The role of Hospital-Based Cancer Registries (HBCRs) as information systems in the delivery of evidence-based integrated cancer care: a scoping review.

Cancer is a leading cause of mortality, with 10 million deaths in 2020. With the number of people impacted by cancer projected to increase, a better-integrated cancer care is needed. Evidence suggests that Hospital-Based Cancer Registries (HBCRs) that collect administrative and clinical data could improve integrated and equitable evidence-based care. However, the state and HBCR's role in the delivery of integrated cancer care for improved health outcomes, particularly in low- and middle-income countries (LMICs), is poorly understood and is assessed in this scoping review. A systematic search was conducted in April 2020. Thirty articles were included. This review found that while HBCRs have been implemented in several countries, few studies have evaluated the quality and effectiveness of registries, especially in LMICs. HBCRs in LMICs function more as data collection tools than information systems to influence clinical care decisions and monitoring, missing the opportunity to guide cancer care priorities and policies.

Patients' and Health Care Professionals' Expectations, Experience, and Perception of the Outcomes of Various Washout Policies in Preventing Catheter-associated Complications: Qualitative Study of the CATHETER II Trial.

The CATHETER II trial is expected to determine if and which policy for prophylactic catheter washout on a weekly basis improves the outcome of care for people living with a long-term catheter. By exploring the views and experiences of both the trial participants and health care professionals in relation to the trial delivery and outcomes, the CATHETER II qualitative study can provide context to the trial findings, clarify the fidelity of the intervention, and inform translation of the intervention into routine policy and practice.

How Do We Meet the Supportive Care and Information Needs of Those Living With and Beyond Bladder Cancer?

This perspective paper presents the case for adopting a new approach to the design and delivery of supportive care for those with bladder cancer. It is our assertion that the design and delivery of supportive care for those diagnosed with bladder cancer needs to (1) build on existing research and available tools and (2) address current limitations due to lack of use of said tools, lack of understanding of research and needs, lack of a shared language, and method of assessment and evaluation. This, we argue, can be achieved through a network-based approach (1) focussed on the structure, process, and outcome of supportive care.

The relationship between social support and health-related quality of life in patients with antiphospholipid (hughes) syndrome.

OBJECTIVE: Antiphospholipid (Hughes) syndrome (APS) is recognised as a systemic autoimmune disease defined by recurrent thromboembolic events and/or pregnancy morbidity. Little is known about the psychological burden of this long-term condition. This study aims to explore the relationship between social support and health-related quality of life (HRQoL) in patients with APS. METHODS: A total of 270 patients with a clinical diagnosis of APS participated in a cross-sectional online questionnaire survey. Data included demographics, disease-related information, social support and HRQoL. RESULTS: Both perceived and ideal social support were associated with HRQoL in APS. Patients reported receiving insufficient social support. Perceived emotional support was related to physical functioning (B = 7.77, p = .006, 95% CI: 2.25, 13.29); perceived instrumental support was associated with bodily pain (B = 17.52, p <  .001, 95% CI: 11.15, 23.90) and perceived informational support with physical and social functioning (B = -6.30, p = .05, 95% CI: -12.52, -0.08; B = 8.06, p = .02, 95% CI: 1.17, 14.94). Ideal emotional support was related to physical and social functioning (B = 5.80, p = .04, 95% CI: 0.26, 11.34; B = 7.53, p = .04, 95% CI: 0.55, 14.51); ideal instrumental support was associated with mental health (B = 4.73, p = .03, 95% CI: 0.38, 9.07) and ideal informational support with vitality (B = 5.85, p = .01, 95% CI: 1.23, 10.46). CONCLUSION: Social support was linked to HRQoL in patients with APS. Insufficient social support was associated with limitations in various HRQoL domains. Increasing social support especially through provision of disease-specific education might contribute to improving HRQoL in patients with APS. Patient-tailored interventions addressing psychosocial aspects of living with APS are needed to improve patients' psychological and physical status.

Menopause and work: an electronic survey of employees' attitudes in the UK.

OBJECTIVES: This study explored women's experiences of working through menopausal transition in the UK. It aimed to identify the perceived effects of menopausal symptoms on working life, to outline the perceived effects of work on menopausal symptoms, and to provide recommendations for women, healthcare practitioners and employers. METHODS: An electronic questionnaire was distributed to women aged 45-55 in professional, managerial and administrative (non-manual) occupations in 10 organisations. Items included: age, age and gender of line manager, educational level, job satisfaction; menopausal status; symptoms that were problematic for work; hot flushes; working conditions; work performance, disclosure to line managers; individual coping strategies; and, effective workplace adjustments and employer support. RESULTS: The final sample comprised 896 women. Menopausal transition caused difficulties for some women at work. The most problematic symptoms were: poor concentration, tiredness, poor memory, feeling low/depressed and lowered confidence. Hot flushes were particularly difficult. Some women felt work performance had been negatively affected. The majority of women were unwilling to disclose menopause-related health problems to line managers, most of whom were men or younger than them. Individual coping strategies were described. Four major areas for organisational-level support emerged: (i) greater awareness among managers about menopause as a possible occupational health issue, (ii) flexible working hours, (iii) access to information and sources of support at work, and (iv) attention to workplace temperature and ventilation. CONCLUSION: Employers and healthcare practitioners should be aware that menopausal transition causes difficulty for some women at work, and that much can be done to support them.

Urological cancer care pathways: development and use in the context of systematic reviews and clinical practice guidelines.

BACKGROUND: Making healthcare treatment decisions is a complex process involving a broad stakeholder base including patients, their families, health professionals, clinical practice guideline developers and funders of healthcare. METHODS: This paper presents a review of a methodology for the development of urological cancer care pathways (UCAN care pathways), which reflects an appreciation of this broad stakeholder base. The methods section includes an overview of the steps in the development of the UCAN care pathways and engagement with clinical content experts and patient groups. RESULTS: The development process is outlined, the uses of the urological cancer care pathways discussed and the implications for clinical practice highlighted. The full set of UCAN care pathways is published in this paper. These include care pathways on localised prostate cancer, locally advanced prostate cancer, metastatic prostate cancer, hormone-resistant prostate cancer, localised renal cell cancer, advanced renal cell cancer, testicular cancer, penile cancer, muscle invasive and metastatic bladder cancer and non-muscle invasive bladder cancer. CONCLUSION: The process provides a useful framework for improving urological cancer care through evidence synthesis, research prioritisation, stakeholder involvement and international collaboration. Although the focus of this work is urological cancers, the methodology can be applied to all aspects of urology and is transferable to other clinical specialties.