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      Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review

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          Abstract

          Background

          This systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment.

          Methods

          Ten electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes.

          Results

          Fifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1–84.4%), fatigue (18–76.3%), and “being informed about benefits and side-effects of treatment” (4–66.7%). The most commonly identified  unmet needs for informal caregivers were information needs, including illness and treatment information (26–100%) and care-related information (21–100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey ( N = 8) and Problems and Needs in Palliative Care questionnaire ( N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies.

          Conclusion

          Both advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated  from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.

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          Most cited references76

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          Three approaches to qualitative content analysis.

          Content analysis is a widely used qualitative research technique. Rather than being a single method, current applications of content analysis show three distinct approaches: conventional, directed, or summative. All three approaches are used to interpret meaning from the content of text data and, hence, adhere to the naturalistic paradigm. The major differences among the approaches are coding schemes, origins of codes, and threats to trustworthiness. In conventional content analysis, coding categories are derived directly from the text data. With a directed approach, analysis starts with a theory or relevant research findings as guidance for initial codes. A summative content analysis involves counting and comparisons, usually of keywords or content, followed by the interpretation of the underlying context. The authors delineate analytic procedures specific to each approach and techniques addressing trustworthiness with hypothetical examples drawn from the area of end-of-life care.
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            Testing the reliability and efficiency of the pilot Mixed Methods Appraisal Tool (MMAT) for systematic mixed studies review.

            Systematic literature reviews identify, select, appraise, and synthesize relevant literature on a particular topic. Typically, these reviews examine primary studies based on similar methods, e.g., experimental trials. In contrast, interest in a new form of review, known as mixed studies review (MSR), which includes qualitative, quantitative, and mixed methods studies, is growing. In MSRs, reviewers appraise studies that use different methods allowing them to obtain in-depth answers to complex research questions. However, appraising the quality of studies with different methods remains challenging. To facilitate systematic MSRs, a pilot Mixed Methods Appraisal Tool (MMAT) has been developed at McGill University (a checklist and a tutorial), which can be used to concurrently appraise the methodological quality of qualitative, quantitative, and mixed methods studies. The purpose of the present study is to test the reliability and efficiency of a pilot version of the MMAT. The Center for Participatory Research at McGill conducted a systematic MSR on the benefits of Participatory Research (PR). Thirty-two PR evaluation studies were appraised by two independent reviewers using the pilot MMAT. Among these, 11 (34%) involved nurses as researchers or research partners. Appraisal time was measured to assess efficiency. Inter-rater reliability was assessed by calculating a kappa statistic based on dichotomized responses for each criterion. An appraisal score was determined for each study, which allowed the calculation of an overall intra-class correlation. On average, it took 14 min to appraise a study (excluding the initial reading of articles). Agreement between reviewers was moderate to perfect with regards to MMAT criteria, and substantial with respect to the overall quality score of appraised studies. The MMAT is unique, thus the reliability of the pilot MMAT is promising, and encourages further development. Copyright © 2011 Elsevier Ltd. All rights reserved.
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              What are the unmet supportive care needs of people with cancer? A systematic review.

              The identification and management of unmet supportive care needs is an essential component of health care for people with cancer. Information about the prevalence of unmet need can inform service planning/redesign. A systematic review of electronic databases was conducted to determine the prevalence of unmet supportive care needs at difference time points of the cancer experience. Of 94 articles or reports identified, 57 quantified the prevalence of unmet need. Prevalence of unmet need, their trends and predictors were highly variable in all domains at all time points. The most frequently reported unmet needs were those in the activities of daily living domain (1-73%), followed by psychological (12-85%), information (6-93%), psychosocial (1-89%) and physical (7-89%). Needs within the spiritual (14-51%), communication (2-57%) and sexuality (33-63%) domains were least frequently investigated. Unmet needs appear to be highest and most varied during treatment, however a greater number of individuals were likely to express unmet need post-treatment compared to any other time. Tumour-specific unmet needs were difficult to distinguish. Variations in the classification of unmet need, differences in reporting methods and the diverse samples from which patients were drawn inhibit comparisons of studies. The diversity of methods used in studies hinders analysis of patterns and predictors of unmet need among people with cancer and precludes generalisation. Well-designed, context-specific, prospective studies, using validated instruments and standard methods of analysis and reporting, are needed to benefit future interventional research to identify how best to address the unmet supportive care needs of people with cancer.
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                Author and article information

                Contributors
                (852) 2766 4112 , tao.jy.wang@connect.polyu.hk
                (852) 2766 6396 , alex.molasiotis@polyu.edu.hk
                (852) 2766 6757 , betty.chung@polyu.edu.hk
                (61) 8 8946 6942 , benjamin.tan@cdu.edu.au
                Journal
                BMC Palliat Care
                BMC Palliat Care
                BMC Palliative Care
                BioMed Central (London )
                1472-684X
                23 July 2018
                23 July 2018
                2018
                : 17
                : 96
                Affiliations
                [1 ]ISNI 0000 0004 1764 6123, GRID grid.16890.36, School of Nursing, , The Hong Kong Polytechnic University, ; Hung Hom, Hong Kong
                [2 ]ISNI 0000 0001 2157 559X, GRID grid.1043.6, College of Nursing and Midwifery, , Charles Darwin University, ; Darwin, Australia
                Article
                346
                10.1186/s12904-018-0346-9
                6057056
                30037346
                24db3f66-8cf5-45e2-8b5e-39bfcdd1e36f
                © 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
                : 26 May 2017
                : 25 June 2018
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2018

                Anesthesiology & Pain management
                Anesthesiology & Pain management

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