The quality of life of hospitalized and outpatient oncological patients

This document is the Accepted Manuscript version of the following article: Patricia Dobrikova, Dana Stachurova, Miriam Slana, and Brian Littlechild, ‘The quality of life of hospitalized and outpatient oncological patients’, Kontakt, Vol. 20 (1): e57-e62, March 2018. Under embargo until 6 October 2018. The final, definitive version is available online via DOI: https://doi.org/10.1016/j.kontakt.2017.09.006The quality of life of sufferers of chronic and serious diseases is a phenomenon which has come to the attention of contemporary medicine, nursing and other supporting professionals working with cancer patients. This research set out to determine whether there is a difference in the self-perception of the quality of life of hospitalized cancer patients and cancer outpatients. This study deals with the comparison of quality of life in 128 outpatient and hospitalized cancer patients in the curative stage of cancer. The QLACS (Quality of Life in Adult Cancer Survivors) “How do I live with the disease?” questionnaire was used in the survey. To ascertain the total value of the quality of life we used scoring with a potential spread of responses from 1 to 7 in the QLACS questionnaire. Using this scale, various items in the questionnaire measured the level of each frequency of problems (1 = never, 7 = always). The resulting value of quality of life of the patient was higher when the final score was lower. A significance level of 0.005 in the resulting value of quality of life (sig. = 0.000) in the study group of patients confirmed the hypothesis, which assumed that the quality of life of hospitalized cancer patients is significantly lower than the quality of life of cancer outpatients. The quality of life of hospitalized cancer patients is significantly lower than the quality of life of cancer outpatients (sig. = 0.000) since admission to hospital with all the accompanying negative factors for the patient – the separation from family and loved ones, unfamiliar environment, undergoing often difficult and invasive diagnostic or therapeutic procedures, which amongst others, are very stressful for the patient, with a potentially negative impact on the patient's quality of life.Peer reviewedFinal Accepted Versio

Reflections and Experiences of a Co-Researcher involved in a Renal Research Study

Background Patient and Public Involvement (PPI) is seen as a prerequisite for health research. However, current Patient and public involvement literature has noted a paucity of recording of patient and public involvement within research studies. There have been calls for more recordings and reflections, specifically on impact. Renal medicine has also had similar criticisms and any reflections on patient and public involvement has usually been from the viewpoint of the researcher. Roles of patient and public involvement can vary greatly from sitting on an Advisory Group to analysing data. Different PPI roles have been described within studies; one being a co-researcher. However, the role of the co-researcher is largely undefined and appears to vary from study to study. Methods The aims of this paper are to share one first time co-researcher's reflections on the impact of PPI within a mixed methods (non-clinical trial) renal research study. A retrospective, reflective approach was taken using data available to the co-researcher as part of the day-to-day research activity. Electronic correspondence and documents such as meeting notes, minutes, interview thematic analysis and comments on documents were re-examined. The co-researcher led on writing this paper. Results This paper offers a broad definition of the role of the co-researcher. The co-researcher reflects on undertaking and leading on the thematic analysis of interview transcripts, something she had not previously done before. The co-researcher identified a number of key themes; the differences in time and responsibility between being a coresearcher and an Advisory Group member; how the role evolved and involvement activities could match the co-researchers strengths (and the need for flexibility); the need for training and support and lastly, the time commitment. It was also noted that it is preferable that a co-researcher needs to be involved from the very beginning of the grant application. Conclusions The reflections, voices and views of those undertaking PPI has been largely underrepresented in the literature. The role of co-researcher was seen to be rewarding but demanding, requiring a large time commitment. It is hoped that the learning from sharing this experience will encourage others to undertake this role, and encourage researchers to reflect on the needs of those involved.Peer reviewedFinal Published versio

Cavernous sinus haemangioma masquerading as a pituitary macroadenoma: how the unexpected lurks in neurosurgery

Cavernous sinus haemangiomas are neoplastic lesions notoriously difficult to diagnose and excise. We present a case of a lesion that was clinically, biochemically, and radiologically consistent to a giant pituitary macroadenoma and discuss the unexpected near intra-operative exsanguination which enabled a pathognomonic diagnosis of a much rarer lesion to be made. This highlights the sinister nature of such a lesion, and its potential impact on patient care if partially excised, and that despite our advances in neurosurgical diagnostics the unexpected is to be expected

New Territories : 350/500 Years After : An Exhibition of Contemporary Aboriginal Art of Canada

Seven authors bear witness to the political stakes and artistic problems underlining the de-folklorization of Native art. Includes a history of Native art since 1960, a discussion of the links between Native politics and contemporary art in the works of the 43 participants, an analysis of interactions between contemporary Native and Quebecois art, a consideration of traditional Native philosophies, and an account of the socio-economic factors tied to contemporary Inuit art. With an afterword by Robert Houle on self-determination and artists' statements. Biographical notes. 40 bibl. ref

National survey of indigenous primary healthcare capacity and delivery models in Canada: the TransFORmation of IndiGEnous PrimAry HEAlthcare delivery (FORGE AHEAD) community profile survey

Background: There is a significant deficiency of national health information for Indigenous peoples in Canada. This manuscript describes the Community Profile Survey (CPS), a community-based, national-level survey designed to identify and describe existing healthcare delivery, funding models, and diabetes specific infrastructure and programs in Indigenous communities. Methods: The CPS was developed collaboratively through FORGE AHEAD and the First Nations and Inuit Health Branch of Health Canada. Regional and federal engagement and partnerships were built with Indigenous organizations to establish regionally-tailored distribution of the 8-page CPS to 440 First Nations communities. Results were collected (one survey per community) and reported in strata by region, with descriptive analyses performed on all variables. Results were shared with participating communities and regional/federal partners through tailored reports. Results: A total of 84 communities completed the survey (19% response rate). The majority of communities had a health centre/office to provide service to their patients with diabetes, with limited on-reserve hospitals for ambulatory or case-sensitive conditions. Few healthcare specialists were located on-site, with patients frequently travelling off-site (> 40 km) for diabetes-related complications. The majority of healthcare professionals on-site were Health Directors, Community Health Nurses, and Home Care Nurses. Many communities had a diabetes registry but few reported a diabetes surveillance system. Regional variation in healthcare services, diabetes programs, and funding models were noted, with most communities engaging in some type of innovative strategy to improve care for patients with diabetes. Conclusions: The CPS is the first community-based, national-level survey of its kind in Canada. Although the response rate was low, the CPS was distributed and successfully administered across a broad range of First Nations communities, and future considerations would benefit from a governance structure and leadership that strengthens community engagement, and a longitudinal research approach to increase the representativeness of the data. This type of information is important for communities and regions to inform decision making (maintain successes, and identify areas for improvement), strengthen health service delivery and infrastructure, increase accessibility to healthcare personnel, and allocate funding and/or resources to build capacity and foster a proactive chronic disease prevention and management approach for Indigenous communities across Canada. Trial registration: Current ClinicalTrial.gov protocol ID NCT02234973. Registered: September 9, 2014

Artropolis 93 : Public Art and Art About Public Issues

Contains 12 texts and documents works by nearly 300 Canadian artists in a Vancouver-based public art project. Includes artist's statements. 7 bibl. ref

External validation and recalibration of an incidental meningioma prognostic model - IMPACT: protocol for an international multicentre retrospective cohort study

Introduction: Due to the increased use of CT and MRI, the prevalence of incidental findings on brain scans is increasing. Meningioma, the most common primary brain tumour, is a frequently encountered incidental finding, with an estimated prevalence of 3/1000. The management of incidental meningioma varies widely with active clinical-radiological monitoring being the most accepted method by clinicians. Duration of monitoring and time intervals for assessment, however, are not well defined. To this end, we have recently developed a statistical model of progression risk based on single-centre retrospective data. The model Incidental Meningioma: Prognostic Analysis Using Patient Comorbidity and MRI Tests (IMPACT) employs baseline clinical and imaging features to categorise the patient with an incidental meningioma into one of three risk groups: low, medium and high risk with a proposed active monitoring strategy based on the risk and temporal trajectory of progression, accounting for actuarial life expectancy. The primary aim of this study is to assess the external validity of this model. Methods and analysis: IMPACT is a retrospective multicentre study which will aim to include 1500 patients with an incidental intracranial meningioma, powered to detect a 10% progression risk. Adult patients ≥16 years diagnosed with an incidental meningioma between 1 January 2009 and 31 December 2010 will be included. Clinical and radiological data will be collected longitudinally until the patient reaches one of the study endpoints: intervention (surgery, stereotactic radiosurgery or fractionated radiotherapy), mortality or last date of follow-up. Data will be uploaded to an online Research Electronic Data Capture database with no unique identifiers. External validity of IMPACT will be tested using established statistical methods. Ethics and dissemination: Local institutional approval at each participating centre will be required. Results of the study will be reported through peer-reviewed articles and conferences and disseminated to participating centres, patients and the public using social media