The Experience of Cancer-Related Cognitive Impairment Across Common Cancers: Protocol for a Qualitative Systematic Review.

BACKGROUND: Cancer-related cognitive impairment (CRCI) is commonly experienced by patients with cancer during treatment, and 35% of patients experience cognitive impairment after treatment completion. Impairments in memory, attention, executive functioning, and information processing speed are most reported and often negatively impact daily functioning and quality of life (QoL). Despite the large scale of reports, this adverse side effect is underinvestigated across common cancer types, and there is a lack of insight into the CRCI experience. OBJECTIVE: This qualitative synthesis aims to explore the evidence in relation to the experience of CRCI across common cancers. It also aims to understand the prevalence of CRCI across various cancer types, cognitive domains, and its impact on QoL and functional ability. METHODS: A comprehensive search of databases, including PubMed, American Psychological Association PsycINFO, CINAHL, and Scopus, will be conducted. A total of 2 independent reviewers will screen titles and abstracts for inclusion, followed by full-text screening. A third reviewer will resolve any arising conflicts in the process of data screening and inclusion. Subsequently, data extraction and quality assessment using the Critical Appraisal Skills Programme (CASP) tool will be conducted. The results will be analyzed using thematic analysis. RESULTS: This review is part of a PhD program funded in January 2023. The review commenced in June 2023, and data analysis is currently in progress. The qualitative synthesis will explore the experiences of CRCI across common cancers. The included studies are expected to report on numerous cancer types such as breast cancer, prostate cancer, leukemia, and lung cancer. The included study types are most likely to be interviews, focus groups, and surveys with qualitative components. CONCLUSIONS: This protocol highlights the need for a qualitative synthesis that will explore the experience of CRCI across common cancer types. It will provide valuable insight into the lived experience of CRCI and the cognitive domains that may be disproportionately affected. There is a growing demand for further management interventions and clinically tested treatments of CRCI and the qualitative exploration of patient experience is crucial for their development. This qualitative synthesis will inform future developments and will contribute to improving QoL after cancer. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56888.

Patients' Experiences of Digital Health Interventions for the Self-Management of Chronic Pain: Protocol for a Systematic Review and Thematic Synthesis.

BACKGROUND: Chronic pain is a highly prevalent condition that requires multidisciplinary treatment. However, in the United Kingdom, access to specialist pain clinics where patients can receive medical multidisciplinary treatment is limited, and provision varies between health boards. As such, self-management of chronic pain using digital tools has been gaining traction recently, but evidence of its effectiveness from clinical-based trials focuses mainly on quantitative outcomes. OBJECTIVE: This systematic review aims to identify, appraise, and synthesize qualitative evidence on patients' experiences with digital health interventions (DHIs) for the management of chronic pain. METHODS: This systematic review will consider qualitative and mixed methods studies that explore the experience of patients (aged 18 years and older) with chronic pain engaging in DHIs to manage their pain. MEDLINE Ovid, PubMed, Embase, CINAHL, PsycINFO, and Scopus databases will be searched for published studies. The systematic review will be conducted in accordance with the ENTREQ (Enhancing Transparency in Reporting the Synthesis of Qualitative Research) guidelines. Following the 3-step thematic synthesis methodology of Thomas and Harden, titles and abstracts will be screened by 2 independent reviewers (AM and HM), and a third reviewer (MI or FM) will resolve any conflict that arises before the full-text screening. The Critical Appraisal Skills Programme checklist tool will be used to critically appraise the included studies. The extracted data will be imported to NVivo (QSR International), where thematic synthesis will be used to derive analytical themes from the included studies. RESULTS: Themes that encapsulate the patient experience will be identified from qualitative evidence, and these themes will shed light on the perceived benefits and disadvantages, usability, acceptability, and the overall impact digital tools can have on the lives of those with chronic pain. CONCLUSIONS: This systematic review will identify, appraise, and synthesize the overall experience of patients engaging in DHI to manage a diverse range of chronic pain conditions. By elaborating the patient experience through qualitative analysis, the findings from this review will enhance our current understanding of the experiences of patients with chronic pain using digital tools for the self-management of their pain and highlight what person-centered elements are essential for future DHI development. TRIAL REGISTRATION: PROSPERO CRD42023445100; http://tinyurl.com/4z77khfs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52469.

Professional-Facing Digital Health Solutions for the Care of Patients With Chronic Pain: Protocol for a Systematic Scoping Review.

BACKGROUND: Chronic pain is a highly prevalent condition and one of the most common reasons why people seek health care. As a result, chronic pain has a significant personal and economic burden. The COVID-19 pandemic has aggravated the situation for patients with chronic pain through increased risk factors (eg, anxiety or depression) as well as decreased access to health care. Digital health solutions to support people with chronic pain are becoming increasingly popular. Most of the research has focused on patient-facing digital health solutions, although it is clear that the involvement of health and care professionals is crucial in chronic pain care. Certainly, digital health solutions intended for the use of health and care professionals in the care of patients with chronic pain (ie, professional facing) exist, for example, for clinical decision support; however, no review has investigated the studies reporting these interventions. OBJECTIVE: The overall aim of this scoping review is to identify the available professional-facing digital health solutions for the purpose of chronic pain management. The objectives of this review are to investigate the components, target populations, and user settings of the available professional-facing digital solutions; health and care professionals' perspectives on using digital health solutions (if reported); the methods in which the digital health solutions are developed; and the outcomes of using professional-facing digital health solutions. METHODS: Databases including MEDLINE, Embase, CINAHL, PsycInfo, and Inspec will be searched for studies reporting professional-facing digital health solutions for chronic pain care, using a comprehensive search strategy developed for each of the specific databases. A total of 2 independent reviewers will screen the titles and abstracts for review inclusion and then conduct full-text screening. Any conflicts in study inclusion will be resolved by a third reviewer at each stage of the screening process. Following data extraction and quality assessment, a qualitative content analysis of the results will be conducted. This review will identify the available professional-facing digital health solutions for chronic pain management. The results of this review are likely to be heterogeneous in terms of content (ie, the digital solutions will serve a variety of purposes, settings, target populations, etc) and methods (ie, experimental and nonexperimental designs). RESULTS: The review is expected to finish in March 2024 and published in the summer of 2024. CONCLUSIONS: This protocol outlines the need for a scoping review to identify professional-facing digital health solutions for the management of chronic pain. Results from this review will contribute to the growing field of research into the utility of digital health for chronic pain management. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/51311.

Relationship and Attachment to Digital Health Technology During Cancer Treatment.

OBJECTIVE: The aim of this study is to explore the relationship that people with cancer and their family caregivers develop with symptom management technology during chemotherapy. DATA SOURCES: A longitudinal and multi-perspective interpretative phenomenological approach was adopted. Data were collected using one-to-one in-depth interviews with people with colorectal cancer using supportive digital health symptom management technology (n=3) and their family caregivers (n=4) at two time points during chemotherapy treatment. Data were analyzed using interpretative phenomenological analysis and followed COREQ guidelines. CONCLUSION: People with cancer and their family caregivers can develop emotional bonds with supportive symptom management technology during cancer treatment. Digital health technology can be experienced as a person guiding them during their cancer treatment. Participants felt vulnerable after the technology was returned to the research team. Participants recognized that it was not the technology that successfully facilitated them through their initial chemotherapy cycles; rather, the technology helped them learn to manage their symptoms and promoted their self-efficacy, as well as how to emotionally respond. IMPLICATIONS FOR NURSING PRACTICE: The relationship and psychological bonds people with cancer and their family caregivers develop with technology during treatment may be critically important for oncology nurses to be aware of should digital health be prescribed within the outpatient model of cancer care. This study indicates that technology may not be needed for a full treatment experience, as digital health can promote confidence and self-efficacy regarding symptom management and prepare people with cancer to be independent after the digital health technology is returned to the research team. However, further research is needed regarding individual preferences for digital health provision.

Ghana 3D Telemedicine International MDT: A proof-of-concept study.

A real-time 3D Telemedicine system - leveraging Microsoft's Holoportation™ communication technology - enabled an international multidisciplinary team meeting (MDT) to consult with complex reconstructive patients before, during, and after an overseas surgical collaboration. METHODS: A proof-of-concept international 3D MDT clinic took place in November 2022, between the Canniesburn Plastic Surgery Unit, UK, and the National Reconstructive Plastic Surgery and Burns Centre, Korle Bu Teaching Hospital, Ghana. The 3D system was utilised 1) previsit to assess patients and enable logistical planning, 2) on-site in Ghana to further allow patients to see themselves and proposed operations in 3D, and 3) post visit to debrief the team and patients. RESULTS: Four Ghana patients were followed through their patient journey (mandibular ameloblastoma, sarcoma thigh, maxillary tumour, sarcoma back). Thirteen participants (four patients, four Ghana clinicians, and five UK clinicians) completed feedback on the 3D MDT. Outcome measures were rated highly with satisfaction 84.31/100, perceived benefit 4.54/5, overall quality 127.3/147 (Telehealth Usability Questionnaire), and usability 83.2/100 (System Usability Scale). These data show close alignment with that previously published on high-income countries. CONCLUSIONS: This novel technology has the potential to enhance the delivery of overseas surgical visits to low-to-middle-income countries, by improving planning, informed discussion with patients, expert consensus on complex cases, and fostering engagement with professionals who may be thousands of miles away. This is the first demonstration that real-time 3D Telemedicine can both work, and enhance care within an international MDT clinic, and may thus enable change in the approach to overseas surgical collaborations.

A sociotechnical framework to assess patient-facing eHealth tools: results of a modified Delphi process.

Among the thousands of eHealth tools available, the vast majority do not get past pilot phases because they cannot prove value, and only a few have been systematically assessed. Although multiple eHealth assessment frameworks have been developed, these efforts face multiple challenges. This study aimed to address some of these challenges by validating and refining an initial list of 55 assessment criteria based on previous frameworks through a two-round modified Delphi process with in-between rounds of interviews. The expert panel (n = 57) included participants from 18 countries and 9 concerned parties. A consensus was reached on 46 criteria that were classified into foundational and contextual criteria. The 36 foundational criteria focus on evaluating the eHealth tool itself and were grouped into nine clusters: technical aspects, clinical utility and safety, usability and human centricity, functionality, content, data management, endorsement, maintenance, and developer. The 10 contextual criteria focus on evaluating the factors that vary depending on the context the tool is being evaluated for and were grouped into seven clusters: data-protection compliance, safety regulatory compliance, interoperability and data integration, cultural requirements, affordability, cost-benefit, and implementability. The classification of criteria into foundational and contextual helps us assess not only the quality of an isolated tool, but also its potential fit in a specific setting. Criteria subscales may be particularly relevant when determining the strengths and weaknesses of the tool being evaluated. This granularity enables different concerned parties to make informed decisions about which tools to consider according to their specific needs and priorities.

Co-design and prototype development of the 'Ayzot App': A mobile phone based remote monitoring system for palliative care.

BACKGROUND: Palliative care, a recognised component of care by the World Health Organization is poorly developed in low- and middle-income countries. Mobile phone technology, an effective way to increase access and sustainability of healthcare systems globally, has demonstrated benefits within palliative care service delivery, but is yet to be utilised in Ethiopia. AIM: To co-design, develop and evaluate a mobile phone based remote monitoring system for use by palliative care patients in Ethiopia. DESIGN: Two-phase co-design approach comprising multiple methods that is stakeholder interviews, focus groups, user-co-creation activities and healthcare worker prioritisation discussions 2019-2020. Phase-1 interviews (n = 40), Phase-2 focus groups (n = 3) and interviews (n = 10). SETTING/PARTICIPANTS: Hospice Ethiopia and Yekatit 12 Medical College Hospital: healthcare workers, palliative care patients, family carers & software-developers. RESULTS: Co-design activities lead to development of the prototype 'Ayzot' application, which was well received and reported to be easy to use. Patients, and family caregivers saw provision of self-care information and symptom management as a key function of the App and expressed very positive attitudes towards such information being included. Healthcare workers found the App offered service benefits, in terms of time and cost-savings. CONCLUSION: This paper provides a detailed example of the development and design of a prototype remote monitoring system using mobile phone technology for palliative care use in Ethiopia. Further development and real-world testing are required, to not only understand how it acts within usual care to deliver anticipated benefits but also to explore its effectiveness and provide cost estimates for wider implementation.

Evaluation of an Innovative Colon Capsule Endoscopy Service in Scotland From the Perspective of Patients: Mixed Methods Study.

BACKGROUND: Colonoscopy is the gold standard for lower gastrointestinal diagnostics. The procedure is invasive, and its demand is high, resulting in long waiting times. Colon capsule endoscopy (CCE) is a procedure that uses a video capsule to investigate the colon, meaning that it can be carried out in a person's own home. This type of "hospital-at-home" service could potentially reduce costs and waiting times, and increase patient satisfaction. Little is currently understood, however, about how CCE is actually experienced and accepted by patients. OBJECTIVE: The aim of this study was to capture and report patient experiences of the CCE technology (the capsule and associated belt and recorder) and of the new clinical pathway for the CCE service being rolled out as part of routine service in Scotland. METHODS: This was a mixed methods service evaluation of patient experiences of a real-world, deployed, managed service for CCE in Scotland. Two hundred and nine patients provided feedback via a survey about their experiences of the CCE service. Eighteen of these patients took part in a further telephone interview to capture more in-depth lived experiences to understand the barriers and opportunities for the further adoption and scaling up of the CCE service in a way that supports the patient experience and journey. RESULTS: Patients overall perceived the CCE service to be of significant value (eg, mentioning reduced travel times, reduced waiting times, and freedom to complete the procedure at home as perceived benefits). Our findings also highlighted the importance of clear and accessible information (eg, what to expect and how to undertake the bowel preparation) and the need for managing expectations of patients (eg, being clear about when results will be received and what happens if a further colonoscopy is required). CONCLUSIONS: The findings led to recommendations for future implementations of managed CCE services in National Health Service (NHS) Scotland that could also apply more widely (United Kingdom and beyond) and at a greater scale (with more patients in more contexts). These include promoting CCE with, for, and among clinical teams to ensure adoption and success; capturing and understanding reasons why patients do and do not opt for CCE; providing clear information in a variety of appropriate ways to patients (eg, around the importance of bowel preparation instructions); improving the bowel preparation (this is not specific to CCE alone); providing flexible options for issuing and returning the kit (eg, dropping off at a pharmacy); and embedding formative evaluation within the service itself (eg, capturing patient-reported experiences via surveys in the information pack when the equipment is returned).

Digital health in head and neck cancer: a systematic review.

OBJECTIVE: Digital health tools are increasingly being recognised as effective interventions in monitoring chronic health conditions. This systematic review addressed how digital health is currently utilised in patients with head and neck cancer as an adjunct to care. METHOD: Studies of the development or evaluation of an eHealth, telemedicine or telemonitoring tool were eligible. A narrative synthesis was performed as per Preferred Reporting Items for Systematic Review and Meta-Analyses reporting guidelines. RESULTS: Twenty-nine studies of digital health tools in head and neck cancer were identified. Nine were randomised, controlled trials but most had concern of bias. Fourteen (48 per cent) of the interventions used multiple modes of delivery. The primary digital tool functions are symptom tracking and self-care, prehabilitation and rehabilitation, psychological support, and education, including decision aids. Most tools aimed to support patients during active cancer treatment. CONCLUSION: There are a small number of digital health tools for head and neck cancer patients; however, there is a lack of well-designed randomised, controlled trials to demonstrate effectiveness.

Promoting Self-management and Patient Activation Through eHealth: Protocol for a Systematic Literature Review and Meta-analysis.

BACKGROUND: Major advances in different cancer treatment modalities have been made, and people are now living longer with cancer. However, patients with cancer experience a range of physical and psychological symptoms during and beyond cancer treatment. New models of care are needed to combat this rising challenge. A growing body of evidence supports the effectiveness of eHealth interventions in the delivery of supportive care to people living with the complexities of chronic health conditions. However, reviews on the effects of eHealth interventions are scarce in the field of cancer-supportive care, particularly for interventions with the aim of empowering patients to manage cancer treatment-related symptoms. For this reason, this protocol has been developed to guide a systematic review and meta-analysis to assess the effectiveness of eHealth interventions for supporting patients with cancer in managing cancer-related symptoms. OBJECTIVE: This systematic review with meta-analysis is conducted with the aim of identifying eHealth-based self-management intervention studies for adult patients with cancer and evaluating the efficacy of eHealth-based self-management tools and platforms in order to synthesize the empirical evidence on self-management and patient activation through eHealth. METHODS: A systematic review with meta-analysis and methodological critique of randomized controlled trials is conducted following Cochrane Collaboration methods. Multiple data sources are used to identify all potential research sources for inclusion in the systematic review: (1) electronic databases such as MEDLINE, (2) forward reference searching, and (3) gray literature. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines for conducting the review were followed. The PICOS (Population, Interventions, Comparators, Outcomes, and Study Design) framework is used to identify relevant studies. RESULTS: The literature search yielded 10,202 publications. The title and abstract screening were completed in May 2022. Data will be summarized, and if possible, meta-analyses will be performed. It is expected to finalize this review by Winter 2023. CONCLUSIONS: The results of this systematic review will provide the latest data on leveraging eHealth interventions and offering effective and sustainable eHealth care, both of which have the potential to improve quality and efficiency in cancer-related symptoms. TRIAL REGISTRATION: PROSPERO 325582; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=325582. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38758.

Participatory development of a 3D telemedicine system during COVID: The future of remote consultations.

BACKGROUND: The COVID pandemic brought the need for more realistic remote consultations into focus. 2D Telemedicine solutions fail to replicate the fluency or authenticity of in-person consultations. This research reports on an international collaboration on the participatory development and first validated clinical use of a novel, real-time 360-degree 3D Telemedicine system worldwide. The development of the system - leveraging Microsoft's Holoportation™ communication technology - commenced at the Canniesburn Plastic Surgery Unit, Glasgow, in March 2020. METHODS: The research followed the VR CORE guidelines on the development of digital health trials, placing patients at the heart of the development process. This consisted of three separate studies - a clinician feedback study (23 clinicians, Nov-Dec 2020), a patient feedback study (26 patients, Jul-Oct 2021), and a cohort study focusing on safety and reliability (40 patients, Oct 2021-Mar 2022). "Lose, Keep, and Change" feedback prompts were used to engage patients in the development process and guide incremental improvements. RESULTS: Participatory testing demonstrated improved patient metrics with 3D in comparison to 2D Telemedicine, including validated measures of satisfaction (p<0.0001), realism or 'presence' (Single Item Presence scale, p<0.0001), and quality (Telehealth Usability Questionnaire, p = 0.0002). The safety and clinical concordance (95%) of 3D Telemedicine with a face-to-face consultation were equivalent or exceeded estimates for 2D Telemedicine. CONCLUSIONS: One of the ultimate goals of telemedicine is for the quality of remote consultations to get closer to the experience of face-to-face consultations. These data provide the first evidence that Holoportation™ communication technology brings 3D Telemedicine closer to this goal than a 2D equivalent.

Assessment of the Effectiveness, Socio-Economic Impact and Implementation of a Digital Solution for Patients with Advanced Chronic Diseases: The ADLIFE Study Protocol.

Due to population ageing and medical advances, people with advanced chronic diseases (ACD) live longer. Such patients are even more likely to face either temporary or permanent reduced functional reserve, which typically further increases their healthcare resource use and the burden of care on their caregiver(s). Accordingly, these patients and their caregiver(s) may benefit from integrated supportive care provided via digitally supported interventions. This approach may either maintain or improve their quality of life, increase their independence, and optimize the healthcare resource use from early stages. ADLIFE is an EU-funded project, aiming to improve the quality of life of older people with ACD by providing integrated personalized care via a digitally enabled toolbox. Indeed, the ADLIFE toolbox is a digital solution which provides patients, caregivers, and health professionals with digitally enabled, integrated, and personalized care, supporting clinical decisions, and encouraging independence and self-management. Here we present the protocol of the ADLIFE study, which is designed to provide robust scientific evidence on the assessment of the effectiveness, socio-economic, implementation, and technology acceptance aspects of the ADLIFE intervention compared to the current standard of care (SoC) when applied in real-life settings of seven different pilot sites across six countries. A quasi-experimental trial following a multicenter, non-randomized, non-concurrent, unblinded, and controlled design will be implemented. Patients in the intervention group will receive the ADLIFE intervention, while patients in the control group will receive SoC. The assessment of the ADLIFE intervention will be conducted using a mixed-methods approach.

A bridge from uncertainty to understanding: The meaning of symptom management digital health technology during cancer treatment.

Objective: Digital health technology is valued as a tool to provide person-centred care and improve health outcomes amongst people with cancer and their family caregivers. Although the evidence to date shows encouraging effectiveness, there is limited knowledge regarding the lived experience and personal meaning of using supportive technology during cancer treatment. The aim of this study was to explore the lived experiences of people with colorectal cancer receiving chemotherapy using digital health symptom management technology and their family caregivers. Methods: A longitudinal and multi-perspective interpretative phenomenological analytical approach was adopted including three people with newly diagnosed colorectal cancer and four family caregivers. Findings: Three superordinate themes and related subthemes were identified. The first theme (The 3 Cs of symptom management technology) centred on the continuity of care that participants felt while using the technology. The second theme (Digital health technology as a psychosocial support) offered insights into the psychological benefits using technology incurred as they navigated their cancer diagnosis including sense of control and psychological safety. The final theme (Impact of digital health technology on family caregivers) details the supportive effect the technology had on family caregivers' role, responsibilities and well-being during the cancer experience. Conclusion: Digital health technology can act as a bridge from uncertainty to an understanding regarding a cancer diagnosis and its treatment. Digital health technology can support peoples' understanding of cancer and enhance self-management practices, while being a psychological support in navigating the uncertain and often worrying period of receiving cancer treatment.

Supporting Physical Activity for Informal Caregivers during and beyond COVID-19: Exploring the Feasibility, Usability and Acceptability of a Digital Health Smartphone Application, 'CareFit'.

The COVID-19 pandemic has exposed how our global societies rely upon the care and support of informal (unpaid) caregivers: in the UK alone, there are an estimated 6.5 million informal carers. The caring role is not just precarious, it is often associated with high levels of stress, poor/deteriorating health and crisis points (hospitalisations, worsening of health). Fittingly, there has been much research in recent years focusing on mental health supports. A lesser explored area is physical health and physical activity. To address this, we conducted a real-world feasibility, usability and acceptability study of a novel codesigned digital health app for caregivers to improve levels of physical activity. Our study was designed to test the prototype app use for three weeks, following participants across questionnaires/in app data/qualitative data. Our findings (from 27 caregivers) highlights key knowledge gaps around physical activity-national guidelines were not reaching populations studies and behavioural change techniques hold promise to help support caregivers in the longer term. Our collective results support the acceptability, usability and feasibility of the Carefit app and warrant further investigation.

Decision Support Tools in Adult Long-term Care Facilities: Scoping Review.

BACKGROUND: Digital innovations are yet to make real impacts in the care home sector despite the considerable potential of digital health approaches to help with continued staff shortages and to improve quality of care. To understand the current landscape of digital innovation in long-term care facilities such as nursing and care homes, it is important to find out which clinical decision support tools are currently used in long-term care facilities, what their purpose is, how they were developed, and what types of data they use. OBJECTIVE: The aim of this review was to analyze studies that evaluated clinical decision support tools in long-term care facilities based on the purpose and intended users of the tools, the evidence base used to develop the tools, how the tools are used and their effectiveness, and the types of data the tools use to contribute to the existing scientific evidence to inform a roadmap for digital innovation, specifically for clinical decision support tools, in long-term care facilities. METHODS: A review of the literature published between January 1, 2010, and July 21, 2021, was conducted, using key search terms in 3 scientific journal databases: PubMed, Cochrane Library, and the British Nursing Index. Only studies evaluating clinical decision support tools in long-term care facilities were included in the review. RESULTS: In total, 17 papers were included in the final review. The clinical decision support tools described in these papers were evaluated for medication management, pressure ulcer prevention, dementia management, falls prevention, hospitalization, malnutrition prevention, urinary tract infection, and COVID-19 infection. In general, the included studies show that decision support tools can show improvements in delivery of care and in health outcomes. CONCLUSIONS: Although the studies demonstrate the potential of positive impact of clinical decision support tools, there is variability in results, in part because of the diversity of types of decision support tools, users, and contexts as well as limited validation of the tools in use and in part because of the lack of clarity in defining the whole intervention.

Understanding Current Needs and Future Expectations of Informal Caregivers for Technology to Support Health and Well-being: National Survey Study.

BACKGROUND: There are approximately 6.5 million informal (unpaid) caregivers in the United Kingdom. Each caregiver plays a critical role in the society, supporting the health and well-being of those who are ill, disabled, or older and who need frequent support. Digital technologies are becoming a ubiquitous part of everyday life for many, but little is known about the real-world impact of technology for those in a caring role, including the abilities of technologies to address the mental and physical impacts of caregiving. OBJECTIVE: This study aims to understand the current and future technology use of caregivers, including digital technologies used to care for themselves and the person they look after. METHODS: We codeveloped a wide range of questions with caregivers and care professionals and delivered this survey both on the web and in paper format (eg, using social networks such as Twitter alongside in-person events). Questions were focused on providing care and looking after caregiver health and well-being. Analyses focused on both quantitative outcomes (frequency counts and Likert questions) and explored free text entries (thematic analysis). RESULTS: From 356 respondents, we identified that caregivers were receptive to, and largely positive about current and future use of technology both for their own care and their caring role (eg, checking in from distance). There were notable concerns, including the risk that technology could replace human contact. We identified several key areas for future work, including communication with health and social care professionals, and the potential for technology to help caregivers with their own health. We also identified several stakeholders (eg, care workers, pharmacy staff, and general practitioners) who could act as suitable points for technology signposting and support. CONCLUSIONS: Caregivers are a transient, often difficult to reach population, and this work has collated a large body of knowledge across a diverse group of individuals. Many caregivers, like the rest of society, are realizing the benefits of using everyday technology to help deliver care. It is clear that there is already a high level of dependency on technologies, where future expectations will grow. However, many barriers to digital technology use remain, including a lack of ongoing technology support. Preventive measures linked to technology that can help look after a caregiver's own health appear acceptable, particularly for communicative tools. This collated caregiver knowledge is a call for all stakeholders-academics, policy makers, and practitioners-to take note of these specific challenges, and to ensure that caregiver voices are both heard and fully integrated within the emerging digital health agenda.

Building a Research Roadmap for Caregiver Innovation: Findings from a Multi-Stakeholder Consultation and Evaluation.

Across the world, informal (unpaid) caregiving has become the predominant model for community care: in the UK alone, there are an estimated 6.5 million caregivers supporting family members and friends on a regular basis, saving health and social care services approximately £132 billion per year. Despite our collective reliance on this group (particularly during the COVID-19 pandemic), quality of life for caregivers is often poor and there is an urgent need for disruptive innovations. The aim of this study was to explore what a future roadmap for innovation could look like through a multi-stakeholder consultation and evaluation. An online survey was developed and distributed through convenience sampling, targeting both the informal caregiver and professionals/innovators interested in the caregiver demographic. Data were analysed using both quantitative (summary statistics) and qualitative (inductive thematic analysis) methods in order to develop recommendations for future multi-stakeholder collaboration and meaningful innovation. The survey collected 174 responses from 112 informal caregivers and 62 professionals/innovators. Responses across these stakeholder groups identified that there is currently a missed opportunity to harness the value of the voice of the caregiver demographic. Although time and accessibility issues are considerable barriers to engagement with this stakeholder group, respondents were clear that regular contributions, ideally no more than 20 to 30 min a month could provide a realistic route for input, particularly through online approaches supported by community-based events. In conclusion, the landscape of digital health and wellness is becoming ever more sophisticated, where both industrial and academic innovators could establish new routes to identify, reach, inform, signpost, intervene and support vital and vulnerable groups such as the caregiver demographic. Here, the findings from a consultation with caregivers and professionals interested in informal caring are presented to help design the first stages of a roadmap through identifying priorities and actions that could help accelerate future research and policy that will lead to meaningful and innovative solutions.

Effects of a Brief E-Learning Resource on Sexual Attitudes and Beliefs of Healthcare Professionals Working in Prostate Cancer Care: A Pilot Study.

Sexual issues and treatment side effects are not routinely discussed with men receiving treatment for prostate cancer, and support to address these concerns is not consistent across settings. This study evaluates a brief e-learning resource designed to improve sexual wellbeing support and examine its effects on healthcare professionals' sexual attitudes and beliefs. Healthcare professionals (n = 44) completed an online questionnaire at baseline which included a modified 12-item sexual attitudes and beliefs survey (SABS). Follow-up questionnaires were completed immediately after the e-learning and at 4 weeks. Data were analysed using one-way, repeat measures ANOVAs to assess change in attitudes and beliefs over time. Significant improvements were observed at follow-up for a number of survey statements including 'knowledge and understanding', 'confidence in discussing sexual wellbeing' and the extent to which participants felt 'equipped with the language to initiate conversations'. The resource was seen as concise, relevant to practice and as providing useful information on potential side effects of treatment. In brief, e-learning has potential to address barriers to sexual wellbeing communication and promote delivery of support for prostate cancer survivors. Practical methods and resources should be included with these interventions to support implementation of learning and long-term changes in clinical behaviour.

A Novel Mobile App ("CareFit") to Support Informal Caregivers to Undertake Regular Physical Activity From Home During and Beyond COVID-19 Restrictions: Co-design and Prototype Development Study.

BACKGROUND: Informal caregivers, or carers (unpaid family members and friends), are instrumental to millions worldwide for the ongoing delivery of health and well-being needs. The risk of crisis points (eg, hospitalizations) for caregivers increases with the absence of physical activity. The COVID-19 pandemic is highly likely to have increased the risk of crisis points for caregivers by increasing the amount of time spent indoors due to shielding and lockdown restrictions. Thus, accessible evidence-based tools to facilitate physical activity for caregivers indoors are urgently needed. OBJECTIVE: The aim of this study was to co-design and develop a novel mobile app to educate and support carers in the undertaking of regular physical activity at home during and beyond COVID-19 restrictions via integration of the transtheoretical model of behavior change and UK physical activity guidelines. METHODS: We co-designed a mobile app, "CareFit," by directly involving caregivers, health care professionals, and social care professionals in the requirements, capturing, and evaluation phases of three Agile Scrum design and development sprints. Seven participants representing multistakeholder views took part in three co-design sessions, each of which was followed by a development sprint. Requirements for CareFit were grounded in a combination of behavioral change science and UK government guidelines for physical activity. RESULTS: Participants identified different barriers and enablers to physical activity, such as a lack of time, recognition of existing activities, and concerns regarding safely undertaking physical activity. Requirements analysis highlighted the importance of simplicity in design and a need to anchor development around the everyday needs of caregivers (eg, easy-to-use video instructions). Our final prototype app integrated guidance for undertaking physical activity at home through educational, physical activity, and communication components. CONCLUSIONS: Integrating government guidelines with models of behavioral change into a mobile app to support the physical activity of carers is novel. We found that integrating core physical activity guidelines into a co-designed smartphone app with functionality such as a weekly planner and educational material for users is feasible. This work holds promise to fill the gap of effective physical activity solutions for caregivers both during and beyond the COVID-19 pandemic. Further work is now needed to explore the feasibility, acceptability, and usability of the approach in real-world settings.

Real time remote symptom monitoring during chemotherapy for cancer: European multicentre randomised controlled trial (eSMART).

OBJECTIVE: To evaluate effects of remote monitoring of adjuvant chemotherapy related side effects via the Advanced Symptom Management System (ASyMS) on symptom burden, quality of life, supportive care needs, anxiety, self-efficacy, and work limitations. DESIGN: Multicentre, repeated measures, parallel group, evaluator masked, stratified randomised controlled trial. SETTING: Twelve cancer centres in Austria, Greece, Norway, Republic of Ireland, and UK. PARTICIPANTS: 829 patients with non-metastatic breast cancer, colorectal cancer, Hodgkin's disease, or non-Hodgkin's lymphoma receiving first line adjuvant chemotherapy or chemotherapy for the first time in five years. INTERVENTION: Patients were randomised to ASyMS (intervention; n=415) or standard care (control; n=414) over six cycles of chemotherapy. MAIN OUTCOME MEASURES: The primary outcome was symptom burden (Memorial Symptom Assessment Scale; MSAS). Secondary outcomes were health related quality of life (Functional Assessment of Cancer Therapy-General; FACT-G), Supportive Care Needs Survey Short-Form (SCNS-SF34), State-Trait Anxiety Inventory-Revised (STAI-R), Communication and Attitudinal Self-Efficacy scale for cancer (CASE-Cancer), and work limitations questionnaire (WLQ). RESULTS: For the intervention group, symptom burden remained at pre-chemotherapy treatment levels, whereas controls reported an increase from cycle 1 onwards (least squares absolute mean difference -0.15, 95% confidence interval -0.19 to -0.12; P<0.001; Cohen's D effect size=0.5). Analysis of MSAS sub-domains indicated significant reductions in favour of ASyMS for global distress index (-0.21, -0.27 to -0.16; P<0.001), psychological symptoms (-0.16, -0.23 to -0.10; P<0.001), and physical symptoms (-0.21, -0.26 to -0.17; P<0.001). FACT-G scores were higher in the intervention group across all cycles (mean difference 4.06, 95% confidence interval 2.65 to 5.46; P<0.001), whereas mean scores for STAI-R trait (-1.15, -1.90 to -0.41; P=0.003) and STAI-R state anxiety (-1.13, -2.06 to -0.20; P=0.02) were lower. CASE-Cancer scores were higher in the intervention group (mean difference 0.81, 0.19 to 1.43; P=0.01), and most SCNS-SF34 domains were lower, including sexuality needs (-1.56, -3.11 to -0.01; P<0.05), patient care and support needs (-1.74, -3.31 to -0.16; P=0.03), and physical and daily living needs (-2.8, -5.0 to -0.6; P=0.01). Other SCNS-SF34 domains and WLQ were not significantly different. Safety of ASyMS was satisfactory. Neutropenic events were higher in the intervention group. CONCLUSIONS: Significant reduction in symptom burden supports the use of ASyMS for remote symptom monitoring in cancer care. A "medium" Cohen's effect size of 0.5 showed a sizable, positive clinical effect of ASyMS on patients' symptom experiences. Remote monitoring systems will be vital for future services, particularly with blended models of care delivery arising from the covid-19 pandemic. TRIAL REGISTRATION: Clinicaltrials.gov NCT02356081.