Prognostic communication in cancer: A critical interpretive synthesis of the literature

Abstract

Article available under the terms of the CC-BY-NC-ND licence (https://creativecommons.org/licenses/by-nc-nd/4.0/) eprints@whiterose.ac.uk https://eprints.whiterose.ac.uk/ Reuse Unless indicated otherwise, fulltext items are protected by copyright with all rights reserved. The copyright exception in section 29 of the Copyright, Designs and Patents Act 1988 allows the making of a single copy solely for the purpose of non-commercial research or private study within the limits of fair dealing. The publisher or other rights-holder may allow further reproduction and re-use of this version -refer to the White Rose Research Online record for this item. Where records identify the publisher as the copyright holder, users can verify any specific terms of use on the publisher's website. TakedownIf you consider content in White Rose Research Online to be in breach of UK law, please notify us by emailing eprints@whiterose.ac.uk including the URL of the record and the reason for the withdrawal request. Abstract:Purpose: For patients with cancer, providing appropriate information about prognosis or chances of recurrent disease remains a difficult area of practice. Much research has suggested that patients want to be given all available information, although the realities of attempting to do this are complex and may be perceived by some as uncaring. A review of recent literature was undertaken to explore the process of disclosure, patient experience and preferences for information regarding prognosis or risk of recurrence.Methods: A systematic approach was taken to searching electronic databases for relevant literature from 2004 to June 2014. Primary research from a range of methodological approaches was included and critical interpretive synthesis was employed to explore themes and identify gaps in the evidence.Results: Twenty papers were identified as appropriate. They were diverse in objectives and patient groups. Themes identified included: the nature of prognostic information, patient need for prognostic information, patient need to maintain hope, balancing hope and realism, patient factors, disease factors and clinician factors. A thematic framework was developed.Conclusions: Patients often struggle to fully understand complex prognostic information. information preferences, including information on prognosis and have indicated that most patients prefer to be given all available information good and bad (Cassileth et al., 1980; Cox et al., 2006; Jenkins et al., 2001). However, a qualitative study with acute leukaemia patients suggested a more nuanced requirement for information giving balanced with maintaining hope (Friis et al., 2003). In 2005 a wide-ranging and comprehensive review of the literature exploring communication of prognosis in cancer care was published (Hagerty et al., 2005a). This review explored evidence from early stage cancer patients, as well as with more disseminated disease, and at end of life and included studies published up until the end of 2003. Eleven research questions were constructed inclu...

Adding a Wider Range and “Hope for the Best, and Prepare for the Worst” Statement: Preferences of Patients with Cancer for Prognostic Communication

“…Likewise, implicit information such as “years” and a specific event was not preferred overall. These are consistent with prior studies indicating that patients value explicit prognostic information . These findings suggest that clinicians should be encouraged to disclose explicit prognostic information if deemed appropriate and provide both best/worst cases and the typical range in addition to the median survival time.…”

“…Likewise, implicit information such as "years" and a specific event was not preferred overall. These are consistent with prior studies indicating that patients value explicit prognostic information [2,11].…”

Discussing potential recurrence after lung cancer surgery: Uncertainties and challenges

“…These findings suggest that both clinicians and patients appeared to be managing uncertainty as a dynamic process during these information exchanges. The findings are supported by previous literature and suggest a tacit agreement exists between professionals and patients with lung cancer to manage uncertainty in a way that promotes hope (Johnson et al., ). Professionals talked about presenting information honestly and realistically, not damaging patients’ fragile hope by giving too much or the wrong type information.…”

“…Prognostic communication can have an impact on patients' sense of hope, both positively and negatively (Thorne, Oglov, Armstrong, & Hislop, 2007). Two published reviews have explored prognostic communication in the wider cancer population (Hagerty, Butow, Ellis, Dimitry, & Tattersall, 2005;Johnson, Tod, Brummell, & Collins, 2015). Much of the evidence on prognostic communication has focused on the breast cancer population.…”

Understanding treatment decisions from the perspective of people with relapsing remitting multiple Sclerosis: A critical interpretive synthesis

“…Critical Interpretative Synthesis -a systematic review method devised by Dixon Woods in 2006 [17] to synthesise a large, and/or methodologically and thematically heterogeneous literature -was employed to investigate how various dimensions impacting shared decision making are important when PwRRMS make DMT decisions. This method is widely used in applied healthcare studies [18][19][20] and it uses purposive sampling to identify sources that can provide significant knowledge of a particular phenomenon. The analysis aims to generate theoretical categories (hypotheses) based on the critical interpretation of the literature drawn from a bigger pool of sources.…”