Information needs of women with BRCA mutations regarding cancer risk management and decision-making.

PURPOSE: Providing women who have tested positive for a pathogenic variant in BRCA1 or BRCA 2 relevant information can help them to make informed decisions about managing their cancer risk. However, there is a lack of targeted informational support for BRCA positive women specific to the Irish context. The objective of this study is to identify the information needs of women diagnosed with a pathogenic variant in BRCA1 or BRCA 2 regarding cancer risk management and decision-making. METHODS: This is a descriptive qualitative study. Participants were recruited using purposive sampling and included women with a pathogenic variant in BRCA1 or BRCA2 without a history of breast or ovarian cancer. Two focus groups were held with women (n = 16) to enable them to generate ideas and understanding of their shared information needs. In addition, ten individual interviews were conducted to capture the additional perspectives of health care and relevant policy stakeholders. Interviews were analysed using inductive coding (Braun and Clarke, 2006), with NVivo software (Qsr international, 1999). RESULTS: Three main themes were identified, Cancer Risk Management, Receiving Information, and Implications to Health and Wellbeing. BRCA-positive women expressed a need for information about managing their cancer risk. They were particularly concerned with managing the impact of cancer risk-reducing interventions on their psychological and physical health, wellbeing, and family life. Many women felt they had to advocate for themselves to get treatment and receive information. Participants expressed a need for a comprehensive informational resource where all relevant information related to BRCA risk management could be accessed at a single location. CONCLUSION: This study suggests that women diagnosed with a pathogenic variant in BRCA1 or BRCA2 in Ireland need more accessible information about managing their cancer risk, and the impact of a BRCA diagnosis on their family, health and wellbeing. These results will be used to identify relevant content for developing an informational decision aid for Irish women.

Stakeholder perceptions of cervical screening accessibility and attendance in Ireland: a qualitative study.

Organized cervical screening programmes are commonplace in high-income countries. To provide an equitable cervical screening service, it is important to understand who is and is not attending screening and why. Promotion of screening and service improvement is not possible without recognition and identification of the barriers and needs of communities that are less engaged with screening. This study explored stakeholder perceptions of cervical screening attendance and accessibility in Ireland. Semi-structured interviews were conducted with 12 healthcare professionals, policymakers and academics. Interviews were conducted online in 2022. Reflexive thematic analysis was used inductively to generate themes, supported by NVivo. Three themes were developed: (i) getting the right information out the right way, (ii) acceptability and accessibility of screening and (iii) trying to identify and reach the non-attenders. Participants felt public knowledge of cervical screening and human papilloma virus was low and communication strategies were not adequate. Individual, cultural, structural and service-level factors influenced the accessibility and acceptability of screening. Identifying and reaching non-attenders was considered challenging and community outreach could support those less likely to attend screening. Stakeholder perspectives were valuable in understanding the complexities of screening accessibility and attendance from individual to service-level factors. Cultural competency training, inclusive language and visual cues in waiting rooms would support engagement with some populations who may be hesitant to attend screening. Collaboration with community organizations has opportunities to promote screening and understand the needs of those less likely to attend screening.

Decision aids for female BRCA mutation carriers: a scoping review.

OBJECTIVES: Women who inherit a pathogenic BRCA1 or BRCA2 mutation are at substantially higher risk of developing breast and ovarian cancer than average. Several cancer risk management strategies exist to address this increased risk. Decisions about which strategies to choose are complex, personal and multifactorial for these women. Decision aids (DAs) are tools that assist patients in making health-related decisions. The aim of this scoping review was to map evidence relating to the development and testing of patient DAs for cancer unaffected BRCA mutation carriers. DESIGN: Scoping review conducted according to the Joanna Briggs Institute's (JBI's) scoping review methodological framework. DATA SOURCES: MEDLINE, EMBASE, CINAHL, Web of Science. No restrictions applied for language or publication date. A manual search was also performed. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Studies on DAs for cancer risk management designed for or applicable to women with a pathogenic BRCA1 or BRCA2 mutation who are unaffected by breast or ovarian cancer. DATA EXTRACTION AND SYNTHESIS: Data were extracted using a form based on the JBI instrument for extracting details of studies' characteristics and results. Data extraction was performed independently by two reviewers. Extracted data were tabulated. RESULTS: 32 evidence sources relating to development or testing of 21 DAs were included. Four DAs were developed exclusively for cancer unaffected BRCA mutation carriers. Of these, two covered all guideline recommended risk management strategies for this population though only one of these was readily available publicly in its full version. All studies investigating DA effectiveness reported a positive effect of the DA under investigation on at least one of the outcomes evaluated, however only six DAs were tested in randomised controlled trials. CONCLUSION: This scoping review has mapped the landscape of the literature relating to developing and testing, DAs applicable to cancer unaffected BRCA mutation carriers.

Patient-Reported Outcome and Experience Measures in Advanced Nursing Practice: What Are Key Considerations for Implementation and Optimized Use?

OBJECTIVE: To discuss the opportunities and challenges of implementing patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) within advanced practice nursing services in cancer care. METHODS: This discussion paper has been informed by an environmental scan of evidence from systematic reviews and primary studies evaluating the use and implementation of PROMs and PREMs. Literature from the contexts of cancer and chronic disease, including nursing and multidisciplinary supportive care literature, has been included. RESULTS: Advanced practice nurses are well-positioned to evaluate and respond to PROMs and PREMs data; several studies have highlighted improved patient outcomes concerning quality of life, symptom distress, and functional status within nurse-led services. Nevertheless, the implementation of PROMs and PREMs in cancer care and nurse-led services is variable. Previous studies have highlighted implementation challenges, which can hinder comparability and generalizability of PROMs and PREMs instruments. Advanced practice nurses should consider these challenges, including ways to use standardized PROM instruments. Electronic PROMs, while efficient, may exclude individuals at risk of inequity. Complex, lengthy, and frequent administration of PROMs may also overburden people living with or after cancer, with people affected by cancer expressing preference for flexible use in some studies. Therefore, the involvement of people affected by cancer in planning for PROMs/PREMs implementation may overcome this challenge. Finally, organizational considerations in implementation should address financial investments, including initial costs for technology and training and consideration of the operationalization of PROMs within existing infrastructure for the seamless utilization of PROMs data. CONCLUSION: Despite the potential of advanced practice nursing services to enhance patient-reported outcomes and experiences, variability in the implementation of PROMs and PREMs poses challenges. Use of validated measures, electronic or paper-based instruments, and the preferences of people affected by cancer for the use of PROMs and PREMs must be carefully considered in consultation with end users for successful implementation. IMPLICATIONS FOR PRACTICE: In planning for the implementation of PROMs and PREMs within nurse-led services, implementation risks may be mitigated through establishing clear guidelines for their use, investment in the development of the required infrastructure, user education, and rigorous implementation processes, including patient involvement in PROMs/PREMs selection.

Advanced Practice Nursing Titles and Roles in Cancer Care: A Scoping Review.

OBJECTIVES: Advanced practice nursing roles in cancer care are diverse and exist across the cancer care continuum. However, the titles used and the scope of practice differ across countries. This diversity is likely to be misleading to patients and influence nurses' contribution to health care. An understanding of the current state of advanced practice nursing roles in cancer care internationally is needed to inform opportunities for future role development and enhance cancer nursing career pathways. METHODS: This scoping review included a systematic search of four databases: MEDLINE, CINAHL, PsycINFO, and Academic Search Complete. Independent screening for papers meeting the review's inclusion criteria was undertaken using online screening software. Data extraction, coding, and mapping were undertaken in NVivo 12. RESULTS: Of the 13,409 records identified, 108 met the review's inclusion criteria. A variety of roles in cancer care settings were described. The United States and the United Kingdom had the most titles for advanced practice nursing roles. Tumor-specific roles were described and integrated into different phases of the cancer care continuum. Trends in continuing professional development for advanced practice nurses in cancer care included the rise in Fellowship programs in the United States and practice-based education in the United Kingdom. CONCLUSIONS: The differences in advanced practice nursing roles in cancer care allow regional and institutional variation to meet the needs of patient populations and health care system demands. However, a lack of clarity surrounding titles and roles results in confusion and underutilization of these nurses' highly specialized skill sets. IMPLICATIONS FOR NURSING PRACTICE: Incongruence in titles and scope of practice internationally will ultimately result in a merging of roles. There is a need for international agreement on education requirements for advanced practice nursing roles to promote career pathways.

Illuminating the nutrition-related policy-practice gaps in colorectal cancer survivorship.

PURPOSE: Colorectal cancer (CRC) is among the three most commonly diagnosed cancers globally, after breast and lung cancer, with an estimated 2 million new cases each year, comprising ten per cent of all cancers worldwide. CRC has a complex aetiology associated with several nutrition-related risk factors. Cancer survivors frequently report alterations to their dietary habits and nutritional intake, with related adverse impacts on health-related quality of life (QOL). Whilst nutrition-related factors are recognised as survivor priorities and embedded in survivor care policies, dietary support is frequently not the standard of care in practice. METHODS AND RESULTS: In this Commentary, we present details of a critical policy-practice gap for CRC survivors across the spectrum of nutrition care that we have seen growing in the literature, in hospitals, community and private practice. CONCLUSION: As these nutrition concerns can adversely impact QOL and morbidity and mortality risks, we hope to raise awareness of these issues to provide a basis of future work in this area, so that policymakers and clinicians can improve support and outcomes for CRC survivors and their families.

Content comparison of unmet needs self-report measures for lymphoma cancer survivors: A systematic review.

PURPOSE: The increasing recognition of the complex impacts of a cancer diagnosis and its treatment has led to efforts to develop instruments to reflect survivors' needs accurately. However, evidence regarding the content and quality of instruments used to evaluate the unmet needs of lymphoma survivors is lacking. This review aimed to evaluate the psychometric properties and comprehensiveness of available self-report instruments to assess unmet needs and quality of life with adult lymphoma survivors. METHODS: A systematic search of five databases (CINAHL, EMBASE, Medline, PsycInfo and Scopus) was conducted to identify instruments measuring unmet needs or quality of life outcomes. Original articles reporting the instrument's validation or development via citation screening were retrieved and screened against eligibility criteria. An appraisal of the instrument's measurement properties was conducted, guided by the COSMIN methodology and reported in accordance with PRISMA guidelines. A content comparison using the Supportive Care in Cancer Framework was performed. RESULTS: Twelve instruments met the inclusion criteria; only one was explicitly developed for lymphoma (Functional Assessment of Cancer Therapy-Lymphoma). Four instruments focused on the construct of need, and eight focused on quality of life. The psychometric data in the published literature is not comprehensive; there is heterogeneity in their development, content and quality. No included instrument was examined for all COSMIN measurement properties, and methodological quality was variable; all instruments measured at least four domains of need. The emotional domain was reviewed by all instruments (n = 12), and the spiritual and informational domains received the least focus (n = 4 each). CONCLUSION: This review provides a platform for instrument comparison, with suggestions for important factors to consider in systematically selecting unmet needs and quality of life self-report measures for adult lymphoma survivors. Considering the various discrepancies and limitations of the available instruments, using more than one instrument is recommended. In selecting measurement instruments, researchers should consider research objectives, study design, psychometric properties and the pros and cons of using more than one measure. Evaluating the participant burden and feasibility of completing the selected instrument is important for lymphoma survivors, a group burdened by cancer-related fatigue and cognitive impairment.