Cancer-related cognitive impairment in patients with non-central nervous system malignancies: an overview for oncology providers from the MASCC Neurological Complications Study Group.

Cancer-related cognitive impairment (CRCI) is commonly experienced by individuals with non-central nervous system cancers throughout the disease and treatment trajectory. CRCI can have a substantial impact on the functional ability and quality of life of patients and their families. To mitigate the impact, oncology providers must know how to identify, assess, and educate patients and caregivers. The objective of this review is to provide oncology clinicians with an overview of CRCI in the context of adults with non-central nervous system cancers, with a particular focus on current approaches in its identification, assessment, and management.

A journey through roses and thorns: becoming a physician by learning from patients with life-threatening illnesses. A qualitative study with international medical students.

The medical students' well-being may be threatened by various stressors associated with providing care to different kinds of patients. This study aims to explore students' clinical experiences with patients who suffer from life-threatening illnesses, focusing on potential risk and protective factors. Audio-recorded and face-to-face interviews were conducted and transcribed verbatim. The "Interpretive Description" approach was used to analyse data. Overall, ten medical students with a mean age of 28 years old were interviewed. Well-being promoting factors were the following: therapeutic relationships, work-life balance, social support and communication, perception of improvement in knowledge and availability of advanced directives. Whilst factors that may reduce well-being included death exposure, managing emotions, communication difficulties, internal conflicts and disagreements, lack of knowledge and subjective concerns. These findings shed light on facets that are inherent parts of clinical experience with patients suffering from a life-threatening illness and that may turn in risk or protective factors for the medical students. Understanding the students' subjective experiences may aid in the improvement of the current educational programs, as well as in the development of tailored supportive and preventative interventions to promote well-being and professional competencies among this kind of students.

Systematic Review of Mind-Body Interventions to Treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Background and Objectives: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic condition distinguished by disabling fatigue associated with post-exertional malaise, as well as changes to sleep, autonomic functioning, and cognition. Mind-body interventions (MBIs) utilize the ongoing interaction between the mind and body to improve health and wellbeing. Purpose: To systematically review studies using MBIs for the treatment of ME/CFS symptoms. Materials and Methods: MEDLINE, EMBASE, CINAHL, PsycINFO, and Cochrane CENTRAL were searched (inception to September 2020). Interventional studies on adults diagnosed with ME/CFS, using one of the MBIs in comparison with any placebo, standard of care treatment or waitlist control, and measuring outcomes relevant to the signs and symptoms of ME/CFS and quality of life were assessed for inclusion. Characteristics and findings of the included studies were summarized using a descriptive approach. Results: 12 out of 382 retrieved references were included. Seven studies were randomized controlled trials (RCTs) with one including three reports (1 RCT, 2 single-arms); others were single-arm trials. Interventions included mindfulness-based stress reduction, mindfulness-based cognitive therapy, relaxation, Qigong, cognitive-behavioral stress management, acceptance and commitment therapy and isometric yoga. The outcomes measured most often were fatigue severity, anxiety/depression, and quality of life. Fatigue severity and symptoms of anxiety/depression were improved in nine and eight studies respectively, and three studies found that MBIs improved quality of life. Conclusions: Fatigue severity, anxiety/depression and physical and mental functioning were shown to be improved in patients receiving MBIs. However, small sample sizes, heterogeneous diagnostic criteria, and a high risk of bias may challenge this result. Further research using standardized outcomes would help advance the field.

Experiences of shared decision-making in community rehabilitation: a focused ethnography.

BACKGROUND: Shared decision-making (SDM) can advance patient satisfaction, understanding, goal fulfilment, and patient-reported outcomes. We lack clarity on whether this physician-focused literature applies to community rehabilitation, and on the integration of SDM policies in healthcare settings. We aimed to understand patient and provider perceptions of shared decision-making (SDM) in community rehabilitation, particularly the barriers and facilitators to SDM. METHODS: We used a focused ethnography involving 14 community rehabilitation sites across Alberta, including rural, regional-urban and metropolitan-urban sites. We conducted semi-structured interviews that asked participants about their positive and negative communication experiences (n = 23 patients; n = 26 providers). RESULTS: We found SDM experiences fluctuated between extremes: Getting Patient Buy-In and Aligning Expectations. The former is provider-driven, prescriptive and less flexible; the latter is collaborative, inquisitive and empowering. In Aligning Expectations, patients and providers express humility and openness, communicate in the language of ask and listen, and view education as empowering. Patients and providers described barriers and facilitators to SDM in community rehabilitation. Facilitators included geography influencing context and connections; consistent, patient-specific messaging; patient lifestyle, capacity and perceived outlook; provider confidence, experience and perceived independence; provider training; and perceptions of more time (and control over time) for appointments. SDM barriers included lack of privacy; waitlists and financial barriers to access; provider approach; how choices are framed; and, patient's perceived assertiveness, lack of capacity, and level of deference. CONCLUSIONS: We have found both excellent experiences and areas for improvement for applying SDM in community rehabilitation. We proffer recommendations to advance high-quality SDM in community rehabilitation based on promoting facilitators and overcoming barriers. This research will support the spread, scale and evaluation of a new Model of Care in rehabilitation by the provincial health system, which aimed to promote patient-centred care.

Patient Portal Implementation and Uptake: Qualitative Comparative Case Study.

BACKGROUND: Giving patients access to their health information is a provincial and national goal, and it is critical to the delivery of patient-centered care. With this shift, patient portals have become more prevalent. In Alberta, the Alberta Health Services piloted a portal (MyChart). There was a need to identify factors that promoted the use of this portal. Furthermore, it was imperative to understand why there was variability in uptake within the various clinics that participated in the pilot. OBJECTIVE: This study aims to identify potential factors that could improve the uptake of MyChart from the perspectives of both users and nonusers at pilot sites. We focused on factors that promoted the use of MyChart along with related benefits and barriers to its use, with the intention that this information could be incorporated into the plan for its province-wide implementation. METHODS: A qualitative comparative case study was conducted to determine the feasibility, acceptability, and initial perceptions of users and to identify ways to increase uptake. Semistructured interviews were conducted with 56 participants (27 patients, 21 providers, 4 nonmedical staff, and 4 clinic managers) from 5 clinics. Patients were asked about the impact of MyChart on their health and health care. Providers were asked about the impact on the patient-provider relationship and workflow. Managers were asked about barriers to implementation. The interviews were recorded, transcribed verbatim, and entered into NVivo. A thematic analysis was used to analyze the data. RESULTS: Results from a comparison of factors related to uptake of MyChart in 5 clinics (2 clinics with high uptake, 1 with moderate uptake, 1 with low uptake, and 1 with no uptake) are reported. Some theoretical constructs in our study, such as intention to use, perceived value, similarity (novelty) of the technology, and patient health needs, were similar to findings published by other research teams. We also identified some new factors associated with uptake, including satisfaction or dissatisfaction with the current status quo, performance expectancy, facilitating conditions, behavioral intentions, and use behavior. All these factors had an impact on the level of uptake in each setting and created different opportunities for end users. CONCLUSIONS: There is limited research on factors that influence the uptake of patient portals. We identified some factors that were consistent with those reported by others but also several new factors that were associated with the update of MyChart, a new patient portal, in the clinics we studied. On the basis of our results, we posit that a shared understanding of the technology among patients, clinicians, and managers, along with dissatisfaction with nonportal-based communications, is foundational and must be addressed for patient portals to support improvements in care.

Tracing the Decisions That Shaped the Development of MyChart, an Electronic Patient Portal in Alberta, Canada: Historical Research Study.

BACKGROUND: Understanding how health organizations decide on information technology (IT) investments is imperative to ensure successful implementation and adoption. There is a high rate of failure and a tendency to downplay the complexity of implementation progression. Alberta Health Services introduced a patient portal called MyChart. Although MyChart allows patients to view appointments and selected laboratory results and to communicate with their providers, its uptake varies. OBJECTIVE: The study aimed to examine the institutional decision-making processes that shaped the development and implementation of MyChart. METHODS: A historical study was conducted based on the 7-step framework, where one engages in a rigorous archival critical analysis (including internal and external criticism) of documents and analysis of interviews. We reviewed and analyzed 423 primary and secondary sources and interviewed 10 key decision makers. RESULTS: Supportive leadership, project management, focused scope, appropriate technology and vendor selection, and quick decision making were some of the facilitators that allowed for the growth of proof of concept. The planning and implementation stages did not depend much on the technology itself but on the various actors who influenced the implementation by exerting power. The main barriers were lack of awareness about the technology, proper training, buy-in from diverse system leaders, and centralized government decision making. CONCLUSIONS: Organizational priorities and decision-making tactics influence IT investments, implementation, adoption, and outcomes. Future research could focus on improving the applicability of needs assessments and funding decisions to health care scenarios.

Association of plasma leptin, pro-inflammatory adipokines and cancer-related fatigue in early-stage breast cancer patients: A prospective cohort study.

Cancer-related fatigue (CRF) is subjective and has wide inter-individual variability. Given that leptin is commonly associated with fatigue syndrome, its use as a potential biomarker for CRF is being investigated. The primary objective of this study was to evaluate the association between leptin and CRF in early-stage breast cancer patients receiving chemotherapy. In a prospective cohort study, patients completed assessments at baseline (T1), during chemotherapy (T2) and after chemotherapy (T3). Levels of plasma leptin and adipokines were measured using a Luminex bead-immunoassay and CRF was measured using the Multi-Dimensional Fatigue Symptom Inventory-Short Form (MFSI-SF). Data were analysed longitudinally using a generalised estimating equation incorporating clinically relevant parameters and pro-inflammatory adipokines. The analysis included 136 patients (mean age ± SD = 51.5 ± 8.8 years; 69.1% receiving anthracycline-based chemotherapy). More patients experienced CRF at T3 (23.8%) than at T2 (13.8%) compared to baseline. An increase was observed in the median plasma leptin level at T2, followed by a decrease at T3 (T1: 4.07 ng/mL, T2: 4.95 ng/mL and T3: 3.96 ng/mL). In the multivariate model, the change in leptin levels over time was significantly associated with the total MFSI-SF score (ß = -0.15, P = 0.003) after adjusting for the tumour necrosis factor-α (TNF-α) level, anxiety, depression, insomnia, age, menopausal status and type of chemotherapy. This is the first study to report leptin as a biomarker that predicts the onset of CRF over time. Future studies are required to validate the findings.

Tiredness, Fatigue, and Exhaustion as Perceived by Recreational Marathon Runners.

In this article, we report the results of a study that was part of a five-study concept development project. Our goal was to learn about the nature of illness by exploring variations in the manifestations of fatigue, a symptom that is prevalent in both ill (cancer, depression, chronic fatigue syndrome) and selected nonill (recreational marathon runners, shift workers) populations. In this article, we report results of our study of recreational marathon runners, obtained from unstructured interviews with 13 runners between the ages 19 and 49 years using ethnoscience as the design. Key findings with implications for practice are the importance of planning recovery periods following large energy expenditures, the value of using dissociative strategies to manage tiredness, and the usefulness of associative strategies and support systems to manage fatigue. Future studies could explore whether these strategies would be useful for management of tiredness and fatigue in other populations.

Assessing cognitive function in adults during or following chemotherapy: a scoping review.

PURPOSE: The purpose of this scoping review was to determine the feasibility of conducting a systematic review of approaches for screening or assessing cognitive function that were comprehensive and that could be incorporated into clinical settings. METHODS: Using the scoping review approach developed by Arksey and O'Malley, we searched Ovid Embase 1980-, Ovid PsycINFO 1806-, Ovid Health and Psychosocial Instruments 1985-, EBSCOhost CINAHL, ISI Web of Science (Science Citation Index 1900-), Social Sciences Citation Index 1900-, Conference Proceedings Citation Index -Science 1990-, Conference Proceedings Citation Index -Social Science & Humanities 1990-, Scopus 1960-, with no language restrictions. Searches were conducted in April 2009 and updated in February 2013. Studies of adults treated with chemotherapy that included at least seven of the eight domains of cognition were included. RESULTS: Eleven studies met inclusion criteria. No screening tools suitable for inclusion in a clinic were identified. The studies reviewed varied by inclusion/exclusion criteria, design, and instruments for assessing cognitive function, and thus, there are not yet enough studies to warrant a systematic review on this topic.

Translational research and symptom management in oncology nursing.

In recent years, translational research (TR) has become a new approach for bridging basic research and clinical practice. This article examines studies in which the authors used TR to learn more about the underlying causes of selected symptoms, and to discuss these results in the context of cancer nursing and symptom management. A literature review was undertaken, plus critical analysis of the authors. TR conducted by cancer nursing scholars has been relatively limited in the past, but is becoming more common as nurses complete additional academic work in the basic sciences and develop research teams with colleagues of those areas of knowledge. The goal in these studies is to show how a set of variables explains differential interventional effects. The availability of TR provides new evidence for the management of symptoms experienced by individuals with cancer, which could lead to improvements in the care of cancer patients across the world.

A state-of-the-art review of the management and treatment of taste and smell alterations in adult oncology patients.

PURPOSE: The purpose of this review was to examine studies of interventions for the prevention and management of taste and smell alterations (TSA) experienced by adult oncology patients. METHODS: Articles published between 1993 and 2013 were identified by searching CINAHL, MEDLINE and Food Science & Technology Abstracts (FSTA) and were included if they were in English and focused on adult oncology patients. Only interventions within the scope of nursing practice were reviewed. RESULTS: Twelve articles were identified for inclusion. Four research groups examined zinc supplementation, with two claiming that zinc supplementation was an effective intervention and two claiming it had no effect on TSA. The remaining research groups examined eight other interventions, with varying results. Marinol, megestrol acetate and Synsepalum dulcificum interventions appear promising. CONCLUSION: Based on this review, there does not yet appear to be an effective approach for preventing or managing TSA in adult oncology patients. Although some interventions show promise, further research is necessary to determine their efficacy.

The biology of cancer-related fatigue: a review of the literature.

PURPOSE: Understanding the etiology of cancer-related fatigue (CRF) is critical to identify targets to develop therapies to reduce CRF burden. The goal of this systematic review was to expand on the initial work by the National Cancer Institute CRF Working Group to understand the state of the science related to the biology of CRF and, specifically, to evaluate studies that examined the relationships between biomarkers and CRF and to develop an etiologic model of CRF to guide researchers on pathways to explore or therapeutic targets to investigate. METHODS: This review was completed by the Multinational Association of Supportive Care in Cancer Fatigue Study Group-Biomarker Working Group. The initial search used three terms (biomarkers, fatigue, cancer), which yielded 11,129 articles. After removing duplicates, 9145 articles remained. Titles were assessed for the keywords "cancer" and "fatigue" resulting in 3811 articles. Articles published before 2010 and those with samples <50 were excluded, leaving 75 articles for full-text review. Of the 75 articles, 28 were further excluded for not investigating the associations of biomarkers and CRF. RESULTS: Of the 47 articles reviewed, 25 were cross-sectional and 22 were longitudinal studies. More than half (about 70 %) were published recently (2010-2013). Almost half (45 %) enrolled breast cancer participants. The majority of studies assessed fatigue using self-report questionnaires, and only two studies used clinical parameters to measure fatigue. CONCLUSIONS: The findings from this review suggest that CRF is linked to immune/inflammatory, metabolic, neuroendocrine, and genetic biomarkers. We also identified gaps in knowledge and made recommendations for future research.

The Nature of Fatigue in Chronic Fatigue Syndrome.

In this article, we report the findings of our study on the nature of fatigue in patients diagnosed with chronic fatigue syndrome. Using ethnoscience as a design, we conducted a series of unstructured interviews and card sorts to learn more about how people with chronic fatigue syndrome describe fatigue. Participants (N = 14) described three distinct domains: tiredness, fatigue, and exhaustion. Most participants experienced tiredness prior to diagnosis, fatigue during daily life, and exhaustion after overexertion. We also discuss participants' ability to adapt to a variety of stressors and prevent shifts to exhaustion, and relate our findings to stress theory and other current research. Primary strategies that promoted adaptation to stressors included pacing and extended rest periods. These findings can aid health care professionals in detecting impending shifts between tiredness, fatigue, and exhaustion and in improving adaptive strategies, thereby improving quality of life.

A focused ethnographic assessment of Middle Eastern mothers' infant feeding practices in Canada.

The aim of this study was to examine the barriers to following complementary feeding guidelines among Middle Eastern mothers and the cultural considerations of practitioners from an emic perspective. This is a two-phase focused ethnographic assessment of infant feeding among 22 Middle Eastern mothers in Western Canada who had healthy infants aged <1 year. Data were collected through four focus groups conducted in Arabic/Farsi, and were further complemented by comprehensive survey data collected in the second phase of study. Mothers' main criterion for choosing infant foods was whether or not foods were Halal, while food allergens were not causes for concern. Vitamin D supplements were not fed to 18/22 of infants, and mashed dates (Halawi), rice pudding (Muhallabia/Ferni) and sugared water/tea were the first complementary foods commonly consumed. Through constant comparison of qualitative data, three layers of influence emerged, which described mothers' process of infant feeding: socio-cultural, health care system and personal factors. Culture was an umbrella theme influencing all aspects of infant feeding decisions. Mothers cited health care professionals' lack of cultural considerations and lack of relevance and practicality of infant feeding guidelines as the main reasons for ignoring infant feeding recommendations. Early introduction of pre-lacteal feeds and inappropriate types of foods fed to infants among immigrant/refugee Middle Eastern mothers in Canada is cause of concern. Involving trained language interpreters in health teams and educating health care staff on cultural competency may potentially increase maternal trust in the health care system and eventually lead to increased awareness of and adherence to best practices with infant feeding recommendations.

Comparing two approaches for studying symptom clusters: factor analysis and structural equation modeling.

PURPOSE: We investigated alternative ways of understanding the relationships among co-occurring symptoms in individuals with advanced cancer. While factor analysis has been increasingly used to identify symptom clusters, we argue that structural equation modeling is more appropriate because it permits investigating and testing of a greater variety of potential causal interconnections among symptoms. METHODS: The sample included 82 palliative patients whose symptom scores were obtained from a database of the Capital Health Regional Palliative Care Program in Alberta, Canada, from 1995 to 2000. Data were analyzed using exploratory factor analysis (SPSS PASW 18.0.0, 2009) and compared to previous results obtained using structural equation modeling (LISREL 8.8, 2009). RESULTS: Factor models failed to fit the covariance data, even though a single factor "explained" nearly half the variance. Structural equation models fit the data and explained an average of 66 % of the variance in the dependent latent variables. The factor analytic estimates were not clinically useful because they failed to correspond to the reasonable underlying common causes of the symptoms. Structural equation models, on the other hand, incorporated and tested specific clinically anticipated causal relationships among the symptoms and changes in those symptoms over time. CONCLUSION: We used factor analysis to reanalyze data previously investigated with structural equation modeling and found that the structural equation models fit the data better and were more interpretable from a clinical perspective. We caution that factor models should be tested for consistency with the data and critically examined for inconsistencies with clinical understandings of the causal foundations of coordinated symptoms.

The head and neck symptom checklist©: an instrument to evaluate nutrition impact symptoms effect on energy intake and weight loss.

PURPOSE: This study aimed to validate the Head and Neck Patient Symptom Checklist(©) (HNSC(©)) by tracing the prevalence and interference with eating of nutrition impact symptoms (NIS) over time and by examining relationships among NIS included in the HNSC, energy intake, and weight loss. METHODS: Height, weight, 3-day diet records, and HNSC(©) were obtained at baseline, posttreatment, and 2.5 month follow-up for 52 treatment-naive head and neck cancer (HNC) patients. Relationships among energy intake, weight loss, age, sex, treatment, tumor stage, and NIS were evaluated using general estimating equation (GEE) modeling. Cumulative hazard (CH) analysis was used to determine the time and risk of weight loss. RESULTS: From baseline to posttreatment, 71 % of patients had 5 % body weight loss. Despite energy intakes returning to baseline levels at follow-up, 88 % of patients continued to lose weight. At posttreatment, 100 % of patients reported 2 or more NIS (range 2-12); these symptoms were still present at follow-up in 83 % of the patients. Univariate GEE analysis demonstrated that most NIS predicted energy intake and weight loss, while multivariate GEE analysis showed that depression, dysphagia, and sore mouth predicted energy intake, and dysphagia and sore mouth predicted weight loss. CH analysis showed that NIS accelerated the time and probability of weight loss. CONCLUSIONS: The HNSC(©) is a valid tool for assessing NIS in HNC. Identification of NIS may aid in the management of symptoms associated with reduced energy intake and weight loss and thus decrease the malnutrition risk in HNC patients.

Validation of the Head and Neck Patient Symptom Checklist as a nutrition impact symptom assessment tool for head and neck cancer patients.

PURPOSE: The purpose of this study was to test the validity of the Head and Neck Patient Symptom Checklist (HNSC). METHODS: Three hundred and sixty-eight treatment-naive individuals with head and neck cancer prospectively completed the HNSC and the Patient-Generated Symptom Global Assessment (PG-SGA). The predictive validity was determined by comparing the HNSC symptoms interference scores to the PG-SGA scores. Multivariate logistic regression was used to determine the HNSC symptoms scores associated with reduced dietary intake, ≥ 5 % weight loss over 6 months, and reduced functional performance (FP). RESULTS: HNSC sensitivity (79-98 %), specificity (99-100 %), positive predictive value (92-100 %), and negative predictive value (94-100 %) were excellent, and the Cronbach's alpha coefficient was 0.92. The multivariate logistic regression showed that advanced tumor stage, pain, loss of appetite (LOA), and difficulty swallowing significantly predicted dietary intake. Advanced tumor stage, LOA, and difficulty swallowing were also significant predictors of ≥ 5 % weight loss over 6 months. LOA, difficulty swallowing, feeling full, and lack of energy were significant predictors of reduced FP. CONCLUSIONS: The HNSC appears to be a valid tool for determining symptoms interfering with dietary intake of head and neck cancer (HNC) patients. This instrument may aid in early identification of symptoms that place HNC patients at risk for reductions in dietary intake, weight, and functional performance.