Multidisciplinary team meeting Chairs' attitudes and perceived facilitators, barriers and ideal improvements to meeting functionality: A qualitative study.

AIM: Oncology care provision by multidisciplinary teams (MDTs) is widely acknowledged as best practice. Formal team meetings, led by chairpersons, coordinate decisions on diagnosis, staging, treatment planning, and review. This study addresses a gap in meeting Chairs' perspectives on factors affecting functionality across the meeting cycle, from pre-meeting patient list triage to post-meeting dissemination of recommendations. METHODS: Semi-structured interviews were conducted in person with Chairs within two urban geographical regions in New South Wales, Australia as part of a larger project. Though the population of oncology MDT Chairs in Australia is small, the richness and depth of data from nine Chairs were considered to be valuable knowledge in support of extant literature on meeting functionality. An integrated deductive-inductive approach was applied to data analysis. RESULTS: Perceived facilitators, barriers, and ideals relating to pre-meeting, in-meeting, and post-meeting functionality were identified across five pre-determined analytic categories: the team; meeting infrastructure; meeting organization and logistics; patient-centered clinical decision-making, and; team governance. Key barriers included inadequate information technology, limited support staff, and lack of dedicated time for Chair duties. Corresponding facilitators included robust Information Technology infrastructure and support, provision of clinically knowledgeable MDT meeting coordinators, and formal employment recognition of Chairs' responsibilities and skill sets. CONCLUSION: Chairs across various tumor streams develop workarounds to overcome barriers and ensure quality meeting outcomes. With more robust support they could enhance value by sharing evidence, conducting audits, and engaging in research. The findings highlight the need for healthcare systems to support tumor stream clinical networks by allocating greater resources to prioritize multidisciplinary meetings and cancer care decision-making.

Experience of patients considering or using checkpoint inhibitors in cancer treatment: a systematic review of qualitative research.

Increasing numbers of patients with cancer are considering or undergoing immunotherapy, however, little is known about patients' perspectives on this treatment. We undertook a systematic review for use by clinicians and researchers, consolidating published qualitative research studies on patient experience of checkpoint inhibitor therapy. A search of Medline, Embase, and PsycINFO was carried out for publications in English to 30 June 2022. Publications were selected if they reported a qualitative study of patient experience with checkpoint inhibitor therapy for cancer, either by patients or their families or carers. Quality was appraised using the Johanna Briggs Institute quality assessment tool for qualitative studies. A thematic synthesis was conducted. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses standard was followed. We identified 17 eligible studies published between 2017 and 2022, 9 using mixed methods, and 8 solely using qualitative methods. Most studies reported on the experiences of patients with advanced stage melanoma and were using the earliest approved checkpoint inhibitors for cancer therapy. Studies met most formal quality criteria but varied in the extent of their qualitative explorations of data; some mixed methods studies had limited reporting of qualitative results. Through thematic synthesis, we categorized study findings into four domains: (1) treatment decision-making; (2) success with immunotherapy; (3) treatment-related adverse events (AEs); and (4) quality of life on immunotherapy. Our review identified several areas with potential for improving the care system. These include, for example: routinely linking patients to peers who have experienced this therapy; improving the capacity of patients and carers to identify and report AEs faster; and supporting patients and carers to live with changed circumstances after successful treatment. Most studies focused on patients who had successful treatment, effectively excluding those who do not respond or who discontinue due to serious side effects; future research targets are suggested.

Age-related experiences of colorectal cancer diagnosis: a secondary analysis of the English National Cancer Patient Experience Survey.

OBJECTIVE: The incidence of colorectal cancer (CRC) in people aged <50 years has been increasing dramatically in the past three decades and such patients are known to face difficulties in diagnosis. The objective of this study was to better understand the diagnostic experiences of patients with CRC and explore age-related differences in the proportion with positive experiences. METHOD: A secondary analysis of the English National Cancer Patient Experience Survey (CPES) 2017 was conducted on the responses of patients with CRC, restricted to those likely to have been diagnosed in the preceding 12 months via pathways other than routine screening. Ten diagnosis-related experience questions were identified, with responses to them categorised as positive, negative or uninformative. Age group-related difference in positive experiences were described and ORs estimated, both raw and adjusted for selected characteristics. Sensitivity analysis was performed by weighting survey responses to 2017 cancer registrations by strata defined by age group, sex and cancer site, to assess whether differential response patterns by these characteristics affected the estimated proportion of positive experiences. RESULTS: The reported experiences of 3889 patients with CRC were analysed. There was a significant linear trend (p<0.0001) for 9 of 10 experience items, with older patients consistently displaying higher rates of positive experiences and patients aged 55-64 showing rates of positive experience intermediate between younger and older age groups. This was unaffected by differences in patient characteristics or CPES response rates. CONCLUSION: The highest rates of positive diagnosis-related experiences were reported by patients aged 65-74 or 75 years and older, and this is robust.

Things I need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients' personal accounts published online.

OBJECTIVE: People with early-onset colorectal cancer (EOCRC), defined as colorectal cancer (CRC) before the age of 50, now constitute a significant patient population. In empirical and grey literature EOCRC patients report unsatisfactory experiences of care, especially in relation to protracted intervals from first help-seeking to diagnosis. This study is the first to investigate EOCRC patients' perspectives on ways to improve experiences of care. The objective is to provide foundational knowledge for the development of EOCRC-specific patient-reported experience measures (PREMs). DESIGN: The study was designed as qualitative Internet Mediated Research, involving a thematic analysis of unsolicited narratives recounting personal experiences of EOCRC care. We examined advice-giving statements in 120 online texts written by EOCRC patients and survivors. SETTING: The Internet is the broad research setting. The host websites of three prominent charitable CRC support organisations were selected as specific research sites: Bowel Cancer Australia, Bowel Cancer UK and Bowel Cancer New Zealand. RESULTS: We found that 90% of texts comprised statements of advice to new patients about the importance of self-advocacy in achieving quality care. Four key contexts for self-advocacy were identified: (1) accessing relevant diagnostic services; (2) driving diagnostic investigations when symptoms are not resolved; (3) involvement in treatment decision-making and (4) proactivity about preferred outcomes. Over 30% of advice-giving texts also directed statements of advice to healthcare providers, indicating that their youthfulness had been a barrier to timely diagnosis. CONCLUSION: Healthcare barriers to, and facilitators of, patient self-advocacy may be indicators of quality EORC care. There is a need for greater awareness of the impact of age bias on the responsiveness of clinicians and healthcare services in EOCRC care. Our findings support the development of EOCRC-specific PREMs that can guide age-appropriate policy and practice for this newly identified patient population.

People with early-onset colorectal cancer describe primary care barriers to timely diagnosis: a mixed-methods study of web-based patient reports in the United Kingdom, Australia and New Zealand.

BACKGROUND: People with early-onset colorectal cancer, under the age of 50, are more likely to experience diagnostic delay and to be diagnosed at later stages of the disease than older people. Advanced stage diagnosis potentially requires invasive therapeutic management at a time of life when these patients are establishing intimate relationships, raising families, building careers and laying foundations for financial stability. Barriers to timely diagnosis at primary care level have been identified but the patient perspective has not been investigated. METHODS: Personal accounts of cancer care are increasingly accessed as rich sources of patient experience data. This study uses mixed methods, incorporating quantitative content analysis and qualitative thematic analysis, to investigate patients' accounts of early-onset colorectal cancer diagnosis published on prominent bowel cancer support websites in the United Kingdom, Australia and New Zealand. RESULTS: Patients' perceptions (n = 273) of diagnostic barriers at primary care level were thematically similar across the three countries. Patients perceived that GPs' low suspicion of cancer due to age under 50 contributed to delays. Patients reported that their GPs seemed unaware of early-onset colorectal cancer and that they were not offered screening for colorectal cancer even when 'red flag' symptoms were present. Patients described experiences of inadequate information continuity within GP practices and across primary, specialist and tertiary levels of care, which they perceived contributed to diagnostic delay. Patients also reported tensions with GPs over the patient-centredness of care, describing discord related to symptom seriousness and lack of shared decision-making. CONCLUSIONS: Wider dissemination of information about early-onset colorectal cancer at primary care level is imperative given the increasing incidence of the disease, the frequency of diagnostic delay, the rates of late-stage diagnosis and the dissatisfaction with patient experience reported by patients whose diagnosis is delayed. Patient education about diagnostic protocols may help to pre-empt or resolve tensions between GPs' enactment of value-based care and patients' concerns about cancer. The challenges of diagnosing early-onset colorectal cancer are significant and will become more pressing for GPs, who will usually be the first point of access to a health system for this growing patient population.

The complexities, coordination, culture and capacities that characterise the delivery of oncology services in the common areas of ambulatory settings.

BACKGROUND: Relatively little is understood about real-world provision of oncology care in ambulatory outpatient clinics (OPCs). This study aimed to: 1) develop an understanding of behaviours and practices inherent in the delivery of cancer services in OPC common areas by characterising the organisation and implementation of this care; and 2) identify barriers to, and facilitators of, the delivery of this care in OPC common areas. METHODS: A purpose-designed ethnographic study was employed in four public hospital OPCs. Informal field scoping activities were followed by in-situ observations, key informant interviews and document review. A view of OPCs as complex adaptive systems was used as a scaffold for the data collection and interpretation, with the intent of understanding 'work as done'. Data were analysed using an adapted "Qualitative Rapid Appraisal, Rigorous Analysis" approach. RESULTS: Field observations were conducted over 135 h, interviews over 6.5 h and documents were reviewed. Analysis found six themes. Staff working in OPCs see themselves as part of small local teams and as part of a broader multidisciplinary care team. Professional role boundaries could be unclear in practice, as duties expanded to meet demand or to stop patients "falling through the cracks." Formal care processes in OPCs were supported by relationships, social capital and informal, but invaluable, institutional expertise. Features of the clinic layout, such as the proximity of departments, affected professional interactions. Staff were aware of inter- and intra-service communication difficulties and employed strategies to minimise negative impacts on patients. We found that complexity, coordination, culture and capacity underpin the themes that characterise this care provision. CONCLUSIONS: The study advances understanding of how multidisciplinary care is delivered in ambulatory settings and the factors which promote or inhibit effective care practice. Time pressures, communication challenges and competing priorities can pose barriers to care delivery. OPC care is facilitated by: self-organisation of participants; professional acumen; institutional knowledge; social ties and relationships between and within professional groups; and commitment to patient-centred care. An understanding of the realities of 'work-as-done' may help OPCs to sustain high-quality care in the face of escalating service demand.

Providing outpatient cancer care for CALD patients: a qualitative study.

OBJECTIVE: There have been few descriptions of how outpatient cancer care is provided to patients from culturally and linguistically diverse (CALD) communities. As populations who experience disparities in cancer care access and outcomes, deeper understanding is needed to help identify those factors which can shape the receipt of multidisciplinary care in ambulatory settings. This paper reports on data collected and analysed as part of a multicentre characterisation of care in Australian public hospital cancer outpatient clinics (OPCs). RESULTS: Analysis of data from our ethnographic study of four OPCs identified three themes: "Identifying CALD patient language-related needs"; "Capacity and resources to meet CALD patient needs", and "Making it work for CALD communities." The care team comprises not only clinicians but also families and non-clinical staff; OPCs serve as "touchpoints" facilitating access to a range of therapeutic services. The findings highlight the potential challenges oncology professionals negotiate in providing care to CALD communities and the ways in which clinicians adapt their practices, formulate strategies and use available resources to support care delivery.

Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study.

BACKGROUND: Young-onset colorectal cancer is a contemporary issue in need of substantial research input. The incidence of colorectal cancer in adults younger than 50 years is rising in contrast to the decreasing incidence of this cancer in older adults. People with young-onset colorectal cancer may be at that stage of life in which they are establishing their careers, building relationships with long-term partners, raising children, and assembling a financial base for the future. A qualitative study designed to facilitate triangulation with extant quantitative patient-reported data would contribute the first comprehensive resource for understanding how this distinct patient population experiences health services and the outcomes of care throughout the patient pathway. OBJECTIVE: The aim of this study was to undertake a mixed-methods study of qualitative patient-reported data on young-onset colorectal cancer experiences and outcomes. METHODS: This is a study of web-based unsolicited patient stories recounting experiences of health services and clinical outcomes related to young-onset colorectal cancer. Personal Recollections Organized as Data (PROD) is a novel methodology for understanding patients' health experiences in order to improve care. PROD pivots qualitative data collection and analysis around the validated domains and dimensions measured in patient-reported outcome and patient-reported experience questionnaires. PROD involves 4 processes: (1) classifying attributes of the contributing patients, their disease states, their routes to diagnosis, and the clinical features of their treatment and posttreatment; (2) coding texts into the patient-reported experience and patient-reported outcome domains and dimensions, defined a priori, according to phases of the patient pathway; (3) thematic analysis of content within and across each domain; and (4) quantitative text analysis of the narrative content. RESULTS: Relevant patient stories have been identified, and permission has been obtained for use of the texts in primary research. The approval for this study was granted by the Macquarie University Human Research Ethics Committee in June 2020. The analytical framework was established in September 2020, and data collection commenced in October 2020. We will complete the analysis in March 2021 and we aim to publish the results in mid-2021. CONCLUSIONS: The findings of this study will identify areas for improvement in the PROD methodology and inform the development of a large-scale study of young-onset colorectal cancer patient narratives. We believe that this will be the first qualitative study to identify and describe the patient pathway from symptom self-identification to help-seeking through to diagnosis, treatment, and to survivorship or palliation for people with young-onset colorectal cancer. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/25056.

Nudging clinicians: A systematic scoping review of the literature.

BACKGROUND: While the quality of medical care delivered by physicians can be very good, it can also be inconsistent and feature behaviours that are entrenched despite updated information and evidence. The "nudge" paradigm for behaviour change is being used to bring clinical practice in line with desired standards. The premise is that behaviour can be voluntarily shifted by making particular choices instinctively appealing. We reviewed studies that are explicit about their use of nudge theory in influencing clinician behaviour. METHODS: Databases were searched from April 2008 (the publication date of the book that introduced nudge theory to a wider audience) to November 2018, inclusive. The search strategy and narrative review of results addressed the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews. RESULTS: 22 studies were identified. Randomized trials or pre-post comparisons were generally used in community-based settings; single-site pre-post studies were favoured in hospitals. The studies employed eight intervention types: active choice; patient chart redesign; default and default alerts; partitioning of prescription menus; audit and feedback; commitment messages; peer comparisons; and redirection of workflow. Three core cognitive factors underpinned the eight interventions: bias towards prominent choices (salience); predisposition to social norms; and bias towards time or cost savings. CONCLUSIONS: Published studies that are explicit about their use of nudge theory are few in number and diverse in their settings, targets, and results. Default and chart re-design interventions reported the most substantial improvements in adherence to evidence and guideline-based practice. Studies that are explicit in their use of nudge theory address the widespread failure of clinical practice studies to identify theoretical frameworks for interventions. However, few studies identified in our review engaged in research to understand the contextual and site-specific barriers to a desired behaviour before designing a nudge intervention.

Clinicians' attitudes and perceived barriers and facilitators to cancer treatment clinical practice guideline adherence: a systematic review of qualitative and quantitative literature.

BACKGROUND: Clinical Practice Guidelines (CPGs) synthesize the best available evidence to guide clinician and patient decision making. There are a multitude of barriers and facilitators to clinicians adhering to CPGs; however, little is known about active cancer treatment CPG adherence specifically. This systematic review sought to identify clinician attitudes, and perceived barriers and facilitators to active cancer treatment CPG adherence. METHODS: A systematic search was undertaken of five databases; Ovid Medline, PsychInfo, Embase, Scopus, CINAHL, and PROQUEST. The retrieved abstracts were screened for eligibility against inclusion criteria, and a full text review was conducted of all eligible studies. Data were extracted, and a quality assessment was conducted of all included studies. The qualitative papers were thematically analyzed. Attitudes, barriers, and facilitating factors extracted from the quantitative papers were categorized within the qualitative thematic framework. RESULTS: The search resulted in the identification of 9676 titles. After duplicates were removed, abstracts screened, and full texts reviewed, 15 studies were included. Four themes were identified which related to negative clinician attitudes and barriers to active cancer treatment CPG adherence: (1) concern over CPG content and currency of CPGs; (2) concern about the evidence underpinning CPGs; (3) clinician uncertainty and negative perceptions of CPGs; and (4) organizational and patient factors. The review also identified four themes related to positive attitudes and facilitators to active cancer treatment CPG adherence: (5) CPG accessibility and ease of use; (6) endorsement and dissemination of CPGs and adequate access to treatment facilities and resources; (7) awareness of CPGs and belief in their relevance; and (8) belief that CPGs support decision making, improve patient care, reduce clinical variation, and reduce costs. CONCLUSION: These results highlight that adherence to active cancer treatment CPG recommendations by oncology clinicians is influenced by multiple factors such as attitudes, practices, and access to resources. The review has also revealed many similarities and differences in the factors associated with general CPG, and active cancer treatment CPG, adherence. These findings will inform tailored implementation strategies to increase adherence to cancer treatment CPGs. TRIAL REGISTRATION: PROSPERO (2019) CRD42019125748.

What is multidisciplinary cancer care like in practice? a protocol for a mixed-method study to characterise ambulatory oncology services in the Australian public sector.

INTRODUCTION: An understanding of the real-world provision of oncology outpatient services can help maintain service quality in the face of escalating demand and tight budgets, by informing the design of interventions that improve the effectiveness or efficiency of provision. The aims of this study are threefold. First, to develop an understanding of cancer services in outpatient clinics by characterising the organisation and practice of multidisciplinary care (MDC). Second, to explore the key areas of: (a) clinical decision-making and (b) engagement with patients' supportive needs. Third, to identify barriers to, and facilitators of, the delivery of quality care in these settings. METHODS AND ANALYSIS: A suite of mixed-methods studies will be implemented at six hospitals providing cancer outpatient clinics, with a staged roll-out. In Stage One, we will examine policies, use unstructured observations and undertake interviews with key health professionals to characterise the organisation and delivery of MDC. In Stage Two, observations of practice will continue, to deepen our understanding, and to inform two focused studies. The first will explore decision-making practices and the second will examine how staff engage with patients' needs; both studies involve interviews, to complement observation. As part of the study of supportive care, we will examine the implications of an introduction of patient-reported measures (PRMs) into care, adding surveys to interviews before and after PRMs roll-out. Data analysis will account for site-specific and cross-site issues using an adapted Qualitative Rapid Appraisal, Rigorous Analysis approach. Quantitative data from clinician surveys will be statistically analysed and triangulated with the related qualitative study findings. ETHICS AND DISSEMINATION: Ethical approval was granted by South Eastern Sydney Local Health District Human Research Ethics Committee (no. 18/207). Findings will be shared with participating hospitals and widely disseminated through publications and presentations.

The challenge of putting principles into practice: Resource tensions and real-world constraints in multidisciplinary oncology team meetings.

Multidisciplinary oncology team meetings are crucial hubs for integrated, patient-centered diagnosis and treatment planning. Team meetings are designed to enact the best practice principles of multidisciplinary care. Yet surveys of clinicians and allied health providers who are members of multidisciplinary teams (MDTs) identify real-world constraints on putting principles into practice. We review the guidelines for multidisciplinary care set out by Cancer Australia and scope the real-world constraints in enacting each of these guidelines, focusing on the crucial MDT meeting component of multidisciplinary care. We discuss resources and strategies required for compliance.

Reading Between the Lines: A Five-Point Narrative Approach to Online Accounts of Illness.

The successful delivery of patient-centered care hinges on clinical affiliation for patients' personal needs and experiences. Narrative competence is a mode of thinking and set of actions that widens the clinical gaze beyond logico-scientific cognition. In this article, we investigate a tool that enables clinicians to rehearse their skills in narrative competence. We apply the narrative competence framework developed by the founding practitioners of narrative medicine to personal accounts of illness and patienthood published on the Internet. We describe our use of the five-point framework in the close reading of 214 accounts by people with the life-threatening skin cancer melanoma.

What information do patients want across their cancer journeys? A network analysis of cancer patients' information needs.

BACKGROUND: Patients want information across their cancer journeys. We investigated what sort of information they want and at what stage in the cancer journey by examining English patients' satisfaction derived from ratings of their care. METHODS: Using patient experience data from 209 Clinical Commission Groups (CCGs) involving 72 788 respondents in 2016, overall patient satisfaction ratings and information needs questions were extracted. Novel network analysis techniques were used to construct an undirected weighted concentration network to assess the relationship between information needs and patient satisfaction. RESULTS: From the network analysis, we found that patients value information early in the pathway; there were higher associations between patient satisfaction and when information needs are met in earlier phases of the cancer journey. Across the stages of the cancer journey, strong associations between information needs and patient satisfaction emerged during diagnostic testing and also at those points when patients received information provided by the clinical nurse specialists. A mixture of strong and weak associations between patient satisfaction and information needs was found during later phases of the cancer journey, specifically when patients move from treatment to home care. Our study identified that meeting needs for information related to supportive care may be a weaker factor in patient satisfaction than meeting needs for information related to the patient's disease, its treatment and the side effects of treatment. CONCLUSION: If patients have their information needs met, especially during stages within the cancer journey when information needs are highest, they are more likely to be satisfied with their care. Our study has implications for information giving and improving patient satisfaction in cancer care.

When Patients Tell Their Own Stories: A Meta-Narrative Study of Web-Based Personalized Texts of 214 Melanoma Patients' Journeys in Four Countries.

Malignant melanoma is an aggressive, recalcitrant disease. Its impact on people can be compounded by the physical and psychosocial consequences of medical management. Providing melanoma patients with patient-centered care that is effective, safe, and supportive throughout their journey requires knowledge of patients' progressive experiences and evolving perspectives. With ethical approval, we undertook a meta-narrative study of 214 experiential accounts of melanoma collected from the personal story sections of melanoma and cancer support websites. Using a narrative approach, we qualitatively examined the care experiences represented in these accounts and identified needs for supportive care in a framework reflective of the personal patient journey. We differentiate these across three key periods: lead-up to diagnosis; diagnosis, treatment, and recovery; and posttreatment and recurrence, and provide a visual representation of the patient journey. This article contributes to the growing body of work that utilizes Internet content as sources of qualitative, experiential health care data.

Patients as story-tellers of healthcare journeys.

There are gaps in our comprehension of patients' subjective experiences as they engage with and transit through the healthcare environments implicated in their treatment trajectories. Patients' stories, unlike patient experience data gathered in questionnaires and surveys, express the deeply personal, narrative nature of the journeys that patients take, creating opportunities for qualitative healthcare research. Yet narrative capabilities and propensities vary with individuals, and are affected by the stresses of illness and treatment. This article extends the growing interest in narrative competence training for both practitioners and patients with the investigation of a story-telling model that could facilitate patients to narrate their experiences of healthcare systems. This model is derived from the literary arts. In fiction and autobiography, the journey arc of the central character is often one in which he or she is compelled to leave the comfort of everyday life and face a series of extraordinary events involving challenge and change which forces the character towards practical, intellectual, psychological and philosophical adjustments that define, by the end of the story, the character's 'new normal'. This pattern is known as the 'hero journey'. Its parallels with patients' experiences of healthcare and the way people narrate their stories of illness have long been recognised. We present here a new idea for applying this model as a narrative structure by which patients may construct their stories about being in and moving through the healthcare system.