Patients' and Clinicians' Perceptions of the Clinical Utility of Predictive Risk Models for Chemotherapy-Related Symptom Management: Qualitative Exploration Using Focus Groups and Interviews.

BACKGROUND: Interest in the application of predictive risk models (PRMs) in health care to identify people most likely to experience disease and treatment-related complications is increasing. In cancer care, these techniques are focused primarily on the prediction of survival or life-threatening toxicities (eg, febrile neutropenia). Fewer studies focus on the use of PRMs for symptoms or supportive care needs. The application of PRMs to chemotherapy-related symptoms (CRS) would enable earlier identification and initiation of prompt, personalized, and tailored interventions. While some PRMs exist for CRS, few were translated into clinical practice, and human factors associated with their use were not reported. OBJECTIVE: We aim to explore patients' and clinicians' perspectives of the utility and real-world application of PRMs to improve the management of CRS. METHODS: Focus groups (N=10) and interviews (N=5) were conducted with patients (N=28) and clinicians (N=26) across 5 European countries. Interactions were audio-recorded, transcribed verbatim, and analyzed thematically. RESULTS: Both clinicians and patients recognized the value of having individualized risk predictions for CRS and appreciated how this type of information would facilitate the provision of tailored preventative treatments or supportive care interactions. However, cautious and skeptical attitudes toward the use of PRMs in clinical care were noted by both groups, particularly in relationship to the uncertainty regarding how the information would be generated. Visualization and presentation of PRM information in a usable and useful format for both patients and clinicians was identified as a challenge to their successful implementation in clinical care. CONCLUSIONS: Findings from this study provide information on clinicians' and patients' perspectives on the clinical use of PRMs for the management of CRS. These international perspectives are important because they provide insight into the risks and benefits of using PRMs to evaluate CRS. In addition, they highlight the need to find ways to more effectively present and use this information in clinical practice. Further research that explores the best ways to incorporate this type of information while maintaining the human side of care is warranted. TRIAL REGISTRATION: ClinicalTrials.gov NCT02356081; https://clinicaltrials.gov/study/NCT02356081.

Cancer incidence, treatment, and survival in the prison population compared with the general population in England: a population-based, matched cohort study.

BACKGROUND: The growing and ageing prison population in England makes accurate cancer data of increasing importance for prison health policies. This study aimed to compare cancer incidence, treatment, and survival between patients diagnosed in prison and the general population. METHODS: In this population-based, matched cohort study, we used cancer registration data from the National Cancer Registration and Analysis Service in England to identify primary invasive cancers and cervical cancers in situ diagnosed in adults (aged ≥18 years) in the prison and general populations between Jan 1, 1998, and Dec 31, 2017. Ministry of Justice and Office for National Statistics population data for England were used to calculate age-standardised incidence rates (ASIR) per year and age-standardised incidence rate ratios (ASIRR) for the 20-year period. Patients diagnosed with primary invasive cancers (ie, excluding cervical cancers in situ) in prison between Jan 1, 2012, and Dec 31, 2017 were matched to individuals from the general population and linked to hospital and treatment datasets. Matching was done in a 1:5 ratio according to 5-year age group, gender, diagnosis year, cancer site, and disease stage. Our primary objectives were to compare the incidence of cancer (1998-2017); the receipt of treatment with curative intent (2012-17 matched cohort), using logistic regression adjusted for matching variables (excluding cancer site) and route to diagnosis; and overall survival following cancer diagnosis (2012-17 matched cohort), using a Cox proportional hazards model adjusted for matching variables (excluding cancer site) and route to diagnosis, with stratification for the receipt of any treatment with curative intent. FINDINGS: We identified 2015 incident cancers among 1964 adults (1556 [77·2%] men and 459 [22·8%] women) in English prisons in the 20-year period up to Dec 31, 2017. The ASIR for cancer for men in prison was initially lower than for men in the general population (in 1998, ASIR 119·33 per 100 000 person-years [95% CI 48·59-219·16] vs 746·97 per 100 000 person-years [742·31-751·66]), but increased to a similar level towards the end of the study period (in 2017, 856·85 per 100 000 person-years [675·12-1060·44] vs 788·59 per 100 000 person-years [784·62-792·57]). For women, the invasive cancer incidence rate was low and so ASIR was not reported for this group. Over the 20-year period, the incidence of invasive cancer for men in prison increased (incidence rate ratio per year, 1·05 [95% CI 1·04-1·06], during 1999-2017 compared with 1998). ASIRRs showed that over the 20-year period, overall cancer incidence was lower in men in prison than in men in the general population (ASIRR 0·76 [95% CI 0·73-0·80]). The difference was not statistically significant for women (ASIRR 0·83 [0·68-1·00]). Between Jan 1, 2012, and Dec 31, 2017, patients diagnosed in prison were less likely to undergo curative treatment than matched patients in the general population (274 [32·3%] of 847 patients vs 1728 [41·5%] of 4165; adjusted odds ratio (OR) 0·72 [95% CI 0·60-0·85]). Being diagnosed in prison was associated with a significantly increased risk of death on adjustment for matching variables (347 deaths during 2021·9 person-years in the prison cohort vs 1626 deaths during 10 944·2 person-years in the general population; adjusted HR 1·16 [95% CI 1·03-1·30]); this association was partly explained by stratification by curative treatment and further adjustment for diagnosis route (adjusted HR 1·05 [0·93-1·18]). INTERPRETATION: Cancer incidence increased in people in prisons in England between 1998 and 2017, with patients in prison less likely to receive curative treatments and having lower overall survival than the general population. The association with survival was partly explained by accounting for differences in receipt of curative treatment and adjustment for diagnosis route. Improved routine cancer surveillance is needed to inform prison cancer policies and decrease inequalities for this under-researched population. FUNDING: UK National Institute for Health and Care Research, King's College London, and Strategic Priorities Fund 2019/20 of Research England via the University of Surrey.

Use of UK faith Centre as a COVID-19 community vaccination clinic: exploring a potential model for community-based health care delivery.

INTRODUCTION: Effective and safe vaccines against COVID-19 are essential to achieve global control of the coronavirus (SARS-CoV-2). Using faith centres may offer a promising route for promoting higher vaccine uptake from certain minority ethnic groups known to be more likely to be vaccine hesitant. METHODS: This cross-sectional study explored attendees' perceptions, experiences of being offered, and receiving COVID-19 vaccination in a local mosque in Woking, Surrey, UK. About 199 attendees completed a brief questionnaire on experiences, views, motivations about attending the mosque and vaccination on site. RESULTS: The most common ethnic groups reported were White British (39.2%) and Pakistani (22.6%); 36.2% identified as Christian, 23.6% as Muslim, 5.5% as Hindu, and 17.1% had no religion. Genders was relatively equal with 90 men (45.2%) and 98 women (49.2%), and 35-44-year-olds represented the most common age group (28.1%). Views and experiences around receiving vaccinations at the mosque were predominantly positive. Primary reasons for getting vaccinated at the mosque included convenience, accessibility, positive aspects of the venue's intercultural relations, and intentions to protect oneself against COVID-19, regardless of venue type. Negative views and experiences in regards to receiving the vaccination at the mosque were less common (7% expressed no intention of recommending the centre to others), and disliked aspects mostly referred to the travel distance and long waiting times. CONCLUSIONS: Offering COVID-19 vaccination in faith centres appears acceptable for different faith groups, ensuring convenient access for communities from all religions and ethnic backgrounds.

Understanding University Students' Perspectives towards Digital Tools for Mental Health Support: A Cross-country Study.

Background: Organisational and individual barriers often prevent university students from seeking mental health support. Digital technologies are recognised as effective in managing psychological distress and as a source of health-related information, thus representing useful options to address mental health needs in terms of accessibility and cost-effectiveness. However, university students' experiences and perspectives towards such interventions are little known. Objectives: We thus aimed to expand the existing base of scientific knowledge, focusing on this special population. Methods: Data were from the qualitative component of "the CAMPUS study", longitudinally assessing the mental health of students at the University of Milano-Bicocca (Italy) and the University of Surrey (UK). We conducted in-depth interviews and thematically analysed the transcripts using the framework approach. Results: An explanatory model was derived from five themes identified across 33 interviews (15 for Italy, 18 for the UK). Students perceived that social media, apps, and podcasts could deliver relevant mental health content, ranging from primary to tertiary prevention. Wide availability and anonymity were perceived as advantages that make tools suitable for preventive interventions, to reduce mental health stigma, and as an extension of standard treatment. These goals can be hindered by disadvantages, namely lower efficacy compared to face-to-face contact, lack of personalisation, and problematic engagement. Individual and cultural specificities might influence awareness and perspectives on the use of digital technologies for mental health support. Conclusion: Although considering some specific features, digital tools could be a useful instrument to support the mental health needs of students. Since personal contact remains crucial, digital tools should be integrated with face-to-face interventions through a multi-modal approach.

Symptomatic presentation of cancer in primary care: a scoping review of patients' experiences and needs during the cancer diagnostic pathway.

OBJECTIVES: The objective was to map the experiences and needs of patients presenting with symptoms of suspected cancer in the primary care interval (from when they first present to primary care to their first appointment or referral to a secondary or tertiary level healthcare facility). DESIGN: This was a scoping review. INCLUSION CRITERIA: Studies or reports written in English which included primary data on the primary care interval experiences and/or needs of adult patients presenting with new symptoms of suspected cancer were eligible. Studies which only included patients with secondary or recurring cancer, conference abstracts and reviews were excluded. No date limits were applied. METHODS: The Joanna Briggs Institute method for Scoping Reviews guided screening, report selection and data extraction. At least two independent reviewers contributed to each stage. Medline, CINAHL, PsychInfo, Embase and Web of Science were searched and several grey literature resources. Relevant quantitative findings were qualitised and integrated with qualitative findings. A thematic analysis was carried out. RESULTS: Of the 4855 records identified in the database search, 18 were included in the review, along with 13 identified from other sources. The 31 included studies were published between 2002 and 2023 and most (n=17) were conducted in the UK. Twenty subthemes across four themes (patient experience, interpersonal, healthcare professional (HCP) skills, organisational) were identified. No studies included patient-reported outcome measures. Patients wanted (1) to feel heard and understood by HCPs, (2) a plan to establish what was causing their symptoms, and (3) information about the next stages of the diagnostic process. CONCLUSIONS: Scoping review findings can contribute to service planning as the cancer diagnostic pathway for symptomatic presentation of cancer evolves. The effectiveness of this pathway should be evaluated not only in terms of clinical outcomes, but also patient-reported outcomes and experience, along with the perspectives of primary care HCPs.

What are the determinants of older people adopting communicative e-health services: a meta-ethnography.

BACKGROUND: Gradually, society has shifted more services online, with COVID-19 highlighting digital inequalities in access to services such as healthcare. Older adults can experience such digital inequalities, yet this group is also more likely to need medical appointments, compared to younger people. With the growing digitalisation of healthcare, it is increasingly important to understand how older people can best use communicative e-health services to interact with healthcare services. This is especially if older adults are to access, and actively interact with health professionals/clinicians due to their general health decline. This review aims to synthesise older adults' experiences and perceptions of communicative e-health services and, in turn, identify barriers and facilitators to using communicative e-health services. METHODS: A meta-ethnography was conducted to qualitatively synthesise literature on older adults' experiences of using communicative e-health services. A systematic search, with terms relating to 'older adults', 'e-health', 'technology', and 'communication', was conducted on six international databases between January 2014 and May 2022. The search yielded a total of 10 empirical studies for synthesis. RESULTS: The synthesis resulted in 10 themes that may impact older adults' perceptions and/or experiences of using communicative e-health services. These were: 1) health barriers, 2) support networks, 3) application interface/design, 4) digital literacy, 5) lack of awareness, 6) online security, 7) access to digital devices and the internet, 8) relationship with healthcare provider(s), 9) in-person preference and 10) convenience. These themes interlink with each other. CONCLUSION: The findings suggest older adults' experiences and perceptions of communicative e-health services are generally negative, with many reporting various barriers to engaging with online services. However, many of these negative experiences are related to limited support networks and low digital literacy, along with complicated application interfaces. This supports previous literature identifying barriers and facilitators in which older adults experience general technology adoption and suggests a greater emphasis is needed on providing support networks to increase the adoption and usage of communicative e-health services.

Mini-AFTERc: a controlled pilot trial of a nurse-led psychological intervention for fear of breast cancer recurrence.

OBJECTIVES: To determine the feasibility and acceptability of implementing the Mini-AFTERc intervention. DESIGN: Non-randomised cluster-controlled pilot trial. SETTING: Four NHS out-patient breast cancer centres in Scotland. PARTICIPANTS: Ninety-two women who had successfully completed primary treatment for breast cancer were screened for moderate levels of fear of cancer recurrence (FCR). Forty-five were eligible (17 intervention and 28 control) and 34 completed 3-month follow-up (15 intervention and 21 control). INTERVENTION: Mini-AFTERc, a single brief (30 min) structured telephone discussion with a specialist breast cancer nurse (SBCN) trained to target the antecedents of FCR. OUTCOMES: Feasibility and acceptability of Mini-AFTERc and the study design were assessed via recruitment, consent, retention rates, patient outcomes (measured at baseline, 2, 4, and 12 weeks), and post-study interviews with participants and SBCNs, which were guided by Normalisation Process Theory. RESULTS: Mini-AFTERc was acceptable to patients and SBCNs. SBCNs believe the implementation of Mini-AFTERc to be feasible and an extension of discussions that already happen routinely. SBCNs believe delivery, however, at the scale required would be challenging given current competing demands for their time. Recruitment was impacted by variability in the follow-up practices of cancer centres and COVID-19 lockdown. Consent and follow-up procedures worked well, and retention rates were high. CONCLUSIONS: The study provided invaluable information about the potential challenges and solutions for testing the Mini-AFTERc intervention more widely where limiting high FCR levels is an important goal following recovery from primary breast cancer treatment. TRIAL REGISTRATION: ClinicalTrials.gov, NCT0376382 . Registered on 4 December 2018.

The "Breast-4Y" web app for breast cancer prevention at young age: Development, evaluation, and validation.

Background: Improving knowledge of risk factors, signs and symptoms positively influence an individual's intention to acquire healthy lifestyle behaviors to prevent breast cancer, to identify breast cancer risk early and seek health advice early. The aim of the present study was to develop and to assess the usability and quality of a web-app (Breast-4Y) designed specifically for younger women to improve their knowledge about breast cancer risk factors and symptoms as well as protective behaviors to reduce their risk. Methods: The development of the Breast-4Y web-app, based on Health Belief Model and the Behaviour Change Wheel, comprised four steps: i) analysis of scientific literature regarding breast cancer risk factors, symptoms and preventive lifestyle behaviors; ii) design of web-app; iii) content review by experts; iv) quality and usability assessment by the end-users (n = 20). Web-app usability was evaluated using the Spanish version of the System Usability Scale for the Assessment of Electronic Tools and the quality using the Spanish version of uMARS. Results: The contents were rated 4.25 or above, indicating high content quality. The mean usability score was 84.9 (SD 12.4), the mean rating for objective quality and subjective quality dimensions mean were 4.2 (SD 0.4) and 3.4 (0.777) respectively, indicating excellent usability and quality. Positive associations (p < .05) were observed between numbers of app used and attitudes to change (r = 0.479), and intention to change (r = 0.539). Strong positive associations (p < .001) were also observed between usability satisfaction and attitudes to change (r = 0.584), intention to change (r = 0.656), and help-seeking (r = 0.656). Conclusions: This study provided evidence that Breast-4Y has adequate contents, high quality, and usability. Breast-4Y can be tested in pragmatic trials to assess their effectiveness to reduce the risk of breast cancer, raise women's awareness of breast cancer risk factors, increase women's knowledge of breast cancer symptoms, and adopt protective lifestyle behaviors.

Identifying developments over a decade in the digital health and telemedicine landscape in the UK using quantitative text mining.

The use of technologies that provide objective, digital data to clinicians, carers, and service users to improve care and outcomes comes under the unifying term Digital Health. This field, which includes the use of high-tech health devices, telemedicine and health analytics has, in recent years, seen significant growth in the United Kingdom and worldwide. It is clearly acknowledged by multiple stakeholders that digital health innovations are necessary for the future of improved and more economic healthcare service delivery. Here we consider digital health-related research and applications by using an informatics tool to objectively survey the field. We have used a quantitative text-mining technique, applied to published works in the field of digital health, to capture and analyse key approaches taken and the diseases areas where these have been applied. Key areas of research and application are shown to be cardiovascular, stroke, and hypertension; although the range seen is wide. We consider advances in digital health and telemedicine in light of the COVID-19 pandemic.

Novel intervention to promote COVID-19 protective behaviours among Black and South Asian communities in the UK: protocol for a mixed-methods pilot evaluation.

INTRODUCTION: Culturally appropriate interventions to promote COVID-19 health protective measures among Black and South Asian communities in the UK are needed. We aim to carry out a preliminary evaluation of an intervention to reduce risk of COVID-19 comprising a short film and electronic leaflet. METHODS AND ANALYSIS: This mixed methods study comprises (1) a focus group to understand how people from the relevant communities interpret and understand the intervention's messages, (2) a before-and-after questionnaire study examining the extent to which the intervention changes intentions and confidence to carry out COVID-19 protective behaviours and (3) a further qualitative study exploring the views of Black and South Asian people of the intervention and the experiences of health professionals offering the intervention. Participants will be recruited through general practices. Data collection will be carried out in the community. ETHICS AND DISSEMINATION: The study received Health Research Authority approval in June 2021 (Research Ethics Committee Reference 21/LO/0452). All participants provided informed consent. As well as publishing the findings in peer-reviewed journals, we will disseminate the findings through the UK Health Security Agency, NHS England and the Office for Health Improvement and Disparities and ensure culturally appropriate messaging for participants and other members of the target groups.

What do we know about the psychosocial issues associated with cancer during pregnancy? A scoping review and gap analysis.

OBJECTIVES: There is a global increase in the number of women diagnosed with cancer during their pregnancy and a nascent evidence base to guide their supportive care. The purposes of this study were to (1) map research on the psychosocial issues affecting women and their partners on diagnosis and treatment for cancer during pregnancy; (2) determine available supportive care or educational interventions; and (3) identify knowledge gaps for future research and development. DESIGN: Scoping review. SEARCH STRATEGY: Six databases were searched (Scopus, CINAHL, PsycINFO, Medline, Intermid, Maternal and Infant Health) to retrieve primary research (January 1995 to November 2021) investigating women and/or their partner's decision-making and their psychosocial outcomes during and after pregnancy. DATA EXTRACTION AND SYNTHESIS: Sociodemographic, gestational and disease characteristics of participants and psychosocial issues identified were extracted. Leventhal's self-regulatory model of illness provided a framework for mapping study findings enabling evidence synthesis and gap analysis. RESULTS: Twelve studies were included, conducted in eight countries in six continents. Most women (70% of 217) were diagnosed with breast cancer during pregnancy. Reporting of sociodemographic, psychiatric, obstetric and oncological characteristics that are important in assessing psychosocial outcomes was inconsistent. None of the studies had a longitudinal design and no supportive care or educational interventions were identified. The gap analysis highlighted the lack of evidence about pathways to diagnosis, impact of late effects and how internal/social resources may affect outcomes. CONCLUSIONS: Research has focused on women with gestational breast cancer. Little is known about those diagnosed with other cancers. We encourage future study designs to capture data on sociodemographic, obstetric, oncological and psychiatric characteristics and adopt a longitudinal approach to explore the longer term psychosocial impact on women and their families. Future research should include outcomes that are meaningful for women (and their partners) and draw on international collaboration to accelerate progress in this field.

Mental Health and COVID-19 in University Students: Findings from a Qualitative, Comparative Study in Italy and the UK.

INTRODUCTION: COVID-19 restrictions introduced several changes in university academic and social experience. Self-isolation and online teaching have amplified students' mental health vulnerability. Thus, we aimed to explore feelings and perspectives about the impact of the pandemic on mental health, comparing students from Italy and the UK. METHODS: Data were collected from the qualitative portion of "the CAMPUS study", longitudinally assessing mental health of students at the University of Milano-Bicocca (Italy) and the University of Surrey (UK). We conducted in-depth interviews and thematically analysed the transcripts. RESULTS: The explanatory model was developed from four themes identified across 33 interviews: anxiety exacerbated by COVID-19; putative mechanisms leading to poor mental health; the most vulnerable subgroups; and coping strategies. Generalised and social anxiety resulted from COVID-19 restrictions by being associated with loneliness, excessive time online, unhealthy management of time and space and poor communication with the university. Freshers, international students, and people on the extremes of the introversion/extroversion spectrum, were identified as vulnerable, while effective coping strategies included taking advantage of free time, connection with family and mental health support. The impact of COVID-19 was mostly related to academic issues by students from Italy, whereas to the drastic loss of social connectedness by the UK sample. CONCLUSIONS: Mental health support for students has an essential role, and measures that encourage communication and social connectedness are likely to be beneficial.

Perceptions and experiences of the subjective well-being of people with glioblastoma: a longitudinal phenomenological study.

Background: Glioblastoma (GBM) is a devastating form of brain cancer, with a short life expectancy. In addition to this poor prognosis, people with GBM often experience symptoms that may have a profound impact on their subjective well-being (SWB). The aim of this study was to investigate the lived experiences and perceptions of people with GBM regarding their SWB. Methods: The study adopted a longitudinal, hermeneutical phenomenological approach. Twenty-seven interviews were conducted with 15 patients over a period of two years. Most participants were interviewed twice on a face-to-face basis (during combined chemotherapy and radiotherapy, and again during adjuvant chemotherapy). The hermeneutic circle was used to guide data analysis. Results: Data analysis identified four key themes that depicted the lived experiences and perceptions of SWB of people with GBM. "Experience of the disease" focuses on the impact of diagnosis, symptoms and side effects. "Daily life" relates to daily activities, family roles, work and social lives. "Coping" includes the importance of normality and goal-setting. "Experiences of care" focuses on the impact of the treatment schedule, experiences of care and impressions of the monitoring of QoL. Conclusion: SWB is affected by a variety of factors throughout the GBM disease and treatment journey. The findings of this study suggest that healthcare professionals can enhance the SWB of people with GBM by providing personalized care that supports people to set themselves goals for the future and retain a degree of normality wherever possible.

A systematic review of behavioural and exercise interventions for the prevention and management of chemotherapy-induced peripheral neuropathy symptoms.

BACKGROUND: Chemotherapy-induced peripheral neuropathy (CIPN) can result in functional difficulties. Pharmacological interventions used to prevent CIPN either show low efficacy or lack evidence to support their use and to date, duloxetine remains the only recommended treatment for painful CIPN. Non-pharmacological interventions such as exercise and behavioural interventions for CIPN exist. PURPOSE: The aims were to (1) identify and appraise evidence on existing behavioural and exercise interventions focussed on preventing or managing CIPN symptoms, (2) describe psychological mechanisms of action by which interventions influenced CIPN symptoms, (3) determine the underpinning conceptual models that describe how an intervention may create behaviour change, (4) identify treatment components of each intervention and contextual factors, (5) determine the nature and extent of patient and clinician involvement in developing existing interventions and (6) summarise the relative efficacy or effectiveness of interventions to lessen CIPN symptoms and to improve quality of life, balance and muscle strength. METHODS: A systematic search of Ovid Medline, Cochrane Library, EMBASE, PsycINFO, Health Management Information Consortium, Global Health and CINAHL was performed to identify articles published between January 2000 to May 2020, followed by OpenGrey search and hand-searching of relevant journals. Studies that explored behavioural and/or exercise interventions designed to prevent or improve symptoms of CIPN in adults who had received or were receiving neurotoxic chemotherapy for any type of cancer, irrespective of when delivered within the cancer pathway were included. RESULTS: Nineteen randomised controlled trials and quasi-experimental studies which explored behavioural (n=6) and exercise (n=13) interventions were included. Four studies were rated as methodologically strong, ten were moderate and five were weak. Ten exercise and two behavioural interventions, including those that improved CIPN knowledge and self-management resources and facilitated symptom self-reporting, led to reduced CIPN symptoms during and/or after chemotherapy treatment. CONCLUSIONS: The extent of potential benefits from the interventions was difficult to judge, due to study limitations. Future interventions should incorporate a clear theoretical framework and involve patients and clinicians in the development process. IMPLICATIONS FOR CANCER SURVIVORS: Our findings show exercise interventions have beneficial effects on CIPN symptoms although higher quality research is warranted. Behavioural interventions that increase patient's CIPN knowledge, improve self-management capacity and enable timely access to symptom management led to reduced CIPN symptoms.

Going paper-lite: housebound patient perspectives on the introduction of mobile working.

Healthcare policies promote technology use as a means to modernise healthcare and support seamless, person-centred care. However, despite information technology (IT) use being common practice in clinical settings, its use in patients' homes is still developing. This study explored patients' perspectives on the use of IT and electronic health records (EHR) in their home environment. Semi structured interviews were conducted with housebound patients who received regular care from the district nursing team, and thematic data analysis was undertaken. Participants reported variable knowledge and experiences with mobile working and EHR. Most were positive and identified clear benefits for clinicians. However, few participants reported benefits to themselves. Contrary to popular belief, IT use is expected by older patients and, while barriers were identified, the overall opinion was positive. A digital divide was apparent, with some at risk of being disadvantaged by the increasing use of technology.

Co-designing a behavioural intervention for reducing the impact of chemotherapy-induced peripheral neuropathy symptoms: An evidence- and theory-driven approach.

OBJECTIVE: This study aims to co-design an evidence- and theory-based behavioural intervention to reduce the impact of chemotherapy-induced peripheral neuropathy (CIPN) symptoms on patients' quality of life. METHODS: Guided by the Medical Research Council Framework for developing and evaluating complex interventions, our intervention development process was guided by (a) findings of systematic reviews, (b) inductive analysis of 39 h of observational fieldwork, 12 patient and 11 clinician interviews, (c) deductive analysis using the Common-Sense Model to develop a Self-Regulation Model of CIPN and (d) 17 patients and 18 clinicians co-designing the intervention. RESULTS: CIPN perception and coping behaviours were highlighted as processes to target when co-designing an intervention. The processes targeted in our intervention are CIPN perception and coping behaviours, namely, (a) self-monitoring of symptoms, (b) communicating and early reporting of symptoms to clinicians, (c) participating in making chemotherapy dose reduction decisions with their clinicians and (d) engaging in self-management and safety strategies to reduce impact of CIPN symptoms. To address these, a behavioural intervention was deemed suitable. CONCLUSION: We developed a self-regulation model of CIPN and a logic model for documenting the proposed mechanism of action of our co-designed behavioural intervention for reducing impact of CIPN symptoms.

Co-designing a cancer care intervention: reflections of participants and a doctoral researcher on roles and contributions.

BACKGROUND: Patient and Public Involvement is most usually framed in the context of designing, conducting and/or disseminating research. Participatory methods such as Experience-Based Co-Design (EBCD) further allow service users to directly engage in developing, testing and implementing interventions and services alongside healthcare staff. This paper aims to explore how participants in an EBCD project came-over time-to perceive their role and involvement in co-designing a cancer care intervention. METHODS: The findings are based on our reflections, a research diary, email correspondence and fieldnotes from co-design events. Co-design participants who attended most of the ten co-design events took part through written reflections or audio-recorded video calls. Ten reflective pieces were collected from clinicians (n = 4), PPI group members/patient participants (n = 4), a doctoral researcher (n = 1) and a visual illustrator (n = 1). Inductive data analysis of participant reflections was carried out using reflexive thematic analysis. Meeting fieldnotes, email correspondence and the researcher's diary were deductively analysed using the initial themes generated from this inductive analysis. RESULTS: Five main themes were identified: (1) changing perception of roles during the co-design process, (2) defining a 'co-designer', (3) engagement and ownership, (4) role of the research facilitator in maintaining momentum, and (5) perceived benefits of involvement. CONCLUSION: Our findings show the changing perceptions of roles and contributions among participants over time. Patients typically described their role as co-designers in terms simply of sharing their experiences. In contrast, clinicians perceived themselves as co-designers because they were working with patients who were actively involved in decision-making. Levels of engagement were affected by several factors such as time and facilitation, but most participants came to view themselves as co-owners of the intervention. Overall, participants perceived their involvement as a positive experience with clinicians also reporting wider positive impacts on their clinical practice.

Experience-Based Co-Design is a method for helping patients and clinicians work together to improve healthcare services. Studies of participant experiences in projects which use this method and how they perceive the co-designer role are rare. Our study explores how we­patients and clinicians­saw our role and participation as co-designers over time. Our findings are based on our written and verbal reflections of participating in a co-design project aimed at developing an information resource booklet and film for use in cancer care. We also analysed meeting records, email messages between participants and a reflective diary kept by the researcher who was coordinating the project. Our findings show that views of our roles and contributions as co-design participants changed over time. Patients tended to see themselves as 'co-designers' simply because they shared their experiences throughout the co-design process. In contrast, clinicians saw themselves as 'co-designers' because they were working together with patients and making decisions with them. Factors such as time demands, and the skill of the facilitator affected the commitment of participants to co-design activities. Most participants regard the ownership of the newly developed information resources as being shared. Overall, we viewed our participation in the co-design project as a positive experience with results that will benefit clinical practice.

Adapting a breast cancer early presentation intervention for Black women: A focus group study with women of Black African and Black Caribbean descent in the United Kingdom.

OBJECTIVE: Black women in the United Kingdom are more likely than White women to be diagnosed with advanced breast cancer and have lower survival rates. We consulted women of Black Caribbean and Black African descent in the United Kingdom on how the Promoting Early Presentation (PEP) booklet and intervention could be adapted for Black women to promote early presentation with breast cancer symptoms. METHODS: Focus groups with 22 women of Black African and Black Caribbean descent, of whom five had been treated for breast cancer. The participants were recruited from a large UK breast cancer charity and community settings. Data were analysed using Framework Analysis. RESULTS: Four themes summarised the participants' views on how the booklet and intervention could be adapted: Justify the focus on Black women, Black people do not talk about cancer, Make interventions inclusive and engaging, and Engage Black communities to deliver interventions. CONCLUSION: Breast cancer behaviour change interventions need to be more inclusive, illustrate how breast cancer symptoms manifest on black skin, and emphasise that breast cancer is curable to increase awareness and reduce cancer fear. Researchers should involve Black communities in the design and delivery of interventions to address appropriately cultural barriers to early presentation.

COVID-19 health information needs of older adults from ethnic minority groups in the UK: a qualitative study.

OBJECTIVE: This study aimed to identify the COVID-19 health information needs of older adults from ethnic minority groups in the UK. STUDY DESIGN: A qualitative study using semistructured interviews. SETTING AND PARTICIPANTS: Indian and Nepalese older adults (≥65 years), their families (≥18 years) and healthcare professionals (HCPs) (≥18 years) engaging with these communities. Participants were recruited between July and December 2020 from Kent, Surrey and Sussex through community organisations. RESULTS: 24 participants took part in the study; 13 older adults, 7 family members and 4 HCPs. Thirteen participants were female, and the majority (n=17) spoke a language other than English at home. Older participants mostly lived in multigenerational households, and family and community were key for providing support and communicating about healthcare needs. Participants' knowledge of COVID-19 varied widely; some spoke confidently about the subject, while others had limited information. Language and illiteracy were key barriers to accessing health information. Participants highlighted the need for information in multiple formats and languages, and discussed the importance of culturally appropriate avenues, such as community centres and religious sites, for information dissemination. CONCLUSION: This study, undertaken during the COVID-19 pandemic, provides insight into how health information can be optimised for ethnic minority older adults in terms of content, format and cultural relevance. The study highlights that health information interventions should recognise the intersection between multigenerational living, family structure, and the health and well-being of older adults, and should promote intergenerational discussion.

Understanding Public Priorities and Perceptions of the Use of Linked Healthcare Data in South East England.

The counties of Kent, Surrey and Sussex (KSS) in South East England are creating anonymized, linked databases of healthcare records for audit, service planning and research for the first time. We consulted with 79 citizens from KSS in 5 deliberative focus groups, asking about perceived benefits and concerns regarding these new data assets. Participants hoped the linked datasets could be used for joining up care and information, improving efficiency, and improving healthcare provision, but were concerned about missing and inaccurate data, data breaches and hacking, use of data by profit-making organisations, and stigma and discrimination. Findings will be used to underpin governance and engagement strategies for integrated datasets in KSS.