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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.
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Grupos Focais , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Antineoplásicos/efeitos adversos , Antineoplásicos/uso terapêutico , Adulto , Idoso , Neoplasias/tratamento farmacológico , Neoplasias/psicologia , Medição de Risco/métodos , Entrevistas como Assunto , Atitude do Pessoal de Saúde , Pesquisa Qualitativa , PercepçãoRESUMO
Introduction: Research indicates that take-home naloxone (THN) is saving lives across rural Appalachia, but whether it also results in treatment for opioid use disorders (OUDs) remains unclear. This study involves a detailed qualitative analysis of interviews with 16 individuals who had overdosed on opioids 61 times to understand why a THN intervention does not routinely lead to OUD treatment. Methods: This study builds upon a one-year (2018) qualitative study on community responses to opioid overdose fatalities in four adjacent rural counties in Western Pennsylvania. Using a semi-structured interview guide, 16 individuals who had experienced one or more overdoses were interviewed. Using NVivo, the transcribed audio-recorded interviews were coded, and a thematic analysis of the coded text was conducted. Findings: Findings reveal that of the 29 overdoses that included a THN intervention, only eight resulted in treatment. The analysis derives five individual-level barriers to treatment: (1) opioid dependence, (2) denial/readiness, (3) opioid withdrawal fears, (4) incarceration concerns, and (5) stigma and shame. These barriers impeded treatment, even though all the interviewees knew of treatment programs, how to access them, and in some cases had undergone treatment previously. Discussion and Conclusion: findings indicate that there is evidence that the five barriers make entering treatment after a THN intervention challenging and seemingly insurmountable at times. Recommendations based on the findings include increasing efforts to reduce stigma of OUDs in the community, including self-stigma resulting from misusing opioids, increasing informational efforts about Good Samaritan Laws, and increasing familiarity with medication-assisted treatments for OUDS.
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Naloxona , Antagonistas de Entorpecentes , Overdose de Opiáceos , Transtornos Relacionados ao Uso de Opioides , População Rural , Humanos , Naloxona/uso terapêutico , Transtornos Relacionados ao Uso de Opioides/tratamento farmacológico , Feminino , Overdose de Opiáceos/tratamento farmacológico , Masculino , Região dos Apalaches , Antagonistas de Entorpecentes/uso terapêutico , Adulto , Pessoa de Meia-Idade , Pesquisa Qualitativa , Antropologia Cultural , Acessibilidade aos Serviços de Saúde , Pennsylvania , Estigma SocialRESUMO
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.â¯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).â¯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).
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Endoscopia por Cápsula , Endoscopia por Cápsula/métodos , Endoscopia por Cápsula/normas , Escócia , Inquéritos e Questionários , Entrevistas como Assunto , Medicina Estatal/tendências , Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/diagnósticoRESUMO
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.
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COVID-19 , Assistência de Longa Duração , Adulto , COVID-19/prevenção & controle , Hospitalização , Humanos , Casas de SaúdeRESUMO
Close monitoring of chemotherapy toxicity can be instrumental in ensuring prompt symptom management and quality care. Our aim was to develop a brief clinical tool to enable daily assessment of chemotherapy toxicity and investigate/establish its content validity, feasibility/applicability, internal consistency and stability. Development of the Daily Chemotherapy Toxicity self-Assessment Questionnaire (DCTAQ) was based on an initial item pool created from two scoping reviews. Expert panel review (n = 15) and cognitive debriefing with patients with cancer (n = 7) were used to establish content validity. Feasibility/acceptability, applicability (self-report vs. interview-like administration), internal consistency (KR-20) and test-retest reliability (at 1-hr intervals) of the DCTAQ were field-tested with 82 patients with breast or colorectal cancer receiving active chemotherapy at eight hospitals. Initial development/content validity stages enabled item revisions and re-wording that led to a final, 11-item DCTAQ version with 10 core symptom items plus one open-ended "any other symptom" item. Feasibility and acceptability were demonstrated through the absence of participant withdrawals, absence of missing data and no complaints about tool length. The DCTAQ was found to have modest internal consistency (KR-20 = 0.56), but very good test-retest reliability. The DCTAQ is a brief clinical tool that allows for rapid and accurate daily assessments of chemotherapy toxicity in clinical practice.
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Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Neoplasias da Mama/tratamento farmacológico , Neoplasias Colorretais/tratamento farmacológico , Monitoramento de Medicamentos/métodos , Adulto , Idoso , Constipação Intestinal/induzido quimicamente , Constipação Intestinal/diagnóstico , Diarreia/induzido quimicamente , Diarreia/diagnóstico , Fadiga/induzido quimicamente , Fadiga/diagnóstico , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Náusea/induzido quimicamente , Náusea/diagnóstico , Aceitação pelo Paciente de Cuidados de Saúde , Reprodutibilidade dos Testes , Autorrelato , Transtornos de Sensação/induzido quimicamente , Transtornos de Sensação/diagnóstico , Inquéritos e Questionários , Vômito/induzido quimicamente , Vômito/diagnósticoRESUMO
Unlabelled: This viewpoint paper explores the dynamic intersection of physiotherapy and digital health technologies (DHTs) in enhancing the care of people with cystic fibrosis (CF), in the context of advancements such as highly effective modulator therapies that are enhancing life expectancy and altering physiotherapy needs. The role of DHTs, including telehealth, surveillance, home monitoring, and activity promotion, has expanded, becoming crucial in overcoming geographical barriers and accelerated by the recent pandemic. Physiotherapy, integral to CF care since 1946, has shifted toward patient-centered approaches, emphasizing exercise training and a physically active lifestyle. The reduction in inpatient admissions due to highly effective modulator therapies has led to increased home care and online or electronic consultations, and DHTs have revolutionized service delivery, offering flexibility, self-management, and personalized care options; however, there is a need to comprehensively understand user experiences from both people with CF and physiotherapists. This paper highlights the essential exploration of user experiences to facilitate clinician adaptation to the digital requirements of modern clinical management, ensuring equitable care in the "future hospitals" arena. Identifying research gaps, this paper emphasizes the need for a thorough evaluation of DHT use in CF physiotherapy education, training, and self-monitoring, as well as the experiences of people with CF with online or electronic consultations, self-monitoring, and remote interventions. Online group exercise platforms address historical challenges relating to infection control but necessitate comprehensive evaluations of user experiences and preferences. Future-proofing DHTs within the physiotherapy management of CF demands a shift toward full integration, considering stakeholder opinions and addressing barriers. While DHTs have the potential to extend physiotherapy beyond the hospital, this paper stresses the importance of understanding user experiences, addressing digital poverty, and working toward more equitable health care access. A flexible approach in the "future hospital" is advocated, emphasizing the need for a nuanced understanding of user preferences and experiences to optimize the integration of DHTs in CF care.
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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.
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Cuidadores , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Cuidadores/psicologia , Idoso , Neoplasias Colorretais/psicologia , Neoplasias Colorretais/terapia , Neoplasias Colorretais/tratamento farmacológico , Adulto , Estudos Longitudinais , Tecnologia Digital , Neoplasias/psicologia , Neoplasias/terapia , Neoplasias/enfermagem , Pesquisa Qualitativa , Saúde DigitalRESUMO
BACKGROUND: A diagnosis of cancer in adolescence or young adulthood can pose many different and unique challenges for individuals, as well as their families and friends. Drawing on the concept of prehabilitation, the provision of high-quality, accessible, timely, reliable, and appropriate information, care, and support for young adults with cancer and their families is critical to ensure that they feel equipped and empowered to make informed decisions relating to their treatment and care. Increasingly, digital health interventions offer opportunities to augment current health care information and support provision. Co-designing these digital health interventions can help to ensure that they are meaningful and relevant to the patient cohort, thereby maximizing their accessibility and acceptability. OBJECTIVE: This study had 4 primary interlinked objectives: understand the support needs of young adults with cancer at the time of diagnosis, understand the potential role of a digital health solution to assist in the delivery of prehabilitation for young adults with cancer, identify appropriate technologies and technological platforms for a digital prehabilitation system of care, and develop a prototype for a digital prehabilitation system of care. METHODS: This was a qualitative study using interviews and surveys. Young adults aged 16 to 26 years diagnosed with cancer within the last 3 years were invited to participate in individual user-requirement interviews or surveys. Health care professionals specializing in the treatment and care of young adults with cancer and digital health professionals working in the industry were also interviewed or completed a survey. Consensus feedback interviews were conducted with 3 young adults and 2 health care professionals after the development of the first generation of the prototype app. RESULTS: In total, 7 individual interviews and 8 surveys were completed with young adults with a range of cancer diagnoses. Moreover, 6 individual interviews and 9 surveys were completed with health care professionals, and 3 digital health professionals participated in one-on-one interviews. A prototype app with the working name of Cancer Helpmate was developed based on these collective participant data. Overall, feedback from participants across the data collection activities suggests that the concept for the app was positive during these developmental stages. Further insightful ideas for the app's future development were also identified. CONCLUSIONS: Young adults with cancer and health care professionals are responsive to the need for more digitally driven services to be developed. Further development of an app such as Cancer Helpmate, which incorporates key features and functionalities directly informed by users, could help to augment the support provided to young adults with cancer.
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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.
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Introduction: Take-home naloxone (THN) is being made available across rural Appalachia to curb opioid overdose fatalities. Despite this initiative, some opioid users do not possess naloxone, and if they do, do not administer it to others. Purpose: Research findings on risk factors that contribute to opioid overdose are presented. These factors, identified in a sample of 16 overdose cases, are (1) early onset age of opioid use; (2) progressive opioid use; (3) a transition from pain medication to heroin and fentanyl; (4) fears of being arrested at a naloxone intervention if first responders are contacted, and (5) limited knowledge of Good Samaritan Laws. Methods: The findings are based on a subsample 16 overdose victims who were identified during a one-year (2018) qualitative study on the decline of overdose fatalities in four rural counties in Western Pennsylvania. They were recruited from a larger sample of 50 current and former substance users and were interviewed a second time using a semi-structured interview guide about their overdose experiences. All interview data were analyzed using thematic analysis via NVivo. Results: Findings reveal that risk factors contribute to a severe opioid dependence that interferes with naloxone use. These factors also hinder adherence to proper naloxone protocol, designed to place overdose victims in contact with treatment providers. Implications: Recommendations are made for additional research and for pursuing measures to increase efficacy of naloxone interventions. They include developing naloxone campaigns aimed at high-risk individuals, improving their knowledge of Good Samaritan Laws, increasing adherence to THN protocols that improve the possibility of treatment, and using community harm reduction specialists for community outreach.
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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.
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Cuidadores , Qualidade de Vida , Humanos , Idoso , Doença Crônica , Pessoal de Saúde , Fatores Socioeconômicos , Estudos Multicêntricos como AssuntoRESUMO
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.
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OBJECTIVE: This meta-ethnography synthesises the evidence on the experiences, needs and concerns of younger women with breast cancer. METHODS: Using a method called 'reciprocal translation' we developed a conceptual model to reflect the local and social contexts, issues, processes, needs and concerns of importance in this literature. FINDINGS: Key findings relate to the particular point in the life-course at which young women with breast cancer stand. Issues for these women relate to feeling different as a result of cancer, fear of recurrence, feeling 'out of sync' and altered embodied subjectivity. Young women with breast cancer use three processes to integrate the changes that cancer brings, namely, balancing, normalising and changing. Our conceptual model also highlights young women's needs, primarily for support, information, childcare, counselling and spiritual support. Areas of reproduction, fertility and sexuality were also of particular concern. The included papers have methodological limitations that impact on our findings, such as opportunistic data analyses, lack of theoretical frameworks and limited reference to socio-cultural factors. CONCLUSION: The conceptual model developed as a result of this meta-ethnography provides a basis for practitioners to address these young women's concerns more adequately and comprehensively.
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Neoplasias da Mama/psicologia , Adaptação Psicológica , Adulto , Fatores Etários , Imagem Corporal , Feminino , Humanos , Modelos Psicológicos , Apoio SocialRESUMO
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.
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COVID-19 , Cuidadores , Humanos , Pandemias , Qualidade de Vida , Encaminhamento e Consulta , SARS-CoV-2RESUMO
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.
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Protocolos de Quimioterapia Combinada Antineoplásica/administração & dosagem , Telefone Celular , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/diagnóstico , Qualidade de Vida , Telemedicina/métodos , Adulto , Idoso , Áustria , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Quimioterapia Adjuvante/efeitos adversos , Neoplasias Colorretais/psicologia , Neoplasias Colorretais/terapia , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/etiologia , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/psicologia , Feminino , Grécia , Doença de Hodgkin/psicologia , Doença de Hodgkin/terapia , Humanos , Irlanda , Linfoma não Hodgkin/psicologia , Linfoma não Hodgkin/terapia , Masculino , Pessoa de Meia-Idade , Noruega , Telemedicina/instrumentação , Resultado do Tratamento , Reino UnidoRESUMO
AIMS AND OBJECTIVES: To explore the experiences of 12 women with breast cancer, involved in a large longitudinal qualitative study designed to explore the experiences of people with cancer within the first year following diagnosis. BACKGROUND: To understand experiences of breast cancer further as a chronic illness, this study draws on biographically informed and embodied perspectives of chronic illness. DESIGN: Qualitative, longitudinal study. METHOD: Interviews were conducted at three time-points within the first year following diagnosis with 12 women with breast cancer. Drawing on the constant comparative method, a descriptive and thematic approach to data analysis was adopted. To move beyond the descriptive level, we drew on the concepts of biographical disruption and embodiment to further explore and explain the disruption that was evident in these women's lives as a result of their diagnosis. RESULTS: Two key concepts emerged from the data: 'Identity Transition: moving between health and illness' and 'Making the Transition to the Future? Living with breast cancer and moving on'. Identity transition emerged as a result of the changes and adaptations participants were required to make as a result of their diagnosis. Making the transition to the future emerged as a result of the challenges these women faced living with cancer. CONCLUSIONS: This study showed that the longitudinal exploration of the experiences of cancer within the first year following diagnosis provides a vital understanding of the impact cancer can have on one's identity from the moment of diagnosis onwards. RELEVANCE TO CLINICAL PRACTICE: This study has implications for cancer services because it highlights the need for interventions that support people to both successfully manage the experience of cancer diagnosis and treatment and equip themselves with the necessary techniques to negotiate transitions towards the future and living with cancer.
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Adaptação Psicológica , Neoplasias da Mama/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Entrevistas como Assunto , Estudos Longitudinais , Pessoa de Meia-Idade , Identificação SocialRESUMO
OBJECTIVE: To design and develop a digital monitoring application to support and improve the care of patients in the first 30 post-operative days following colorectal cancer surgery. DATA SOURCES: Patient interviews, health professional focus groups, patient co-creation activities, and health professional prioritization discussions. CONCLUSION: The structured and iterative co-design activities adopted in this study with key stakeholders, including patients and health professionals, lead to the development of a prototype application (app) to support patients at home during the first 30 days following surgery for colorectal cancer. A similar approach could be implemented to develop comparable apps for patients with other cancer diagnoses requiring different surgical procedures. Further research should focus on the continued development and testing of this app in relation to patient care and outcomes as well as the app's affect on nursing and other health services. IMPLICATIONS FOR NURSING PRACTICE: Clinical implementation of remote monitoring following discharge home after surgery for colorectal cancer gives patients the opportunity to report issues of concern to relevant health professionals. This could facilitate the early identification of concerning signs and symptoms, ensuring appropriate and timely interventions to minimize readmission rates. Patients' experiences during the recovery period could also be improved through the provision of reliable and relevant online information. More specifically, health professionals could easily identify those patients requiring additional support to manage their recovery, for example, those with more severe symptoms or problems, facilitating the direction of appropriate health services to those most in need of their expertise.
Assuntos
Neoplasias Colorretais/reabilitação , Continuidade da Assistência ao Paciente/organização & administração , Telemedicina/métodos , Feminino , Humanos , Masculino , Relações Médico-Paciente , Autocuidado/métodosRESUMO
AIM: This study is a report to identify the utility of a hand-held side-effect monitoring system for people receiving chemotherapy in the home care setting. BACKGROUND: Increasingly, health care is being provided in people's own homes and communities rather than in hospitals. This has driven the development of technologies which support patients in the home environment. The meaning of such technologies can be explored from a Foucauldian perspective to shed light on how they enable new forms of medical surveillance. METHOD: An intervention study was performed in 2006 using new technologies for people receiving chemotherapy. Questionnaires were completed by 56 people affected by cancer who used the new technology; 12 of these people were then interviewed. Secondary analysis of the interview data is presented in this paper, drawing on Foucault's writing about surveillance and power in medical settings. FINDINGS: The interview transcripts contain numerous examples of people affected by cancer reflecting on issues such as power and surveillance in cancer care. While these terms are ordinarily considered to reflect negative elements of care, they were used by participants in an empowering manner. CONCLUSION: Theoretical insights can help nurses to think critically about the advances of technology. In particular, there are implications for how nurses consider the relationship of technology to patients and for power dynamics in healthcare relationships. We suggest that there is a need to problematize and celebrate the growth of technologically-driven health surveillance.
Assuntos
Tecnologia Biomédica , Computadores de Mão , Atenção à Saúde/métodos , Serviços de Assistência Domiciliar , Neoplasias/tratamento farmacológico , Adulto , Idoso , Serviços de Saúde Comunitária/métodos , Humanos , Pessoa de Meia-Idade , Neoplasias/complicações , Satisfação do Paciente , Poder PsicológicoRESUMO
BACKGROUND: The last decade has seen an increase in the number of digital health interventions designed to support adolescents and young adults (AYAs) with cancer. OBJECTIVE: The objective of this review was to identify, characterize, and fully assess the quality, feasibility, and efficacy of existing digital health interventions developed specifically for AYAs, aged between 13 and 39 years, living with or beyond a cancer diagnosis. METHODS: Searches were performed in PubMed, EMBASE, and Web of Science to identify digital health interventions designed specifically for AYA living with or beyond a cancer diagnosis. Data on the characteristics and outcomes of each intervention were synthesized. RESULTS: A total of 4731 intervention studies were identified through the searches; 38 interventions (43 research papers) met the inclusion criteria. Most (20/38, 53%) were website-based interventions. Most studies focused on symptom management and medication adherence (15, 39%), behavior change (15, 39%), self-care (8, 21%), and emotional health (7, 18%). Most digital health interventions included multiple automated and communicative functions such as enriched information environments, automated follow-up messages, and access to peer support. Where reported (20, 53% of studies), AYAs' subjective experience of using the digital platform was typically positive. The overall quality of the studies was found to be good (mean Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields scores >68%). Some studies reported feasibility outcomes (uptake, acceptability, and attrition) but were not sufficiently powered to comment on intervention effects. CONCLUSIONS: Numerous digital interventions have been developed and designed to support young people living with and beyond a diagnosis of cancer. However, many of these interventions have yet to be deployed, implemented, and evaluated at scale.
RESUMO
BACKGROUND: There has been an international shift in health care, which has seen an increasing focus and development of technological and personalized at-home interventions that aim to improve health outcomes and patient-clinician communication. However, there is a notable lack of empirical evidence describing the preparatory steps of adapting and implementing technology of this kind across multiple countries and clinical settings. OBJECTIVE: This study aimed to describe the steps undertaken in the preparation of a multinational, multicenter randomized controlled trial (RCT) to test a mobile phone-based remote symptom monitoring system, that is, Advanced Symptom Management System (ASyMS), designed to enhance management of chemotherapy toxicities among people with cancer receiving adjuvant chemotherapy versus standard cancer center care. METHODS: There were 13 cancer centers across 5 European countries (Austria, Greece, Ireland, Norway, and the United Kingdom). Multiple steps were undertaken, including a scoping review of empirical literature and clinical guidelines, translation and linguistic validation of study materials, development of standardized international care procedures, and the integration and evaluation of the technology within each cancer center. RESULTS: The ASyMS was successfully implemented and deployed in clinical practices across 5 European countries. The rigorous and simultaneous steps undertaken by the research team highlighted the strengths of the system in clinical practice, as well as the clinical and technical changes required to meet the diverse needs of its intended users within each country, before the commencement of the RCT. CONCLUSIONS: Adapting and implementing this multinational, multicenter system required close attention to diverse considerations and unique challenges primarily related to communication and clinical and technical issues. Success was dependent on collaborative and transparent communication among academics, the technology industry, translation partners, patients, and clinicians as well as a simultaneous and rigorous methodological approach within the 5 relevant countries.