Matthew Johnson1, Angela Mary Tod2, Stephen Brummell3, Karen Collins3. 1. Royal Brompton and Harefield NHS Foundation Trust, London, UK. Electronic address: m.johnson@rbht.nhs.uk. 2. School of Nursing, Midwifery and Social Work, University of Manchester, UK. 3. Centre for Health and Social Care Research, Sheffield Hallam University, UK.
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. They value help in making sense of this information and generally want information that supports hope. Working with patients to understand and manage the uncertainty of their situation may be particularly valuable. Further research is needed to fully understand the process of prognostic information giving and what information patients want regarding recurrence risk. Research should be aimed at identifying strategies helpful to patients in managing uncertainty inherent in their situation.
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. They value help in making sense of this information and generally want information that supports hope. Working with patients to understand and manage the uncertainty of their situation may be particularly valuable. Further research is needed to fully understand the process of prognostic information giving and what information patients want regarding recurrence risk. Research should be aimed at identifying strategies helpful to patients in managing uncertainty inherent in their situation.
Authors: Frances Bunn; Claire Goodman; Jill Manthorpe; Marie-Anne Durand; Isabel Hodkinson; Greta Rait; Paul Millac; Sue L Davies; Bridget Russell; Patricia Wilson Journal: BMJ Open Date: 2017-02-07 Impact factor: 2.692
Authors: Anne Brédart; Aude Rault; Johanna Terrasson; Etienne Seigneur; Leanne De Koning; Elisabeth Hess; Alexia Savignoni; Paul Cottu; Jean-Yves Pierga; Sophie Piperno-Neumann; Manuel Rodrigues; Carole Bouleuc; Sylvie Dolbeault Journal: JMIR Res Protoc Date: 2022-01-12