Barriers and facilitators to integrated cancer care between primary and secondary care: a scoping review.

PURPOSE: This scoping review identifies and characterises reported barriers and facilitators to providing integrated cancer care reported in the international literature, and develops recommendations for clinical practice. METHODS: This scoping review included literature published between 2009 and 2022 and describes the delivery of integrated cancer care between primary and secondary care sectors. Searches were conducted of an online database Ovid Medline and grey literature. RESULTS: The review included thirty-two papers. Barriers and facilitators to integrated cancer care were identified in three core areas: (1) at an individual user level around patient-healthcare professional interactions, (2) at an organisational level, and (3) at a healthcare system level. The review findings identified a need for further training for primary care professionals on cancer care, clarity in the delineation of primary care and oncologist roles (i.e. who does what), effective communication and engagement between primary and secondary care, and the provision of protocols and guidelines for follow-up care in cancer. CONCLUSIONS: Information sharing and communication between primary and secondary care must improve to meet the increasing demand for support for people living with and beyond cancer. Delivering integrated pathways between primary and secondary care will yield improvements in patient outcomes and health economic costs.

Evaluation of the nurse-assisted eHealth intervention 'eHealth@Hospital-2-Home' on self-care by patients with heart failure and colorectal cancer post-hospital discharge: protocol for a randomised controlled trial.

BACKGROUND: Patients with heart failure (HF) and colorectal cancer (CRC) are prone to comorbidity, a high rate of readmission, and complex healthcare needs. Self-care for people with HF and CRC after hospitalisation can be challenging, and patients may leave the hospital unprepared to self-manage their disease at home. eHealth solutions may be a beneficial tool to engage patients in self-care. METHODS: A randomised controlled trial with an embedded evaluation of intervention engagement and cost-effectiveness will be conducted to investigate the effect of eHealth intervention after hospital discharge on the self-efficacy of self-care. Eligible patients with HF or CRC will be recruited before discharge from two Norwegian university hospitals. The intervention group will use a nurse-assisted intervention-eHealth@Hospital-2-Home-for six weeks. The intervention includes remote monitoring of vital signs; patients' self-reports of symptoms, health and well-being; secure messaging between patients and hospital-based nurse navigators; and access to specific HF and CRC health-related information. The control group will receive routine care. Data collection will take place before the intervention (baseline), at the end of the intervention (Post-1), and at six months (Post-2). The primary outcome will be self-efficacy in self-care. The secondary outcomes will include measures of burden of treatment, health-related quality of life and 30- and 90-day readmissions. Sub-study analyses are planned in the HF patient population with primary outcomes of self-care behaviour and secondary outcomes of medication adherence, and readmission at 30 days, 90 days and 6 months. Patients' and nurse navigators' engagement and experiences with the eHealth intervention and cost-effectiveness will be investigated. Data will be analysed according to intention-to-treat principles. Qualitative data will be analysed using thematic analysis. DISCUSSION: This protocol will examine the effects of the eHealth@ Hospital-2-Home intervention on self-care in two prevalent patient groups, HF and CRC. It will allow the exploration of a generic framework for an eHealth intervention after hospital discharge, which could be adapted to other patient groups, upscaled, and implemented into clinical practice. TRIAL REGISTRATION: Clinical trials.gov (ID 301472).

eHealth interventions to support colorectal cancer patients' self-management after discharge from surgery-an integrative literature review.

INTRODUCTION: Colorectal cancer (CRC) creates elevated self-management demands and unmet support needs post-discharge. Follow-up care through eHealth post-primary surgery may be an effective means of supporting patients' needs. This integrative review describes the evidence regarding eHealth interventions post-hospital discharge focusing on delivery mode, user-interface and content, patient intervention adherence, impact on patient-reported outcomes and experiences of eHealth. METHODS: A university librarian performed literature searches in 2021 using four databases. After screening 1149 records, the authors read 30 full-text papers and included and extracted data from 26 papers. Two authors analysed the extracted data using the 'framework synthesis approach'. RESULTS: The 26 papers were published between 2012 and 2022. The eHealth interventions were mainly delivered by telephone with the assistance of healthcare professionals, combined with text messages or video conferencing. The user interfaces included websites, applications and physical activity (PA) trackers. The interventions comprised the monitoring of symptoms or health behaviours, patient information, education and counselling. Evidence showed a better psychological state and improved PA. Patients reported high satisfaction with eHealth. However, patient adherence was inadequately reported. CONCLUSIONS: eHealth interventions may positively impact CRC patients' anxiety and PA regardless of the user interface. Patients prefer technology combined with a human element.

Understanding the cultural environment of the outpatient care setting for patients with dementia receiving cancer treatment: A qualitative study.

INTRODUCTION: People with dementia have poorer cancer outcomes than those without dementia, and experience inequalities in access to, and quality of, care. Outpatient environments, where radiotherapy, chemotherapy and immunotherapy cancer treatments typically take place, have largely been excluded from research. This study was conducted to understand provision of treatment and support and experiences of care for people with dementia undergoing cancer treatment in the outpatient setting. MATERIALS AND METHODS: Using observation, interviews and document analysis, data were collected to scrutinize the cultural environment of ambulatory care, comprising the physical fabric of the care setting; interactions, behaviours and perceptions of those in the care setting; and the organizational, clinical and interactional processes involved in care delivery. The study was conducted in the outpatient oncology departments of two large teaching hospitals in England between January 2019 and July 2021. RESULTS: Data were gathered from a wide range of sources, including 15 h of observation, and interviews with patients (n = 2), caregivers (n = 7) and staff (n = 20). Evidence from this study suggests that the cultural environment of the outpatient care setting reflects and supports the standardized processing of people for cancer treatment. Dementia introduces a wider set of care requirements not catered for by this standardized treatment model and associated processes. Data showed that the needs of patients with dementia could be addressed most effectively when individualized care, as opposed to standardized care, was offered. CONCLUSION: There is work to be done in outpatient cancer services to ensure responsiveness to individual patient need. This could be achieved by having an established way (or ways) of eliciting needs, preferences and expectations, a belief that a person's needs and expectations are legitimate and that effort should be made to address them, with the ability to accommodate these needs and expectations. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers were involved in the study design and development of study materials including the interview topic guide. They also assisted with discussion and clarification of study findings.

'A real fine balancing act': A secondary qualitative analysis of power imbalance in comorbid cancer and dementia in an outpatient treatment setting.

AIMS: Studies of health services reveal a focus on provision of scheduled care at the expense of patient need, placing the health service in a position of power and the patient as passive recipient. This secondary qualitative analysis of a focused ethnography draws on the Foucauldian concept of power as pervasive and relational, to examine how an imbalance of power is manifested in situations where people with both cancer and dementia are being treated for cancer. DESIGN: Secondary qualitative analysis of a focused ethnographic study. DATA SOURCES: In the original study, qualitative data were gathered from observation and interviews with people with cancer and dementia (n = 2), caregivers (n = 7) and staff (n = 20). The study was conducted in the outpatient departments of two teaching hospitals in England between January 2019 and July 2021. Data from all sources were analysed for this secondary analysis using constant comparison. RESULTS: The principal theme was balance, encapsulating the competing priorities involved in delivering cancer treatment. There was tension between maintaining safety and ensuring an individual's right to treatment, and difficulty reconciling the needs of the system with the needs of individuals. CONCLUSION: The pervasive nature of power can be harnessed to enhance the agency of people with cancer and dementia by incorporating principles of shared decision making. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: We recommend incorporating the principles of personalized care to achieve more equitable power relations, reduce health inequalities and ensure that cancer treatment offered to people with dementia is safe and appropriate. REPORTING METHOD: EQUATOR (COREQ) guidelines have been used for reporting. PATIENT OR PUBLIC CONTRIBUTION: Patients and the public were involved in designing the original research questions and the study protocol including documentation such as interview topic guides and participant information sheets.

Qualitative interviews results from heart failure survey respondents on the interaction between symptoms and burden of self-care work.

AIMS AND OBJECTIVES: Following a cross-sectional survey, a sub-sample of participants was interviewed to explore the interaction between symptoms and burden of treatment. BACKGROUND: Burden of treatment considers both the work associated with illness and treatment, including self-care work, as well as the individuals' capabilities and resources to engage in that work. The recent survey revealed the existence of a complex interaction. DESIGN: Qualitative abductive analysis of semi-structured interviews. METHODS: Adults with heart failure who participated in the survey were purposely sampled and invited to participate in semi-structured interviews. Location and mode of interview varied by participant choice. Excerpts from the verbatim transcripts were assessed for interactions between symptoms and burden of treatment, and when identified these were characterised and explained. We followed COREQ checklist for reporting. The patient research ambassador group was involved from research design to dissemination. RESULTS: Participants (n = 32) consistently discussed how symptoms altered their capability to engage in self-care work. As symptom intensity increased the difficultly of their self-care work increased. A number of intervening factors appeared to influence the relationship between symptoms and burden of treatment. Intervening factors included illness pathology, illness identity, the value of the tasks attempted and available support structures. These factors may change how symptoms and burden of treatment are perceived; a model was constructed to explain and summarise these interactions. CONCLUSIONS: The interaction between symptoms and burden of treatment is complex. Intervening factors-illness identity and pathology, task value and performance, and available support structures-appear to exert a strong influence on the interaction between symptoms and burden of treatment. RELEVANCE TO CLINICAL PRACTICE: These intervening factors present clinicians and researchers with opportunities to develop interventions that might reduce burden of treatment and improve symptoms and quality of life. CLINICAL TRIAL REGISTRATION: SYMPACT was registered with ISRCTN registry: ISRCTN11011943.

Self-management by older people living with cancer and multi-morbidity: a qualitative study.

PURPOSE: Over half of individuals diagnosed with cancer are aged over 70 years, and more than 75% of those with cancer report at least one other medical condition. Having multiple conditions alongside cancer in old age may lower functional status, greater likelihood of treatment complications and less favourable prognoses. This qualitative study explored how older people with long-term chronic conditions manage their health and meet their health-related goals after they have completed treatment for cancer. METHODS: One-to-one face-to-face qualitative interviews were conducted with 8 older people and 2 informal caregivers based in the UK. Older adults were eligible to participate if they were over 70 and had completed primary cancer treatment with curative intent and had at least one other chronic health condition. A semi-structured interview schedule developed a priori based on Shippee's cumulative complexity model was used. We aimed to explore experiences that could influence self-management, utilisation of healthcare services and health outcomes. A framework analysis was used to describe and interpret the data. RESULTS: Four overarching themes were identified in the analysis. These themes related to factors that influenced the everyday health-related workload and capacity of the participants. These factors included their health, resources, and opportunities, as well their motivation and sense of perceived control over their lives. CONCLUSIONS: Fragmented healthcare systems and relationships with healthcare professionals also influenced the participants' self-management of their health. Our findings highlight the interaction between an individuals' needs, capacity, treatment burden, and the services and resources available to them. These findings support calls to promote person-centred care to better support older adults to manage their health.

'It feels it's wasting whatever time I've got left': A qualitative study of living with treatable but not curable cancer during the COVID-19 pandemic.

BACKGROUND: People living with cancer that is treatable but not curable have complex needs, often managing health at home, supported by those close to them. Challenges are likely to be exacerbated during the COVID-19 pandemic and the risk-reducing measures introduced in response. The impact of COVID-19 on those living with incurable, life-threatening conditions is little understood. AIM: To investigate the experiences and identify the impact of the COVID-19 pandemic for people living with treatable not curable cancer and their informal carers. DESIGN: Qualitative semi-structured phone interviews were conducted with 21 patients living with cancer that is treatable but not curable and 14 carers. SETTING/ PARTICIPANTS: Participants were part of a larger longitudinal qualitative study (ENABLE) on supported self-management for people living with cancer that is treatable but not curable. RESULTS: The COVID-19 pandemic magnified uncertainty and anxiety and led to loss of opportunities to do things important to patients in the limited time they have left to live. Lack of face-to-face contact with loved ones had a significant impact on patients' and carers' emotional wellbeing. Carers experienced increased responsibilities but less access to formal and informal support and respite. While changes to treatment led to some concern about longer-term impact on health, most patients felt well-supported by healthcare teams. CONCLUSION: The study provides rich insights into the nature of challenges, uncertainty and lost opportunities resulting from the COVID-19 pandemic for patients and carers living with cancer that is treatable but not curable, which has wider resonance for people living with other life-limiting conditions.

Influence of social networks on cancer survivors' self-management support: A mixed methods study.

OBJECTIVE: The role of social networks, especially weaker ties (e.g. casual acquaintances and hobby groups), in self-management of long-term consequences of cancer is unexplored. This study aimed to explore the structure of cancer survivors' social networks and their contribution to self-management support and health-related quality of life (HRQoL). METHODS: The study used a sequential, exploratory mixed methods design. Phase 1 surveyed 349 lymphoma, colorectal, breast and prostate cancer survivors. Phase 2 analysed 20 semi-structured interviews with respondents recruited from Phase 1. RESULTS: Phase 1 results suggested participants' HRQoL increased if they participated in an exercise group, if their self-management skills increased, and social distress and negative illness perception decreased (p < 0.0005 adj. R2 = 0.631). These findings were explored in Phase 2, identifying underlying mechanisms. Four themes were identified: disrupted networks after cancer treatment; navigating formal support and building individual capacity; peer networks and self-management knowledge and linking networks to enable adaptation in recovery. CONCLUSIONS: This study suggests engagement with community groups, particularly those not directly related to illness management and social interaction with weak ties, make a valuable contribution to self-management support, increase HRQoL and enhance well-being.

Enablers and barriers to progressing a clinical academic career in nursing, midwifery and allied health professions: A cross-sectional survey.

AIMS AND OBJECTIVES: This study aimed to understand the routes by which nurses, midwives and allied health professionals (NMAHPs) pursue and sustain a research career and the enablers and barriers to career progression. BACKGROUND: Robust evidence is central to practice and professional decision making of NMAHPs, with generation and translation of research arguably best led by those clinically active. Whilst countries like the UK and USA have fellowship schemes to support research career development, anecdotal reports suggest barriers exist in translating these opportunities into sustainable clinical academic careers. DESIGN: Online survey. METHODS: An online questionnaire addressing career choices, facilitators/barriers and support was emailed to 1074 past applicants (doctoral and post-doctoral) to National Institute of Health Research fellowship schemes (awarded and rejected) in England between March and May 2017; 231 responded (25.6%). Study reporting adheres to STROBE checklist. RESULTS: Overall, 134 doctoral and 96 post-doctoral applicants participated; two-thirds were from allied health professions. Most were early in their research career. Interest in research was most frequently sparked by interaction with people in research positions. Nearly half had their first research experience during their BSc project; though less often for nurses/midwives/health visitors (37.5%) than other NMAHPs (51.6%). The award of a fellowship resulted in higher likelihood of being research-active (doctoral level). Nearly three quarters pursuing a clinical academic career indicated 'clearer career paths' and 'greater integration across clinical and academic departments' were desirable. Most common barriers related to research roles, availability of positions and funding. CONCLUSIONS: Fellowship schemes are important to NMAHPs' research careers, but there are serious challenges to establishing and sustaining a career. RELEVANCE TO CLINICAL PRACTICE: Lack of a clear model of career progression, at national and local level, and barriers to creating joint posts impacts on capacity of clinical academics to strengthen integration of research with practice.