Measuring the sixth vital sign: A descriptive analysis of distress in individuals with head and neck cancer and their caregivers

Introduction: Distress has become so problematic in oncology that it has been recognized as the “sixth vital sign” implying that distress monitoring should occur as routinely as the monitoring of one’s temperature or blood pressure. The research reported herein investigated the impact of head and neck cancer on levels of distress, commonly reported problems, and perceptions of quality of life in individuals with head and neck cancer and their caregivers. Method: Two distinct studies were conducted; the first explored the patient experience of distress and quality of life while the second assessed the caregiver experience of these same constructs. A prospective, longitudinal research design was employed for the patient study while a cross-sectional design was utilized for the caregiver study. Measurement instruments included: (1) a demographic survey; (2) the Distress Thermometer and Problem Checklist; (3) the EORTC Quality of Life questionnaire (EORTC-QLQ-C30), and (4) the EORTC Head and Neck module (EORTC-QLQ-H&N35), to evaluate quality of life in individuals with head and neck cancer; and (5) the Caregiver Quality of Life-Cancer Scale (CQOLC) to assess quality of life in caregivers. Results: Data indicate that elevated distress can exist at any point along the continuum of care in both individuals with head and neck cancer and their caregivers. Relative to the patient population, distress was most prevalent at diagnosis and length of time following diagnosis had a large effect on perceived distress. Meanwhile 45% of caregiver participants reported clinically significant distress; both caregiver sex and the treatment status (i.e., awaiting treatment, undergoing treatment, completed treatment) of the individual for whom they were providing care influenced perceptions of distress in caregivers. Relative to quality of life, participants in both studies reported elevated burden in three primary domains: role fulfillment, physical functioning, and psychological well-being. Conclusion: Data suggest that perceptions of distress are individualized and heterogeneous in nature. Thus, routine distress screening represents a critical first step in the identification of elevated distress in both those with head and neck cancer and their caregivers. Through early identification and effective management of distress, comprehensiveness of care may be enhanced and long-term outcomes may be optimized

A DESCRIPTIVE ANALYSIS OF THE RELATIONSHIP BETWEEN DISTRESS AND QUALITY OF LIFE IN INDIVIDUALS WITH HEAD AND NECK CANCER

Introduction: This study investigated the impact o f head and neck cancer on distress and quality o f life (QoL). Method: Participants were 37 adults (28 men, 9 women) who had been diagnosed with head and neck cancer within the last 12 months. Measurement instruments included: (1) the Brief Symptom Inventory 18 (BSI-18), (2) the European Organisation for Research and Treatment of Cancer (EORTC) general QoL questionnaire (EORTC-QLQ-C30), (3) the EORTC Head and Neck module (EORTC-QLQ-H&N35), and (4) a brief demographic survey. Results: A significant inverse relationship was detected between QoL and distress suggesting that as level of distress increases, perceived QoL deteriorates. Conclusion: The BSI-18 was found to be an efficient and effective measure o f distress. Based on data obtained, distress remains a pervasive problem for individuals with head and neck cancer and affects both global and specific domains of QoL. As a result, routine distress-screening programs may assist in identifying and responding to problematic distres

A systematic review of frameworks for the interrelationships of mental health evidence and policy in low- and middle-income countries

Background: The interrelationships between research evidence and policy-making are complex. Different theoretical frameworks exist to explain general evidence–policy interactions. One largely unexplored element of these interrelationships is how evidence interrelates with, and influences, policy/political agenda-setting. This review aims to identify the elements and processes of theories, frameworks and models on interrelationships of research evidence and health policy-making, with a focus on actionability and agenda-setting in the context of mental health in low- and middle-income countries (LMICs). Methods: A systematic review of theories was conducted based on the BeHeMOTh search method, using a tested and refined search strategy. Nine electronic databases and other relevant sources were searched for peer-reviewed and grey literature. Two reviewers screened the abstracts, reviewed full-text articles, extracted data and performed quality assessments. Analysis was based on a thematic analysis. The included papers had to present an actionable theoretical framework/model on evidence and policy interrelationships, such as knowledge translation or evidence-based policy, specifically target the agenda-setting process, focus on mental health, be from LMICs and published in English. Results: From 236 publications included in the full text analysis, no studies fully complied with our inclusion criteria. Widening the focus by leaving out ‘agenda-setting’, we included ten studies, four of which had unique conceptual frameworks focusing on mental health and LMICs but not agenda-setting. The four analysed frameworks confirmed research gaps from LMICs and mental health, and a lack of focus on agenda-setting. Frameworks and models from other health and policy areas provide interesting conceptual approaches and lessons with regards to agenda-setting. Conclusion: Our systematic review identified frameworks on evidence and policy interrelations that differ in their elements and processes. No framework fulfilled all inclusion criteria. Four actionable frameworks are applicable to mental health and LMICs, but none specifically target agenda-setting. We have identified agenda-setting as a research theory gap in the context of mental health knowledge translation in LMICs. Frameworks from other health/policy areas could offer lessons on agenda-setting and new approaches for creating policy impact for mental health and to tackle the translational gap in LMICs

Embracing complexity and uncertainty to create impact: Exploring the processes and transformative potential of co-produced research through development of a social impact model

© 2018 The Author(s). The potential use, influence and impact of health research is seldom fully realised. This stubborn problem has caused burgeoning global interest in research aiming to address the implementation 'gap' and factors inhibiting the uptake of scientific evidence. Scholars and practitioners have questioned the nature of evidence used and required for healthcare, highlighting the complex ways in which knowledge is formed, shared and modified in practice and policy. This has led to rapid expansion, expertise and innovation in the field of knowledge mobilisation and funding for experimentation into the effectiveness of different knowledge mobilisation models. One approach gaining prominence involves stakeholders (e.g. researchers, practitioners, service users, policy-makers, managers and carers) in the co-production, and application, of knowledge for practice, policy and research (frequently termed integrated knowledge translation in Canada). Its popularity stems largely from its potential to address dilemmas inherent in the implementation of knowledge generated using more reductionist methods. However, despite increasing recognition, demands for co-produced research to illustrate its worth are becoming pressing while the means to do so remain challenging. This is due not only to the diversity of approaches to co-production and their application, but also to the ways through which different stakeholders conceptualise, measure, reward and use research. While research co-production can lead to demonstrable benefits such as policy or practice change, it may also have more diffuse and subtle impact on relationships, knowledge sharing, and in engendering culture shifts and research capacity-building. These relatively intangible outcomes are harder to measure and require new emphases and tools. This opinion paper uses six Canadian and United Kingdom case studies to explore the principles and practice of co-production and illustrate how it can influence interactions between research, policy and practice, and benefit diverse stakeholders. In doing so, we identify a continuum of co-production processes. We propose and illustrate the use of a new 'social model of impact' and framework to capture multi-layered and potentially transformative impacts of co-produced research. We make recommendations for future directions in research co-production and impact measurement

Embedded health service development and research: why and how to do it (a ten-stage guide)

In a world of changing disease burdens, poor quality care and constrained health budgets, finding effective approaches to developing and implementing evidence-based health services is crucial. Much has been published on developing service tools and protocols, operational research and getting policy into practice but these are often undertaken in isolation from one another. This paper, based on 25 years of experience in a range of low and middle income contexts as well as wider literature, presents a systematic approach to connecting these activities in an embedded development and research approach. This approach can circumvent common problems such as lack of local ownership of new programmes, unrealistic resource requirements and poor implementation. We lay out a ten-step process, which is based on long-term partnerships and working within local systems and constraints and may be tailored to the context and needs. Service development and operational research is best prioritised, designed, conducted and replicated when it is embedded within ministry of health and national programmes. Care packages should from the outset be designed for scale-up, which is why the piloting stage is so crucial. In this way, the resulting package of care will be feasible within the context and will address local priorities. Researchers must be entrepreneurial and responsive to windows of funding for scale-up, working in real-world contexts where funding and decisions do not wait for evidence, so evidence generation has to be pragmatic to meet and ensure best use of the policy and financing cycles. The research should generate tested and easily usable tools, training materials and processes for use in scale-up. Development of the package should work within and strengthen the health system and other service delivery strategies to ensure that unintended negative consequences are minimised and that the strengthened systems support quality care and effective scale up of the package. While embedded development and research is promoted in theory, it is not yet practiced at scale by many initiatives, leading to wasted resources and un-sustained programmes. This guide presents a systematic and practical guide to support more effective engagements in future, both in developing interventions and supporting evidence-based scale-up

Exploring the function and effectiveness of knowledge brokers as facilitators of knowledge translation in health-related settings: a systematic review and thematic analysis

Abstract Background Knowledge brokers (KBs) work collaboratively with key stakeholders to facilitate the transfer and exchange of information in a given context. Currently, there is a perceived lack of evidence about the effectiveness of knowledge brokering and the factors that influence its success as a knowledge translation (KT) mechanism. Thus, the goal of this review was to systematically gather evidence regarding the nature of knowledge brokering in health-related settings and determine if KBs effectively contributed to KT in these settings. Methods A systematic review was conducted using a search strategy designed by a health research librarian. Eight electronic databases (MEDLINE, Embase, PsycINFO, CINAHL, ERIC, Scopus, SocINDEX, and Health Business Elite) and relevant grey literature sources were searched using English language restrictions. Two reviewers independently screened the abstracts, reviewed full-text articles, extracted data, and performed quality assessments. Analysis included a confirmatory thematic approach. To be included, studies must have occurred in a health-related setting, reported on an actual application of knowledge brokering, and be available in English. Results In total, 7935 records were located. Following removal of duplicates, 6936 abstracts were screened and 240 full-text articles were reviewed. Ultimately, 29 articles, representing 22 unique studies, were included in the thematic analysis. Qualitative (n = 18), quantitative (n = 1), and mixed methods (n = 6) designs were represented in addition to grey literature sources (n = 4). Findings indicated that KBs performed a diverse range of tasks across multiple health-related settings; results supported the KB role as a ‘knowledge manager’, ‘linkage agent’, and ‘capacity builder’. Our systematic review explored outcome data from a subset of studies (n = 8) for evidence of changes in knowledge, skills, and policies or practices related to knowledge brokering. Two studies met standards for acceptable methodological rigour; thus, findings were inconclusive regarding KB effectiveness. Conclusions As knowledge managers, linkage agents, and capacity builders, KBs performed many and varied tasks to transfer and exchange information across health-related stakeholders, settings, and sectors. How effectively they fulfilled their role in facilitating KT processes is unclear; further rigourous research is required to answer this question and discern the potential impact of KBs on education, practice, and policy

OPTIMISE Mortality Atlas

Produced by the Population Health Analytics Laboratory in the Division of Epidemiology at the Dalla Lana School of Public Health, University of Toronto.Adult mortality rates in Ontario fell significantly between 1992 and 2015. Improvements took place in all regions of the province, and across several different types of mortality. This atlas offers strong, empirical evidence that Ontario’s health systems and policies have been increasingly successful at preventing death over time. However, mortality and its declines are not homogenous across the province. There are significant geographic, socioeconomic, and sex differences in mortality within Ontario’s population. Men, low socioeconomic status groups, and residents of southeast and northern Ontario experience the highest mortality rates. These groups are more likely to die, and to die prematurely, many from treatable or preventable causes, than the general Ontario population. Furthermore, socioeconomic and geographic groups with the highest mortality rates in 1992 also made the least improvements between 1992 and 2015. As a result, differences in mortality between LHINs and socioeconomic groups have grown larger since 1992.Supported by the Canadian Institutes for Health Research and the Canada Research Chairs Program