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.

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.

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.

Living with or beyond lymphoma: A rapid review of the unmet needs of lymphoma survivors.

OBJECTIVE: To establish an understanding of the unmet needs of people living with or beyond a lymphoma diagnosis. Survivors of lymphoma are at increased risk of unmet needs due to cancer, treatment-related toxicities and extended survivorship. Despite the rapidly growing numbers of lymphoma survivors, their needs and research priorities are underserved and undervalued, therefore left largely unaddressed. METHODS: A rapid review method and reflexive thematic analysis approach assimilated current knowledge. Eligibility criteria included quantitative, qualitative, or mixed approaches employing cross-sectional, longitudinal, cohort or review designs focused on the needs of adult lymphoma survivors (any subtype or stage of disease). Five databases: CINAHL, EMBASE, Medline, PsycInfo and Scopus, were systematically searched. RESULTS: Forty-seven studies met the inclusion criteria via a stringent screening process facilitated by NVivo. Almost 60 per cent of articles were published within the last five years and investigated a homogenous lymphoma sample. Most studies employed quantitative approaches (77%) and cross-sectional designs (67%). Studies were of high methodological quality. Five major themes were identified: disparity in health service delivery, the psychological impact of cancer, impactful and debilitating concerns, the monetary cost of survival and insufficient provision of survivorship information. A meta-analytical approach was not feasible due to the breadth of methodologies of included studies. CONCLUSIONS: This review shows that lymphoma survivors experience a myriad of unmet needs across multiple domains, reinforcing the need for lymphoma-specific research. However, more research is needed to advance and achieve informed decision-making relating to survivorship care, placing due attention to the needs and research priorities of lymphoma survivors.

The physical, psychological and social experiences of alopecia among women receiving chemotherapy: An integrative literature review.

PURPOSE: To conduct an integrative scoping review of the physical, psychological and social experiences of women who have experienced chemotherapy-induced alopecia (CIA). METHOD: An integrative review was undertaken. A systematic search of MEDLINE, CINAHL and PsycInfo identified 23 studies meeting the inclusion criteria. Data relating to women's experiences of alopecia was extracted and synthesized thematically. RESULTS: Four analytical themes were formed; 'the physical and psychological effect of alopecia', 'more than the loss of hair', 'the complexities of a visual cancer identity' and 'coping with new internal and external relationships'. CIA involves a public and private representation of illness which disrupts women's identity and their acceptance in public, yet this is a highly individualised experience. There is disparity in current evidence regarding the experience of CIA for women among older age groups, with rarer forms of cancer, haematological malignancies and those receiving palliative care or targeted treatment modalities. CONCLUSIONS: This review highlights the continued pervasive psychosocial implications arising from CIA, however this is not exclusive to scalp hair as alopecia from the face and body has also been found to require adaptation and effective coping. Limited knowledge exists on the experience of alopecia induced by treatment for haematological cancers and rarer-tumour groups and emerging systemic anti-cancer treatment modalities. Healthcare professionals must endeavour to support and discuss the potential risks of alopecia, and provide patients with an opportunity to voice their fears, concerns, and experiences of CIA. Future research should incorporate the identified underserved populations and the experience of newer therapies.