Integrated palliative care in oncology: a protocol for a realist synthesis.

INTRODUCTION: Emerging evidence suggests improved quality of life, reduced symptom burden and lower health services costs when integrated palliative care and cancer care are implemented. Integrated palliative care aims to achieve care continuity by integrating organisational, administrative and clinical services involved in patient care networks. However, integrated palliative care for cancer is not common practice. This project, therefore, aims to understand how integrated palliative care and cancer care works in different healthcare settings (inpatient/outpatient), and for which groups of people (at what stage of the cancer journey), so we can develop guidance for optimal delivery. METHODS AND ANALYSIS: We will conduct a realist synthesis to develop a programme theory of how integrated palliative care in cancer works, for whom and in what contexts to achieve improved symptom management and quality of life for patients and their families.This realist synthesis will follow the five stages outlined by Pawson: (1) locating existing theories, (2) searching for evidence, (3) article selection, (4) extracting and organising data and (5) synthesising the evidence and drawing conclusions. We will work closely with our expert stakeholder group, which includes health and social care professionals providing palliative care and oncology; management and policy groups and members of the public and patients. We will adhere to RAMESES quality standards for undertaking a realist synthesis. ETHICS AND DISSEMINATION: Ethics approval for this project is not required.The realist synthesis will develop a programme theory that provides clarity on the optimal delivery of palliative care for adults with cancer. We will use the programme theory to coproduce guidance and user-friendly outputs, working with stakeholders to inform delivery of best practice. Findings will inform further research in integrated palliative care and cancer. Stakeholder engagement will assist in the dissemination of our findings. PROSPERO REGISTRATION NUMBER: CRD42023389791.

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

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

Staging by Thoracoscopy in potentially radically treatable Lung Cancer associated with Minimal Pleural Effusion (STRATIFY): protocol of a prospective, multicentre, observational study.

INTRODUCTION: Recurrence rate following radical therapy for lung cancer remains high, potentially reflecting occult metastatic disease, and better staging tools are required. Minimal pleural effusion (mini-PE) is associated with particularly high recurrence risk and is defined as an ipsilateral pleural collection (<1/3 hemithorax on chest radiograph), which is either too small to safely aspirate fluid for cytology using a needle, or from which fluid cytology is negative. Thoracoscopy (local anaesthetic thoracoscopy (LAT) or video-assisted thoracoscopic surgery (VATS)) is the gold-standard diagnostic test for pleural malignancy in patients with larger symptomatic effusions. Staging by Thoracoscopy in potentially radically treatable Lung Cancer associated with Minimal Pleural Effusion (STRATIFY) will prospectively evaluate thoracoscopic staging in lung cancer associated-mini-PE for the first time. METHODS AND ANALYSIS: STRATIFY is a prospective multicentre observational study. Recruitment opened in January 2020. The primary objective is to determine the prevalence of detectable occult pleural metastases (OPM). Secondary objectives include assessment of technical feasibility and safety, and the impact of thoracoscopy results on treatment plans, overall survival and recurrence free survival. Inclusion criteria are (1) suspected/confirmed stages I-III lung cancer, (2) mini-PE, (3) Performance Status 0-2 (4), radical treatment feasible if OPM excluded, (5) ≥16 years old and (6) informed consent. Exclusion criteria are any metastatic disease or contraindication to the chosen thoracoscopy method (LAT/VATS). All patients have LAT or VATS within 7 (±5) days of registration, with results returned to lung cancer teams for treatment planning. Following an interim analysis, the sample size was reduced from 96 to 50, based on a lower-than-expected OPM rate. An MRI substudy was removed in November 2022 due to pandemic-related site setup/recruitment delays. These also necessitated a no-cost recruitment extension until October 2023. ETHICS AND DISSEMINATION: Protocol approved by the West of Scotland Research Ethics Committee (Ref: 19/WS/0093). Results will be published in peer-reviewed journals and presented at international meetings. TRIAL REGISTRATION NUMBER: ISRCTN13584097.

Using Co-design With Breast Cancer Patients and Radiographers to Develop "KEW" Communication Skills Training.

Previous work (FORECAST) has shown that concerns of breast cancer patients after finishing radiotherapy are responsive to conversations with radiographers during the treatment period. This study seeks to further understand radiographer and patient experiences, determine shared priorities for improvement in clinical interaction and develop communication guidelines and training to help radiographers support patients. Methods: Using the principles of Experience-Based Co-Design, semi-structured interviews were held with N = 4 patients (videoed) and N = 4 radiographers, followed by feedback events (N = 7) to validate findings. Patients and radiographers exchanged experiences in a joint co-design session, agreed with shared priorities and generated ideas for further support. A survey was conducted for process evaluation. To scale up findings, UK-wide representatives from patient networks (N = 8) and radiographers and managerial staff (N = 16) provided consultative input utilizing an iterative, adaptive procedure. Results: Radiographers expressed a need for support with "difficult conversations," especially those on Fear of Cancer Recurrence, and their appropriate management. Important pointers for reassuring communication were identified, including: being treated like a person, knowing what to expect, and space to ask questions. The co-design process was rated positively by both staff and patients. Thematic collation of findings and mapping these on literature evidence resulted in the "KEW" communication guidelines for radiographers: Know (Confidence; Expectations; Person), Encourage (Emotions; Space; Follow-up), Warmth (Start; Normalize; Ending). National stakeholder consultations validated and helped fine-tune the training model. The resulting training package, included: trigger videos (n = 6), a simulated patient scenario and interactive handouts on fears of cancer recurrence and the patient pathway. Conclusions: The co-design process captured good practice to help standardize quality in empathic communication in the radiotherapy service. The resulting KEW: Know, Encourage, Warmth guidelines, and training package are user-centered as well as evidence-based. Supplementing single-site co-design with national consultative feedback allows for the development of interventions that are relevant to the clinical practice, even in detail, and helps to generate appropriate buy-in for roll out on a wider scale after evaluation. Trial Registration: www.ClinicalTrials.gov ID: NCT03468881.

A controlled pilot trial of a nurse-led intervention (Mini-AFTERc) to manage fear of cancer recurrence in patients affected by breast cancer.

BACKGROUND: Fear of cancer recurrence (FCR) is common in people affected by breast cancer. FCR is associated with increased health service and medication use, anxiety, depression and reduced quality of life. Existing interventions for FCR are time and resource intensive, making implementation in a National Health Service (NHS) setting challenging. To effectively manage FCR in current clinical practice, less intensive FCR interventions are required. Mini-AFTERc is a structured 30-min counselling intervention delivered over the telephone and is designed to normalise moderate FCR levels by targeting unhelpful behaviours and misconceptions about cancer recurrence.This multi-centre non-randomised controlled pilot trial will investigate the feasibility of delivering the Mini-AFTERc intervention, its acceptability and usefulness, in relation to specialist breast cancer nurses (SBCNs) and patients. This protocol describes the rationale, methods and analysis plan for this pilot trial of the Mini-AFTERc intervention in everyday practice. METHODS: This study will run in four breast cancer centres in NHS Scotland, two intervention and two control centres. SBCNs at intervention centres will be trained to deliver the Mini-AFTERc intervention. Female patients who have completed primary breast cancer treatment in the previous 6 months will be screened for moderate FCR (FCR4 score: 10­14). Participants at intervention centres will receive the Mini-AFTERc intervention within 2 weeks of recruitment. SBCNs will audio record the intervention telephone discussions with participants. Fidelity of intervention implementation will be assessed from audio recordings. All participants will complete three separate follow-up questionnaires assessing changes in FCR, anxiety, depression and quality of life over 3 months. Normalisation process theory (NPT) will form the framework for semi-structured interviews with 20% of patients and all SBCNs. Interviews will explore participants' experience of the study, acceptability and usefulness of the intervention and factors influencing implementation within clinical practice. The ADePT process will be adopted to systematically problem solve and refine the trial design. DISCUSSION: Findings will provide evidence for the potential effectiveness, fidelity, acceptability and practicality of the Mini-AFTERc intervention, and will inform the design and development of a large randomised controlled trial (RCT). TRIAL REGISTRATION: ClinicalTrials.gov: NCT0376382. Registered 4th December 2018, https://clinicaltrials.gov/ct2/show/NCT03763825.

Specialist breast cancer nurses' views on implementing a fear of cancer recurrence intervention in practice: a mixed methods study.

INTRODUCTION: Fear of cancer recurrence (FCR) in people with breast cancer affects treatment recovery, quality of life, service utilisation and relationships. Our aim was to investigate how specialist breast cancer nurses (SBCN) respond to their patients' fears of cancer recurrence and analyse SBCN's views about embedding a new psychological intervention, the Mini-AFTERc, into their consultations. METHOD: A mixed methods sequential design was used, informed by normalisation process theory. Phase 1: UK SBCNs were emailed a web-based survey to investigate how breast cancer survivors' FCR is currently identified and managed, and their willingness to utilise the Mini-AFTERc. Phase 2: a purposive sample of respondents (n = 20) were interviewed to augment phase 1 responses, and explore views on the importance of addressing FCR, interest in the Mini-AFTERc intervention, its content, skills required and challenges to delivering the intervention. RESULTS: Ninety nurses responded to the survey. When SBCN's were asked to identify the proportion of patients experiencing FCR in their caseload, there was no consensus on the size of the problem or unmet need. They estimated that 20-100% people experience moderate FCR and 10-70% severe FCR. The interviews identified that clinical conversations are focused primarily on giving information about signs and symptoms of recurrence rather than addressing the psychological aspects of fear. CONCLUSION: Findings indicate wide variability in how FCR was identified, assessed and supported by a sample of UK SBCNs. The introduction of a structured intervention into practice was viewed favourably and has implications for nursing and health professional ways of working in all cancer services.

Communication skills training for the radiotherapy team to manage cancer patients' emotional concerns: a systematic review.

OBJECTIVES: Many cancer patients experience high levels of anxiety and concern during radiotherapy, often with long-lasting effects on their well-being. This systematic review aims to describe and determine the effectiveness of communication skills training (CST) for the radiotherapy team (RT) to improve conversations in this setting and to support patients with emotional concerns. DESIGN: Systematic review. INTERVENTIONS: CST for RT members. DATA SOURCES: On 17 April 2018, databases Medline, Embase, Scopus and PsycNET were searched. ELIGIBILITY CRITERIA, POPULATION, INTERVENTION, COMPARISON, OUTCOMEPICO: Quantitative and/or qualitative articles were included that evaluate the effect of a CST for RT members (vs no CST) on communication behaviours and patients' emotional concerns. DATA EXTRACTION AND SYNTHESIS: Articles were appraised using the mixed-methods appraisal tool, and a narrative synthesis was performed. RESULTS: Of the nine included articles, five were randomised controlled trials, three were mixed-methods and one used repeated measurements. Four of the five different CST programmes managed to increase emotional communicative behaviour from the RT, and all studies measuring patient communicative behaviour found an improvement in at least one of the hypothesised outcomes. Two studies examining patient anxiety and concerns found a positive effect of the CST, although one found a negative effect; two other studies without a positive effect on mood made use of both empathic CST and tools. CONCLUSIONS: There are promising indications that CST can be successfully introduced to improve emotional conversations between RT members and patients. With the right support, the RT can play an important role to help patients cope with their emotional concerns. Future work is necessary to confirm initial promising results and to ensure the learnt communication skills are sustained.

Living with and beyond cancer with comorbid illness: a qualitative systematic review and evidence synthesis.

PURPOSE: To identify the qualitative evidence on the experience of cancer and comorbid illness from the perspective of patients, carers and health care professionals to identify psycho-social support needs, experience of health care, and to highlight areas where more research is needed. METHODS: A qualitative systematic review following PRISMA guidance. Relevant research databases were searched using an exhaustive list of search terms. Two reviewers independently screened titles and abstracts and discussed variations. Included articles were subject to quality appraisal before data extraction of article characteristics and findings. Thomas and Harden's thematic synthesis of extracted findings was undertaken. RESULTS: Thirty-one articles were included in the review, covering a range of cancer types and comorbid conditions; with varying time since cancer diagnosis and apparent severity of disease for both cancer and other conditions. The majority of studies were published after 2010 and in high income countries. Few studies focused exclusively on the experience of living with comorbid conditions alongside cancer; such that evidence was limited. Key themes identified included the interaction between cancer and comorbid conditions, symptom experience, illness identities and ageing, self-management and the role of primary and secondary care. CONCLUSIONS: In addition to a better understanding of the complex experience of cancer and comorbidity, the review will combine with research prioritisation work with consumers to inform an interview study with the defined patient group. IMPLICATIONS FOR CANCER SURVIVORS: Expanding this evidence base will help to illuminate developing models of cancer patient-centred follow-up care for the large proportion of patients with comorbid conditions.

Sun exposure among teenage and young adult cancer survivors in the United Kingdom.

Skin cancers are a common form of second malignant neoplasm among teenage and young adult cancer survivors (TYACS). The Children's Oncology Group specifies that TYACS should adhere to safe sun practices and be screened for skin cancer annually. Cross-sectional self-report data collected by our group indicate over a third of TYACS (n = 229; mean age: 19.8 years) intentionally sunbathe, with many reporting sunburn. TYACS sunbathing, sunburn, and sunbed use are similar to the general population (P > 0.05). These data suggest TYACS require intervention to limit sun exposure and improve their sun safety habits.

Development, acceptability and feasibility of a communication skills training package for therapeutic radiographers to reduce fear of recurrence development in breast cancer patients (FORECAST2).

BACKGROUND: Many patients who have been treated for breast cancer experience high levels of fear that the cancer will return. The FORECAST pilot study showed that for a third of the patients, fears of cancer recurrence (FCR) increase during radiotherapy treatment and that conversations with their therapeutic radiographer at the weekly review meetings might help patients manage these concerns. This study aims to develop a communication skills training package (KEW, for 'Know', 'Encourage' and 'Warm-up') for therapeutic radiographers based on the findings of the FORECAST pilot study and on active input from patients and radiographers. This package will be piloted in a single centre to evaluate its acceptability and to prepare for a multi-centre clinical trial. METHODS: The study consists of three phases. In the first phase, patient representatives and therapeutic radiographers participate in Experience-Based Co-Design to identify ways to improve communication during the radiotherapy review. In the second phase, various stakeholders, including members of the Society of Radiographers and of national patient representation groups, are consulted to develop a storyboard for the production of the communication training package. In the third phase, the acceptability and feasibility of the training is evaluated through observations, recruitment rates and follow-up discussions; a fidelity measure is designed; and potential benefits are observed, with patients' fear of cancer recurrence (FCR7) as the primary outcome. Secondary outcomes include a short daily measure of recurrence (FCR3), patients' positive and negative affect (PANAS), perceived empathy from the radiographer (CARE), satisfaction with the review meetings (RISS) and health-related quality of life (EQ-5D-3L). DISCUSSION: To date, there has been limited research on how communication between therapeutic radiographers and patients during review appointments can help to manage patients' recurrence fears during radiotherapy treatment. A collaborative and participatory approach to the development of a communication skills training will ensure that it is optimally targeted to the needs and preferences of both patients and radiographers. Targeting recurrence fears through communication at this stage, when patients are still in regular contact with healthcare providers, has the potential to reduce the need for complex interventions post-treatment. TRIAL REGISTRATION: NRES reference: 18/LO/0669. Clinicaltrial.gov ID: NCT03468881.

Physical activity referral to cardiac rehabilitation, leisure centre or telephone-delivered consultations in post-surgical people with breast cancer: a mixed methods process evaluation.

BACKGROUND: Physical activity (PA) programmes effective under 'research' conditions may not be effective under 'real-world' conditions. A potential solution is to refer patients to existing PA community-based PA services. METHODS: A process evaluation of referral of post-surgical patients with early-stage breast cancer to cardiac rehabilitation exercise classes, leisure centre with 3-month free leisure centre membership or telephone-delivered PA consultations for 12 weeks. Quantitative data were collected about PA programme uptake and reach, patient engagement with the PA programme, delivery and fidelity and PA dose. Qualitative data were collected about patient experiences of taking part in the PA programmes. Audio-recorded qualitative interviews of participants about the programmes were analysed thematically. Quantitative data were reported descriptively using means and SD. RESULTS: In Phase I, 30% (n = 20) of eligible patients (n = 20) consented, 85% (n = 17) chose referral to leisure centre, and 15% (n = 3) chose cardiac rehabilitation. In Phase II, 32% (n = 12) consented, 25% (n = 3) chose leisure centre and 75% (n = 9) chose telephone-delivered PA consultations. Walking at light intensity for about an hour was the most common PA. All Phase I participants received an induction by a cardiac rehabilitation physiotherapist or PA specialist from the leisure centre but only 50% of Phase II participants received an induction by a PA specialist from the leisure centre. Four themes were identified from qualitative interviews about programme choice: concerns about physical appearance, travel distance, willingness to socialise and flexibility in relation to doing PA. Four themes were identified about facilitators and barriers for engaging in PA: feeling better, feeling ill, weight management, family and friends. CONCLUSIONS: The current community-based PA intervention is not yet suitable for a definitive effectiveness randomised controlled trial. Further work is needed to optimise PR programme reach, PA dose and intervention fidelity. TRIAL REGISTRATION: ISRCTN11183372.

A feasibility study of the Mini-AFTER telephone intervention for the management of fear of recurrence in breast cancer survivors: a mixed-methods study protocol.

BACKGROUND: Fear of recurrence (FoR) is a major concern for patients following treatment for primary breast cancer, affecting 60-99% of breast cancer survivors. Mini-AFTER is a brief intervention developed to address this fear, that breast care nurses are ideally placed to deliver. However, their interest in delivering such an intervention is unknown and crucial to its introduction. This study aims to assess the perceived feasibility of the Mini-AFTER telephone intervention for implementation by breast care nurses to manage moderate levels of fear of recurrence among breast cancer survivors. METHODS: A sequential explanatory mixed-methods design will be used, informed by normalisation process theory (NPT). The design will be guided by the stages of NPT. Specifically, understanding and evaluating the process (implementation) that would enable an intervention, such as the Mini-AFTER, not only to be operationalised and normalised into everyday work (embedded) but also sustained in practice (integration). Phase 1: all members on the UK Breast Cancer Care Nursing Network database (n = 905) will be emailed a link to a web-based survey, designed to investigate how breast cancer survivors' FoR is identified and managed within current services and their willingness to deliver the Mini-AFTER. Phase 2: a purposive sample of respondents (n = 20) will be interviewed to build upon the responses in phase 1 and explore breast care nurses' individual views on the importance of addressing fear of recurrence in their clinical consultations, interest in the Mini-AFTER intervention, the content, skills required and challenges to deliver the intervention. DISCUSSION: This study will provide information about the willingness of breast care nurses (BCNs) to provide a structured intervention to manage fear of recurrence. It will identify barriers and facilitators for effective delivery and inform the future design of a larger trial of the Mini-AFTER intervention.

Experience of living with cancer and comorbid illness: protocol for a qualitative systematic review.

INTRODUCTION: There are an increasing number of people living with and beyond cancer, whose experience is further complicated by additional long-term health conditions in the context of an ageing population. The supportive care needs of this growing patient group should be recognised and addressed. There is a need to explore the experience of living with cancer and comorbid illness in order to develop optimal models of patient-centred care. This protocol describes a systematic review that aims to identify the qualitative evidence relating to the experience of cancer and comorbid illness for patients, informal carers and professionals, and to highlight areas where more research is needed. METHODS AND ANALYSIS: A systematic review following PRISMA guidance will be undertaken. Medline, Embase, CINAHL, PsycINFO, ASSIA, Sociological Abstracts, Web of Science, SCOPUS, OpenGrey and ProQuest Dissertations and Theses Global databases will be systematically searched for articles relevant to patient, carer and professional experiences. Two independent reviewers will screen articles for inclusion and evaluate them according to the Critical Appraisal Skills Programme tool. Extracted data will be combined using recognised methods of qualitative synthesis to offer new insights into the topic area and for a patient-centred model of care. ETHICS AND DISSEMINATION: The review does not require formal ethical review as no direct patient contact or patient identifiable data is used. Conduct of the review has been approved internally by the University of Edinburgh Centre for Population Health Sciences Ethics Review Committee. Results of the review will be published in a generalist peer-reviewed journal and presented at a relevant conference in addition to informing subsequent empirical work by the authors on this topic area.