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.

A proposal to embed patient and public involvement within qualitative data collection and analysis phases of a primary care based implementation study.

BACKGROUND: Patient and public involvement (PPI) is increasingly seen as essential to health service research. There are strong moral and ethical arguments for good quality PPI. Despite the development of guidance aimed at addressing the inconsistent reporting of PPI activities within research, little progress has been made in documenting the steps taken to undertake PPI and how it influences the direction of a study. Without this information, there are minimal opportunities to share learnings across projects and strengthen future PPI practices. The aim of this paper is to present details on the processes and activities planned to integrate PPI into the qualitative research component of a mixed-methods, multi-site study evaluating the implementation of a smart template to promote personalised primary care for patients with multiple long-term conditions. METHODS: This proposal describes the processes and activities planned to integrate PPI into the development and piloting of qualitative data collection tools (topic guides for both practice staff and patients) and a tailored data analysis package developed for PPI members incorporating broad concepts and specific methods of qualitative data analysis. DISCUSSION: Outputs relating to PPI activity may include clear, concise and suitably worded topic guides for qualitative interviews. Piloting of the topic guides via mock interviews will further develop researchers' skills including sensitisation to the experiences of participants being interviewed. Working with PPI members when analysing the qualitative data aims to provide reciprocal learning opportunities and may contribute to improving the overall rigour of the data analysis. The intent of publishing proposed PPI activities within this project is to inform the future delivery of high quality PPI.

Patient and public involvement (PPI) improves healthcare research, however, there is little published evidence of proposed PPI activities within a research study. The aim of this article is to describe the proposed PPI activities which are to be integrated into a study implementing a smart template to promote personalised care for people with multiple long-term conditions within primary care in the United Kingdom. The proposal describes the ways in which PPI members will be included within the data collection and analysis phases of a research study which includes interviews with primary care staff and patients. PPI members will be asked to develop questions for these interviews and to take part in a mock interview whereby a researcher interviews a PPI member. The proposal also provides details on qualitative data analysis workshops which will be specifically developed for PPI members. The impact of PPI activities could include clear, concise and suitably worded questions used within the interviews. Piloting of these questions via mock interviews may enable researchers to further develop their interviewing skills. It is anticipated that involving PPI members when analysing qualitative data will provide opportunities for reciprocal learning and lead to rich interpretations of the data, inclusive of the PPI members' perspectives. Publishing a record of planned PPI activities and potential impacts demonstrates the rationale and considerations made by the team to ensure that involvement in this study is meaningful and has potential benefits for all involved. The team hopes this proposal will support others with the planning and delivery of PPI activities. In future publications, we will reflect on the learnings, challenges, and outcomes from the PPI activities detailed in this proposal.

How do illness identity, patient workload and agentic capacity interact to shape patient and caregiver experience? Comparative analysis of lung cancer and chronic obstructive pulmonary disease.

Some patients have to work hard to manage their illness. When this work outweighs capacity (the resources available to patients to undertake the illness workload and other workloads such as that of daily life), this may result in treatment burden, associated with poor health outcomes for patients. This cross-sectional, comparative qualitative analysis uses an abductive approach to identify, characterise and explain treatment burden in chronic obstructive pulmonary disease (COPD) and lung cancer. It uses complementary qualitative methods (semi-structured interviews with patients receiving specialist care n = 19, specialist clinicians n = 5; non-participant observation of specialist outpatient consultations in two English hospitals [11 h, 52 min] n = 41). The findings underline the importance of the diagnostic process in relation to treatment burden; whether diagnosis is experienced as a biographically disruptive shock (as with lung cancer) or is insidiously biographically erosive (as with COPD).

Factors influencing fatigue in UK nurses working in respiratory clinical areas during the second wave of the Covid-19 pandemic: An online survey.

AIMS AND OBJECTIVES: This study explores UK nurses' experiences of working in a respiratory clinical area during the COVID-19 pandemic over winter 2020. BACKGROUND: During the first wave of the pandemic, nurses working in respiratory clinical areas experienced significant levels of anxiety and depression. As the pandemic has progressed, levels of fatigue in nurses have not been assessed. METHODS: A cross-sectional e-survey was distributed via professional respiratory societies and social media. The survey included Generalised Anxiety Disorder Assessment (GAD7), Patient Health Questionnaire (PHQ9, depression), a resilience scale (RS-14) and Chalder mental and physical fatigue tools. The STROBE checklist was followed as guidance to write the manuscript. RESULTS: Despite reporting anxiety and depression, few nurses reported having time off work with stress, most were maintaining training and felt prepared for COVID challenges in their current role. Nurses reported concerns over safety and patient feedback was both positive and negative. A quarter of respondents reported wanting to leave nursing. Nurses experiencing greater physical fatigue reported higher levels of anxiety and depression. CONCLUSIONS: Nurses working in respiratory clinical areas were closely involved in caring for COVID-19 patients. Nurses continued to experience similar levels of anxiety and depression to those found in the first wave and reported symptoms of fatigue (physical and mental). A significant proportion of respondents reported considering leaving nursing. Retention of nurses is vital to ensure the safe functioning of already overstretched health services. Nurses would benefit from regular mental health check-ups to ensure they are fit to practice and receive the support they need to work effectively. RELEVANCE TO CLINICAL PRACTICE: A high proportion of nurses working in respiratory clinical areas have been identified as experiencing fatigue in addition to continued levels of anxiety, depression over winter 2020. Interventions need to be implemented to help provide mental health support and improve workplace conditions to minimise PTSD and burnout.

Informing future nursing: An exploration of respiratory teaching in the pre-registration nurse curriculum.

AIM/OBJECTIVE: The aim is to examine and map the respiratory skills taught in the pre-registration nursing curriculum (2010). BACKGROUND: Respiratory assessment and care are fundamental clinical skills enabling nurses to treat and care for people with acute and chronic respiratory diseases. The incidence of respiratory disease is rising, globally and most nurses will care for respiratory patients during their career. The extent of pre-registration respiratory specific education delivered in UK NMC (Nursing and Midwifery Council) approved education institutions (AEIs) is currently unknown. The move to the 2018 revised NMC standards for pre-registration nursing offers AEIs the opportunity to review provision of respiratory education. This study describes respiratory education delivered to pre-registration nurses in UK AEIs prior to implementation of the new NMC standards. Curriculum re-design can be adapted for the global nursing community. DESIGN: This is a freedom of information survey; to gather, examine and map curriculum content. METHODS: A survey of UK AEIs was conducted to initially scope provision of respiratory education for pre-registration nursing programmes. AEIs were emailed a freedom of information (FOI) request and provided information about the curriculum between April-June 2019. RESULTS: Seventy-five UK AEIs providing pre-registration nursing programmes responded. Over half of AEIs dedicated over 4 h of teaching respiratory anatomy and physiology (60.8%), respiratory pathophysiology (75.3%) and long- term respiratory conditions (60.3%). Less than half (44.4%) spent over 4 h teaching respiratory health and prevention of respiratory disease. Just over a third spent over 4 h on respiratory pharmacology (33.8%), local and national respiratory guidelines (33.3%) and information on pulmonary rehabilitation and other interventions for the management of respiratory conditions (35.2%). In most AEIs, skills laboratories were used to teach respiratory skills. Student competence was not always assessed. Respiratory learning was reported to take place during practice placements, but this was variable. CONCLUSIONS: Variation exists in provision of respiratory education in pre-registration nursing programmes across the UK. Whilst some respiratory topics appear to be covered adequately, others have limited time on knowledge and skills teaching. New standards and curricula offer AEIs the opportunity to enhance this provision. Adaptations can be made and the curriculum transferred to the global nursing workforce. TWEETABLE ABSTRACT: Gaps have been identified in respiratory teaching pre-registration nurse education. Curriculum redesign to focus on respiratory care.

Experiences of nurses caring for respiratory patients during the first wave of the COVID-19 pandemic: an online survey study.

BACKGROUND: Nurses have been at the forefront of the pandemic response, involved in extensive coordination of services, screening, vaccination and front-line work in respiratory, emergency and intensive care environments. The nature of this work is often intense and stress-provoking with an inevitable psychological impact on nurses and all healthcare workers. This study focused on nurses working in respiratory areas with the aim of identifying and characterising the self-reported issues that exacerbated or alleviated their concerns during the first wave of the COVID-19 pandemic. METHODS: An online survey was developed consisting of 90 questions using a mixture of open-ended and closed questions. Participant demographic data were also collected (age, gender, ethnicity, number of years qualified, details of long-term health conditions, geographical location, nursing background/role and home life). The online survey was disseminated via social media and professional respiratory societies (British Thoracic Society, Primary Care Respiratory Society, Association of Respiratory Nurse Specialists) over a 3-week period in May 2020 and the survey closed on 1 June 2020. RESULTS: The study highlights the experiences of nurses caring for respiratory patients during the first wave of the pandemic in early 2020. Concerns were expressed over the working environment, the supply and availability of adequate protective personal equipment, the quality of care individuals were able to deliver, and the impact on mental health to nurses and their families. A high number provided free-text comments around their worries and concerns about the impact on their household; these included bringing the virus home, the effect on family members worrying about them, mental health and the impact of changing working patterns, and managing with children. Although both formal and informal support were available, there were inconsistencies in provision, highlighting the importance of nursing leadership and management in ensuring equity of access to services. CONCLUSIONS: Support for staff is essential both throughout the pandemic and afterwards, and it is important that preparation of individuals regarding building resilience is recognised. It is also clear that psychological support and services for nurses and the wider healthcare team need to be available and quickly convened in the event of similar major incidents, either global or local.

Patients and informal caregivers' experiences of burden of treatment in lung cancer and chronic obstructive pulmonary disease (COPD): a systematic review and synthesis of qualitative research.

OBJECTIVE: To identify, characterise and explain common and specific features of the experience of treatment burden in relation to patients living with lung cancer or chronic obstructive pulmonary disease (COPD) and their informal caregivers. DESIGN: Systematic review and interpretative synthesis of primary qualitative studies. Papers were analysed using constant comparison and directed qualitative content analysis. DATA SOURCES: CINAHL, EMBASE, MEDLINE, PsychINFO, Scopus and Web of Science searched from January 2006 to December 2015. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Primary qualitative studies in English where participants were patients with lung cancer or COPD and/or their informal caregivers, aged >18 years that contain descriptions of experiences of interacting with health or social care in Europe, North America and Australia. RESULTS: We identified 127 articles with 1769 patients and 491 informal caregivers. Patients, informal caregivers and healthcare professionals (HCPs) acknowledged lung cancer's existential threat. Managing treatment workload was a priority in this condition, characterised by a short illness trajectory. Treatment workload was generally well supported by an immediacy of access to healthcare systems and a clear treatment pathway. Conversely, patients, informal caregivers and HCPs typically did not recognise or understand COPD. Treatment workload was balanced with the demands of everyday life throughout a characteristically long illness trajectory. Consequently, treatment workload was complicated by difficulties of access to, and navigation of, healthcare systems, and a fragmented treatment pathway. In both conditions, patients' capacity to manage workload was enhanced by the support of family and friends, peers and HCPs and diminished by illness/smoking-related stigma and social isolation. CONCLUSION: This interpretative synthesis has affirmed significant differences in treatment workload between lung cancer and COPD. It has demonstrated the importance of the capacity patients have to manage their workload in both conditions. This suggests a workload which exceeds capacity may be a primary driver of treatment burden. PROSPERO REGISTRATION NUMBER: CRD42016048191.

Work of being an adult patient with chronic kidney disease: a systematic review of qualitative studies.

INTRODUCTION: Chronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-management of their disease. We aimed to describe the work for adult patients that follows from these investments and develop an understanding of burden of treatment (BoT). METHODS: Systematic review of qualitative primary studies that builds on EXPERTS1 Protocol, PROSPERO registration number: CRD42014014547. We included research published in English, Spanish and Portuguese, from 2000 to present, describing experience of illness and healthcare of people with CKD and caregivers. Searches were conducted in MEDLINE, Embase, CINAHL Plus, PsycINFO, Scopus, Scientific Electronic Library Online and Red de Revistas Científicas de América Latina y el Caribe, España y Portugal. Content was analysed with theoretical framework using middle-range theories. RESULTS: Searches resulted in 260 studies from 30 countries (5115 patients and 1071 carers). Socioeconomic status was central to the experience of CKD, especially in its advanced stages when renal replacement treatment is necessary. Unfunded healthcare was fragmented and of indeterminate duration, with patients often depending on emergency care. Treatment could lead to unemployment, and in turn, to uninsurance or underinsurance. Patients feared catastrophic events because of diminished financial capacity and made strenuous efforts to prevent them. Transportation to and from haemodialysis centre, with variable availability and cost, was a common problem, aggravated for patients in non-urban areas, or with young children, and low resources. Additional work for those uninsured or underinsured included fund-raising. Transplanted patients needed to manage finances and responsibilities in an uncertain context. Information on the disease, treatment options and immunosuppressants side effects was a widespread problem. CONCLUSIONS: Being a person with end-stage kidney disease always implied high burden, time-consuming, invasive and exhausting tasks, impacting on all aspects of patients' and caregivers' lives. Further research on BoT could inform healthcare professionals and policy makers about factors that shape patients' trajectories and contribute towards a better illness experience for those living with CKD. PROSPERO REGISTRATION NUMBER: CRD42014014547.

A qualitative study of GP, nurse and practice manager views on using targeted case-finding to identify patients with COPD in primary care.

'Finding the missing millions' with chronic obstructive pulmonary disease became part of the Department of Health strategy for England in 2010. Targeted case-finding within primary care is one potential pro-active strategy, but currently little is known about the views of healthcare professionals on this approach. In this study, 36 healthcare professionals (12 GPs, 14 nurses, and 10 practice managers) from 34 UK practices participated in semi-structured telephone interviews about targeted case-finding. Interviews followed an interview guide, were audio-recorded, transcribed verbatim, coded and analysed using 'Framework Approach'. Most of those interviewed practiced opportunistic case-finding. The main perceived barriers to wider case-finding programmes were the resource implications associated with running such programmes and identifying more chronic obstructive pulmonary disease patients. Financial incentives, support from specialist clinicians, and comprehensive guidance were viewed as facilitators. While targeted case-finding is conceptually accepted by primary care staff, scepticism surrounding (1) the value of identifying those with mild disease and (2) the availability of effective targeted case-finding methods, may lead some to favour an opportunistic approach. Key concerns were a lack of unequivocal evidence for the relative benefits vs. disadvantages of diagnosing patients earlier, and resource constraints in an already over-burdened system. Barriers to practical implementation of case-finding studies may be addressed with financial, human and educational resources, such as additional staff to undertake searches and perform spirometry tests, and practical and educational support from specialist teams. CHRONIC OBSTRUCTIVE PULMONARY DISEASE: SUPPORT NEEDED TO IDENTIFY THOSE UNDIAGNOSED: Additional staff and resources would facilitate targeted searches for patients showing symptoms of early-stage chronic lung disease. Chronic obstructive pulmonary disease (COPD) costs the UK economy billions of pounds each year, yet disparate symptoms mean patients aren't always diagnosed in the early, treatable stages of the disease. Recent guidelines suggest introducing 'targeted case-finding', where symptomatic patients with known risk factors are identified and approached for testing by doctors. Rachael Summers and colleagues at the University of Southampton analyzed the opinions of healthcare professionals on implementing targeted case-finding in primary care. While most of the 36 professionals interviewed agreed that diagnosing COPD earlier had clear benefits, concerns were raised regarding negative patient responses and increased stress for patients, alongside the added strain on already stretched resources. Employing independent staff and enhancing resources may facilitate such a program.

Nursing model to deliver respiratory research.

Southampton Research and Development Department has managed several chronic obstructive pulmonary disease research studies, leading to the development of a unique nurse management model. This model has ensured that research recruitment targets are met, skilled respiratory nursing care is delivered, and evidence-based practice is translated into the clinical environment.