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Background: There is an often-held assumption that the engagement of clinicians and healthcare organizations in research improves healthcare performance at various levels. Previous reviews found up to 28 studies suggesting a positive association between the engagement of individuals and healthcare organizations in research and improvements in healthcare performance. The current study sought to provide an update. Methods: We updated our existing published systematic review by again addressing the question: Does research engagement (by clinicians and organizations) improve healthcare performance? The search covered the period 1 January 2012 to March 2024, in two phases. First, the formal updated search ran from 1 January 2012 to 31 May 2020, in any healthcare setting or country and focussed on English language publications. In this phase two searches identified 66 901 records. Later, a further check of key journals and citations to identified papers ran from May 2020 to March 2024. In total, 168 papers progressed to full-text appraisal; 62 were identified for inclusion in the update. Then we combined papers from our original and updated reviews. Results: In the combined review, the literature is dominated by papers from the United States (50/95) and mostly drawn from the Global North. Papers cover various clinical fields, with more on cancer than any other field; 86 of the 95 papers report positive results, of which 70 are purely positive and 16 positive/mixed, meaning there are some negative elements (i.e. aspects where there is a lack of healthcare improvement) in their findings. Conclusions: The updated review collates a substantial pool of studies, especially when combined with our original review, which are largely positive in terms of the impact of research engagement on processes of care and patient outcomes. Of the potential engagement mechanisms, the review highlights the important role played by research networks. The review also identifies various papers which consider how far there is a "dose effect" from differing amounts of research engagement. Additional lessons come from analyses of equity issues and negative papers. This review provides further evidence of contributions played by systems level research investments such as research networks on processes of care and patient outcomes. [ABSTRACT FROM AUTHOR]

This paper aims to reply to Somay et al., regarding their comment to a previous paper from our group, titled "Clinical outcomes of teeth adjacent to the site of mandibulotomy or mandibulectomy in patients with head and neck cancer: results from a multidisciplinary mono-institutional head and neck tumor board". The following concerns were addressed: Within the limits of a case series, mandibulectomy might be considered a risk factor for the loss of tooth vitality as well as mandibulotomy. Root canal therapy before surgery on the teeth adjacent to the surgical site could be an appropriate strategy, although in some cased it may involve teeth which are not destinate to have endodontic complications. Dose-volume data of the included teeth were provided: the impact of radiotherapy (RT) as a confounding factor seems not to be as relevant as Somay et al. have pointed out. [ABSTRACT FROM AUTHOR]

Background: After curative surgery for early-stage breast cancer, patients face a decision on whether to undergo surgery alone or to receive one or more adjuvant treatments, which may lower the risk of recurrence. Variations in survival outcomes are often marginal but there are differences in the side effects and other features of the options that patients may value differently. Hence, the patient's values and preferences are critical in determining what option to choose. It is well-researched that the use of shared decision making and patient decision aids can support this choice in a discussion between patient and clinician. However, it is still to be investigated what impact the timing and format of the patient decision aid have on shared decision making outcomes. In this trial, we aim to investigate the impact of a digital pre-consult compared to a paper-based in-consult patient decision aid on patients' involvement in shared decision making, decisional conflict and preparedness to make a decision. Methods: The study is a randomised controlled trial with 204 patients at two Danish oncology outpatient clinics. Eligible patients are newly diagnosed with early-stage breast cancer and offered adjuvant treatments after curative surgery to lower the risk of recurrence. Participants will be randomised to receive either an in-consult paper-based patient decision aid or a pre-consult digital patient decision aid. Data collection includes patient and clinician-reported outcomes as well as observer-reported shared decision making based on audio recordings of the consultation. The primary outcome is the extent to which patients are engaged in a shared decision making process reported by the patient. Secondary aims include the length of consultation, preparation for decision making, preferred role in shared decision making and decisional conflict. Discussion: This study is the first known randomised, controlled trial comparing a digital, pre-consult patient decision aid to an identical paper-based, in-consult patient decision aid. It will contribute evidence on the impact of patient decision aids in terms of investigating if pre-consult digital patient decisions aids compared to in-consult paper-based decision aids support the cancer patients in being better prepared for decision making. Trial registration: ClinicalTrials.gov (NCT05573022). [ABSTRACT FROM AUTHOR]

Background: The application of adaptive design methodology within a clinical trial setting is becoming increasingly popular. However the application of these methods within trials is not being reported as adaptive designs hence making it more difficult to capture the emerging use of these designs. Within this review, we aim to understand how adaptive design methodology is being reported, whether these methods are explicitly stated as an 'adaptive design' or if it has to be inferred and to identify whether these methods are applied prospectively or concurrently.Methods: Three databases; Embase, Ovid and PubMed were chosen to conduct the literature search. The inclusion criteria for the review were phase II, phase III and phase II/III randomised controlled trials within the field of Oncology that published trial results in 2015. A variety of search terms related to adaptive designs were used.Results: A total of 734 results were identified, after screening 54 were eligible. Adaptive designs were more commonly applied in phase III confirmatory trials. The majority of the papers performed an interim analysis, which included some sort of stopping criteria. Additionally only two papers explicitly stated the term 'adaptive design' and therefore for most of the papers, it had to be inferred that adaptive methods was applied. Sixty-five applications of adaptive design methods were applied, from which the most common method was an adaptation using group sequential methods.Conclusions: This review indicated that the reporting of adaptive design methodology within clinical trials needs improving. The proposed extension to the current CONSORT 2010 guidelines could help capture adaptive design methods. Furthermore provide an essential aid to those involved with clinical trials. [ABSTRACT FROM AUTHOR]

Background: Colorectal cancer (CRC) is the third most common cancer type worldwide. Colorectal cancer treatment costs vary between countries as it depends on policy factors such as treatment algorithms, availability of treatments and whether the treatment is government-funded. Hence, the objective of this systematic review is to determine the prevalence and measurements of financial toxicity (FT), including the cost of treatment, among colorectal cancer patients. Methods: Medline via PubMed platform, Science Direct, Scopus, and CINAHL databases were searched to find studies that examined CRC FT. There was no limit on the design or setting of the study. Results: Out of 819 papers identified through an online search, only 15 papers were included in this review. The majority (n = 12, 80%) were from high-income countries, and none from low-income countries. Few studies (n = 2) reported objective FT denoted by the prevalence of catastrophic health expenditure (CHE), 60% (9 out of 15) reported prevalence of subjective FT, which ranges from 7 to 80%, 40% (6 out of 15) included studies reported cost of CRC management– annual direct medical cost ranges from USD 2045 to 10,772 and indirect medical cost ranges from USD 551 to 795. Conclusions: There is a lack of consensus in defining and quantifying financial toxicity hindered the comparability of the results to yield the mean cost of managing CRC. Over and beyond that, information from some low-income countries is missing, limiting global representativeness. [ABSTRACT FROM AUTHOR]

Bacteria in the human body, particularly in the large intestine, are known to be associated with various diseases. To identify disease-associated bacteria (markers), a typical method is to statistically compare the relative abundance of bacteria between healthy subjects and diseased patients. However, since bacteria do not necessarily cause diseases in isolation, it is also important to focus on the interactions and relationships among bacteria when examining their association with diseases. In fact, although there are common approaches to represent and analyze bacterial interaction relationships as networks, there are limited methods to find bacteria associated with diseases through network-driven analysis. In this paper, we focus on rewiring of the bacterial network and propose a new method for quantifying the rewiring. We then apply the proposed method to a group of colorectal cancer patients. We show that it can identify and detect bacteria that cannot be detected by conventional methods such as abundance comparison. Furthermore, the proposed method is implemented as a general-purpose tool and made available to the general public. [ABSTRACT FROM AUTHOR]

Background: With the sharp increase in the involvement of patients (including family and informal caregivers) as active participants, collaborators, advisors and decision-makers in health systems, a new role has emerged: the patient partner. The role of patient partner differs from other forms of patient engagement in its longitudinal and bidirectional nature. This systematic review describes extant work on how patient partners are conceptualized and engaged in health systems. In doing so, it furthers the understanding of the role and activities of patient partners, and best practices for future patient partnership activities. Methods: A systematic review was conducted of peer-reviewed literature published in English or French that describes patient partner roles between 2000 and 2021 in any country or sector of the health system. We used a broad search strategy to capture descriptions of longitudinal patient engagement that may not have used words such as "partner" or "advisor". Results: A total of 506 eligible papers were identified, representing patient partnership activities in mostly high-income countries. These studies overwhelmingly described patient partnership in health research. We identified clusters of literature about patient partnership in cancer and mental health. The literature is saturated with single-site descriptive studies of patient partnership on individual projects or initiatives. There is a lack of work synthesizing impacts, facilitating factors and outcomes of patient partnership in healthcare. Conclusions: There is not yet a consolidated understanding of the role, activities or impacts of patient partners. Advancement of the literature has been stymied by a lack of consistently used terminology. The literature is ready to move beyond single-site descriptions, and synthesis of existing pockets of high-quality theoretical work will be essential to this evolution. [ABSTRACT FROM AUTHOR]

Background: This paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden. Methods: A Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used. Results: A total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients' and their families' lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult. Conclusions: The study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services. Trial registration: Clinical Trial Registry of India (CTRI/2023/04/051357). [ABSTRACT FROM AUTHOR]

Introduction: To date, there are no known studies that have investigated the new need for volunteer services among cancer patients during the Covid-19 pandemic. However, it is essential for volunteer associations to heighten such knowledge to best guide their offer in this challenging period. Aim: The present study aims to provide a mapping of the cancer patients' needs for volunteer services followed at Istituto Nazionale dei Tumori in Milan (Italy) during the Covid-19 pandemic. Since there are no specific questionnaires for this purpose, we created an ad hoc tool for which we report the preliminary result. Method: We used a mixed-method multiphase approach. Phase I: in April-May 2020 40 ad hoc paper questionnaires were distributed at the entrance of the aforementioned hospital, with the aim of investigating patients' needs through two open-ended questions then analyzed through thematic analysis. Phase II: the contents that emerged from Phase I were transformed into items and submitted to the judgment of a small group of "peers" (patients) and "experts" (professionals) in November-December 2020 to evaluate their comprehensiveness, representativeness and intrusiveness. Phase III: in January-February 2021 paper questionnaires, containing the items reviewed in Phase II, were distributed within the hospital to a representative sample of cancer patients. We applied descriptive statistics, Exploratory Factor Analysis (EFA) and Cronbach's Alpha. Results: 32 patients completed Phase I, 3 "peers" and 9 "experts" participated in Phase II, 214 patients completed the questionnaire in Phase III. EFA highlights five kinds of needs during the Covid-19 pandemic, in order of priority: (1) need to be supported at the hospital; (2) need for emotional support; (3) need for daily errands; (4) need for practical support to family members; (5) need to share free time. Preliminary results on the tool are encouraging, although further studies are needed. These results will allow local volunteer associations to adapt their services during the pandemic. [ABSTRACT FROM AUTHOR]

Background: Oral fluid intake decreases in advanced cancer in the dying phase of illness. There is inadequate evidence to support the assessment, and management, of hydration in the dying. Bioelectrical impedance analysis (BIA) is a body composition assessment tool. BIA has the potential to inform clinal management in advanced cancer, by examining the relationships between hydration status and clinical variables. Aim: BIA was used to determine the association between hydration status, symptoms, clinical signs, quality-of-life and survival in advanced cancer, including those who are dying (i.e. in the last week of life). Materials and methods: We conducted a prospective observational study of people with advanced cancer in three centres. Advance consent methodology was used to conduct hydration assessments in the dying. Total body water was estimated using the BIA Impedance index (Height – H (m)2 /Resistance – R (Ohms)). Backward regression was used to identify factors (physical signs, symptoms, quality of life) that predicted H2/R. Participants in the last 7 days of life were further assessed with BIA to assess hydration changes, and its relationship with clinical outcomes. Results: One hundred and twenty-five people participated (males n = 74 (59.2%), females, n = 51 (40.8%)). We used backward regression analysis to describe a statistical model to predict hydration status in advanced cancer. The model demonstrated that 'less hydration' (lower H2/R) was associated with female sex (Beta = -0.39, p < 0.001), increased appetite (Beta = -0.12, p = 0.09), increased dehydration assessment scale score (dry mouth, dry axilla, sunken eyes - Beta = -0.19, p = 0.006), and increased breathlessness (Beta = -0.15, p = 0.03). 'More hydration' (higher H2/R) was associated with oedema (Beta = 0.49, p < 0.001). In dying participants (n = 18, 14.4%), hydration status (H2/R) was not significantly different compared to their baseline measurements (n = 18, M = 49.6, SD = 16.0 vs. M = 51.0, SD = 12.1; t(17) = 0.64, p = 0.53) and was not significantly associated with agitation (rs = -0.85, p = 0.74), pain (rs = 0.31, p = 0.23) or respiratory tract secretions (rs = -0.34, p = 0.19). Conclusions: This is the first study to use bioimpedance to report a model (using clinical factors) to predict hydration status in advanced cancer. Our data demonstrates the feasibility of using an advance consent method to conduct research in dying people. This method can potentially improve the evidence base (and hence, quality of care) for the dying. Future BIA research can involve hydration assessment of cancers (according to type and stage) and associated variables (e.g., stage of illness, ethnicity and gender). Further work can use BIA to identify clinically relevant outcomes for hydration studies and establish a core outcome set to evaluate how hydration affects symptoms and quality-of-life in cancer. Key message: What is already known about this topic? - Oral fluid intake decreases in people with advanced cancer, especially when they approach the dying phase of their illness. - There is inadequate evidence to support hydration assessment and decision making in the dying phase of illness. - It is important to understand which clinical factors are associated with hydration status in advanced cancer, to enable healthcare professionals, to evaluate hydration status and support clinical decision making. - Bioimpedance is a non-invasive technology, which has potential to identify clinically relevant variables for cancer hydration assessment. What this paper adds. - This is the first study to use bioimpedance to report a model (using clinical factors) to predict hydration status in advanced cancer. - The variables with combined significance for predicting hydration status were biological sex, appetite, dry mouth, dry axilla, sunken eyes, breathlessness and oedema. In the dying phase, hydration status did not significantly change compared to baseline, and hydration status was not significantly associated with survival. Implications for practice, theory or policy. - Further work can use bioimpedance to identify clinically relevant outcomes for hydration studies, to establish a core outcome set to evaluate how hydration affects symptoms and quality-of-life in cancer. [ABSTRACT FROM AUTHOR]

Purpose: Neurosurgical ablative procedures, such as cordotomy and cingulotomy, are often considered irreversible and destructive but can provide an effective and individualized solution for cancer-related refractory pain, when all other approaches have been unsuccessful. This paper provides an in-depth exploration of a novel approach to managing refractory cancer pain. It involves an interdisciplinary team led by a neurosurgeon at a renowned national referral center. Methods: a retrospective analysis of the medical records of all sequential patients who underwent their initial evaluation at our interdisciplinary refractory cancer pain clinic from February 2017 to January 2023. Results: A total of 207 patients were examined in the clinic for a first visit during the study period. All patients were referred to the clinic due to severe pain that was deemed refractory by the referring physician. The mean age was 61 ± 12.3 years, with no significant sex difference (P = 0.58). The mean ECOG Performance Status score was 2.35. Conservative measures had not yet been exhausted in 28 patients (14%) and 9 patients were well controlled (4%). Neurosurgical ablative procedures were recommended for 151 (73%) of the patients. Sixty-six patients (32%) eventually underwent the procedure. 91 patients (44%) received a negative recommendation for surgery. Thirty-five patients (17%) were referred for further invasive procedures at the pain clinic. Conclusion: An Interdisciplinary cooperation between palliative care specialists, pain specialists, and neurosurgeons ensures optimal patient selection and provides safe and effective neurosurgery for the treatment of refractory cancer-related pain. [ABSTRACT FROM AUTHOR]

Background: The PAROLE-Onco program was introduced in the province of Quebec, Canada in 2019. It integrates accompanying patients (APs), i.e., people who have been affected by cancer, into the clinical team as full members. These APs use their experiential knowledge with people undergoing treatment and with clinical teams. The aim of this paper is to evaluate, within the framework of two university medical centers, the perceptions of breast cancer patients who receive support from APs, particularly in terms of their active involvement in their care trajectory. Methods: A qualitative study based on semi-structured interviews with accompanied patients was performed. Fourteen individual interviews were conducted between July and September 2021 with women presenting different profiles in terms of age, education, professional status, type of treatment, family situation, and clinical background. The data were analyzed using thematic analysis, focusing on patients' perceptions of APs' contributions and suggested improvements for accessing AP support. Results: Three themes emerged from the semi-structured interviews: communication modalities used to connect patients with their APs, the characteristics of the support provided by APs, and the perceived effects of this support on the patients. Patients expressed a preference for telephone communication, highlighting its convenience and accessibility. The support provided by APs included emotional and informational support, neutrality, and adaptability. This relationship improved patient communication, reduced anxiety, helped regain control, and enhanced overall quality of life. The results emphasized the added value of APs in complementing the support offered by healthcare professionals. Patients noted the critical role of APs in helping them navigate the healthcare system, better understand their treatment processes, and manage their emotions. The ability of APs to provide practical advice and emotional reassurance was particularly valued. Overall, the findings underscored the significant impact of AP support on patients' experiences and highlighted areas for enhancing this service. Conclusion: This study highlights, during the care trajectory of people affected by breast cancer, APs' contribution to patients' emotional well-being because they improve, in particular, the management of emotions and communication with health professionals. Plain english summary: In 2019, we initiated the PAROLE-Onco program in Quebec, Canada, to support cancer patients by integrating Accompanying Patients (APs) into the medical team. These individuals, who have personally experienced cancer, join as full team members, sharing their insights with both patients and medical staff. Our study delved into the perceptions of breast cancer patients at two university hospitals regarding APs' involvement in their care trajectory. Through interviews with 14 women of diverse backgrounds and cancer experiences, we found that APs were instrumental in enhancing communication with doctors, facilitating the expression of challenging emotions, and aiding in treatment decisions. Patients valued the inclusion of APs in their care team and expressed gratitude for their support. Nonetheless, some encountered difficulties in reaching out to APs due to a lack of awareness or challenges involved in connecting. Overall, our research underscores the positive impact of involving APs in the care of breast cancer patients, and of enhancing emotional well-being and communication throughout the treatment journey. [ABSTRACT FROM AUTHOR]

Background: Hospitalisation resulting from complications of systemic therapy and radiotherapy places a substantial burden on the patient, society, and healthcare system. To formulate preventive strategies and enhance patient care, it is crucial to understand the connection between complications and the need for subsequent hospitalisation. This review aimed to assess the existing literature on complications related to systemic and radiotherapy treatments for cancer, and their impact on hospitalisation rates. Methods: Data was obtained via electronic searches of the PubMed, Scopus, Embase and Google Scholar online databases to select relevant peer-reviewed papers for studies published between January 1, 2000, and August 30, 2023. We searched for a combination of keywords in electronic databases and used a standard form to extract data from each article. The initial specific interest was to categorise the articles based on the aspects explored, especially complications due to systemic and radiotherapy and their impact on hospitalisation. The second interest was to examine the methodological quality of studies to accommodate the inherent heterogeneity. The study protocol was registered with PROSPERO (CRD42023462532). Findings: Of 3289 potential articles 25 were selected for inclusion with ~ 34 million patients. Among the selected articles 21 were cohort studies, three were randomised control trials (RCTs) and one study was cross-sectional design. Out of the 25 studies, 6 studies reported ≥ 10 complications, while 7 studies reported complications ranging from 6 to 10. Three studies reported on a single complication, 5 studies reported at least two complications but fewer than six, and 3 studies reported higher numbers of complications (≥ 15) compared with other selected studies. Among the reported complications, neutropenia, cardiac complications, vomiting, fever, and kidney/renal injury were the top-most. The severity of post-therapy complications varied depending on the type of therapy. Studies indicated that patients treated with combination therapy had a higher number of post-therapy complications across the selected studies. Twenty studies (80%) reported the overall rate of hospitalisation among patients. Seven studies revealed a hospitalisation rate of over 50% among cancer patients who had at least one complication. Furthermore, two studies reported a high hospitalisation rate (> 90%) attributed to therapy-repeated complications. Conclusion: The burden of post-therapy complications is emerging across treatment modalities. Combination therapy is particularly associated with a higher number of post-therapy complications. Ongoing research and treatment strategies are imperative for mitigating the complications of cancer therapies and treatment procedures. Concurrently, healthcare reforms and enhancement are essential to address the elevated hospitalisation rates resulting from treatment-related complications in cancer patients. [ABSTRACT FROM AUTHOR]

Background: Approximately 25–50% of patients undergoing radiotherapy (RT) experience psychological distress and anxiety, which can detrimentally affect both their quality of life and treatment outcomes. While previous research has demonstrated that relaxation exercises can enhance the tolerability of RT and alleviate associated stress and anxiety, the specific needs for such therapies in radiation oncology remain under-explored. This study aims to investigate the demand for and preferences toward relaxation exercises among radiotherapy patients, addressing a critical gap in patient-centered care. Methods: A prospective pseudonymized survey study using a one-time paper-based questionnaire was conducted from 2022 to 2023 among patients undergoing curative-intent RT for breast cancer or patients undergoing palliative RT for bone metastases. Patients were asked in a 11-item questionnaire about their anxiety, pre-existing practice of relaxation exercises/interventions, their interest in relaxation exercises, and preferences on the type and format of instruction. Data were analyzed descriptively. Results: 100 patients (74 female and 26 male) responded, of whom 68 received curative-intent adjuvant RT and 32 palliative RT. Median age was 62 years. 78% of patients indicated a desire to be actively involved in their radiotherapy, but only 27% had used relaxation exercises prior to RT. 44.8% of both curatively and palliatively treated patients who wanted to be actively involved in their therapy desired to learn how to best relax. 56.4% of respondents were willing to spend extra time learning offered exercises. Conclusion: The survey indicates that patients undergoing RT, both for curative or palliative intent, desire relaxation exercises to relieve stress and anxiety from RT. It is therefore important to assess the need for relaxation interventions in individual patients and to develop suitable programs or collaborate with other healthcare professionals to meet these needs. [ABSTRACT FROM AUTHOR]

Background: Black women and people with uteri have utilized collectivistic and relational practices to improve health outcomes in the face of medical racism and discrimination for decades. However, there remains a need for interventions to improve outcomes of uterine fibroids, a condition that disproportionately impacts Black people with uteri. Leveraging personalized approaches alongside evidence that demonstrates the positive impact of social and peer support on health outcomes, we adapted from CenteringPregnancy, an evidence based group prenatal care intervention, for the education and empowerment of patients with uterine fibroids. Methods: The present report provides an overview of the study design and planned implementation of CPWF in cohorts at Boston Medical Center and Emory University / Grady Memorial Hospital. After receiving training from the Centering Healthcare Institute (CHI), we adapted the 10-session CenteringPregnancy curriculum to an 8-session hybrid group intervention called Centering Patients with Fibroids (CPWF). The study began in 2022 with planned recruitment of six cohorts of 10-12 participants at each institution. We will conduct a mixed methods evaluation of the program using validated survey tools and qualitative methods, including focus groups and 1:1 interviews. Discussion: To date, we have successfully recruited 4 cohorts at Boston Medical Center and are actively implementing BMC Cohort 5 and the first cohort at Emory University / Grady Memorial Hospital. Evaluation of the program is forthcoming. Plain English Summary: Fibroids are non-cancerous smooth muscle tumors that disproportionate impact black women and gender expansive people. Our team adapted CenteringPregnancy, a group based model of prenatal care, to an education and empowerment program for peple with fibroids called Centering Patients with Fibroids (CPWF). This paper describes the development and implemation of the program at two academic hospitals serving diverse patients in Boston, Massachusetts and Atlanta, Georgia. To evaluate the successes and challenges of the program, we ask participants to complete surveys to learn more about their experience with having fibroids and also invite them to group feedback sessions or focus groups. We also interview other healthcare providers, team members, and hospital leadership on their knowledge and thoughts about the program. We hope to use the feedback to improve the program and make it available to more people across the country. [ABSTRACT FROM AUTHOR]

Background: Preoperative education can improve postoperative quality of life in patients undergoing stoma surgery. However, the prevalence and when, where, and how preoperative education is implemented are unclear. Therefore, this study aimed to assess the current status of outpatient preoperative education for patients undergoing stoma surgery for rectal cancer as perceived by nurses. Additionally, it sought to identify the information provided by Japanese healthcare providers as a part of preoperative education. Methods: This cross-sectional study included 1,716 wound, ostomy, and continence nurses (WOCNs) in charge of stoma clinics at Japanese hospitals. Unsigned self-administered survey forms were mailed to the participants, and paper- or web-based responses were obtained. The main questions included: overview of the participants and their facilities, provision of outpatient preoperative education, status of implementation, and preoperative education components. To examine the factors associated with preoperative education, the independent variable was the presence or absence of preoperative education in the clinic, and the explanatory variables were the years of experience as a nurse, years of experience as a WOCN, type of hospital, number of beds, and number of intestinal stoma surgeries per year. Regression analysis was performed. Results: We received 773 valid responses (valid response rate: 45%). Duration of experience as a nurse and as a WOCN were 24.6 and 10.9 years, respectively. Outpatient preoperative education was provided by 24% of the participants. Most preoperative education sessions were conducted for patients or caregivers. Preoperative education took 31–60 min per patient, and one to five patients received preoperative education each month. Booklets, ostomy appliances, and stoma models/dolls were used as supplementary materials for preoperative education. The most frequently mentioned components of preoperative education were stoma care, daily life, social security, stoma clinic, traveling and going out, quality of life after stoma surgery, and precautions for medical treatment. In addition, education on the use of restrooms on the go, disaster preparedness, defecation disorders after restorative proctectomy, and complications after stoma closure were considered necessary. Conclusions: The implementation rate of outpatient preoperative education was low (24%). Future challenges include the development of specific educational content and procedures suitable for the Japanese medical environment and the establishment of preoperative medical care teams for stoma surgery to promote the provision of outpatient preoperative education. [ABSTRACT FROM AUTHOR]

Background: Since the biological material that remains after diagnostic and therapeutic procedures plays crucial role in biobank research, this study aims to explore cancer patients' views on the donation of biospecimens for research purposes. Methods: 548 oncology patients from two hospitals with oncology treatment units in Poznan, Poland, completed an anonymous, self-administered pen-and-paper questionnaire. Results: Although only 43.4% of patients had heard of biobanks, 93.1% declared themselves willing to donate. 71.1% of patients believed that doctors should ask patients to donate, and 60.9% that this should be done before the medical procedure. While 65% of patients were willing to donate any type of tissue that remained after a medical procedure, blood, saliva and hair were indicated most frequently. 40.5% of patients would donate their entire body after death and 21% would refuse. Patients' support for biobanks was mainly driven by the desire to support science, help advance cancer research and altruism. Some respondents expected health information or medical treatment. The most common barriers for donation were physical distance, repeated examinations, concerns over the privacy and confidentiality of data and the commercial or unethical use of samples. Patients' attitudes toward biobank donation seemed to be associated with age, education level, declared religiousness, a family history of genetically determined diseases and whether they were a blood donor. Conclusions: Although cancer patients' lack of biobank awareness had no effect on their affirmative attitudes towards biobank research, there is a need to further increase patients' support and overcome possible barriers that might hinder their willingness to donate. [ABSTRACT FROM AUTHOR]

Background: Epidemiological studies often rely on self-reported health problems and validation greatly improves study quality. In a study of late effects after childhood cancer, we validated self-reported cardiovascular problems by contacting general practitioners (GPs). This paper describes: (a) the feasibility of this approach; and (b) the agreement between survivor-reports and reports from their GP. Methods: The Swiss Childhood Cancer Survivor Study (SCCSS) contacts all childhood cancer survivors registered in the Swiss Childhood Cancer Registry since 1976 who survived at least 5 years from cancer diagnosis. We validated answers of all survivors who reported a cardiovascular problem in the questionnaire. Reported cardiovascular problems were hypertension, arrhythmia, congestive heart failure, myocardial infarction, angina pectoris, stroke, thrombosis, and valvular problems. In the questionnaire, we further asked survivors to provide a valid address of their GP and a consent for contact. We sent case-report forms to survivors' GPs and requested information on cardiovascular diagnoses of their patients. To determine agreement between information reported by survivors and GPs, we calculated Cohen's kappa (κ) coefficients for each category of cardiovascular problems. Results: We used questionnaires from 2172 respondents of the SCCSS. Of 290 survivors (13% of 2172) who reported cardiovascular problems, 166 gave consent to contact their GP and provided a valid address. Of those, 135 GPs (81%) replied, and 128 returned the completed case-report form. Survivor-reports were confirmed by 54/128 GPs (42%). Of the 54 GPs, 36 (28% of 128) confirmed the problems as reported by the survivors; 11 (9% of 128) confirmed the reported problem(s) and gave additional information on more cardiovascular outcomes; and seven GPs (5% of 128) confirmed some, but not all cardiovascular problems. Agreement between GPs and survivors was good for stroke (κ = 0.79), moderate for hypertension (κ = 0.51), arrhythmias (κ = 0.41), valvular problems (κ = 0.41) and thrombosis (κ = 0.56), and poor for coronary heart disease (κ = 0.15) and heart failure (κ = 0.32). Conclusions: Despite excellent GP compliance, it was found unfeasible to validate self-reported cardiovascular problems via GPs because they do not serve as gatekeepers in the Swiss health care system. It is thus necessary to develop other validation methods to improve the quality of patient-reported outcomes. [ABSTRACT FROM AUTHOR]

Background: Ninety percent of patients receiving radiation therapy experience side effects. Busy schedules and intensive health education programs may lead to incomplete education content delivery and inaccurate patient self-care implementation. This study investigated whether multimedia health education improves the accuracy of patient self-care implementation compared with paper-based education. Methods: From March 11, 2020 to February 28, 2021, 110 patients were randomly divided into experimental and control groups, each comprising 55 participants. Paper-based materials were used along with multimedia materials. Radiology self-care awareness questionnaires were administered to both groups before the first treatment and on day 10. The differences in radiology self-care awareness between the two groups was analyzed with inferential statistics, independent t tests, categorical data, and Pearson's chi-squared test. Differences between the two groups were considered significant at a p value of < 0.05. Results: The treatment accuracy rate improved from 10.9 to 79.1% in the control group and from 24.8 to 98.5% in the experimental group, indicating an improvement in both groups. The difference was significant. These results indicate that the intervention could improve the effectiveness of self-care. Conclusions: Participants who used pretreatment multimedia health education exhibited a higher rate of having a correct understanding of treatment self-care than did the control group. These findings can inform the development of a patient-centered cancer treatment knowledge base for improved quality of care. [ABSTRACT FROM AUTHOR]

Background: Premenopausal breast cancer patients are at risk of treatment-related infertility. Many patients do not receive sufficient fertility information before treatment. As such, our team developed and alpha tested the Begin Exploring Fertility Options, Risks, and Expectations decision aid (BEFORE DA).Methods: The BEFORE DA development process was guided by the International Patient Decision Aids Standards and the Ottawa Decision Support Framework. Our team used integrated knowledge translation by collaborating with multiple stakeholders throughout the development process including breast cancer survivors, multi-disciplinary health care providers (HCPs), advocates, and cancer organization representatives. Based on previously conducted literature reviews and a needs assessment by our team - we developed a paper prototype. The paper prototype was finalized at an engagement meeting with stakeholders and created into a graphically designed paper and mirrored online decision aid. Alpha testing was conducted with new and previously engaged stakeholders through a questionnaire, telephone interviews, or focus group. Iterative reviews followed each step in the development process to ensure a wide range of stakeholder input.Results: Our team developed an 18-page paper prototype containing information deemed valuable by stakeholders for fertility decision-making. The engagement meeting brought together 28 stakeholders to finalize the prototype. Alpha testing of the paper and online BEFORE DA occurred with 17 participants. Participants found the BEFORE DA usable, acceptable, and most provided enthusiastic support for its use with premenopausal breast cancer patients facing a fertility decision. Participants also identified areas for improvement including clarifying content/messages and modifying the design/photos. The final BEFORE DA is a 32-page paper and mirrored online decision aid ( https://fertilityaid.rethinkbreastcancer.com ). The BEFORE DA includes information on fertility, fertility options before/after treatment, values clarification, question list, next steps, glossary and reference list, and tailored information on the cost of fertility preservation and additional resources by geographic location.Conclusion: The BEFORE DA, designed in collaboration with stakeholders, is a new tool for premenopausal breast cancer patients and HCPs to assist with fertility discussions and decision-making. The BEFORE DA helps to fill the information gap as it is a tool that HCPs can refer patients to for supplementary information surrounding fertility. [ABSTRACT FROM AUTHOR]

Background: To review the available clinical data about the value of Indocyanine Green (ICG) fluorescence imaging for intraoperative detection of peritoneal carcinomatosis.Methods: We conducted a systematic review, according to the PRISMA guidelines, for clinical series investigating the possible role of ICG fluorescence imaging in detecting peritoneal carcinomatosis during surgical treatment of abdominal malignancies. With the aim to analyze actual application in the daily clinical practice, papers including trials with fluorophores other than ICG, in vitro and animals series were excluded. Data on patients and cancer features, timing, dose and modality of ICG administration, sensitivity, specificity and accuracy of fluorescence diagnosis of peritoneal nodules were extracted and analyzed.Results: Out of 192 screened papers, we finally retrieved 7 series reporting ICG-guided detection of peritoneal carcinomatosis. Two papers reported the same cases, thus only 6 series were analyzed, for a total of 71 patients and 353 peritoneal nodules. The investigated tumors were colorectal carcinomas in 28 cases, hepatocellular carcinoma in 16 cases, ovarian cancer in 26 cases and endometrial cancer in 1 case. In all but 4 cases, the clinical setting was an elective intervention in patients known as having peritoneal carcinomatosis. No series reported a laparoscopic procedure. Technical data of ICG management were consistent across the studies. Overall, 353 lesions were harvested and singularly evaluated. Sensitivity varied from 72.4 to 100%, specificity from 54.2 to 100%. Two series reported that planned intervention changed in 25 and 29% of patients, respectively.Conclusion: Indocyanine Green based fluorescence of peritoneal carcinomatosis is a promising intraoperative tool for detection and characterization of peritoneal nodules in patients with colorectal, hepatocellular, ovarian carcinomas. Further prospective studies are needed to fix its actual diagnostic value on these and other abdominal malignancies with frequent spread to peritoneum. [ABSTRACT FROM AUTHOR]

Prostate cancer, the most common cancer in men, is influenced by age, family history, genetics, and lifestyle factors. Early detection of prostate cancer using screening methods improves outcomes, but the balance between overdiagnosis and early detection remains debated. Using Deep Learning (DL) algorithms for prostate cancer detection offers a promising solution for accurate and efficient diagnosis, particularly in cases where prostate imaging is challenging. In this paper, we propose a Prostate Cancer Detection Model (PCDM) model for the automatic diagnosis of prostate cancer. It proves its clinical applicability to aid in the early detection and management of prostate cancer in real-world healthcare environments. The PCDM model is a modified ResNet50-based architecture that integrates faster R-CNN and dual optimizers to improve the performance of the detection process. The model is trained on a large dataset of annotated medical images, and the experimental results show that the proposed model outperforms both ResNet50 and VGG19 architectures. Specifically, the proposed model achieves high sensitivity, specificity, precision, and accuracy rates of 97.40%, 97.09%, 97.56%, and 95.24%, respectively. [ABSTRACT FROM AUTHOR]

Purpose: Today, the Internet provides access to many patients' experiences, which is crucial in assessing the quality of healthcare services. This paper introduces a model for detecting cancer patients' opinions about healthcare services in the Persian language, both positive and negative. Method: To achieve the objectives of this study, a combination of sentiment analysis (SA) and topic modeling approaches was employed. All pertinent comments made by cancer patients were collected from the patient feedback form of the Tehran University of Medical Science (TUMS) Cancer Institute (CI) in Iran, from March to October 2021. Conventional evaluation metrics such as accuracy, precision, recall, and F-measure were utilized to assess the performance of the proposed model. Result: The experimental findings revealed that the proposed SA model achieved accuracies of 89.3%, 92.6%, and 90.8% in detecting patients' sentiments towards general services, healthcare services, and life expectancy, respectively. Based on the topic modeling results, the topic "Metastasis" exhibited lower sentiment scores compared to other topics. Additionally, cancer patients expressed dissatisfaction with the current appointment booking service, while topics such as "Good experience," "Affable staff", and "Chemotherapy" garnered higher sentiment scores. Conclusion: The combined use of SA and topic modeling offers valuable insights into healthcare services. Policymakers can utilize the knowledge obtained from these topics and associated sentiments to enhance patient satisfaction with cancer institution services. [ABSTRACT FROM AUTHOR]

Background: Recently, cancer organoid-based drug sensitivity tests have been studied to predict patient responses to anticancer drugs. The area under curve (AUC) or IC50 value of the dose-response curve (DRC) is used to differentiate between sensitive and resistant patient's groups. This study proposes a multi-parameter analysis method (cancer organoid-based diagnosis reactivity prediction, CODRP) that considers the cancer stage and cancer cell growth rate, which represent the severity of cancer patients, in the sensitivity test. Methods: On the CODRP platform, patient-derived organoids (PDOs) that recapitulate patients with lung cancer were implemented by applying a mechanical dissociation method capable of high yields and proliferation rates. A disposable nozzle-type cell spotter with efficient high-throughput screening (HTS) has also been developed to dispense a very small number of cells due to limited patient cells. A drug sensitivity test was performed using PDO from the patient tissue and the primary cancer characteristics of PDOs were confirmed by pathological comparision with tissue slides. Results: The conventional index of drug sensitivity is the AUC of the DRC. In this study, the CODRP index for drug sensitivity test was proposed through multi-parameter analyses considering cancer cell proliferation rate, the cancer diagnosis stage, and AUC values. We tested PDOs from eight patients with lung cancer to verify the CODRP index. According to the anaplastic lymphoma kinase (ALK) rearrangement status, the conventional AUC index for the three ALK-targeted drugs (crizotinib, alectinib, and brigatinib) did not classify into sensitive and resistant groups. The proposed CODRP index-based drug sensitivity test classified ALK-targeted drug responses according to ALK rearrangement status and was verified to be consistent with the clinical drug treatment response. Conclusions: Therefore, the PDO-based HTS and CODRP index drug sensitivity tests described in this paper may be useful for predicting and analyzing promising anticancer drug efficacy for patients with lung cancer and can be applied to a precision medicine platform. [ABSTRACT FROM AUTHOR]

Background: Although cancer survivorship care plans have been in use for several years, they have been shown to not be effective in meeting the long-term needs of cancer survivors, in addition being generic and passive in nature. Interactive survivorship care plans in the form of a personal decision support aid could provide an opportunity to not only engage survivors in their health care, but also capture meaningful treatment-related outcomes to use as a rich data source as the basis for making informed decisions. The objective of this research is to formulate an evidence-based model framework for implementing breast cancer survivorship guidelines via an online breast cancer survivorship care plan (SCP).Methods: The study was completed in three steps. In the first step, or the requirements gathering phase, we conducted personal interviews of breast cancer survivors to determine their use of the survivorship care plan (SCP) and related needs to determine core SCP functions and formulate an implementation framework for an online SCP. In the second step, we used the framework as a guide to design and develop the online SCP tool. Finally, in the third step, we conducted preliminary testing to determine the feasibility of the developed tool among online users.Results: Fifteen breast cancer survivors were consulted, who reported several issues from their use of the traditional paper-based SCP. Four themes were identified that represent the SCP's core desired functions. Eight features were matched to implement these core functions. Using a personal decision approach, an online SCP tool called ACESO that incorporates these features and functions was developed. Preliminary feasibility testing yielded overall positive responses from breast cancer survivors (n = 51).Conclusion: Our study demonstrated that survivors face challenges from their use of a traditional paper-based SCP. The online SCP we developed is technically feasible and has the potential to effectively engage breast cancer survivors in self-management and shared decision-making with their clinicians and caregivers. Further testing is required to assess its usability and long-term impact. [ABSTRACT FROM AUTHOR]

Background: The need to mitigate the volume of unplanned emergency department (ED) presentations is a priority for health systems globally. Current evidence on the incidence and risk factors associated with unplanned ED presentations is unclear because of substantial heterogeneity in methods reporting on this issue. The aim of this review was to examine the methodological approaches to measure the incidence of unplanned ED presentations by patients receiving systemic anti-cancer therapy in order to determine the strength of evidence and to inform future research.Methods: An electronic search of Medline, Embase, CINAHL, and Cochrane was undertaken. Papers published in English language between 2000 and 2019, and papers that included patients receiving systemic anti-cancer therapy as the denominator during the study period were included. Studies were eligible if they were analytical observational studies. Data relating to the methods used to measure the incidence of ED presentations by patients receiving systemic anti-cancer therapy were extracted and assessed for methodological rigor. Findings are reported in accordance with the Synthesis Without Meta-Analysis (SWiM) guideline.Results: Twenty-one articles met the inclusion criteria: 20 cohort studies, and one cross-sectional study. Overall risk of bias was moderate. There was substantial methodological and clinical heterogeneity in the papers included. Methodological rigor varied based on the description of methods such as the period of observation, loss to follow-up, reason for ED presentation and statistical methods to control for time varying events and potential confounders.Conclusions: There is considerable diversity in the population and methods used in studies that measure the incidence of unplanned ED presentations by patients receiving systemic anti-cancer therapy. Recommendations to support the development of robust evidence include enrolling participants at diagnosis or initiation of treatment, providing adequate description of regular care to support patients who experience toxicities, reporting reasons for and characteristics of participants who are lost to follow-up throughout the study period, clearly defining the outcome including the observation and follow-up period, and reporting crude numbers of ED presentations and the number of at-risk days to account for variation in the length of treatment protocols. [ABSTRACT FROM AUTHOR]

Background: The purpose of this case study is to describe how a vulnerable group of patients can be included in research. The activities, challenges, lessons learned, and reflections on the importance of patient involvement in research for 5 years (2016–2021) at the adolescent and young adult (AYA) cancer support facility, Kræftværket, are reported. Main body: A patient panel at Kræftværket, the Youth Panel has multiple aims, one of which is the ability to perform patient involvement in research, with the goal of achieving research of high quality. We here describe how Patient and Public involvement (PPI) can be customized to AYAs in a cancer trajectory, who face many challenges, including those in the physical, psychological, and social domains. During 2016–2021, Youth Panel meetings were planned every third month but interrupted during the COVID-19 pandemic. With a flexible structure and a dynamic panel including 10–15 varying AYAs in a cancer trajectory, engagement and involvement have been maintained. Eight research topics were investigated, seven of which were discussed and confirmed to be important by the Youth Panel. Out of eight topics, three were raised by patients, and five by researchers. One was not discussed due to COVID-19. Some of the challenges we have experienced were related to the flexible meeting structure and the differing expectations and priorities as well as the impact of COVID-19. However, we experienced that patient involvement is possible in the field of AYA oncology if a trusting environment is created. A key finding in our case study was, that without a national Danish PPI program and no defined international standard for PPI in AYA cancer research yet, we were able to give patients the possibility to give input to researchers on topics where research is missing. Conclusion: Here, we demonstrate how patient involvement in research has been performed at an AYA cancer facility, Kræftværket, during a 5-year period. We encourage others to perform patient-involving research, even in challenging populations. Ideally this must follow international standards for PPI in AYA cancer research when such exist to improve research with crucial insight from patients. Plain English resume: In this paper, we describe patient involvement in research at Kræftværket, a youth support center and social organization for AYAs in a cancer trajectory. The center is located at The University Hospital Rigshospitalet in Copenhagen, Denmark. Youth panel meetings are Kræftværkets' most central patient involvement activity, and one of its aims is to facilitate high-quality patient-initiated research. AYA cancer patients are a vulnerable group facing huge psycho-social challenges and symptoms that make normal functioning difficult. Therefore, the youth panel is designed to be flexible in its structure, so participants do not have to commit themselves as permanent members. The youth panel meets four times a year, and during the period 2016–2021, it has been involved in eight research topics. Challenges include the flexible meeting structure, different expectations, and priorities as well as the impact of COVID-19. However, patient involvement has been possible because of a trusting environment with strong nurse-led support for the participants. We hope to encourage others to argue for and carry out meaningful patient-involving research to improve tomorrow's quality of AYA cancer care. [ABSTRACT FROM AUTHOR]

Background: Many scientific papers are published each year and substantial resources are spent to develop biomarker-based tests for precision oncology. However, only a handful of tests is currently used in daily clinical practice, since development is challenging. In this situation, the application of adequate statistical methods is essential, but little is known about the scope of methods used. Methods: A PubMed search identified clinical studies among women with breast cancer comparing at least two different treatment groups, one of which chemotherapy or endocrine treatment, by levels of at least one biomarker. Studies presenting original data published in 2019 in one of 15 selected journals were eligible for this review. Clinical and statistical characteristics were extracted by three reviewers and a selection of characteristics for each study was reported. Results: Of 164 studies identified by the query, 31 were eligible. Over 70 different biomarkers were evaluated. Twenty-two studies (71%) evaluated multiplicative interaction between treatment and biomarker. Twenty-eight studies (90%) evaluated either the treatment effect in biomarker subgroups or the biomarker effect in treatment subgroups. Eight studies (26%) reported results for one predictive biomarker analysis, while the majority performed multiple evaluations, either for several biomarkers, outcomes and/or subpopulations. Twenty-one studies (68%) claimed to have found significant differences in treatment effects by biomarker level. Fourteen studies (45%) mentioned that the study was not designed to evaluate treatment effect heterogeneity. Conclusions: Most studies evaluated treatment heterogeneity via separate analyses of biomarker-specific treatment effects and/or multiplicative interaction analysis. There is a need for the application of more efficient statistical methods to evaluate treatment heterogeneity in clinical studies. [ABSTRACT FROM AUTHOR]

Primary care physicians (PCPs) play an indispensable role in providing comprehensive care and referring patients for specialty care and other medical services. As the COVID-19 outbreak disrupts patient access to care, understanding the quality of primary care is critical at this unprecedented moment to support patients with complex medical needs in the primary care setting and inform policymakers to redesign our primary care system. The traditional way of collecting information from patient surveys is time-consuming and costly, and novel data collection and analysis methods are needed. In this review paper, we describe the existing algorithms and metrics that use the real-world data to qualify and quantify primary care, including the identification of an individual's likely PCP (identification of plurality provider and major provider), assessment of process quality (for example, appropriate-care-model composite measures), and continuity and regularity of care index (including the interval index, variance index and relative variance index), and highlight the strength and limitation of real world data from electronic health records (EHRs) and claims data in determining the quality of PCP care. The EHR audits facilitate assessing the quality of the workflow process and clinical appropriateness of primary care practices. With extensive and diverse records, administrative claims data can provide reliable information as it assesses primary care quality through coded information from different providers or networks. The use of EHRs and administrative claims data may be a cost-effective analytic strategy for evaluating the quality of primary care. [ABSTRACT FROM AUTHOR]

Background: Cancer survivors are a diverse group with varying needs that are patient-, disease-, and/or treatment-specific. Cancer survivors have reported supplementing conventional anti-cancer treatment with Traditional and Complementary Medicine (T&CM). Although female cancer survivors are reported to have more severe anticancer adverse effects, little is known about the association between anticancer treatment and T&CM use among Norwegian cancer survivors. The aims of this study are therefore to investigate (1) associations between cancer diagnosis characteristics and T&CM utilization and (2) associations between anticancer treatment and T&CM utilization among cancer survivors in the seventh survey of the Tromsø study. Methods: Data was collected from the seventh survey of the Tromsø Study conducted in 2015-16 among all inhabitants of Tromsø municipality aged 40 and above (response rate 65%), where inhabitants received online and paper form questionnaires. Data from the data linkage to the Cancer Registry of Norway for cancer diagnosis characteristics was also used. The final study sample was made up of 1307 participants with a cancer diagnosis. Categorical variables were compared using Pearson's Chi-square test or Fisher's exact test while independent sample t-test was used to compare continuous variables. Results: The use of T&CM the preceding 12 months was reported by 31.2% of the participants with natural remedies as the most reported modality of T&CM (18.2%, n = 238), followed by self-help practices of meditation, yoga, qigong, or tai chi, which was reported by 8.7% (n = 114). Users of T&CM were significantly younger (p =.001) and more likely to be female (p <.001) than the non-users, with higher use of T&CM among female survivors with poor self-reported health and being 1–5 years post-diagnosis. Lower use of T&CM was found among female survivors who received a combination of surgery with hormone therapy and those who received a combination of surgery with hormone therapy and radiotherapy. Similar usage was seen in male survivors, but not at a significant level. For both male and female survivors, T&CM was most frequently used by those with only one cancer diagnosis (p =.046). Conclusion: Our results indicate that the profile of the Norwegian cancer survivor who uses T&M is slightly changing compared to previous findings. Additionally, compared to male survivors, more clinical factors are associated with use of T&CM among female cancer survivors. These results should serve as a reminder to conventional health care providers to discuss the use of T&CM with patients across the entire cancer survivorship continuum to promote safe use, especially among female survivors. [ABSTRACT FROM AUTHOR]

Background: The role of patients in cancer research is undergoing a significant evolution as all stakeholders seek to enhance the level of direct patient involvement in the design and development of clinical trials. However, there are significant hurdles that patients, patient advocates, laboratory researchers, clinical investigators, and funding institutions must overcome to implement relevant patient involvement in all aspects of biomedical research. By using innovative grant funding models, philanthropic organizations can lead the field in overcoming these challenges. Rising Tide Foundation for Clinical Cancer Research (RTFCCR), a private philanthropy that funds academic research, has developed a novel approach for requiring and supporting partnerships among grantees and patients in designing and conducting research projects. This paper presents a reflective case study of efforts to advance the field of patient involvement in clinical research. Methods: The decision to focus on patient involvement stems from an expressed focus area established by the RTFCCR board of directors. In conducting this work, RTFCCR partnered with Patvocates, a patient advocacy and engagement network, to create a set of guiding documents and resources aimed at public and private health research funders within various national, international, and therapeutic settings. This effort included a landscape assessment, interviews with experts, and an iterative development process. Results: To date, RTFCCR has completed and disseminated three guiding documents, one for funders, one for grant applicants, and one for patient advocates. These resources have already generated three major ongoing initiatives at RTFCCR: (1) inclusion of these recommendations in the foundation's funding guidelines; patient input to prioritization of research focus areas; and in topic selection for calls for proposals; (2) direct involvement of patient experts in the grant review process; and (3) a commitment to support high impact clinical research projects in Low- and Middle-Income Countries. Moreover, the foundation has launched a partnership with the International Cancer Research Partnership, the global alliance of cancer research organizations. Conclusion: By using its grantmaking function and developing standardized approaches for implementation of patient involvement, RTFCCR is seeking to advance patient-centric cancer clinical research. This approach will continue to develop as it is implemented and shared with partners throughout the world. Plain English summary: The Rising Tide Foundation for Clinical Cancer Research (RTFCCR), a private philanthropy that funds academic research, has developed a novel approach for requiring and supporting partnerships among grantees (scientists) and patients in designing and conducting research projects. The decision to focus on patient involvement stems from an expressed focus area established by the RTFCCR board of directors. In conducting this work, RTFCCR partnered with Patvocates, a patient advocacy and engagement network. Patvocates conducted a landscape assessment, interviews with experts, and their collective experience as patient advocates. This work generated a set of guiding documents and resources. These resources are to help public and private health research funders to better understand current challenges and support scientists and patients through their funding mechanisms. Three guiding documents, one for funders, one for grant applicants, and one for patient advocates are now available for download at the RTFCCR website: https://www.risingtide-foundation.org/clinical-cancer-research/patient-engagement#start Delivering a paradigm change involves not only the introduction of additional requirements and rules, but also enhanced education of patients and investigators. By using its grantmaking function and developing standardized approaches for implementation of patient involvement, RTFCCR is seeking to advance patient-centric cancer clinical research. Development and implementation of consistent policies and procedures for the integration of the patients' view in the design and review of research proposals is needed for funders as well as for research institutes, both public and private. [ABSTRACT FROM AUTHOR]

Background: Implementation strategies are crucial to facilitate implementation success. To prepare and support implementation of a clinical pathway for screening, assessment and management of anxiety and depression in cancer patients (the ADAPT CP), six broad categories of implementation strategies; (1) Awareness campaigns, (2) Champions, (3) Education, (4) Academic Detailing and Support, (5) Reporting, (6) Technological Support, were developed. The aim of this paper is to describe the fidelity and acceptability of six categories of implementation strategies and any subsequent changes/adaptations made to those strategies. Methods: The ADAPT CP was implemented in twelve cancer services in NSW, Australia, as part of a cluster randomised controlled trial of core versus enhanced implementation strategies. Fidelity to and any subsequent changes to the delivery of the planned six categories of implementation strategies were captured using the ADAPT contact log, which recorded the contacts made between the ADAPT research team and services, engagement meetings and monthly meetings. To explore acceptability and awareness/engagement with the implementation strategies, interviews with a purposively selected staff sample across both study arms were held prior to implementation (T0), six months into implementation (T1) and at the end of the 12-month implementation period (T2). Interviews were thematically analysed across the six categories of strategies. Results: Delivery of all six categories of implementation strategies as planned was moderated by service context and resources and staff engagement. As such, for some implementation strategies, subsequent changes or adaptations to the content, mode of delivery, frequency and duration such as abbreviated training sessions, were made to optimise fidelity to and engagement with the strategies. Most strategies were perceived to be acceptable by service staff. Use of strategies prior to implementation of the ADAPT CP such as the engagement meetings and training sessions, positively impacted on ownership and preparedness to implement the ADAPT CP. Furthermore, ongoing support such as provision of additional training or monthly meetings facilitated increased awareness and engagement with the ADAPT program. Conclusion: Flexibility in delivering implementation strategies, and ensuring staff engagement with, and acceptability of those strategies, can support implementation of interventions within healthcare settings. Trial registration: The ADAPT CRCT was registered prospectively with the ANZCTR on 22/3/2017. Trial ID ACTRN12617000411347. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372486&isReview=true [ABSTRACT FROM AUTHOR]

Background: Health inequities lead to low rates of cancer screening in certain populations, such as low-income and ethnic minority groups. Different interventions to address this have been developed with mixed results. However, interventions are not always developed in collaboration with the people they target. The aim of our article is to present the viewpoint of patients, survivors, advocates, and lay persons on interventions to increase cancer screening from a health inequity perspective. Methods: We prepared talking points to guide discussions between coauthors, who included representatives from nine patient and survivor advocacy groups, organizations working for citizen/patient empowerment, and health equity experts. Perspectives and opinions were first collected through video conferencing meetings and a first draft of the paper was prepared. All authors, read through, revised, and discussed the contents to reach an agreement on the final perspectives to be presented. Results: Several themes were identified: it is important to not view screening as a discrete event; barriers underlying an individual's access and willingness to undergo screening span across a continuum; individually tailored interventions are likely to be more effective than a one-size fits-all approach because they may better accommodate the person's personal beliefs, knowledge, behaviors, and preferences; targeting people who are unknown to medical services and largely unreachable is a major challenge; including professional patient advocacy groups and relevant lay persons in the cocreation of interventions at all stages of design, implementation, and evaluation is essential along with relevant stakeholders (healthcare professionals, researchers, local government and community organizations etc). Conclusions: Interventions to address cancer screening inequity currently do not adequately solve the issue, especially from the viewpoint of patients, survivors, and lay persons. Several core pathways should be focused on when designing and implementing interventions: advancing individually tailored interventions; digital tools and social media; peer-based approaches; empowerment; addressing policy and system barriers; better design of interventions; and collaboration, including the involvement of patients and patient advocacy organizations. [ABSTRACT FROM AUTHOR]

Background: As the main cause of cancer death, lung cancer imposes seriously health and economic burdens on individuals, families, and the health system. In China, there is no national study analyzing the hospitalization expenditures of different payment methods by lung cancer inpatients. Based on the 2010–2016 database of insured urban resident lung cancer inpatients from the China Medical Insurance Research Association (CHIRA), this paper aims to investigate the characteristics and cost of hospitalized lung cancer patient, to examine the differences in hospital expenses and patient out-of-pocket (OOP) expenses under four medical insurance payment methods: fee-for-service (FFS), per-diem payments, capitation payments (CAP) and case-based payments, and to explore the medical insurance payment method that can be conducive to controlling the cost of lung cancer. Method: This is a 2010–2016, 7-year cross-sectional study. CHIRA data are not available to researchers after 2016. The Medical Insurance Database of CHIRA was screened using the international disease classification system to yield 28,200 inpatients diagnosed with lung cancer (ICD-10: C34, C34.0, C34.1, C34.2, C34.3, C34.8, C34.9). The study includes descriptive analysis and regression analysis based on generalized linear models (GLM). Results: The average patient age was 63.4 years and the average length of hospital stay (ALOS) was 14.2 day; 60.7% of patients were from tertiary hospitals; and 45% were insured by FFS. The per-diem payment had the lowest hospital expenses (RMB7496.00/US$1176.87), while CAP had the lowest OOP expenses (RMB1328.18/US$208.52). Compared with FFS hospital expenses, per-diem was 21.3% lower (95% CI = -0.265, -0.215) and case-based payment was 8.4% lower (95% CI = -0.151, -0.024). Compared with the FFS, OOP expenses, per-diem payments were 9.2% lower (95% CI = -0.130, -0.063) and CAP was 15.1% lower (95% CI = -0.151, -0.024). Conclusion: For lung cancer patients, per-diem payment generated the lowest hospital expenses, while CAP meant patients bore the lowest OOP costs. Policy makers are suggested to give priority to case-based payments to achieve a tripartite balance among medical insurers, hospitals, and insured members. We also recommend future studies comparing the disparities of various diseases for the cause of different medical insurance schemes. [ABSTRACT FROM AUTHOR]

Background: The objective of this paper is to explore the value of a delta-radiomic model of the axillary lymph node (ALN) using dynamic contrast-enhanced (DCE) MRI for early prediction of the axillary pathological complete response (pCR) of breast cancer patients after neoadjuvant chemotherapy (NAC). Methods: A total of 120 patients with ALN-positive breast cancer who underwent breast MRI before and after the first cycle of NAC between October 2018 and May 2021 were prospectively included in this study. Patients were divided into a training (n = 84) and validation (n = 36) cohort based on the temporal order of their treatments. Radiomic features were extracted from the largest slice of targeted ALN on DCE-MRI at pretreatment and after one cycle of NAC, and their changes (delta-) were calculated and recorded. Logistic regression was then applied to build radiomic models using the pretreatment (pre-), first-cycle(1st-), and changes (delta-) radiomic features separately. A clinical model was also built and combined with the radiomic models. The models were evaluated by discrimination, calibration, and clinical application and compared using DeLong test. Results: Among the three radiomic models, the ALN delta-radiomic model performed the best with AUCs of 0.851 (95% CI: 0.770–0.932) and 0.822 (95% CI: 0.685–0.958) in the training and validation cohorts, respectively. The clinical model yielded moderate AUCs of 0.742 (95% CI: 0.637–0.846) and 0.723 (95% CI: 0.550–0.896), respectively. After combining clinical features to the delta-radiomics model, the efficacy of the combined model (AUC = 0.932) in the training cohort was significantly higher than that of both the delta-radiomic model (Delong p = 0.017) and the clinical model (Delong p < 0.001) individually. Additionally, in the validation cohort, the combined model had the highest AUC (0.859) of any of the models we tested although this was not statistically different from any other individual model's validation AUC. Calibration and decision curves showed a good agreement and a high clinical benefit for the combined model. Conclusion: This preliminary study indicates that ALN-based delta-radiomic model combined with clinical features is a promising strategy for the early prediction of downstaging ALN status after NAC. Future axillary MRI applications need to be further explored. [ABSTRACT FROM AUTHOR]

Background: At present, there are multiple hypotheses regarding the mechanisms underlying the effect of exercise on the postoperative inflammatory factors and the IGF system among breast cancer patients, especially. To determine the underlying mechanisms, prevent the recurrence of breast cancer and improve its prognosis, this paper will systematically evaluate the impact of exercise on inflammatory factors and the IGF system in breast cancer survivors. Methods: The PubMed, Embase, Web of Science, CNKI, Wanfang and VIP (Chinese scientific and technical journals) databases were systematically searched until April 2021. The search terms included 'exercise', 'inflammatory factor', 'IGF system' and 'breast cancer'. A total of 1066 relevant articles were retrieved. The articles were screened according to inclusion and exclusion criteria, such as study population, intervention method and type of experiment, and 11 articles were ultimately included. All statistical results were analysed using STATA 14.0 and Rstudio 4.1.1. Results: We found that exercise significantly reduced the level of IGF-1 (WMD, -19.947 ng/ml; 95% CI, -22.669 to -17.225; P = 0.000). Subgroup analysis showed that in the studies with an intervention period > 12 weeks, exercise significantly reduced IL-6 levels (WMD, -0.761 pg/ml; 95% CI, -1.369 to -0.153; p = 0.014), while in the studies with an intervention period ≤ 12 weeks, exercise significantly reduced CRP (WMD, -2.381 mg/L; 95% CI, -4.835 to 0.073, P = 0.001) and IL-10 levels (WMD, -7.141 pg/ml, 95% CI, -10.853 to -3.428; P = 0.000). In addition, aerobic exercise plus resistance training significantly reduced IL-6 levels (WMD, -1.474 pg/ml; 95% CI, -1.653 to -1.296; P = 0.000). The results of the sensitivity analysis showed that after excluding the studies with high heterogeneity, exercise significantly reduced the TNF-α levels in patients with breast cancer (WMD, -1.399 pg/ml; 95% CI, -1.718 to -1.080; P = 0.000). Conclusion: Exercise reduces the postoperative levels of IGF-1, IL-6, CRP, IL-10 and TNF-α among patients with breast cancer, which may have a significant impact on inhibiting breast cancer recurrence and improving its prognosis. Future studies should examine the effects of different durations and types of exercise to develop individualized exercise prescriptions for breast cancer patients. [ABSTRACT FROM AUTHOR]

Background: Cancer patient pathways (CPPs) were introduced in Norway in 2015. CPPs are time-bound standardised care pathways that describe the organisation of and responsibilities for diagnostics and treatment, as well as communication with the patient and next of kin. The aim is to ensure that cancer patients experience a well-organised, coherent and predictable pathway without any delays in assessment and diagnostics caused by non-medical reasons. Preventing delays in diagnostics by meeting specific target times is central to the successful implementation of CPPs. The aim of this paper is to describe how hospital staff cope with the increased focus on meeting CPP target times and the measures and strategies implemented by hospitals and their staff.Methods: Data for this paper were collected in a larger study on implementation and experiences with CPPs among hospital staff, general practitioners, and patients in Norway (2017-2020). The study had a qualitative cross-sectional design, and data were collected through interviews. This article is based on semi-structured interviews with hospital staff (N = 60) in five hospitals.Results: Hospital staff are highly aware of the target times, and try to comply with them, in the interest of both the patients and the hospitals. The implementation of CPPs was not accompanied by the allocation of additional resources; therefore, hospitals could not simply increase capacity to meet the target times. Instead, they had to develop other strategies. Four categories of strategies were identified: (i) introducing new roles and more staff, (ii) reorganising the workflow, (iii) gaming the system and (iv) outsourcing services.Conclusions: Hospital staff are torn between meeting the target times and a lack of resources and capacity. This is not unusual in the current healthcare context, where staff face organisational reforms and increasing demands on a regular basis. It is important to recognise frontline workers' efforts towards realising new organisational changes. Therefore, carefully weighing the benefits against the costs and undertaking the necessary planning are important in the design and implementation of future care and treatment pathways for patients. [ABSTRACT FROM AUTHOR]

Background: Patients diagnosed with cancer are at higher risk of anxiety, depression, and overall distress. These mood disturbances are risk factors for non-adherence to cancer treatment, increased length of stay during hospital admissions, increased number of visits to the emergency department, and also impact survival. Although paper handouts about the potential side effects are widely used in the oncology practice studies have shown that digital educational material is known to work better when compared to traditional methods. However, the impact of video education on anxiety, depression, and distress have not been previously evaluated. Our study aimed to assess whether video education about potential chemotherapy and immunotherapy can reduce anxiety, depression, and distress levels. Methods: After IRB approval, we enrolled patients who were fluent in English, younger than 80 years of age, and who were able to provide informed consent. The Hospital Anxiety and Depression Scale and Distress Thermometer were used to assess distress, as well as depression and anxiety before and after watching video educational material. Paired t-test was used to compare the differences between the scores before and after watching educational videos. The statistical software GraphPad Prism 9, San Diego, California, was used to perform the statistical analysis. Results: We enrolled 29 patients, of whom 20 completed the study, six withdrew, two were lost to follow-up, and one did not complete the initial questionnaire. Of all patients that completed the study 85% of the patient found videos helpful, and they were 7/10 likely to recommend them to other patients who may experience symptoms. The mean depression score changed from 4.75 before to 4.9 after watching the videos (p 0.77), distress score from 2.3 to 2.65 (p 0.52), and anxiety scores changed from 4.85 to 6.15 (p 0.03). The feedback provided by the patients indicated that they were more willing to watch the videos related to the side effects they experienced at their free time and convenience. Conclusions: Our study suggests that patients were open to video education and found it helpful and worth watching. However, the exposure of the patients to the videos about potential side effects of cancer treatment, including those patients do not experience, may lead to increased anxiety. [ABSTRACT FROM AUTHOR]

Introduction: Oral cancer patients suffer severe chronic and mechanically-induced pain at the site of the cancer. Our clinical experience is that oral cancer patients report new sensitivity to spicy foods. We hypothesized that in cancer patients, mechanical and chemical sensitivity would be greater when measured at the cancer site compared to a contralateral matched normal site.Methods: We determined mechanical pain thresholds (MPT) on the right and left sides of the tongue of 11 healthy subjects, and at the cancer and contralateral matched normal site in 11 oral cancer patients in response to von Frey filaments in the range of 0.008 to 300 g (normally not reported as painful). We evaluated chemical sensitivity in 13 healthy subjects and seven cancer patients, who rated spiciness/pain on a visual analog scale in response to exposure to six paper strips impregnated with capsaicin (0-10 mM).Results: Mechanical detection thresholds (MDT) were recorded for healthy subjects, but not MPTs. By contrast, MPTs were measured at the site of the cancer in oral cancer patients (7/11 patients). No MPTs were measured at the cancer patients' contralateral matched normal sites. Measured MPTs were correlated with patients' responses to the University of California Oral Cancer Pain Questionnaire. Capsaicin sensitivity at the site of the cancer was evident in cancer patients by a leftward shift of the cancer site capsaicin dose-response curve compared to that of the patient's contralateral matched normal site. We detected no difference in capsaicin sensitivity on the right and left sides of tongues of healthy subjects.Conclusions: Mechanical and chemical sensitivity testing was well tolerated by the majority of oral cancer patients. Sensitivity is greater at the site of the cancer than at a contralateral matched normal site. [ABSTRACT FROM AUTHOR]

Background: Patients with colorectal cancer (CRC) are more likely to develop severe course of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection and experience increased risk of mortality compared to SARS-CoV-2 patients without CRC. Objectives: To estimate the prevalence of SARS-CoV-2 infection in CRC patients and analyse the demographic parameters, clinical characteristics and treatment outcomes in CRC patients with COVID-19 illness. Methods: For this systematic review and meta-analysis, we searched Proquest, Medline, Embase, Pubmed, CINAHL, Wiley online library, Scopus and Nature for studies on the incidence of SARS-CoV-2 infection in CRC patients, published from December 1, 2019 to December 31, 2021, with English language restriction. Effect sizes of prevalence were pooled with 95% confidence intervals (CIs). Sub-group analyses were performed to minimize heterogeneity. Binary logistic regression model was used to explore the effect of various demographic and clinical characteristics on patient's final treatment outcome (survival or death). Results: Of the 472 papers that were identified, 69 articles were included in the systematic review and meta-analysis (41 cohort, 16 case-report, 9 case-series, 2 cross-sectional, and 1 case-control studies). Studies involving 3362 CRC patients with confirmed SARS-CoV-2 (all patients were adults) were analyzed. The overall pooled proportions of CRC patients who had laboratory-confirmed community-acquired and hospital-acquired SARS-CoV-2 infections were 8.1% (95% CI 6.1 to 10.1, n = 1308, 24 studies, I2 98%, p = 0.66), and 1.5% (95% CI 1.1 to 1.9, n = 472, 27 studies, I2 94%, p < 0.01). The median patient age ranged from 51.6 years to 80 years across studies. The majority of the patients were male (n = 2243, 66.7%) and belonged to White (Caucasian) (n = 262, 7.8%), Hispanic (n = 156, 4.6%) and Asian (n = 153, 4.4%) ethnicity. The main source of SARS-CoV-2 infection in CRC patients was community-acquired (n = 2882, 85.7%; p = 0.014). Most of those SARS-CoV-2 patients had stage III CRC (n = 725, 21.6%; p = 0.036) and were treated mainly with surgical resections (n = 304, 9%) and chemotherapies (n = 187, 5.6%), p = 0.008. The odd ratios of death were significantly high in patients with old age (≥ 60 years) (OR 1.96, 95% CI 0.94–0.96; p < 0.001), male gender (OR 1.44, 95% CI 0.41–0.47; p < 0.001) CRC stage III (OR 1.54, 95% CI 0.02–1.05; p = 0.041), CRC stage IV (OR 1.69, 95% CI 0.17–1.2; p = 0.009), recent active treatment with chemotherapies (OR 1.35, 95% CI 0.5–0.66; p = 0.023) or surgical resections (OR 1.4, 95% CI 0.8–0.73; p = 0.016) and admission to ICU (OR 1.88, 95% CI 0.85–1.12; p < 0.001) compared to those who survived. Conclusion: SARS-CoV-2 infection in CRC patient is not uncommon and results in a mortality rate of 26.2%. Key determinants that lead to increased mortality in CRC patients infected with COVID-19 include older age (≥ 60 years old); male gender; Asian and Hispanic ethnicity; if SARS-CoV-2 was acquired from hospital source; advanced CRC (stage III and IV); if patient received chemotherapies or surgical treatment; and if patient was admitted to ICU, ventilated or experienced ARDS. [ABSTRACT FROM AUTHOR]

Background: The current study aimed to further our understanding of second opinions among medical oncology patients by examining the proportion of patients who sought a second opinion about their cancer treatment, and why. Methods: The study was conducted between 2013 and 2015 in three medical oncology clinics located in public hospitals in Australia: in metropolitan New South Wales, metropolitan Queensland, and in Tasmania. Those patients who provide written informed consent were asked to complete a brief paper and pencil survey in the clinic containing questions on sociodemographic, disease and treatment characteristics. Approximately 1 month later, participants were mailed a second paper and pencil survey which contained questions about whether they had sought a second opinion and their motivation for doing so. Non-responders were followed up by letter at 3 and 6 weeks. Results: Of 823 patients screened for eligibility, 698 eligible patients, 612 provided consent. Of those who consented, 355 completed both the initial survey and the second survey and were included in the analyses. Of the 57 patients who sought a second opinion, the most frequent reasons given for doing so were the need for reassurance (49.1%) and the need to consider the range of treatment options (41.8%). Of the 297 (83.6%) participants who did not seek a second opinion, the main reason was confidence in the first doctor (88.7%). Only 3.1% patients did not know that they could ask for a second opinion. Occasionally the doctor will initiate the referral for a second opinion. Conclusions: Our study suggests that a minority of cancer patients seek a second opinion at some phase during their care. Most did so for reassurance or to ensure that they had covered all of the treatment options and not because of discomfort or distrust of their treating doctor. Few patients reported a lack of awareness of second opinions. This suggests that second opinions form part of a patient-centred approach to information provision about care options. Whether the second opinion improves the quality of care or indeed outcomes has been difficult to demonstrate. [ABSTRACT FROM AUTHOR]

Background: In ageing Western societies, many older persons live with and die from cancer. Despite that present-day healthcare aims to be patient-centered, scientific literature has little knowledge to offer about how cancer and its treatment impact older persons' various outlooks on life and underlying life values. Therefore, the aims of this paper are to: 1) describe outlooks on life and life values of older people (≥ 70) living with incurable cancer; 2) elicit how healthcare professionals react and respond to these. Methods: Semi-structured qualitative interviews with 12 older persons with advanced cancer and two group interviews with healthcare professionals were held and followed by an analysis with a grounded theory approach. Results: Several themes and subthemes emerged from the patient interview study: a) handling incurable cancer (the anticipatory outlook on "a reduced life", hope and, coping with an unpredictable disease) b) being supported by others ("being there", leaving a legacy, and having reliable healthcare professionals) and; c) making end-of-life choices (anticipatory fears, and place of death). The group interviews explained how healthcare professionals respond to the abovementioned themes in palliative care practice. Some barriers for (open) communication were expressed too by the latter, e.g., lack of continuity of care and advance care planning, and patients' humble attitudes. Conclusions: Older adults living with incurable cancer showed particular outlooks on life and life values regarding advanced cancer and the accompanying last phase of life. This paper could support healthcare professionals and patients in jointly exploring and formulating these outlooks and values in the light of treatment plans. [ABSTRACT FROM AUTHOR]

Background: Clinical Practice Guidelines (CPGs) synthesize the best available evidence to guide clinician and patient decision making. There are a multitude of barriers and facilitators to clinicians adhering to CPGs; however, little is known about active cancer treatment CPG adherence specifically. This systematic review sought to identify clinician attitudes, and perceived barriers and facilitators to active cancer treatment CPG adherence.Methods: A systematic search was undertaken of five databases; Ovid Medline, PsychInfo, Embase, Scopus, CINAHL, and PROQUEST. The retrieved abstracts were screened for eligibility against inclusion criteria, and a full text review was conducted of all eligible studies. Data were extracted, and a quality assessment was conducted of all included studies. The qualitative papers were thematically analyzed. Attitudes, barriers, and facilitating factors extracted from the quantitative papers were categorized within the qualitative thematic framework.Results: The search resulted in the identification of 9676 titles. After duplicates were removed, abstracts screened, and full texts reviewed, 15 studies were included. Four themes were identified which related to negative clinician attitudes and barriers to active cancer treatment CPG adherence: (1) concern over CPG content and currency of CPGs; (2) concern about the evidence underpinning CPGs; (3) clinician uncertainty and negative perceptions of CPGs; and (4) organizational and patient factors. The review also identified four themes related to positive attitudes and facilitators to active cancer treatment CPG adherence: (5) CPG accessibility and ease of use; (6) endorsement and dissemination of CPGs and adequate access to treatment facilities and resources; (7) awareness of CPGs and belief in their relevance; and (8) belief that CPGs support decision making, improve patient care, reduce clinical variation, and reduce costs.Conclusion: These results highlight that adherence to active cancer treatment CPG recommendations by oncology clinicians is influenced by multiple factors such as attitudes, practices, and access to resources. The review has also revealed many similarities and differences in the factors associated with general CPG, and active cancer treatment CPG, adherence. These findings will inform tailored implementation strategies to increase adherence to cancer treatment CPGs.Trial Registration: PROSPERO (2019) CRD42019125748. [ABSTRACT FROM AUTHOR]

Background: Patients with metastatic breast cancer (MBC) are treated with a palliative approach with focus on controlling for disease symptoms and maintaining high quality of life. Information on individual needs of patients and their relatives as well as on treatment patterns in clinical routine care for this specific patient group are lacking or are not routinely documented in established Cancer Registries. Thus, we developed a registry concept specifically adapted for these incurable patients comprising primary and secondary data as well as mobile-health (m-health) data. Methods: The concept for patient-centered "Breast cancer care for patients with metastatic disease" (BRE-4-MED) registry was developed and piloted exemplarily in the region of Main-Franconia, a mainly rural region in Germany comprising about 1.3 M inhabitants. The registry concept includes data on diagnosis, therapy, progression, patient-reported outcome measures (PROMs), and needs of family members from several sources of information including routine data from established Cancer Registries in different federal states, treating physicians in hospital as well as in outpatient settings, patients with metastatic breast cancer and their family members. Linkage with routine cancer registry data was performed to collect secondary data on diagnosis, therapy, and progression. Paper and online-based questionnaires were used to assess PROMs. A dedicated mobile application software (APP) was developed to monitor needs, progression, and therapy change of individual patients. Patient's acceptance and feasibility of data collection in clinical routine was assessed within a proof-of-concept study. Results: The concept for the BRE-4-MED registry was developed and piloted between September 2017 and May 2018. In total n = 31 patients were included in the pilot study, n = 22 patients were followed up after 1 month. Record linkage with the Cancer Registries of Bavaria and Baden-Württemberg demonstrated to be feasible. The voluntary APP/online questionnaire was used by n = 7 participants. The feasibility of the registry concept in clinical routine was positively evaluated by the participating hospitals. Conclusion: The concept of the BRE-4-MED registry provides evidence that combinatorial evaluation of PROMs, needs of family members, and raising clinical parameters from primary and secondary data sources as well as m-health applications are feasible and accepted in an incurable cancer collective. [ABSTRACT FROM AUTHOR]

Background: To date, no paper reports cases of lymphangitis after COVID 19 vaccination. We present a case of lymphangitis after vaccination from COVID 19, in a patient with colorectal liver metastases. Methods: We described the case of a 56-year-old woman with history of a surgical resection of colorectal cancer and liver metastases, without any kind of drug therapy for about a month. In addition, a recent administration (2 days ago) of Spikevax (mRNA-1273, Moderna vaccine), as a booster dose, on the right arm was reported. Results: The magnetic resonance (MR) examination showed the effects of the previous surgical resection and five new hepatic metastases, located in the VIII, VI, V, IV and II hepatic segments. As an accessory finding the presence of lymphadenopathy in the axillary area and lymphangitis of the right breast and chest were identified. The computed tomography scan performed a week earlier, and re-evaluated in light of the MR data, did not identify the presence of lymphadenopathy in the axillary area and lymphangitis signs. Conclusions: Lymphangitis could occur after COVID 19 vaccine and it is important to know this data to avoid alarmism in patients and clinicians and economic waste linked to the execution of various radiological investigations for the search for a tumour that probably does not exist. Trial registration: Not applicable. [ABSTRACT FROM AUTHOR]

Background: Despite evidence of the positive impact of routine assessment of patient-reported outcome measures (PROMs), their systematic collection is not widely implemented in cancer care.Aim: To assess the knowledge, use and attitudes of healthcare professionals (HCPs) towards PROMs and electronically collected PROMs (ePROMs) in clinical practice and research and to explore respondent-related factors associated with the above dimensions.Method: An ad hoc developed online survey was administered to all HCPs employed in clinical activity in an Italian comprehensive cancer center. The survey investigated which PROMs were known and used, as well as HCPs' opinions on the advantages and drawbacks of routine PROM assessment, including electronic assessment (ePROM). Linear and logistic regression models were used for association analyses.Results: Five Hundred Eleven of nine hundred ninety-two invited HCPs (52%) provided analyzable responses. 68% were women, 46% were nurses and 42% physicians, and 52.5% had > 20 years seniority. The average number of PROMs known was six among 17 proposed. All proved to be under-used (< 28%) except unidimensional and multidimensional pain scales (77 and 36%). Respondents expressed an overall positive attitude towards PROMs, with strengths outweighing weaknesses (mean overall scores 3.6 and 2.9, respectively, on a 1-5 scale). 67% of respondents preferred electronic collection over paper and pencil. Profession was associated with knowledge and use (physicians reported knowing more PROMs than other professionals) and with a preference for electronic collection (nurses were less likely to prefer the electronic format than physicians). Senior HCPs were slightly more critical about both PROMs and electronic administration.Conclusions: This survey indicates an acceptable level of knowledge of common PROM tools but low usage in practice. Based on the generally positive attitude of HCPs, routine implementation of ePROMs can be promoted as long as adequate resources and training are provided.Trial Registration: Not registered. [ABSTRACT FROM AUTHOR]

Background: To synthesise EQ5D health state utility values in Chinese women with breast cancer for parameterising a cost utility model.Methods: Eligible studies had to report health state utility values measured by EQ-5D in Chinese women diagnosed with breast cancer. Risk of bias was assessed using the Newcastle Ottawa Scale (NOS). Data from single arm studies was pooled using meta-analysis of single proportions to provide overall point estimates and 95% confidence intervals for fixed and random effects models using the inverse variance and Der Simonian-Laird methods respectively. Heterogeneity was evaluated using the I2 statistic and sensitivity analysis and meta-regression were conducted.Results: Five papers were included, when all studies were combined (n = 4,100) the mean utility (95% confidence interval) for random effects model was 0.83 (0.78, 0.89); for TNM 0-1 0.85 (0.75, 0.95); for TNM II 0.85 (0.78, 0.93); for TNM III 0.83 (0.77, 0.90) and for TNM IV 0.73 (0.63, 0.82).The utility of patients in State P (first year after primary breast cancer) 0.84 (0.80, 0.88); in State R (first year after recurrence) 0.73 (0.69, 0.76), in State S (second and following years after primary breast cancer or recurrence) 0.88 (0.83, 0.92); and in State M (metastatic disease) 0.78 (0.74, 0.82). Mean utility for duration since diagnosis 13 to 36 months was 0.88 (0.80, 0.96, I2 =95%); for 37 to 60 months 0.89 (0.82, 0.96, I2 =90%); for more than 60 months 0.86 (0.76, 0.96, I2 =90%). Mean utility for chemotherapy was 0.86 (0.79, 0.92, I2 =97%); for radiotherapy 0.83 (0.69, 0.96, I2 =97%); surgery 0.80 (0.69, 0.91, I2 =98%); concurrent chemo-radiation 0.70 (0.60, 0.81, I2 =86%) and endocrine therapy 0.90 (0.83, 0.97, I2 =91%).Conclusion: This study synthesises the evidence for health state utility values for Chinese women with breast cancer which is useful to inform cost utility models. [ABSTRACT FROM AUTHOR]

Background: Ensuring fair comparisons of cancer survival statistics across population groups requires careful consideration of differential competing mortality due to other causes, and adjusting for imbalances over groups in other prognostic covariates (e.g. age). This has typically been achieved using comparisons of age-standardised net survival, with age standardisation addressing covariate imbalance, and the net estimates removing differences in competing mortality from other causes. However, these estimates lack ease of interpretability. In this paper, we motivate an alternative non-parametric approach that uses a common rate of other cause mortality across groups to give reference-adjusted estimates of the all-cause and cause-specific crude probability of death in contrast to solely reporting net survival estimates.Methods: We develop the methodology for a non-parametric equivalent of standardised and reference adjusted crude probabilities of death, building on the estimation of non-parametric crude probabilities of death. We illustrate the approach using regional comparisons of survival following a diagnosis of rectal cancer for men in England. We standardise to the covariate distribution and other cause mortality of England as a whole to offer comparability, but with close approximation to the observed all-cause region-specific mortality.Results: The approach gives comparable estimates to observed crude probabilities of death, but allows direct comparison across population groups with different covariate profiles and competing mortality patterns. In our illustrative example, we show that regional variations in survival following a diagnosis of rectal cancer persist even after accounting for the variation in deprivation, age at diagnosis and other cause mortality.Conclusions: The methodological approach of using standardised and reference adjusted metrics offers an appealing approach for future cancer survival comparison studies and routinely published cancer statistics. Our non-parametric estimation approach through the use of weighting offers the ability to estimate comparable survival estimates without the need for statistical modelling. [ABSTRACT FROM AUTHOR]

Background: Cancer care can negatively impact children's subjective well-being. In this research, well-being refers to patients' self-perception and encompasses their hospital and care delivery assessment. Playful strategies can stimulate treatment compliance and have been used to provide psychosocial support and health education; they can involve gamification, virtual reality, robotics, and healthcare environments. This study aims to identify how playfulness, whenever applicable, can be used as a strategy to improve the subjective well-being of pediatric cancer patients in the Brazilian Unified Health System.Methods: Sixteen volunteers with experience in pediatric oncology participated in the study. They were physicians, psychologists, child life specialists, and design thinking professionals. They engaged in design thinking workshops to propose playful strategies to improve the well-being of pediatric cancer patients in the Brazilian Unified Health System. Data collection consisted of participatory observations. All activities were video recorded and analyzed through Thematic Analysis. The content generated by the volunteers was classified into two categories: impact of cancer care on children's self-perception and children's perceptions of the hospital and the care delivery.Results: Volunteers developed strategies to help children deal with time at the hospital, hospital structure, and care delivery. Such strategies are not limited to using playfulness as a way of "having fun"; they privilege ludic interfaces, such as toys, to support psychosocial care and health education. They aim to address cancer and develop communication across families and staff in a humanized manner, educate families about the disease, and design children-friendly environments. Volunteers also generated strategies to help children cope with perceptions of death, pain, and their bodies. Such strategies aim to support understanding the meaning of life and death, comprehend pain beyond physicality, help re-signify cancer and children's changing bodies, and give patients active voices during the treatment.Conclusions: The paper proposes strategies that can improve the well-being of pediatric cancer patients in the Brazilian Unified Health System. Such strategies connect children's experiences as inpatients and outpatients and may inform the implementation of similar projects in other developing countries. [ABSTRACT FROM AUTHOR]