally. NCT06095024: Investigating Digital Outcomes for Cancer Survivors in the Community. RR2-https://doi.org/10.1136/bmjopen-2025-104336
Abstract Introduction About 13,000 new patients are diagnosed annually with a primary brain tumour in the UK and less than 20% of patients survive 10 years post-diagnosis. Patient-Reported Outcomes and Experiences (PROMs & PREMs) are largely used in clinical trials that recruit fitter and younger patients than patients routinely treated. Indigo is a randomised controlled digital clinical trial aimed at capturing adult cancer patients’ PROMs and PREMs. Methods We have implemented an online, patient-completed, randomised observational trial. We identified all patients who self-reported having a brain tumour and assessed their EQ-5D-5L scores, demographics and socio-economics metrics, and their use of health services. Results Between January 2025 and 1st of February 2026, 67,860 patients provided informed consent and enrolled in the trial, of whom 188 patients (0.3%) had a brain tumour and were eligible for analysis. The median age was 55 years old, 95% were white; 93%, heterosexual and 51%, women. 59% were diagnosed over 5 years ago and the oldest year of diagnosis was late 1980s. 47% patients received surgery, chemoradiotherapy; 45% reported that their tumour was still present and 44% that their tumour was cured. Most patients reported problems with anxiety and depression (62%) and performing their usual activities (61%). Over 60% saw either their GP (69%) or their hospital doctor (62%) and 55% would contact their CNS if they had a concern about their diagnosis. Conclusion This is the first national study to look at quality of life and service use in brain tumour patients. Patients report issues with mental health and activities of daily living, and patients diagnosed over 5 years ago still have annual appointments. We are continuing to recruit to the trial.
OBJECTIVES:People with type 2 diabetes (T2DM) are more likely to develop breast and bowel cancers. Despite this, cancer screening participation is lower among women with diabetes than among women without diabetes, indicating diabetes-related barriers to screening, but little research has examined this. This study aimed to identify and understand diabetes-related barriers to cancer screening, and potential ways to address these, among women with T2DM. DESIGN:In-depth qualitative interviews. METHODS:Semi-structured interviews with 25 women with T2DM, aged 50 to 74 years, living in England. Participants were recruited via diabetic eye screening clinics and community advertisement. Data were analysed to develop themes, using the framework method. RESULTS:Women with T2DM were often living with an accumulated high burden of illness and its treatment, due to diabetes and comorbidities, which reduced their capacity to participate in cancer screening (e.g. physical and psychological capacities; practical resources). Having diabetes could complicate taking part in screening tests for some people (e.g. physical difficulties during screening related to diabetes, its treatment, complications or comorbidities; having to consider glycaemic control during appointments). There appeared to be underappreciation of the T2DM-increased risk of cancer, and limited cancer screening promotion within diabetes care. CONCLUSIONS:Despite self-reported cancer screening uptake being high among study participants, having diabetes appeared to heighten common barriers to cancer screening (e.g. travel-related, logistical and scheduling barriers), whilst also posing additional unique barriers (e.g. diabetes-related stigma and embarrassment). Several potential strategies are suggested to improve cancer screening informed decision-making and participation among people with T2DM.
Informal caregivers play a fundamental role in the diagnosis, treatment, and care received for their family members. Caring for someone with dementia is particularly burdensome, leading to known negative effects on caregivers' health. Despite caregivers being widely recognised as vulnerable, the psychosocial needs of carers who are managing cancer themselves remain unknown. To investigate the experiences and existing gaps in psychosocial support of informal UK caregivers who have received a cancer diagnosis while caring for someone with dementia or memory problems. 25 UK informal caregivers who have received a cancer diagnosis were recruited through convenience sampling to take part in an in-depth semi-structured interview. Reflexive Thematic Analysis was conducted. Study findings were developed into three key themes (1) caring complicates and can take precedence above cancer care, (2) caregivers may experience additional cancer-related distress and anxieties, and (3) increased need for support and coping resources when caregivers face cancer. For dementia carers having cancer can surface/heighten feelings of predeath grief, and worries around future care planning, for their care recipient. Dementia carers viewed multifaceted social support as vital to enable access to and coping with cancer treatment. Caregivers living with cancer themselves continue to shoulder the burden of illness work on behalf of their care recipients. For dementia carers, accessibility and experiences of cancer care may be optimised by person-centred adjustments to care planning and scheduling and dementia-friendly hospital environments. Dementia carers may benefit from tailored psycho-oncology support encompassing carer-role concerns and needs (e.g., predeath grief for their care recipient). N/A
ObjectiveIn 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.MethodsA focussed ethnography using interviews, observations, informal conversations, and review of care plan documentation. Data were analysed using ethnographically informed reflexive thematic analysis.ResultsEight 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.ConclusionsImplementing 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:There are estimated to be 3.4 million patients in the UK living after a diagnosis of cancer. We know very little about their quality of life or healthcare usage. Patient-reported outcome measures (PROMs) are tools which help to translate a patient's quality of life into measurable categories, but how to do this at scale remains underexplored. The study employs a randomised design to assess different engagement strategies for optimising participation, data linkage and questionnaire completion in Northwest London and then nationally, with appropriate research approvals. METHODS AND ANALYSIS:We have designed and implemented an online, patient-completed, randomised observational trial. We will pilot it in Northwest London before national roll-out, using initially the General Practice (GP) record of a cancer diagnosis and then exploring the use of social media. The primary objective is to explore the feasibility of recruiting participants via self-identification or contact from the primary care research network and obtaining consent to link participants' PROMs responses to their cancer registry records. Data collection occurs through a secure platform, with participants directly responsible for data entry. There is no formal target sample size because this is a feasibility study, and we want to explore how many patients we can recruit. Analyses will be conducted using descriptive statistics, repeated measures multilevel modelling and machine learning techniques. If a substantial difference in responses between randomisation arms is detected, ineffective strategies will be removed. If no clear difference is observed, recruitment will continue with periodic reviews based on response rates and data completeness. ETHICS AND DISSEMINATION:The Study Coordination Centre has obtained approval from the London-Surrey Research Ethics Committee and Health Research Authority. We will publish and disseminate the results in local, national and international meetings, in peer-reviewed journals, on social media and on websites.It has been registered under 'Investigating Digital Outcomes for Cancer Survivors in the Community' (NCT06095024). TRIAL REGISTRATION NUMBER:NCT06095024: Investigating Digital Outcomes for Cancer Survivors in the Community.
BackgroundA 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. ObjectiveThis 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. MethodsWe 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. ResultsA 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. ConclusionsThis 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.
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.
BackgroundFamily 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.ObjectiveTo examine the experiences and psychosocial support needs of caregivers of people with CDC.MethodsA 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.ResultsComplex 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.ConclusionsCancer 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.
ObjectiveTo 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.Methods242 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.ResultsNo 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.ConclusionThere 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.
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.
Abstract 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.
Introduction: Breast implant-associated anaplastic large cell lymphoma (BIA-ALCL) was classified by the World Health Organisation in 2016. As of December 2021 there have been 86 reported cases within the UK. Raising awareness amongst clinicians of this novel entity is crucial in order to provide effective clinical care. Psycho-social support forms a vital arm of care, both for affected women but also for the now millions at risk or those considering new implants. This survey aims to assess the current awareness and experiences of health care providers potentially involved in the care of patients with BIA-ALCL with a particular focus on psycho-social support requirements. Methods: We performed an online survey using categorical and open-ended questions. The questionnaire was distributed amongst professional associations that have an interest in the topic researched, e.g., The Association of Breast Surgeons (ABS), British Association of Plastic, Reconstructive and Aesthetic Surgeons (BAPRAS). In addition the survey was distributed amongst multidisciplinary teams that are likely to encounter these patients, e.g. Breast and Lymphoma. The survey was designed in Qualtrics and sent via a link. Data has been collated and analysed within SPSS. Research approval was obtained from Leeds Beckett University. Results: There were a total of 78 respondents who completed the survey. Breast surgeons made up the largest proportion of respondents (36%, 28/78) with over half of respondents having cared for a patient with BIA-ALCL (58% 42/78). The largest proportion of respondents reporting using ABS/BAPRAS joint guidelines in their clinical practice (46%, 36/78). High median confidence scores were reported in both diagnosing/managing, 7/10 (3) and having conversations with patients regarding BIA-ALCL, 7/10 (5) although a large range in responses was noted. The most frequently selected test to work up a case of suspected BIA-ALCL was ‘core biopsy of any associated peri-implant mass’ (82%, 64/78) with mammography the least selected (42%, 33/78). 45% (35/78) reported seeing women requesting reassurance or implant removal despite an absence of symptoms or signs of BIA-ALCL. The average degree of distress upon receiving a diagnosis was reported as 7/10 (2). 70% (54/77) of respondents felt patients diagnosed with BIA-ALCL or those awaiting test results would benefit from psychological support. Only 38 (29/76) % of respondents however, confirmed that breast implant patients have access to any psychological support as part of routine care. Conclusion: This survey demonstrates that although there is relatively high confidence in managing and conducting discussions with patients regarding BIA-ALCL, there is a large variability amongst healthcare providers. The findings suggest there is urgent need for psycho-social support for both patients diagnosed with BIA-ALCL and asymptomatic women seeking reassurance. Keyword: Aggressive T-cell non-Hodgkin lymphoma Conflicts of interests pertinent to the abstract D. Cunningham Consultant or advisory role Ovibio on scientific advisory board Research funding: Medimmune/AZ, Clovis, Eli Lilly, 4SC, Bayer, Celgene, Roche - institution recipient
Background: Breast cancer is the most commonly diagnosed women’s cancer with 2.3 million new global cases diagnosed in 2020. The global rise in survivorship has resulted in a significant health and economic burden on society. Breast cancer survivors report being overwhelmed physically and emotionally with treatment adverse effects. Recommendations include self-management support and personalised follow-up to meet patient needs. Persistent post-surgical pain (PPSP) is the most common negative consequence of breast surgery, often relating to inadequate acute post-surgical pain management. An unintended consequence of day surgery is reduced post-operative pain monitoring. There is a need to ensure appropriate support and pain monitoring alongside preparation, behavioural change and expectation management. Web-based interventions (WBI) could be a potential solution. A mixed-methods approach was used to develop a WBI to capture patient self-reported post-operative symptoms and provide individualised self-management advice. Methods: An audit and service evaluation revealed a 46% PPSP rate and identified opportunities where advice could support improved self-management. Developing the WBI (ePainQ) comprised a scoping review, systematic review, and development study with all results informing the development of ePainQ. ePainQ comprised two parts; a website containing supportive information and a post-operative symptom questionnaire. Intervention questions included pain, swelling, infection, functionality and QoL. Advice was generated for each question with different levels, based on CTCAE grading agreed with clinicians. A feasibility study prospectively tested ePainQ for acceptability, usability and perceived usefulness. Feasibility study aims were assessing uptake, retention, follow up and completion rates and acceptability of ePainQ. Study arms: usual care (cohort) or intervention (ePainQ). Intervention: daily online symptom questionnaire for 2 weeks commencing the day after surgery. Participants received immediate advice based on the severity of the reported symptoms, either self-management advice or in cases of clinical concern, advice to contact the hospital team. Reports were immediately available to HCPs as ePainQ was linked to the electronic patient record. Data collection: baseline, 2 weeks, 3 and 9 months post-operatively. Outcome measures: EORTC C30, and BR23, EQ-5D, HADS and BPI. Patient Activation was measured at baseline and 9 months. Results: 69 patients recruited over 8 months; 60 intervention and 9 cohort. Mean age: 57.7yrs (SD 9.8; range 38-82). Recruitment rate was 63%. IT issues prevented 12/60 using ePainQ but engagement of the 48/60 active participants was 89.6%. 40/48 completed a usability scale in which • 97.5% highlighted ePainQ as easy to use • 95% reported not needing any technical support • 90% felt very confident using ePainQ Outcome measures: 69/69 (100%) completion at baseline and 2 weeks. No active withdrawals with 13/69 passive withdrawals by 9 months. 67 participants (97.1%) consented to an interview invite with 14/67 interviews conducted. Participants were a mix of compliance rates to be reflective of the study and capture both positive and negative feedback. Feasibility study results demonstrated that ePainQ was perceived to be simple, easy to use and not requiring much learning to use effectively. All pre-set criteria for progression to a phase III RCT were met. Conclusion: ePainQ was designed in response to patient identified needs. The feasibility study established that ePainQ was accepted, used, and liked by participants who interacted with it. Even participants with limited use felt they had benefited from the advice. Results demonstrated patient positivity towards ePainQ suggesting recruitment rates could be increased if research capacity was improved and higher retention rates if IT issues were resolved and daily reporting duration was slightly reduced. Citation Format: Sue M. Hartup, Laura Ashley, Michelle Briggs, Galina Velikova, Mark Johnson. Developing and feasibility testing a web-based intervention (ePainQ) to support post-operative pain and symptom self-management following surgery for breast cancer [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P6-05-57.
Abstract 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 association between having cancer and/or dementia and the number of general practice appointments. Results Data from 162,371 people with cancer and/or dementia were analysed; 3616 (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% 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% 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 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
Introduction: Surgery for breast cancer confers comorbidities including high rates of persistent post-surgical pain (PPSP). An audit revealed that the surgical pathway does not support patient self-management of symptoms. Web-based interventions (WBIs) have been shown to improve self-management in chronic conditions. A mixed-methods approach was used to develop a WBI to capture patient self-reported post-operative symptoms and provide individualised self-management advice.
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 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.