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Background. Cancer diagnosis is a complex and multifaceted process that can be stressful and anxiety-provoking for patients. Evidence-based tools and information aids that can be used for guiding and supporting patients during cancer investigations and after diagnosis are limited. This paper presents a user-centred codesign project that aims to develop a cancer pathway support tool for patients, carers, and healthcare professionals. Method. A mixed-method codesign approach was used including prototype development (January–March 2022), three online codesign workshops (April–June 2022), one-to-one feedback, and beta testing informed by the standardised Theoretical Framework of Acceptability (TFA) questionnaire (July–October 2022). Nine individuals with lived experience of cancer contributed to the project and are referred to as codesigners. Results. The codesigners valued the potential importance of a tool that can be used by the patients and carers if they want specific information about cancer investigations, diagnosis, and treatment. The ability to select what they need as opposed to long leaflets and generating their own questions for the healthcare providers were highlighted as important aspects of improving patient care. The tool was collectively designed to provide clear definitions of the cancer care pathway and easily accessible links from trusted resources and includes practical information to minimise the burden that can be experienced from preparation for appointments and tests. Beta testing results with a small sample of potential users including patients, carers, and healthcare providers (n = 23) showed high acceptability of the guide (range = 7–35, mean = 28.52, and standard deviation = 3.88) based on the TFA questionnaire. Conclusion. A cancer pathway support tool called "Your Cancer Pathway Support Guide (YCPSG)" was developed as a result of an iterative codesign process aiming to improve patient experience and outcomes for people referred on a suspected cancer pathway or who have been diagnosed with cancer. The tool provides information and support in both digital and PDF formats. Further studies are needed to evaluate the potential impact of "Your Cancer Pathway Support Guide" on patient outcomes and experience and the wider system. [ABSTRACT FROM AUTHOR]

Objective: This survey aimed to analyse healthy citizens (HC), cancer patients and their caregivers (CP&CG) perception about cancer care among six different Italian regions. Methods: The survey for HC was conducted by a multinational market research institute (IPSOS) through a computer‐assisted web interviewing system, using a dataset of people who had consented to be interviewed for previous studies. CP&CG were interviewed by patient advocates using paper questionnaires. Results: HC completed 1831 questionnaires between May and June 2019; CP&CG filled 1779 questionnaires between May and October 2019. 55% of all interviewees felt they were adequately informed about cancer, with no disparities between regions. Overall, population was satisfied with the National Health Care System (HCS), CP&CG more than HC, probably for their personal positive experience. There were different satisfaction levels between regions regarding components of the pathway of care, but agreement about health workers' 'human component'. Forty‐three per cent of the interviewed were informed about genetic tests, 47% about innovative drugs. The percentage was greater among CP&CG (51% and 61% respectively). Conclusions: Italian people were overall satisfied with HCS although with significant different perceptions between regions. Moreover, some critical issues were highlighted as low adherence at screening invitation and genetic tests. Understanding people's perception regarding HCS is crucial to support health policies and to improve the performance of HCS. [ABSTRACT FROM AUTHOR]

Background. Chemotherapy can cause a range of side effects including nausea, vomiting, diarrhea, and infection, which can have a significant impact on an individual's quality of life. Survival outcomes can be impacted when side effects are poorly managed, leading to failure to complete the defined dose of treatment. Objective. This study presents clinicians' experiences with a shared care model involving home-based community nurse (CN) support to improve side-effect management of individuals receiving chemotherapy as an outpatient. Methods. A qualitative study was conducted with CNs, cancer nurses, medical oncologists, and a general practitioner involved in the CN intervention delivered as part of a randomized controlled trial (RCT) aimed at reducing unplanned presentations to hospital of cancer patients receiving outpatient chemotherapy. Semistructured individual and focus group interviews were conducted. Key themes were identified using thematic analysis. Findings. Twenty-three healthcare professionals were interviewed. Three themes were identified: (1) being able to enhance patient-centered care and clinical practice during chemotherapy; (2) importance of effective communication and collaborative relationships between different care settings; and (3) ways to adapt the intervention for implementation in routine clinical practice. Participants reported that it was feasible for CNs to care for this patient group, and their home visits enabled preemptive symptom management. Suggestions to improve and modify the intervention to implement this care model within existing clinical care included a flexible approach, such as a blended delivery with face-to-face visits and telephone calls; a risk- or needs-based approach to prioritize patient groups more likely to benefit from the intervention; and sharing of electronic medical records for more effective collaboration and communication. Conclusions. A CN-delivered shared care model provided a feasible approach to the provision of individualized support for outpatients receiving chemotherapy. This study suggests ways to adapt this care model into existing clinical workflow and structures. This trial is registered with ACTRN12614001113640. [ABSTRACT FROM AUTHOR]

Objective. Lung cancer is commonly diagnosed and is the leading cause of cancer-related death, morbidity, and burden of disease globally. There is an ongoing need to ensure patients receive optimal evidence-based care and to identify and reduce unwarranted clinical variation to achieve best possible outcomes. The EnRICH program has developed evidence-based clinical quality indicators to measure processes and outcomes of lung cancer care, and a feedback dashboard to report comparative performance data, which highlight variation in both care and outcomes. The aims of this study were to evaluate the acceptability and utility of the quality indicators and feedback dashboard and identify benchmarks for performance monitoring and priorities for future quality improvement interventions to address observed clinical variation. Method. Clinicians from lung cancer multidisciplinary teams (MDTs) at six tertiary clinical sites across regional and metropolitan NSW were invited to participate in evaluation interviews. Interviews were conducted via videoconference and recorded with consent. Data were analysed thematically using framework methods. Results. Thirteen clinicians participated in interviews, with representation from each clinical site and specialty. All participants considered the quality indicators to be clinically meaningful. Three main themes were identified: (i) the importance of timely, local, quality data; (ii) implementable versus nonimplementable clinical practice changes; and (iii) the need for ongoing performance monitoring. Clinicians prioritised two areas of unwarranted clinical variation that could be immediately addressed through easily implementable quality improvement interventions to positively impact patient care: (i) a process to ensure that all stage III patients are discussed by a multidisciplinary team prior to commencing treatment; (ii) a referral pathway to palliative care within eight weeks for patients diagnosed with stage IV disease. The importance of lung cancer nurse specialists for improved care coordination was highlighted. Conclusion. Clinicians would like to continue to receive close-to-real-time quality data for ongoing performance monitoring to identify and address unwarranted clinical variation. [ABSTRACT FROM AUTHOR]

Aim. To describe the process of developing a resource, the "Prostate Cancer Outcomes Report Card," that provides information for men with prostate cancer and their family members about the outcomes of different treatment approaches. Methods. The project consisted of two phases. The first phase involved analysis of real-world data and translating outcomes into a format that consumers found easy to understand and interpret. The Report Card was developed in consultation with a consumer advisory group (n = 8). The second phase involved refinements of the resource through exploratory qualitative interviews with consumers (n = 14), an online survey among the general public (n = 134), and clinician feedback (n = 8). Results. Consumer engagement to explore preferences about the content and visual presentation from the end-users' perspective was crucial in designing this report. Consumers required trustworthy, comprehensive, simple, and up-to-date information collated in one place to help them understand the risks and benefits of their treatments. Presenting survival, cancer recurrence, and functional outcomes by treatment type and risk category was highly commended while data on high survival rates were considered reassuring. We identified high levels of unmet psychosocial and supportive care need, with differences in individual preferences around extent of information required. Conclusions. Communicating registry data about real-world outcomes in a consumer-friendly way may help fill a gap in information needs among prostate cancer survivors. Providing relatively simple and easily understandable evidence in a single consumer-oriented report may help prostate cancer survivors become better informed and facilitate patient-provider communication and shared decision making. [ABSTRACT FROM AUTHOR]

Objective: The objective of this work is to identify unmet information needs of long‐term‐survivors of breast cancer (BC) and future research needs from the perspectives of patients and health care professionals. Methods: Two online Delphi surveys were conducted. Participants in Survey 1 were patients. Participants in Survey 2 were health care professionals from both primary and secondary care involved in BC care. Both surveys included three successive rounds. The first round aimed to identify research and information needs; the second round aimed to rank the relative importance of those needs; the third round aimed to find consensus. Results: The most important information needs were self‐management recommendations of common health problems after treatment and complications of breast reconstruction after 5 years. The most important research priorities were related to interventions and tools to increase information provision by professionals about certain tests, diet, and coordinated action between primary and specialised care during follow‐up, and indications and safety issues of pregnancy in survivors. Conclusions: Two fundamental ideas were identified: (1) Patients request information about self‐management common health problems after treatment and breast reconstruction complications. (2) Health care professionals emphasise the need for a standardised approach based on protocols, recommendations, and coordinated actions in the provision of information. Implications for cancer survivors: Given the increasing number of BC survivors, it is essential to identify information and research needs to improve their care and health outcomes. [ABSTRACT FROM AUTHOR]

Objective: Breast cancer patients for whom less intensive surveillance is sufficient can be identified based on the risk for locoregional recurrences (LRRs). This study explores health care professionals' (HCPs) perspectives on less intensive surveillance, preferences for shared decision‐making (SDM) about surveillance and perspectives on the use of patients' estimated personal risk for LRRs in decision‐making about surveillance. Methods: We conducted semi‐structured interviews with 21 HCPs providing follow‐up care for breast cancer patients in seven Dutch teaching hospitals (Santeon hospitals). Results: HCPs were predominantly positive about less intensive surveillance for women with a low risk for recurrences. They mentioned important prerequisites such as clearly defined surveillance schedules based on risk categories, information provision and communication support for patients and HCPs. Most HCPs supported SDM about surveillance and were positive about using patients' estimated personal risk for LRRs. HCPs specified prerequisites such as clear visualisation and explanation of risk information, attention for fear of cancer recurrence (FCR) and defined surveillance schedules for specific risk groups. Conclusion: Mentioned prerequisites for less intensive surveillance need to be accounted for. Information needs and existing misconceptions need to be addressed. Outcome information regarding risks for LRRs and FCR can enrich the SDM process about surveillance. [ABSTRACT FROM AUTHOR]

Objective: In Switzerland, palliative sedation consists of using sedatives to relieve terminally ill patients. It is divided into several steps, with one of them consisting of informing patients and relatives about the procedure. In the current recommendations, there is a lack of orientation about how and when this discussion should take place. Hence, we aim to explore perceptions and experiences of palliative care professionals regarding these questions. Methods: Qualitative semi‐structured interviews with five physicians and five nurses working in specialised palliative care were conducted. They were then analysed with thematic analysis. Results: Results showed a uniformity around definition, goals and indications of palliative sedation. However, there was a lack of consistency regarding the process of delivering this information to patients and relatives. Finally, some participants strongly opposed the idea of systematically informing patients in specialised palliative care, while others were more divided on this question. Conclusion: Despite a common understanding of the concept of palliative sedation, there is no standard practice when informing patients on palliative sedation among palliative care professionals. Therefore, this study demonstrates the need for further guidelines on this question and calls for a better understanding and knowledge of palliative sedation among health professionals outside palliative care. [ABSTRACT FROM AUTHOR]

Objective: The shared decision‐making (SDM) process for the treatment of pancreatic and oesophageal cancer primarily takes place with healthcare professionals (HCPs) in the hospital setting. This study aims to explore the perspectives of general practitioners (GPs) on their possible roles during this SDM process, their added value and their requirements for involvement in SDM. Methods: Semi‐structured interviews were conducted with 12 GPs about their views on SDM for patients with cancer. The interviews were analysed by two researchers using an inductive open coding approach. Results: Five potential roles in SDM were described by the interviewed GPs, of which the role as 'coach' of the patient was mentioned by all. GPs see their main added value as their long‐standing relationship with the patient. To be able to participate optimally in SDM, GPs indicated that they need to be kept up to date during the patient's care process and should receive enough medical information about treatment options and contextual information. Conclusion: GPs see different potential roles for themselves when involved in SDM. Hospital HCPs that want to facilitate GP involvement should take the initiative, provide the GPs with enough and timely information and must be easy to consult. [ABSTRACT FROM AUTHOR]

Objective: To understand current U.K. management pathways for patients with resected stage III melanoma and changes expected with the routine availability of systemic adjuvant melanoma treatments. Methods: In April–May 2018 (pre‐National Institute for Health and Care Excellence approval of adjuvant therapy), 49 structured interviews were conducted with U.K. health professionals involved in melanoma management (28 oncology, 12 dermatology and 9 surgery) from 34 geographically dispersed National Health Service Trusts (1–6 respondents/Trust). Results: Respondents expect to see a median of 5 (range 1–35) patients/month eligible for adjuvant therapy. Currently, 31 (63%) respondents include standardised BRAFV600 mutation testing for primary melanoma in their local guidelines; 30 (61%) respondents are from centres offering sentinel lymph node biopsy (SLNB) on‐site after excision of melanoma from the trunk/limbs; 21 (43%) after excision of head/neck melanoma. Referral for SLNB (if not performed on site) is not always offered. With systemic adjuvant treatments becoming routinely available, respondents expect oncology involvement in patient care to increase considerably. Significant impacts are predicted on staffing, training, commissioning, service structure, local guidelines and patient psychological support requirements. Conclusion: The routine availability of systemic adjuvant melanoma treatments is expected to have wide‐ranging implications for the commissioning, organisation and delivery of melanoma services. [ABSTRACT FROM AUTHOR]