Hereditary Cancer Syndrome Carriers: Feeling Left in the Corner.

OBJECTIVES: There is limited evidence on health promotion interventions in people with hereditary cancer syndromes or on their main sources of support and information. This study aimed to understand these patients' experiences and needs, including their information needs, their views on prevention and mental health, and the support they want from nurses. METHODS: This qualitative study included 22 people (8 previvors and 14 survivors) with hereditary breast and ovarian syndrome or Lynch syndrome from 10 European countries. Participants underwent individual semi-structured interviews, which were recorded and transcribed for reflexive thematic analysis. The patient and public involvement panel provided input on study design and thematic analysis. RESULTS: Patient experiences were similar regardless of the country and access to testing and screening. Participants reported receiving little information on the importance of health behaviors for cancer risk and expressed their wish to be followed by cancer professionals. They felt compelled to seek support and information from the internet and patient groups. The main themes identified were: (unmet) informational and support needs, seeing life in a different way, and limitations of health care providers. CONCLUSIONS: People with hereditary cancer syndromes need professionals to be involved in their long-term management and to provide reliable information. As genomics are increasingly integrated in oncology, the need for professionals to support these populations will increase. IMPLICATIONS FOR NURSING PRACTICE: Nurses are crucial for promoting self-management and advocating for patient decision-making; however, they need skills and knowledge to do so. There is a need for nurses to get more involved in understanding hereditary cancer syndromes and an opportunity to take the lead in the care of these people.

Understanding communication between patients and healthcare professionals regarding comprehensive biomarker testing in precision oncology: A scoping review.

BACKGROUND: Precision oncology, using comprehensive biomarker testing (cBT) to inform individual cancer diagnosis, prognosis and treatment, includes increasingly complex technology and clinical data sets. People impacted by cancer (patients and caregivers) and healthcare professionals (HCPs) face distinct challenges in navigating the cBT and personalized treatment landscape. This review summarizes evidence regarding cBT-related communication between people impacted by cancer and HCPs and identifies important avenues for future research in precision oncology. METHODS: A scoping review was conducted using records published in PubMed during January 2017-August 2022, focusing on the breadth of topics on patient-HCP communication and knowledge resources used by HCPs as guidance in cBT-related communication. Data were extracted from records meeting inclusion criteria, and findings were summarized according to main topics. RESULTS: The search identified 287 unique records and data were extracted from 42 records, including nine from expert input. Most records originated from the United States included patients with different types of cancer, and oncologists were the main HCPs. Patients' motivation for undergoing cBT and receiving results was generally high in different settings. However, patients' understanding of cBT-related concepts was limited, and their knowledge and information preferences changed based on cBT implications and significance to family members. HCPs were valued by patients as a trusted source of information. Limited evidence was available on HCPs' information-seeking behavior and factors influencing cBT-related knowledge and confidence, often self-reported as insufficient. CONCLUSIONS: Patient education by knowledgeable and confident HCPs, information management and a caring patient-HCP relationship communicating continuity of care regardless of cBT results are crucial to empower patients and shared decision-making in precision oncology. More data on the process and structure of cBT-related communication, distinction between and characterization of different timepoints of patient-HCP interactions are needed.

Early Recognition and Management of Side Effects Related to Systemic Anticancer Therapy for Advanced Breast Cancer.

OBJECTIVES: Advances in science and technology have meant there are numerous treatment options available for people with advanced breast cancer (ABC). However, each therapeutic approach can cause side effects or adverse events, which can significantly affect the person's quality of life, overall well-being, and, in some instances, safety. This report presents an overview of the common side effects of systemic anticancer therapy and ways to manage them. DATA SOURCES: Data sources include peer-reviewed articles sourced in electronic databases and national and international best practice guidelines (ESMO, ASCO, and MASCC guidelines). CONCLUSION: Systemic anticancer therapies have side effects that healthcare professionals need to know about to monitor and manage them in early stages. Nurses play an important role in patient education, early identification, monitoring, and management of treatment side effects. IMPLICATIONS FOR NURSING PRACTICE: People with ABC face many challenges during their treatment journey. Oncology nurses, specialist nurses, and nurse practitioners can be of support by providing preventive measures and side effects management at an early stage. Nurses need to have a good understanding of toxicity management but also advanced tumor-specific cancer knowledge of the different subtypes of ABC and holistic assessment skills. They are also key to providing support and enhancing self-management and early recognition of side effects.

Patient and public involvement in research: Reflections and experiences of doctoral cancer nurse researchers in Europe.

PURPOSE: Early career researchers lack guidance about patient and public involvement (PPI). The overall aim of the study was to explore the knowledge and experiences of using PPI in research among doctoral students who are registered nurses. METHODS: This qualitative study included findings generated from reflective essays and focus groups involving ten registered cancer nurses who are undertaking doctoral research. The study has two stages of data collection. Participants initially wrote a reflective essay using a set of guiding questions to structure a response which was subsequently analysed. Two focus groups were then conducted to provide further insight into the themes identified in the reflective essays. Reflective thematic analysis was used to identify, name, and define the final themes. RESULTS: There were ten participants from seven countries and were at various stages of their doctoral study. Analysis of data from reflective essays (n = 10) and focus groups (n = 2) identified four themes namely, (a) evolving recognition and appreciation of PPI, (b) embracing PPI and impact on doctoral studies, (c) the influence of the research environment, and (d) the need to empower doctoral students to integrate PPI in their research journey. CONCLUSION: Participants reported differing experiences of PPI awareness showing disparity in guidance about PPI for junior researchers across Europe. We recommend provision of early PPI training for doctoral students to support and encourage involvement of patients and the public in their research. Opportunities for sharing PPI experiences to help improve PPI culture in research environments that support doctoral students should be explored.

Like Frying Multiple Eggs in One Pan: a Qualitative Study Exploring the Understanding of Inter-speciality Training in Cancer Care.

H igh-quality cancer care is a key priority worldwide. Caring for people affected by cancer requires a range of specific knowledge, skills and experience to deliver the complex care regimens both within the hospital and within the community environment. In June 2022, the European Cancer Organisation along with 33 European cancer societies began working together to develop a curriculum for inter-speciality training for healthcare professionals across Europe. As part of the project, this research consisted of a qualitative survey distributed to the European Union societies via email. The aim of this paper is to disseminate the qualitative findings from healthcare professionals across Europe. Questionnaires were sent out to a convenience sample of 219 healthcare professionals and patient advocates with a response rate of 55% (n = 115). The findings identified that there were four key themes: 'What is inter-speciality training?', 'Barriers and challenges', 'Support throughout the cancer journey' and 'New ways of working'. These results are part of a larger needs analysis and scoping review to inform the development of a core competency framework which will be part of an inter-speciality curriculum for specialist cancer doctors, nurses and other healthcare professionals across Europe. Healthcare professionals will be able to access education and training through the virtual learning environment and workshops and by clinical rotations to other specialties.

A rapid review of patient-reported outcomes investigated in the context of advanced renal cell cancer or advanced hepatocellular cancer.

BACKGROUND: Patient-reported outcomes (PROs) are key indicators of health status and functioning, coming directly from the patient. Comprehensive monitoring of PROs enables implementation of person-centred care. Currently, the PROs that patients with advanced renal cell carcinoma (RCC) or hepatocellular carcinoma (HCC) consider of greatest importance remains unknown. METHODS: A rapid literature review was carried out to identify PROs commonly reported in clinical studies of patients with advanced RCC/HCC. We searched MEDLINE, CINAHL & PsycInfo for relevant peer-reviewed publications in the period from 2000 to 2021. Pre-specified selection criteria were applied to all retrieved records. Findings were integrated into a narrative synthesis. RESULTS: Eighty-one studies met our selection criteria and were retained. Most research was on advanced RCC (n = 64, 79%); 46 studies (57%) were drug trials. Only twenty-six studies (32%) employed PROs as their primary endpoint. Most PROs concerned physical symptoms (45% RCC, 54% HCC) and emotional wellbeing (19% RCC, 16% HCC). The most common outcome measured was quality of life (65% of the total), followed by fatigue (62%) and pain (54%). Whether selection of these PROs was patient-driven was not reported. CONCLUSIONS: A wide range of PROs were assessed. Deficits in PROs often cause patients to seek out help; however, which PROs matter the most to people with advanced RCC/HCC must be further clarified. Targeting, monitoring, and responding to the 'right' PROs can enhance provision of person-centred care in advanced RCC/HCC and augment the clinical efficacy of established and emerging targeted therapies.

Lifestyle Behavior Interventions for Preventing Cancer in Adults with Inherited Cancer Syndromes: Systematic Review.

(1) Background: The link between lifestyle behaviors and cancer risk is well established, which is important for people with personal/family history or genetic susceptibility. Genetic testing is not sufficient motivation to prompt healthier lifestyle behaviors. This systematic review aims to describe and assess interventions for promoting healthy behaviors in people at high risk of cancer. (2) Methods: The review was performed according to PRISMA guidelines using search terms related to hereditary cancer and health education to identify studies indexed in: CINAHL, MEDLINE, PubMed, Cochrane Library, Scopus, and Joanna Briggs, and published from January 2010 to July 2022. (3) Results: The search yielded 1558 initial records; four randomized controlled trials were eligible. Three included patients with and without a personal history of cancer who were at increased risk of cancer due to inherited cancer syndromes, and one included people undergoing genetic testing due to family history. Interventions targeted diet, physical activity, and alcohol. (4) Conclusions: There is a paucity of research on interventions for promoting healthy lifestyle behaviors in people with a high risk of cancer. Interventions produced positive short-term results, but there was no evidence that behavioral modifications were sustained over time. All healthcare professionals can actively promote healthy behaviors that may prevent cancer.

Educational Programme for Cancer Nurses in Genetics, Health Behaviors and Cancer Prevention: A Multidisciplinary Consensus Study.

(1) Background: Most common hereditary cancers in Europe have been associated with lifestyle behaviors, and people affected are lacking follow up care. However, access to education programmes to increase knowledge on cancer and genetics and promote healthy lifestyle behaviors in people at high risk of cancer is scarce. This affects the quality of care of people with a hereditary risk of cancer. This study aimed to reach a multidisciplinary consensus on topics and competencies and competencies that cancer nurses need in relation to cancer, genetics, and health promotion. (2) Methods: A two-round online Delphi study was undertaken. Experts in cancer and genetics were asked to assess the relevance of eighteen items and to suggest additional terms. Consensus was defined as an overall agreement of at least 75%. (3) Results: A total of 74 multiprofessional experts from all around the world participated in this study including healthcare professionals working in genetics (39%), researchers in cancer and genetics (31%) and healthcare professionals with cancer patients (30%). Thirteen additional items were proposed. A total of thirty-one items reached consensus. (4) Conclusions: This multidisciplinary consensus study provide the essential elements to build an educational programme to increase cancer nurses' skills to support the complex care of people living with a higher risk of cancer including addressing lifestyle behaviors. All professionals highlighted the importance of cancer nurses increasing their skills in cancer and genetics.

Advanced breast cancer education for cancer nurses: A systematic review.

BACKGROUND: Access to comprehensive, integrated, multidisciplinary care is one of the most urgent and actionable recommendations of the Advanced Breast Cancer Global Alliance. However, access to specialist breast care units, and specialist breast cancer nurses is variable, influenced by access to specialist education and role recognition. To date, there has not been a synthesis of evidence regarding educational programmes related to advanced breast cancer education for nurses. OBJECTIVES: The aim of this review was to determine the content, mode of delivery, assessment and outcomes of education programmes related to advanced breast cancer for nurses. REVIEW METHODS: A systematic review was undertaken, according to the Joanna Briggs Institute's mixed methods review methodology. DATA SOURCES: MEDLINE, PUBMED, CINAHL, Scopus, PsycInfo, Joanna Briggs Institute, Web of Science and grey literature sources were systematically searched. Eleven publications met the inclusion criteria. Data relating to programme content, mode of delivery, assessment and outcomes were extracted and analysed. RESULTS: This review identifies a limited number of educational programmes within this specialist area of nursing practice. Shortcomings in the development, implementation and evaluation of advanced breast cancer education programmes included limited use of educational standards, theoretical frameworks and patient and public involvement to inform programme development. Evaluation of education programmes related to advanced breast cancer relied predominantly on self-reported learning, with limited consideration of the impacts of education on service delivery, patient experience or quality of care. CONCLUSIONS: Future development of advanced breast cancer education programmes must consider the alignment of programme content and learning outcomes with existing educational and competency standards. Evaluation of educational programmes in this field must endeavour to enhance rigour of methods, incorporating standardised questionnaires, and multiple methods and sources of data to evaluate the broader impacts of advanced breast cancer education for nurses.