A Preliminary Phenomenological Exploration of Experiences of the Empty Pelvis Syndrome Derived From a Modified-Delphi: The Price of Survival Following Pelvic Exenteration for Advanced Pelvic Cancer.

OBJECTIVE: The empty pelvis syndrome (EPS) is common after pelvic exenteration (PE), causing fluid collections, bowel obstruction, perineal sinuses, and fistulas. The best approach to fill the pelvis to mitigate this remains controversial, and the impact of EPS on health-related quality of life (HrQoL) is unknown. This study is the first to begin to explore lived-experiences of EPS complications. METHODS: Unstructured EPS virtual focus group meetings were conducted with a convenience sample of patients who underwent PE, as an extension of a modified-Delphi study. Interpretative phenomenological analysis was conducted on verbatim transcripts to generate group experiential themes. RESULTS: Twelve patients (eight UK, one Dutch, and three Belgian) participated in four focus groups. Eight EPS complications were reported, (two pelvic collections, five chronic perineal sinuses, and one bowel obstruction). Group experiential themes were 'Out of Options', depicting patients forced to accept complications or limited survival; 'The New Normal', with EPS potentially delaying adaptation to post-PE HrQoL; 'Information Influencing Adaptation,' emphasising the significance of patients understanding EPS to cope with its effects; and 'Symptoms,' reporting manifestations of EPS, the resultant physical limitations, and an intangible feeling that patients lost part of themselves. CONCLUSIONS: EPS may influence patient decision-making, regret, adaptation, and information-seeking. It can cause a variety of unpleasant symptoms and physical limitations, which may include phantom phenomenon. This work supports ongoing purposeful HrQoL research to better define these themes.

The effect of consultations performed by specialised nurses or advanced nurse practitioners on patient and organisational outcomes in patients with complex health conditions: An umbrella review.

BACKGROUND: Policymakers and researchers often suggest that nurses may play a crucial role in addressing the evolving needs of patients with complex conditions, by taking on advanced roles and providing nursing consultations. Nursing consultations vary widely across settings and countries, and their activities range from complementing to substituting traditional physician-led consultations or usual care. OBJECTIVE: This study was aimed at describing the effects of nursing consultations with patients with complex conditions in any setting on patient outcomes (quality of life, physical status, psychosocial health, health behaviour, medication adherence, mortality, anthropometric and physiological outcomes, and patient satisfaction) and organisational outcomes (health resource use and costs). DESIGN: Umbrella review. METHODS: We followed the Joanna Briggs Institute method for umbrella reviews. We searched PubMed, Embase, Cochrane Database of Systematic Reviews and CINAHL to identify relevant articles published in English, Dutch, French, Spanish or German between January 2013 and February 2023. We included systematic literature reviews, with or without meta-analyses, that included randomised controlled trials conducted in high-income countries. Reviews were eligible if they pertained to consultations led by specialised nurses or advanced nurse practitioners. Article selection, data extraction and quality appraisal were performed independently by at least two reviewers. RESULTS: We included 50 systematic reviews based on 473 unique trials. For all patient outcomes, nursing consultations achieved effects at least equivalent to those of physician-led consultations or usual care (i.e., non-inferiority). For quality of life, health behaviour, medication adherence, mortality and patient satisfaction, more than half the meta-analyses found statistically significant effects in favour of nursing consultations (i.e., superiority). Cost results must be interpreted with caution, because very few and heterogeneous cost-related data were extracted, and the methodological quality of the cost analyses was questionable. Narrative syntheses confirmed the overall conclusions of the meta-analyses. CONCLUSIONS: The effects of nursing consultations on patients with complex health conditions across healthcare settings appear to be at least similar to physician-led consultations or usual care. Nursing consultations appear to be more effective than physician-led consultations or usual care in terms of quality of life, health behaviour, mortality, patient satisfaction and medication adherence. Further analysis of the primary data is necessary to determine the patient populations and settings in which nursing consultations are most effective. Moderate study quality, diversity amongst and within systematic reviews, and quality of reporting hamper the strength of the findings.

The Role of Researcher for Advanced Practice Nurses in Oncology: Challenges and Lessons Learned.

OBJECTIVES: To reflect on current practice analyses regarding the role of advanced practice nurse (APN) researcher in oncology, and report on the challenges that were faced and lessons we have learned when intensively working with APNs on doing research within the domain of oncology. METHODS: Discussions with APNs supervised by or who collaborated with academics in nursing science during the past 10 years on doing research within the domain of oncology. RESULTS: Several misconceptions exist regarding the role of APNs as researchers. During the research process, APNs are confronted with a wide range of topics based on evidence gaps and unmet needs, challenges linked to specific research designs, and ethical issues. APNs also face challenges related to the dissemination of research. This step in the research process is often overlooked due to APNs' lack of time, limited financial resources, insufficient support for academic writing, or lower priority for APNs and other healthcare providers. CONCLUSION: The APN role of researcher in oncology is fundamental for the advancement of oncology nursing care, implementation of evidence-based practice and innovations in oncology patient care, and further development of the nursing profession and nursing science. Participation in research is considered a main function that differentiates APNs from nurses in other clinical roles, such as specialized nurses. By embracing the role of researcher, oncology APNs can achieve professional growth that will stimulate them as an APN, open new opportunities, and keep them challenged. IMPLICATIONS FOR NURSING PRACTICE: In addition to APN, organizational and structural related factors, support by relevant stakeholders, partnering with (nursing) research units and professional and patient organizations, and dedicated time for research can positively influence uptake of the APN researcher role.

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.

How much do we know about nursing care delivery models in a hospital setting? A mapping review.

To deal with the upcoming challenges and complexity of the nursing profession, it is deemed important to reflect on our current organization of care. However, before starting to rethink the organization of nursing care, an overview of important elements concerning nursing care organization, more specifically nursing models, is necessary. The aim of this study was to conduct a mapping review, accompanied by an evidence map to map the existing literature, to map the field of knowledge on a meta-level and to identify current research gaps concerning nursing models in a hospital setting. Next to nursing models, two other organizational correlates seem to be of importance when looking at the organization of nursing care: nurse staffing and skill mix. Although it seems that in recent research, the theoretical focus on the organization of nursing care has been left behind, the increasingly complex healthcare environment might gain from the use of nursing theory, or in this case, care delivery models. As almost no fundamental studies have been done toward the combination of care delivery models, nurse staffing, and skill mix, those elements should be taken into account to fully capture the organization of nursing care in future research.

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.

An Overview of the Fundamentals of Data Management, Analysis, and Interpretation in Quantitative Research.

OBJECTIVES: To provide an overview of three consecutive stages involved in the processing of quantitative research data (ie, data management, analysis, and interpretation) with the aid of practical examples to foster enhanced understanding. DATA SOURCES: Published scientific articles, research textbooks, and expert advice were used. CONCLUSION: Typically, a considerable amount of numerical research data is collected that require analysis. On entry into a data set, data must be carefully checked for errors and missing values, and then variables must be defined and coded as part of data management. Quantitative data analysis involves the use of statistics. Descriptive statistics help summarize the variables in a data set to show what is typical for a sample. Measures of central tendency (ie, mean, median, mode), measures of spread (standard deviation), and parameter estimation measures (confidence intervals) may be calculated. Inferential statistics aid in testing hypotheses about whether or not a hypothesized effect, relationship, or difference is likely true. Inferential statistical tests produce a value for probability, the P value. The P value informs about whether an effect, relationship, or difference might exist in reality. Crucially, it must be accompanied by a measure of magnitude (effect size) to help interpret how small or large this effect, relationship, or difference is. Effect sizes provide key information for clinical decision-making in health care. IMPLICATIONS FOR NURSING PRACTICE: Developing capacity in the management, analysis, and interpretation of quantitative research data can have a multifaceted impact in enhancing nurses' confidence in understanding, evaluating, and applying quantitative evidence in cancer nursing practice.

Cancer nursing research priorities: A rapid review.

PURPOSE: Identifying cancer nursing research priorities is central to influencing the direction of cancer care research. The aim of this rapid review was to explore research priorities identified by oncology nurses for cancer care delivery between 2019 and 2022. METHODS: The Preferred Reporting Items for Systematic Reviews and Meta-Analysis informed the design of the rapid review. MEDLINE, CINAHL, PUBMED, Web of Science, and Cochrane databases were searched for studies published between December 1st, 2018, and September 30th, 2022. This timeframe was chosen to account for the latest relevant evidence synthesis, as well as changes in cancer care necessitated by the COVID-19 pandemic. The Quality Assessment of Diverse Studies tool was used to appraise quality. RESULTS: Four studies met the inclusion criteria. Many of the research priorities identified were influenced by the COVID-19 pandemic. The top cancer nursing research priority identified was the role of technology in improving patient and caregiver symptoms and health outcomes. Other most prevalent research priorities were focused on symptom management, culturally sensitive palliative and psychosocial care, early/integrated palliative care, financial toxicity, modifiable risk factors related to social determinants of health, public and patient involvement in research, and oncology nurses' well-being and scope of practice. CONCLUSION: The findings indicate a need to steer a strategic programme of cancer nursing research towards digitalisation in cancer care to meet the current needs of people living with cancer and their caregivers. However, cancer nurses' burnout, staff shortages and disparities in specialist education will hinder the implementation of certain models of care.

How to Write a Comprehensive and Informative Research Abstract.

OBJECTIVES: This article provides practical guidance on developing a comprehensible abstract, including those required for funding applications, conferences, and publication. In addition, we discuss and demonstrate the practicalities of editing and revising an abstract for conference or peer review and identify emerging formats that may be more relevant to nurses and researchers. DATA SOURCES: This article has been informed by literature and the coauthors' respective experiences of preparing and reviewing abstracts for publication and conference presentation. CONCLUSION: Abstracts are a valuable tool to communicate the most important elements of the methods and results of a research project for a conference, manuscript, or even a research funding application. However, abstracts may often be an overlooked part of the dissemination process. An abstract determines whether or not a piece of research is relevant for presentation at a conference or valuable enough to be considered for peer review and subsequent publication. A strong and clearly written abstract positively predisposes reviewers of grant applications. IMPLICATIONS FOR NURSING PRACTICE: Writing an abstract is arguably the most challenging component of academic writing, summarizing the results of a substantive research project in three to five sentences and positioning them concisely within the background and implications for future practice, policy, and research. A well-written abstract is clear, concise, and critical and requires time and revision to ensure success.

Intervention pathways for low anterior resection syndrome after sphincter-saving rectal cancer surgery: A systematic scoping review.

AIM: Low anterior resection syndrome (LARS) has a large impact on patients' quality of life. Several heterogeneous intervention pathways are suggested in the literature. The steps and timing of the different steps in the pathways are unclear. This systematic scoping review aims to map the range of intervention pathways for LARS after sphincter-saving rectal cancer surgery. METHODS: A search was undertaken on four databases (CINAHL, EMBASE, PubMed, and Web of Science). Any type of paper describing intervention pathways for patients with LARS following sphincter-saving surgery was included. Excluded were patients with a stoma, no full paper, no intervention pathway and not being written in English or Dutch. The review was registered with Open Science Framework (10.17605/OSF.IO/JB5H8). Narrative synthesis of the results was performed by charting and summarising key results. RESULTS: A total of 373 records were screened and 12 papers were included. There was a high variability among the intervention pathways, including which patients should be included. The number of pathway steps ranged from 2-6. Most intervention pathways were treatment-led. Intervention options ranged from conservative measures to a permanent stoma. Pathway flow was highly variable and sometimes not well described, with different or no timings provided for the start, progression, or end of the pathways. Three studies discussed the use of a nurse to coordinate the pathway. CONCLUSION: This systematic scoping review shows that despite similarities in treatment options there are variations in which treatments are included, when treatments should be instigated, and even which patients should be treated.

Information and counselling needs of patients with major low anterior resection syndrome: A qualitative study.

AIMS AND OBJECTIVES: The aim was to explore the information and counselling needs of rectal cancer survivors confronted with major low anterior resection syndrome. BACKGROUND: Rectal cancer survivors are often confronted with bowel problems after surgery. This is called low anterior resection syndrome. Patients are unsure what to expect after treatment and healthcare professionals often underestimate the impact of low anterior resection syndrome on patients' lives. DESIGN: A qualitative study with a grounded theory approach was conducted. METHODS: Patients were recruited between 2017 and 2019 in three hospitals, and a call was distributed in two patients' organisations. Semi-structured interviews with patients confronted with major low anterior resection syndrome were performed. An iterative process between data collection and data analysis was used. Data analysis was done using the constant comparative method, and investigators' triangulation was applied. Qualitative data were reported following COREQ guidelines. The study was registered at Clinicaltrials.gov NCT04896879. RESULTS: A total of 28 patients were interviewed until theoretical data saturation. Before surgery patients' need for information varied according to their individual coping mechanisms. Some patients required information before surgery, while others considered this too overwhelming. When confronted with LARS, patients desired that healthcare professionals recognised its impact and clarified its expected evolution. A proactive counselling with an easy accessible and approachable healthcare professional was beneficial. CONCLUSION: Patients expressed several needs regarding the information before rectal cancer surgery and counselling of low anterior resection syndrome after surgery. RELEVANCE TO CLINICAL PRACTICE: Better knowledge and understanding of major low anterior resection syndrome and its challenges by healthcare professionals are crucial. Especially the impact on quality of life is significant for patients and underestimated by healthcare professionals. Information before surgery and counselling when confronted with major low anterior resection syndrome should be optimised and tailored to patients' needs.

Quality of Life after Minimally Invasive Esophagectomy: A Cross-Sectional Study.

INTRODUCTION: Surgery remains essential in the curative treatment of esophageal cancer (EC), but it is known for its high morbidity and impaired health-related QoL. Minimally invasive esophagectomy (MIE) was introduced to reduce surgical trauma and improve QoL. METHODS: This cross-sectional study aimed to evaluate long-term HRQoL after MIE in comparison with the general population. HRQoL assessment was based on three questionnaires: the European Organisation for Research and Treatment of Cancer (EORTC) Core 30 (QLQ-C30, version 3), the EORTC QLQ Oesophago Gastric 25 (QLQ-OG25), and the Supportive Care Needs Survey-Short Form 34 (SCNS-SF34). Results were compared to a healthy reference population. RESULTS: One hundred and forty eligible MIE patients were identified, of whom met the inclusion criteria, and 49 completed all questionnaires. Patients reported a significantly better mean score on the global health status and QoL than the healthy reference population (71.5 ± 15.1 vs. 66.1 ± 21.7; p = 0.016). However, patients scored significantly worse about functioning (physical, role, and social) (p < 0.05), fatigue (p = 0.021), eating, dysphagia, pain and discomfort, reflux, appetite loss, weight loss, coughing, and taste (p < 0.001). DISCUSSION/CONCLUSION: EC survivors can reach a high global health status and QoL at least 1 year after MIE, despite long-term functional, nutritional, and gastrointestinal complaints. Patients provided written informed consent, and the study protocol was approved by the Ethics Committee of Ghent University Hospital (identifier: ID B670201940737).

Experiences of patients with cancer and their relatives confronted with COVID-19 related delay or change in care: A qualitative study.

AIMS: To provide in-depth insight into how patients and their relatives experienced change or delay in cancer treatment and care due to COVID-19. DESIGN: A qualitative study including semi-structured interviews with patients with cancer and their relatives. METHODS: Between July and October 2020, 42 patients who were confronted with a change or delay in cancer treatment or care, and 11 relatives were interviewed. Data collection and analysis were performed according to the most important methods of grounded theory, including iterative data collection and analysis, theoretical sampling, constant comparative analysis and theoretical sensitivity. RESULTS: This study shows that patients with cancer and relatives experienced paradoxical feelings when confronted with change or delay in treatment or care due to COVID-19. Patients and relatives felt relieved (e.g. less risk of infection), but were also concerned and anxious (e.g. fear for progression, fear for more side effects). Due to these ambivalent feelings, it was difficult for patients and relatives to cope with the change or delay in treatment or care, both when this was decided by the physician and by themselves. In combination with the general impact of COVID-19 on their daily lives, the change or delay led to additional distress. The interviews showed that exploring the meaning of change or delay of care for patients and their relatives and discussing what would help them might prevent or relieve distress. CONCLUSION: The findings of our study show that COVID-19 and the associated delay or changes in cancer treatment and care had a major impact on the well-being of patients and their relatives. Person-oriented care is even more important during (emergency) situations in which care might be changed or delayed.

Interprofessional perspectives on care for patients with low anterior resection syndrome: A qualitative study.

AIM: Many patients are confronted with low anterior resection syndrome after rectal surgery. The perspectives of both healthcare professionals and patients on the impact of bowel problems may differ. This study aimed to explore experiences of healthcare professionals on how to provide, organise and optimise care for patients with low anterior resection syndrome from an interprofessional perspective. METHODS: An explorative qualitative design was used. Healthcare professionals were recruited in October 2018 in one general teaching hospital and one university hospital. Twenty one healthcare professionals from different professions caring for patients with low anterior resection syndrome were included in three focus group interviews. RESULTS: Healthcare professionals confirmed a lack of focus on patients who are confronted with low anterior resection syndrome and stated a need for a standardised approach of care. Additionally, three levels for care optimization emerged from the data: information before surgery with strong emphasis on the timing of informing, counselling of patients when confronted with low anterior resection syndrome and organisation of care. CONCLUSIONS: Healthcare professionals find it important to adopt the moment and amount of information to the coping mechanism and timing of the trajectory. Counselling and follow-up of patients with LARS should be organised proactively and should not remain restricted to pharmacological and nutritional advice. A possible strategy is to develop and implement late effects nurse-led clinics coordinated by the clinical nurse specialist.

[Borderline Personality Disorder in the Somatic Hospital Setting]. / Die Borderline-Persönlichkeitsstörung im somatischen Behandlungssetting.

Borderline Personality Disorder in the Somatic Hospital Setting Abstract. The Borderline Personality Disorder is a common mental illness characterized by emotional instability, interactional difficulties, an unstable sense of self and impulsive behaviour which is often self-destructive. Since these problems frequently occur in the doctor-patient relationship, patients might be regarded as "difficult" or even manipulative. This may lead to stigmatization and medical undertreatment when due to common mental and somatic comorbidities the condition requires thorough high-standard medical care. Whereas the core symptoms of BPD are well treatable by specific evidence-based psychotherapy, pharmacological interventions are less effective and should be restricted to crisis management. Through a better understanding of the disorder, proactive communication with all involved care providers and a collaborative doctor-patient relationship providing support and boundaries simultaneously the quality of medical care can be improved with long-lasting effects.

Patient-reported outcomes after pelvic exenteration for colorectal cancer: A systematic review.

AIM: Pelvic exenteration (PE) carries high morbidity. Our aim was to analyse the use of patient-reported outcome measures (PROMs) in PE patients. METHOD: Search strategies were protocolized and registered in PROSPERO. PubMed, Embase, Cochrane Library, Google Scholar, Web of Science and ClinicalTrials.gov were searched with the terms 'patient reported outcomes', 'pelvic exenteration' and 'colorectal cancer'. Studies published after 1980 reporting on PROMs for at least 10 PE patients were considered. Study selection, data extraction, rating of certainty of evidence (GRADE) and risk of bias (ROBINS-I) were performed independently by two reviewers. RESULTS: Nineteen of 173 studies were included (13 retrospective, six prospective). All studies were low to very low quality, with an overall moderate/serious risk of bias. Studies included data on 878 patients with locally advanced rectal cancer (n = 344), recurrent rectal cancer (n = 411) or cancer of unknown type (n = 123). Thirteen studies used validated questionnaires, four used non-validated measures and two used both. Questionnaires included the Functional Assessment of Cancer Therapy-Colorectal questionnaire (n = 6), Short Form Health Survey (n = 6), European Organization for Research and Treatment for Cancer (EORTC) Quality of Life Questionnaire C30 (n = 6), EORTC-CR38 (n = 4), EORTC-BLM30 (n = 1), Brief Pain Inventory (n = 2), Short Form 12 (n = 1), Assessment of Quality of Life (n = 1), Short Form Six-Dimension (n = 1), the Memorial Sloan Kettering Cancer Center Sphincter Function Scale (n = 1), the Cleveland Global Quality of Life (n = 1) or other (n = 4). Timing varied between studies. CONCLUSIONS: Whilst the use of validated questionnaires increased over time, this study shows that there is a need for uniform use and timing of PROMs to enable multicentre studies.

Long-term survival after multimodality therapy including surgery for metastatic esophageal cancer.

BACKGROUND AND OBJECTIVES: Esophageal cancer (EC) remains an aggressive disease with a poor survival. Management of metastatic EC is limited to palliative chemotherapy (CT). Scientific contributions regarding the role of surgery are scarce and controversial. We analysed outcome of surgically treated metastatic EC patients. METHODS: We retrospectively identified surgically treated metastatic EC patients from our esophagectomy database. The aim of this study was to evaluate surgical complications, pathological response, oncological outcome and mean survival of these aggressively treated stage IV cancer patients. RESULTS: Twelve stage IV patients with disease presentation limited to outfield lymph node (LN) and/or liver metastasis were treated with an aggressive multimodality treatment including surgery. Mean age was 58 years (75% male, 75% Adenocarcinomas). Median postoperative hospital stay was 15 d. Radiological anastomotic leakage occurred in one patient. In hospital, mortality was nil. Complete resection was achieved in all but one. Metastatic recurrence occurred in 64% of R0 resected patients. At date of censoring, after a median follow-up of 22 months, 50% of the surgical resected patients are still alive and 33% are free of disease recurrence. Kaplan-Meier curves show a possibility to long-term survival after aggressive multimodality therapy including surgery. CONCLUSIONS: In selected metastatic EC patients, multimodality treatment including surgery has an acceptable surgical outcome with a potentially long-term survival.