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      A protocol for an updated and expanded systematic mixed studies review of fear of cancer recurrence in families and caregivers of adults diagnosed with cancer

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          Abstract

          Background

          Fear of cancer recurrence (FCR) is reportedly common, persistent, associated with significant morbidity and often higher in cancer caregivers than cancer patients. This review will summarise empirical research on FCR to understand its prevalence, severity, correlates, course and impact in families and caregivers of adults diagnosed with cancer, and identify tested interventions that reduce its effects.

          Methods

          This review will include peer-reviewed, empirical, qualitative and/or quantitative studies on fear, worry or concern of patients’ cancer returning or progressing among adult family members or caregivers of the cancer patient. It will exclude records reporting no original empirical research on FCR. We will search CINAHL, Embase, PubMed, PsycINFO, ProQuest Dissertations and Theses GLOBAL from 1997 onwards. Pairs of reviewers will conduct independent screening, data extraction and risk of bias assessment. Risk of bias will be assessed with the Cochrane Risk of Bias tool for randomised studies, the Risk of Bias Assessment tool for Nonrandomized Studies and the questions for qualitative studies in the mixed methods appraisal tool. We will conduct a narrative synthesis of quantitative studies and a thematic synthesis of qualitative studies.

          Discussion

          This review will provide further clarity on the prevalence and severity of FCR in families and caregivers and differences by caregiver and care recipient demographic and medical characteristics. Any intervention studies located may indicate therapies or treatments that could reduce FCR in families and caregivers. Findings are expected to provide guidance for individuals and organisations working to manage FCR in families and caregivers of those with cancer.

          Systematic review registration

          This protocol will be registered with PROSPERO after peer-review.

          Electronic supplementary material

          The online version of this article (10.1186/s13643-018-0795-5) contains supplementary material, which is available to authorized users.

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          Most cited references14

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          Testing a tool for assessing the risk of bias for nonrandomized studies showed moderate reliability and promising validity.

          To develop and validate a new risk-of-bias tool for nonrandomized studies (NRSs). We developed the Risk of Bias Assessment Tool for Nonrandomized Studies (RoBANS). A validation process with 39 NRSs examined the reliability (interrater agreement), validity (the degree of correlation between the overall assessments of RoBANS and Methodological Index for Nonrandomized Studies [MINORS], obtained by plotting the overall risk of bias relative to effect size and funding source), face validity with eight experts, and completion time for the RoBANS approach. RoBANS contains six domains: the selection of participants, confounding variables, the measurement of exposure, the blinding of the outcome assessments, incomplete outcome data, and selective outcome reporting. The interrater agreement of the RoBANS tool except the measurement of exposure and selective outcome reporting domains ranged from fair to substantial. There was a moderate correlation between the overall risks of bias determined using RoBANS and MINORS. The observed differences in effect sizes and funding sources among the assessed studies were not correlated with the overall risk of bias in these studies. The mean time required to complete RoBANS was approximately 10 min. The external experts who were interviewed evaluated RoBANS as a "fair" assessment tool. RoBANS shows moderate reliability, promising feasibility, and validity. The further refinement of this tool and larger validation studies are required. Copyright © 2013 Elsevier Inc. All rights reserved.
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            Testing Methodological Guidance on the Conduct of Narrative Synthesis in Systematic Reviews: Effectiveness of Interventions to Promote Smoke Alarm Ownership and Function

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              Fear of cancer recurrence: a systematic literature review of self-report measures.

              Prior research has shown that many cancer survivors experience ongoing fears of cancer recurrence (FCR) and that this chronic uncertainty of health status during and after cancer treatment can be a significant psychological burden. The field of research on FCR is an emerging area of investigation in the cancer survivorship literature, and several standardised instruments for its assessment have been developed. This review aims to identify all available FCR-specific questionnaires and subscales and critically appraise their properties. A systematic review was undertaken to identify instruments measuring FCR. Relevant studies were identified via Medline (1950-2010), CINAHL (1982-2010), PsycINFO (1967-2010) and AMED (1985-2010) databases, reference lists of articles and reviews, grey literature databases and consultation with experts in the field. The Medical Outcomes Trust criteria were used to examine the psychometric properties of the questionnaires. A total of 20 relevant multi-item measures were identified. The majority of instruments have demonstrated reliability and preliminary evidence of validity. Relatively few brief measures (2-10 items) were found to have comprehensive validation and reliability data available. Several valid and reliable longer measures (>10 items) are available. Three have developed short forms that may prove useful as screening tools. This analysis indicated that further refinement and validation of existing instruments is required. Valid and reliable instruments are needed for both research and clinical care. Copyright © 2011 John Wiley & Sons, Ltd.
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                Author and article information

                Contributors
                theleskes@outlook.com.au
                ben.smith@unsw.edu.au
                sylvie.lambert@mcgill.ca
                afaf.girgis@unsw.edu.au
                Journal
                Syst Rev
                Syst Rev
                Systematic Reviews
                BioMed Central (London )
                2046-4053
                31 August 2018
                31 August 2018
                2018
                : 7
                : 134
                Affiliations
                [1 ]GRID grid.429098.e, Psycho-oncology Research Group, Centre for Oncology Education and Research Translation (CONCERT), , Ingham Institute for Applied Medical Research, ; Liverpool, Australia
                [2 ]ISNI 0000 0004 4902 0432, GRID grid.1005.4, South Western Sydney Clinical School, , The University of New South Wales, ; Liverpool, Australia
                [3 ]ISNI 0000 0004 1936 8649, GRID grid.14709.3b, Ingram School of Nursing, , McGill University, ; Montreal, Quebec Canada
                [4 ]St. Mary’s Research Centre, Montreal, Quebec Canada
                Author information
                http://orcid.org/0000-0003-4101-4006
                Article
                795
                10.1186/s13643-018-0795-5
                6119342
                30170619
                0ec45148-5481-414a-8551-13f331fb19d9
                © The Author(s). 2018

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 1 February 2018
                : 7 August 2018
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100001171, Cancer Institute NSW;
                Award ID: 13/TRC/1–01
                Categories
                Protocol
                Custom metadata
                © The Author(s) 2018

                Public health
                systematic review,fear of cancer recurrence,anxiety,concern,worry,recurrence,progression,caregivers,families

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