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      Patient priorities in relation to surgery for gastric cancer: qualitative interviews with gastric cancer surgery patients to inform the development of a core outcome set

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          Abstract

          Objective

          The reporting of outcomes in surgical trials for gastric cancer is inconsistent. The GASTROS study ( GAstric Cancer Surgery TRials Reported Outcome Standardisation) aims to address this by developing a core outcome set (COS) for use in all future trials within this field. A COS should reflect the views of all stakeholders, including patients. We undertook a series of interviews to identify outcomes important to patients which would be considered for inclusion in a COS.

          Setting

          All interviews took place within the UK. Interviews were carried out face-to-face at hospitals and cancer support centres or via the telephone.

          Participants

          Twenty participants at varying stages of recovery following surgery for gastric cancer with curative intent.

          Design

          Qualitative design using semistructured interviews, supported by an interview guide which was iteratively modified; thematic analysis was used to explore patient priorities.

          Results

          Six themes enveloping 38 outcomes were identified; surviving and controlling cancer, technical aspects of surgery, adverse events from surgery, recovering from surgery, long-term problems following surgery and long-term life impact of surgery. The ‘most important’ patient priority was to be ‘cured of cancer’.

          Conclusion

          Surgical trials for gastric cancer should consider broader priorities of patients when choosing which outcomes to report. This study highlighted the importance of longer-term outcomes such as cancer survival. Outcomes identified in this study will be used to inform an international Delphi survey to develop a COS in this field.

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          Most cited references14

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          A Qualitative Framework for Collecting and Analyzing Data in Focus Group Research

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            Patient perspectives on the impact of fibromyalgia.

            The objective of this study was to elicit and assess important symptom domains and the impact of fibromyalgia on patients' quality of life and functioning from a patient's perspective. The intention was to collect this information as part of an overall effort to overcome shortcomings of existing outcome measures in fibromyalgia. This was a qualitative study in which six focus group sessions with 48 women diagnosed with fibromyalgia were conducted to elicit concepts and ideas to assess the impact of fibromyalgia on their lives. The focus groups conducted with fibromyalgia patients identified symptom domains that had the greatest impact on their quality of life including pain, sleep disturbance, fatigue, depression, anxiety, and cognitive impairment. Fibromyalgia had a substantial negative impact on social and occupational function. Patients reported disrupted relationships with family and friends, social isolation, reduced activities of daily living and leisure activities, avoidance of physical activity, and loss of career or inability to advance in careers or education. The findings from the focus groups revealed that fibromyalgia has a substantial negative impact on patients' lives. A comprehensive assessment of the multiple symptoms domains associated with fibromyalgia and the impact of fibromyalgia on multidimensional aspects of function should be a routine part of the care of fibromyalgia patients.
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              The use of qualitative methods to inform Delphi surveys in core outcome set development

              Background Core outcome sets (COS) help to minimise bias in trials and facilitate evidence synthesis. Delphi surveys are increasingly being used as part of a wider process to reach consensus about what outcomes should be included in a COS. Qualitative research can be used to inform the development of Delphi surveys. This is an advance in the field of COS development and one which is potentially valuable; however, little guidance exists for COS developers on how best to use qualitative methods and what the challenges are. This paper aims to provide early guidance on the potential role and contribution of qualitative research in this area. We hope the ideas we present will be challenged, critiqued and built upon by others exploring the role of qualitative research in COS development. This paper draws upon the experiences of using qualitative methods in the pre-Delphi stage of the development of three different COS. Using these studies as examples, we identify some of the ways that qualitative research might contribute to COS development, the challenges in using such methods and areas where future research is required. Results Qualitative research can help to identify what outcomes are important to stakeholders; facilitate understanding of why some outcomes may be more important than others, determine the scope of outcomes; identify appropriate language for use in the Delphi survey and inform comparisons between stakeholder data and other sources, such as systematic reviews. Developers need to consider a number of methodological points when using qualitative research: specifically, which stakeholders to involve, how to sample participants, which data collection methods are most appropriate, how to consider outcomes with stakeholders and how to analyse these data. A number of areas for future research are identified. Conclusions Qualitative research has the potential to increase the research community’s confidence in COS, although this will be dependent upon using rigorous and appropriate methodology. We have begun to identify some issues for COS developers to consider in using qualitative methods to inform the development of Delphi surveys in this article.
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                Author and article information

                Journal
                BMJ Open
                BMJ Open
                bmjopen
                bmjopen
                BMJ Open
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2044-6055
                2020
                12 February 2020
                : 10
                : 2
                : e034782
                Affiliations
                [1 ] departmentDepartment of Oesophago-Gastric Surgery , Salford Royal NHS Foundation Trust , Salford, UK
                [2 ] departmentDivision of Cancer Sciences, School of Medical Sciences, Faculty of Biology, Medicine and Health , The University of Manchester , Manchester, UK
                [3 ] departmentCentre for Surgical Research and Bristol NIHR Biomedical Research Centre , University of Bristol , Bristol, UK
                [4 ] departmentPaediatric ENT Department , Manchester University NHS Foundation Trust , Manchester, UK
                [5 ] departmentDivision of Infection, Immunity and Respiratory Medicine, Faculty of Biology, Medicine and Health , University of Manchester , Manchester, United Kingdom
                [6 ] departmentCentre for Primary Care , University of Manchester , Manchester, UK
                Author notes
                [Correspondence to ] Mr Bilal Alkhaffaf; bilal.alkhaffaf@ 123456srft.nhs.uk
                Author information
                http://orcid.org/0000-0001-5751-1846
                http://orcid.org/0000-0003-1587-0802
                Article
                bmjopen-2019-034782
                10.1136/bmjopen-2019-034782
                7044961
                32051319
                0ae5c50f-6d43-46fe-b2a1-063653504b59
                © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.

                This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

                History
                : 08 October 2019
                : 15 January 2020
                : 21 January 2020
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100000272, National Institute for Health Research;
                Award ID: DRF-2015-08-023
                Categories
                Surgery
                Original Research
                1506
                1737
                Custom metadata
                unlocked

                Medicine
                adult surgery,gastrointestinal tumours,oncology,surgery
                Medicine
                adult surgery, gastrointestinal tumours, oncology, surgery

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