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

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

A risk screening tool for ethical appraisal of evidence-generating initiatives

Abstract Background The boundaries between health-related research and practice have become blurred as initiatives traditionally considered to be practice (e.g., quality improvement, program evaluation) increasingly use the same methodology as research. Further, the application of different ethical requirements based on this distinction raises concerns because many initiatives commonly labelled as “non-research” are associated with risks to patients, participants, and other stakeholders, yet may not be subject to any ethical oversight. Accordingly, we sought to develop a tool to facilitate the systematic identification of risks to human participants and determination of risk level across a broad range of projects (e.g., clinical research, laboratory-based projects, population-based surveillance, and program evaluation) and health-related contexts. This paper describes the development of the Public Health Ontario (PHO) Risk Screening Tool. Method Development of the PHO Risk Screening Tool included: (1) preparation of a draft risk tool (n = 47 items); (2) expert appraisal; (3) internal stakeholder validation; (4) external validation; (5) pilot testing and evalution of the draft tool; and (6) revision after 1 year of testing. Results A risk screening tool was generated consisting of 20 items organized into five risk domains: Sensitivity; Participant Selection, Recruitment and Consent; Data/Sample Collection; Identifiability and Privacy Risk; and Commercial Interests. The PHO Risk Screening Tool is an electronic tool, designed to identify potential project-associated risks to participants and communities and to determine what level of ethics review is required, if any. The tool features an easy to use checklist format that generates a risk score (0–3) associated with a suggested level of ethics review once all items have been completed. The final score is based on a threshold approach to ensure that the final score represents the highest level of risk identified in any of the domains of the tool. Conclusions The PHO Risk Screening Tool offers a practical solution to the problem of how to maintain accountability and appropriate risk oversight that transcends the boundaries of research and practice. We hope that the PHO Risk Screening Tool will prove useful in minimizing the problems of over and under protection across a wide range of disciplines and jurisdictions

Regional variation of premature mortality in Ontario, Canada: a spatial analysis

Abstract Background Premature mortality is a meaningful indicator of both population health and health system performance, which varies by geography in Ontario. We used the Local Health Integration Network (LHIN) sub-regions to conduct a spatial analysis of premature mortality, adjusting for key population-level demographic and behavioural characteristics. Methods We used linked vital statistics data to identify 163,920 adult premature deaths (deaths between ages 18 and 74) registered in Ontario between 2011 and 2015. We compared premature mortality rates, population demographics, and prevalence of health-relevant behaviours across 76 LHIN sub-regions. We used Bayesian hierarchical spatial models to quantify the contribution of these population characteristics to geographic disparities in premature mortality. Results LHIN sub-region premature mortality rates ranged from 1.7 to 6.6 deaths per 1000 per year in males and 1.2 to 4.8 deaths per 1000 per year in females. Regions with higher premature mortality had fewer immigrants and higher prevalence of material deprivation, excess body weight, inadequate fruit and vegetable consumption, sedentary behaviour, and ever-smoked status. Adjusting for all variables eliminated close to 90% of geographic variation in premature mortality, but did not fully explain the spatial pattern of premature mortality in Ontario. Conclusions We conducted the first spatial analysis of mortality in Ontario, revealing large geographic variations. We demonstrate that well-known risk factors explain most of the observed variation in premature mortality. The result emphasizes the importance of population health efforts to reduce the burden of well-known risk factors to reduce variation in premature mortality