Significance and structure of clinical research in the UK: an introduction for gastroenterology and hepatology nurses.

This is the first of two articles from the joint British Society of Gastroenterology Nurses association and Research Committee working group. The group is dedicated to signposting and improving access to research for specialist nurses working in gastroenterology and hepatology. This article is an introduction to the significance and structure of the National Institute for Health Research clinical research landscape in the UK and the importance of encouraging nurse engagement in research. This paper describes and 'demystifies' the clinical trials infrastructure in the UK, which is one of the most organised in the world. Going forwards this working group will organise and conduct educational events encouraging specialist nurses to become more aware of and engage in clinical research in their area of practice.

Unmet needs in people with high-grade glioma: Defining criteria for stepped care intervention.

BACKGROUND: We aimed to define levels of unmet supportive care needs in people with primary brain tumour and reach expert consensus on feasibility of addressing patients' needs in clinical practice. METHODS: We conducted secondary analysis of a prospective cohort study of people diagnosed with high-grade glioma (n = 116) who completed the Supportive Care Needs Survey-SF34 during adjuvant chemoradiation therapy. Participants were allocated to one of three categories: no need ('no need' for help on all items), low need ('low need' for help on at least one item, but no 'moderate' or 'high' need), or moderate/high need (at least one 'moderate' or 'high' need indicated). Clinical capacity to respond to the proportion of patients needing to be prioritised was assessed. RESULTS: Overall, 13% (n = 5) were categorised as no need, 23% (n = 27) low need, and 64% (n = 74) moderate/high need. At least one moderate/high need was reported in the physical and daily living domain (42%), and psychological (34%) domain. In recognition of health system capacity, the moderate/high need category was modified to distinguish between: moderate need ('moderate' need indicated for at least one item but 'high' need was not selected for any item) and high need (at least one 'high' need indicated). Results revealed 24% (n = 28) moderate need and 40% (n = 46) high need. Those categorised as high need indicated needing assistance navigating the health system and information. CONCLUSIONS: Using four step allocations resulted in 40% of patients indicating high need. Categories may facilitate appropriate triaging, and guide stepped models of healthcare delivery.

From ownership to custodianship of tumor biopsy tissue in genomic testing: a mixed methods study of patient views.

Tumor mutation profiling (MP) is often conducted on tissue from biopsies conducted for clinical purposes (diagnostic tissue). We aimed to explore the views of patients with cancer on who should own tumor biopsy tissue, pay for its storage, and decide on its future use; and determine their attitudes to and predictors of undergoing additional biopsies if required for research purposes. In this mixed methods, cross-sectional study, patients with advanced solid cancers enrolled in the Molecular Screening and Therapeutics Program (n = 397) completed a questionnaire prior to undergoing MP (n = 356/397). A subset (n = 23) also completed a qualitative interview. Fifty percent of participants believed they and/or relatives should own and control access to diagnostic tissue. Most (65.5%) believed the government should pay for tissue preparation. Qualitative themes included (1) custodianship of diagnostic tissue, (2) changing value of tissue across time and between cultures, (3) equity regarding payment, and (4) cost-benefit considerations in deciding on additional biopsies. Policy and regulation should consider patient perspectives. Extension of publicly funded health care to include tissue retrieval for clinical trials should be considered.

Assessment and Management of Sleep Disturbance in Palliative Care Settings.

Background: Sleep disturbances, including insomnia, sleep-disordered breathing, and circadian rhythm disorders with potential consequences including excessive daytime somnolence and worsening fatigue, are prevalent yet largely under-measured and therefore under-managed problems in people receiving palliative care. This has the potential to negatively affect the person's functioning and quality of life. Objectives: We aimed to review the current practice of assessment and management of sleep disturbances in people with life-limiting illnesses in Australian and New Zealand palliative care settings, and to define areas for improvement in assessment and management of sleep disturbances and further research. Design: A cross-sectional, online survey was conducted with palliative care health professionals (PCHPs) to explore current approaches to routine assessment of sleep disturbances and PCHPs' awareness of, and perceived access to, evidence-based resources for assessing and managing sleep disturbances in their local settings. Results: Fifty-four PCHPs responded to the survey, including allied health professionals (44%), palliative care nurses (26%), and physicians (19%). Over 70% of PCHPs endorsed routine verbal screening of sleep symptoms, and >90% recommended management with basic behavioral strategies. However, none of PCHPs used validated patient-reported outcome measures for sleep, and <10% of PCHPs demonstrated awareness or use of sleep-specific interventions (including medications). Only 40% reported they had access to sleep specialist services for patients. Conclusion: Our findings provide a useful snapshot of current approaches to managing sleep disturbances in palliative care. Gaps in current practice are highlighted, including the lack of structured, clinical assessment, referral pathways, and PCHPs' perceived lack of access to targeted interventions for sleep disturbances.

An ethnographic study evaluating emergency obstetric care education and training in a remote, fragile region of Southeast Asia: Study protocol.

AIM: To evaluate emergency obstetric care education and training within a medical assistant training program, being delivered in a remote, fragile region of Southeast Asia. This will aid in the identification of potential areas of enhancement to improve the management of obstetric emergencies. DESIGN: An ethnographic study, adopting a multi-methods approach. METHODS: Emergency obstetric care education and training will be assessed through documentary analysis and interviews (online or face-to-face) with educators and trainers (N ~ 6-7). Student experiences will be explored using in-person focus groups, facilitated by an external trainer involved in delivering the program (N ~ 10-12). A reflective field diary will provide insight into the lived experience of postgraduate students (N ~ 4-5). Data will be collected between May 2022 and May 2023. The full data set will be triangulated and analysed using the READ approach; (1) ready your materials, (2) extract data, (3) analyse data and (4) distil your findings. Institutional ethical approval was obtained from a university in October 2021, and inter-country regional access was gained following adherence to their local ethical requirements. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: The findings from this study may help to inform the future design of the medical assistant training program. It is anticipated that the knowledge gained from this study will enhance the education and training of mid-level health providers at local, national, and international levels. This work intends to contribute to addressing Sustainable Development Goal 3, Target 1 of reducing maternal mortality to 70:100,000 live births in low-income countries. REPORTING METHOD: This protocol adhered to the Standards for Reporting Qualitative Research (SRQR) checklist. PATIENT OR PUBLIC CONTRIBUTION: No formal PPI has been undertaken; however, stakeholders involved in delivering the education and training have been consulted.

Group Versus Individual Diabetes Education for Persons With Experience of Homelessness in Canada.

PURPOSE: The purpose of the study was to explore various forms of diabetes self-management education (DSME), including group and individual sessions, for persons with lived experiences of homelessness (PWLEH) in Canada. METHODS: A qualitative descriptive study using open-ended interviews with health care and homeless sector service providers was utilized to serve those experiencing homelessness in 5 cities across Canada. NVivo qualitative data analysis software was used to facilitate thematic analysis, focusing on variations in DSME for PWLEH. RESULTS: We conducted interviews with 96 unique health and social care providers. Four themes were identified through focused coding of interviews. First, the use of a harm reduction approach during diabetes education tailored to PWLEH considered patients' access to food, medications, and supplies and other comorbidities, including mental health and substance use disorders. The second theme related to the unsuitability of the curriculum in mainstream diabetes education in a group setting for PWLEH. Third, the role of group education in community building is to create supportive relationships among members. The final theme was the importance of trust and confidentiality in DSME, which were most easily maintained during individual education, compared to group formats. CONCLUSIONS: Overall, PWLEH experience unique challenges in managing diabetes. DSME adapted to these individuals' unique needs may be more successful and could be delivered in both individual and group settings.

Exploring the clinical utility of a brief screening measure of unmet supportive care needs in people with high-grade glioma.

Background: People living with high-grade glioma (HGG) have diverse and complex needs. Screening aims to detect patients with some level of unmet need requiring triaging and further assessment. However, most existing measures of unmet need are not suitable for screening in this population due to their length. We aimed to explore the clinical utility of a brief screening tool (SCNS-ST9) in people with HGG in detecting unmet needs. Methods: Secondary analysis of data collected in a prospective cohort study of 116 people with HGG who completed the Supportive Care Needs Survey (SCNS-SF34) and a brain cancer-specific needs survey (BrTSCNS) during chemoradiation (T1) and 6 months later (T2). The SCNS-ST9 contains a subset of 9 items from the SCNS-SF34. Data analysis determined the number of individuals with unmet needs on the SCNS-SF34 and the BrTSCNS, not identified as having some level of need by the SCNS-ST9. Results: Overall, 3 individuals (T1: 2.6% [3/116]; T2: 4.8% [3/63]) at each time point reported other unmet needs on the SCNS-SF34 that were missed by the SCNS-ST9. Domain-specific screening items missed a higher proportion of individuals (3.2%-26%), particularly in the psychological and health systems domains. Only 1 individual with brain cancer-specific needs was missed by SCNS-ST9 overall. Conclusion: Findings demonstrate the sensitivity and clinical utility of a brief screening tool (SCNS-ST9) of unmet needs in people with HGG. Routine use of this screening tool, supported by clinical pathways, may improve access to support services, potentially reducing the burden of disease for these patients.

Health-related quality of life in patients accessing medicinal cannabis in Australia: The QUEST initiative results of a 3-month follow-up observational study.

AIMS: Patients with chronic health conditions not responding to conventional treatment can access medicinal cannabis (MC) prescriptions from clinicians in Australia. We aimed to assess overall health-related quality of life (HRQL), pain, fatigue, sleep, anxiety, and depression in a large real-world sample of patients accessing prescribed medicinal cannabis. We hypothesized that all patient-reported outcomes (PROs) would improve from baseline to 3-months. METHODS: The QUEST Initiative is a large prospective multicenter study of patients with any chronic health condition newly prescribed medicinal cannabis between November 2020 and December 2021. Eligible patients were identified by 120 clinicians at medical centers across six Australian states. Consenting participants completed the EuroQol Group EQ-5D-5L health status questionnaire; European Organization for Research & Treatment of Cancer Quality of Life questionnaire (QLQ-C30); Patient-Reported Outcomes Measurement Information System (PROMIS) Short Forms in Fatigue and Sleep Disturbance, and the Depression Anxiety Stress Scale (DASS-21) before starting therapy, at 2-weeks titration, then monthly for 3-months. RESULTS: Of the 2762 consenting participants, 2327 completed baseline and at least one follow-up questionnaire. Ages ranged between 18-97 years (mean 51y; SD = 15.4), 62.8% were female. The most commonly treated conditions were chronic pain (n = 1598/2327; 68.7%), insomnia (n = 534/2327; 22.9%), generalized anxiety (n = 508/2327; 21.5%), and mixed anxiety and depression (n = 259/2327; 11%). Across the whole cohort both EQ-5D-5L utility scores and QLQ-C30 summary scores showed clinically meaningful improvement in HRQL from baseline to mean follow-up with d = 0.54 (95%CI:0.47 to 0.59) and d = 0.64 (95%CI:0.58 to 0.70) respectively; and clinically meaningful improvement in fatigue (d = 0.54; 95%CI:0.48 to 0.59). There was clinically meaningful reduction of pain for those with chronic pain (d = 0.65; 95%CI:0.57 to 0.72); significant improvements for those with moderate to extremely severe anxiety (X2 = 383; df = 4; p<0.001) and depression (X2 = 395; df = 4; p<0.001); and no changes in sleep disturbance. CONCLUSIONS: We observed statistically significant, clinically meaningful improvements in overall HRQL and fatigue over the first 3-months in patients with chronic health conditions accessing prescribed medical cannabis. Anxiety, depression, and pain also improved over time, particularly for those with corresponding health conditions. The study continues to follow-up patients until 12-months to determine whether improvements in PROs are maintained long-term. TRAIL REGISTRATION: Study registration - Australian New Zealand Clinical Trials Registry: ACTRN12621000063819. https://www.australianclinicaltrials.gov.au/anzctr/trial/ACTRN12621000063819.

The Development of a Conceptual Framework for Providing Tailored Diabetes Care for Individuals Experiencing Homelessness: A Qualitative Study.

Homelessness results in barriers to effective diabetes self-management. Programs targeting individuals facing homelessness have refined strategies to address these barriers. We sought to develop a framework to characterize these strategies that could help multidisciplinary providers to better support these individuals. Semi-structured interviews were conducted with a purposive sample of health and social care providers working in diabetes or homelessness in five Canadian cities (n=96). Interview transcripts were analyzed through qualitative thematic analysis. Providers described three groups of approaches that enabled care for this population. Person-centered provider behaviours: This included tailoring care plans to accommodate individuals' situational constraints. Lower-barrier organizational structure: Providers developed specialized organizational processes to increase accessibility. Bridging to larger care systems: Strategies included providing access to support workers. Across diverse program structures, similar approaches are used to enhance diabetes care for individuals who are experiencing homelessness, highlighting tangible opportunities for mainstream services to better engage with this population.

Patient-Reported Outcomes in Ovarian Cancer: Facilitating and Enhancing the Reporting of Symptoms, Adverse Events, and Subjective Benefit of Treatment in Clinical Trials and Clinical Practice.

Patient-reported outcomes (PROs) provide a valid, standardized way of assessing symptoms, adverse events and the subjective benefit of treatment from the patient's perspective. Assessment of PROs is critical in ovarian cancer due to the high morbidity of the disease and its treatments. Several well-validated PRO measures are available to assess PROs in ovarian cancer. Their inclusion in clinical trials can provide evidence on the benefits and harms of new treatments based on patients' experiences to guide improvements in clinical practice and health policy. Aggregate PRO data collected in clinical trials can be used to inform patients about likely treatment impacts and assist them to make informed treatment decisions. In clinical practice, PRO assessments can facilitate monitoring of a patient's symptoms throughout treatment and follow-up to guide their clinical management; in this context, an individual patient's responses can facilitate communication with their treating clinician about troublesome symptoms and their impact on their quality of life. This literature review aimed to provide clinicians and researchers with a better understanding of why and how PROs can be incorporated into ovarian cancer clinical trials and routine clinical practice. We discuss the importance of assessing PROs throughout the ovarian cancer disease and treatment trajectory in both clinical trials and clinical practice, and provide examples from existing literature to illustrate the uses of PROs as the goals of treatment change in each setting.

The Psychology of COVID-19 Booster Hesitancy, Acceptance and Resistance in Australia.

COVID-19 booster vaccinations have been recommended as a primary line of defence against serious illness and hospitalisation. This study identifies and characterises distinct profiles of attitudes towards vaccination, particularly the willingness to get a booster dose. A sample of 582 adults from Australia completed an online survey capturing COVID-related behaviours, beliefs and attitudes and a range of sociodemographic, psychological, political, social and cultural variables. Latent Profile Analysis (LPA) identified three subgroups: Acceptant (61%), Hesitant (30%) and Resistant (9%). Compared to the Acceptant group, the Hesitant and Resistant groups were less worried about catching COVID-19, used fewer official COVID-19 information sources, checked the news less, were lower on the agreeableness personality dimension and reported more conservatism, persecutory thinking, amoral attitudes and need for chaos. The Hesitant group also reported checking the legitimacy of information sources less, scored lower on the openness to new experiences personality dimension and were more likely than the Resistant and Acceptant groups to report regaining freedoms (e.g., travel) and work requirements or external pressures as reasons to get a booster. The Resistant group were higher on reactance, held more conspiratorial beliefs and rated their culture as being less tolerant of deviance than the Hesitant and Acceptant groups. This research can inform tailored approaches to increasing booster uptake and optimal strategies for public health messaging.

Bereavement outcomes of carers of patients with high grade glioma: Experiences of support before and after the death.

Carers of people with High Grade Glioma (HGG) completed a survey assessing their anxiety, depression, and grief in addition to open-ended questions exploring their experiences of support pre- and post-death (N = 25). One-third reported borderline or clinical levels of anxiety, depression, and grief related distress. Given the poor prognosis and rapid deterioration of patients with HGG, the findings highlight the importance of sensitive communication about prognosis early in the disease trajectory, information tailored to disease stage, the initiation of a referral to psychological support services, and timely discussions about the preferred place of care and death.

Carer preparedness improved by providing a supportive educational intervention for carers of patients with high-grade glioma: RCT results.

BACKGROUND: High-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress. METHODS: We conducted a randomised controlled trial (ACTRN:12612001147875). Carers of HGG patients were recruited during patients' combined chemoradiation treatment. The complex intervention comprised four components: (1) initial telephone assessment of carer unmet needs; (2) tailored hard-copy resource folder; (3) home visit; and, (4) monthly telephone support for up to 12 months. Primary outcomes included preparedness for caregiving and distress at 2, 4, 6 and 12 months. Intervention effects were estimated using linear mixed models which included a time by group interaction. Secondary outcomes included anxiety, depression, quality of life, carer competence and strain. RESULTS: We randomised 188 carers (n = 98 intervention, n = 90 control). The intervention group reported significantly higher preparedness for caregiving at 4 months (model ß = 2.85, 95% CI 0.76-4.93) and all follow-up timepoints including 12 months (model ß = 4.35, 95% CI 2.08-6.62), compared to the control group. However, there was no difference between groups in carer distress or any secondary outcomes. CONCLUSIONS: This intervention was effective in improving carer preparedness. However, carer distress was not reduced, potentially due to the debilitating/progressive nature of HGG and ongoing caring responsibilities. Future research must explore whether carer interventions can improve carer adjustment, self-efficacy and coping and how we support carers after bereavement. Additionally, research is needed to determine how to implement carer support into practice.

Health-related quality of life of Australians during the 2020 COVID-19 pandemic: a comparison with pre-pandemic data and factors associated with poor outcomes.

PURPOSE: Compare the health-related quality of life (HRQL) of the Australian general population during the COVID-19 pandemic (2020) with pre-pandemic data (2015-2016) and identify pandemic-related and demographic factors associated with poorer HRQL. METHODS: Participants were quota sampled from an online panel by four regions (defined by active COVID-19 case numbers); then by age and sex. Participants completed an online survey about their HRQL [EORTC QLQ-C30 questionnaire and General Health Question (GHQ)], demographic characteristics, and the impact of the pandemic on daily life. HRQL scores were compared to a 2015-2016 reference sample using independent t-tests, adjusted for multiple testing. Associations between 22 pre-specified factors (pandemic-related and demographic) and 15 QLQ-C30 domains and GHQ, were assessed with multiple regressions. RESULTS: Most domains were statistically significantly worse for the 2020 sample (n = 1898) compared to the reference sample (n = 1979), except fatigue and pain. Differences were largest for the youngest group (18-29 years) for cognitive functioning, nausea, diarrhoea, and financial difficulties. Emotional functioning was worse for 2020 participants aged 18-59, but not for those 60 +. All models were statistically significant at p < .001; the most variance was explained for emotional functioning, QLQ-C30 global health/QOL, nausea/vomiting, GHQ, and financial difficulties. Generally, increased workload, negative COVID-19 impacts, COVID-19-related worries, and negative attitudes towards public health order compliance were associated with poorer HRQL outcomes. CONCLUSION: During the COVID-19 pandemic, Australians reported poorer HRQL relative to a pre-pandemic sample. Risk factors for poor HRQL outcomes included greater negative pandemic-related impacts, poorer compliance attitudes, and younger age. TRIAL REGISTRATION: ANZCTR number is: ACTRN12621001240831. Web address of your trial: https://www.anzctr.org.au/ACTRN12621001240831.aspx . Date submitted: 26/08/2021 2:56:53 PM. Date registered: 14/09/2021 9:40:31 AM. Registered by: Margaret-Ann Tait. Principal Investigator: Madeleine King.

Patient and healthcare provider perceptions on using patient-reported experience measures (PREMs) in routine clinical care: a systematic review of qualitative studies.

BACKGROUND: Patient-reported experience measures (PREMs) assess quality-of-care from patients' perspectives. PREMs can be used to enhance patient-centered care and facilitate patient engagement in care. With increasing quality improvement studies in clinical practice, the use of PREMs has surged. As a result, knowledge about stakeholder experiences of using PREMs to assess quality of care across diverse clinical settings is needed to inform PREM implementation efforts. To address this, this review examines the qualitative literature on patient and healthcare provider experiences of using PREMs in clinical practice. METHODS: Medline, Embase and PsycInfo were systematically searched from inception to May 2021. Additional searching of reference lists for all included articles and relevant review articles were performed. Retrieved articles were screened for eligibility by one reviewer and 25% cross-checked by a second reviewer across all stages of the review. Full texts meeting eligibility criteria were appraised against the COREQ checklist for quality assessment and thematic analysis was used to analyze textual data extracted from the results. RESULTS: Electronic searches identified 2683 records, of which 20 studies met eligibility criteria. Extracted data were synthesized into six themes: facilitators to PREM implementation; barriers to PREM implementation; healthcare providers' perspectives towards using PREMs; patients' perspectives towards using PREMs; advantages of using PREMs in clinical practice; limitations and practical considerations to reduce resistance of PREM usage. The primary factors facilitating and impeding the use of PREMs include organizational-, staff- and patient-related factors. CONCLUSION: Results can be used to guide the usage and implementation of PREMs in clinical settings by addressing the identified barriers and building on the perceived benefits to encourage adoption of PREMs. Results around facilitators to PREM implementation and practical considerations could also promote appropriate use of PREMs by healthcare providers, helping to improve practice and the quality of care based on patient feedback.

A Novel Ketone-Supplemented Diet Improves Recognition Memory and Hippocampal Mitochondrial Efficiency in Healthy Adult Mice.

Mitochondrial dysfunction and cognitive impairment are common symptoms in many neurologic and psychiatric disorders, as well as nonpathological aging. Ketones have been suggested as therapeutic for their efficacy in epilepsy and other brain pathologies such as Alzheimer's disease and major depressive disorder. However, their effects on cognitive function in healthy individuals is less established. Here, we explored the mitochondrial and performative outcomes of a novel eight-week ketone-supplemented ketogenic (KETO) diet in healthy adult male and female mice. In a novel object recognition test, KETO mice spent more time with the novel, compared to familiar, object, indicating an improvement in recognition memory. High-resolution respirometry on permeabilized hippocampal tissue returned significant reductions in mitochondrial O2 consumption. No changes in ATP production were observed, yielding a significantly higher ATP:O2 ratio, a measure of mitochondrial efficiency. Together, these findings demonstrate the KETO diet improves hippocampal mitochondrial efficiency. They add to a growing body of evidence that suggests ketones and ketogenic diets are neuroprotective and metabolically and cognitively relevant, even in healthy adults. They also suggest that ketogenic lifestyle changes may be effective strategies for protecting against cognitive decline associated with aging and disease.

Trajectory of Anxiety Related to Radiation Therapy Mask Immobilization and Treatment Delivery in Head and Neck Cancer and Radiation Therapists' Ability to Detect This Anxiety.

Purpose: Receiving radiation therapy treatment with an immobilization mask is a source of anxiety in people with head and neck cancer (HNC). This study aimed to document the trajectory of situational anxiety during HNC treatment delivery and explore radiation therapists' (RTs') ability to identify it. Methods and Materials: Participants with HNC commencing radiation therapy completed the state-trait anxiety inventory at their mask-making session, and once each week immediately before and after their radiation treatment. Treating RTs independently rated their perception of participant's anxiety at the same time points. Participant- and RT-rated anxiety scores were calculated at each time point together with the proportion of participants reporting clinically significant anxiety (state-trait anxiety inventory ≥ 40). Intraclass correlations were calculated to assess concordance between participant- and RT-ratings. Results: Sixty-five participants and 16 RTs took part in this study. Participants were classified into 1 of 5 trajectory groups: stable high (16%), increasing (19%), decreasing (27%), fluctuating (19%), and no anxiety (19%). Nearly half (43%) of participants reported clinically significant anxiety before their mask-making session, and between 30% and 43% across trajectories reported significant anxiety immediately before treatments. Intraclass correlation values indicated poor agreement between participant- and RT-ratings. Conclusions: Situational anxiety is prevalent in people receiving HNC radiation therapy with mask immobilization. RTs did not reliably capture patients' situational anxiety. There is no single best time point to provide intervention, suggesting people should be screened for anxiety regularly throughout their treatment. Resources and education should also be available to improve RT skills in providing psychosocial support.

A review of the content and psychometric properties of cancer-related fatigue (CRF) measures used to assess fatigue in intervention studies.

PURPOSE: Cancer-related fatigue (CRF) is a common and debilitating consequence of cancer and its treatment. Numerous supportive care interventions have been developed to alleviate CRF; however, the diversity of outcome measures used to assess CRF limits comparability of findings. We aimed to evaluate the content and psychometric properties of measures used to assess CRF in interventions targeting fatigue, to inform the selection of suitable measures in future research. METHODS: Included measures were identified from a systematic review of interventions targeting CRF. General characteristics of each measure were extracted, and item content was assessed against domains specified by the National Comprehensive Cancer Network (NCCN) definition of CRF. Psychometric properties were evaluated against COnsensus-based Standards for the selection of heath Measurement INstruments (COSMIN) criteria. RESULTS: Of 54 measures identified, 25 met inclusion criteria. Seventeen were fatigue-specific and eight a fatigue subscale or single item within a broader measure. Only 14 (56%) were specifically developed for cancer populations. Content coverage according to the NCCN CRF definition ranged from 0 to 75%. Evidence for fulfilment of COSMIN criteria in cancer populations ranged from 0 to 93%, with only five measures meeting > 70% of the COSMIN criteria. CONCLUSION: The Piper Fatigue Scale-Revised had good content coverage, but did not comprehensively address COSMIN criteria. The EORTC-FA12 and FACIT/FACT-F had excellent psychometric properties, with each capturing different aspects of fatigue. Ultimately, the choice of CRF measure should be guided by the research question and the CRF domains most relevant to the particular research context.

Accessing Diabetes Specialty Care for Persons With Lived Experience of Homelessness in Canada: Challenges and Opportunities.

OBJECTIVES: Persons with lived experience of homelessness face many challenges in managing their diabetes, including purchasing and storing medications, procuring healthy food and accessing health-care services. Not only do these individuals have challenges in accessing primary care, they are also seen by diabetes specialists (endocrinologists, diabetes educators, foot- and eye-care specialists) less frequently. METHODS: We conducted a qualitative descriptive study using open-ended interviews of 96 health and social care providers across 5 Canadian cities (Calgary, Edmonton, Ottawa, Vancouver, Toronto). We used NVivo qualitative software to facilitate thematic analysis of the data, focussing on homelessness-related patient barriers to diabetes specialty care. RESULTS: Barriers identified included patients' competing priorities and previous negative experiences with specialists, long wait times from referral to appointment, difficulty in contacting patients and location of the clinics. Primary care providers were confident in managing diabetes in most patients and believed that patients were best served under their care. Other barriers included specialists' limited understanding of patients' complex social situations and medication coverage as well as out-of-pocket costs associated with some specialist care. Recommendations for improving access to diabetes specialty care for these medically and socially complex patients included holding diabetes specialty clinics at community health centres, providing physician-to-physician direct referrals, and selecting specialists with an interest in health of the homeless population. CONCLUSIONS: Barriers to diabetes specialty care for persons with lived experience of homelessness are due largely to the physical and social environment of the clinics. Innovative solutions may be implemented to address these challenges and improve access for this population.

Measure of Ovarian Symptoms and Treatment concerns (MOST) indexes and their associations with health-related quality of life in recurrent ovarian cancer.

PURPOSE: The Measure of Ovarian Symptoms and Treatment (MOST) concerns is a validated patient-reported symptom assessment tool for assessing symptom benefit and adverse effects of palliative chemotherapy in women with recurrent ovarian cancer (ROC). We aimed to examine (i) how symptoms within MOST symptom indexes track together (i.e. co-occur) and (ii) the association between MOST symptom indexes and key aspects of health-related quality of life (HRQL). METHOD: A prospective cohort of women with ROC completed the MOST-T35, EORTC QLQ-C30 and EORTC QLQ-OV28 at baseline and before each cycle of chemotherapy. Analyses were conducted on baseline and end-of-treatment data. Exploratory factor analysis and hierarchical cluster analysis identified groups of co-occurring symptoms. Path models examined associations between MOST symptom indexes and HRQL. RESULTS: Data from 762 women at baseline and 681 at treatment-end who completed all 22 symptom-specific MOST items and at least one HRQL measure were analysed. Four symptom clusters emerged at baseline and treatment-end: abdominal symptoms, symptoms associated with peripheral neuropathy, nausea and vomiting, and psychological symptoms. Psychological symptoms (MOST-Psych) and symptoms due to disease (ovarian cancer) or treatment (MOST-DorT) were associated with poorer scores on QLQ-C30 and OV28 functioning domains and worse overall health at both time points. CONCLUSION: Four MOST symptom clusters were consistent across statistical methods and time points. These findings suggest that routine standardized assessment of psychological and physical symptoms in clinical practice with MOST plus appropriate symptom management referral pathways is an intervention for improving HRQL that warrants further research.