A study, led by Bristol University, has been published in the BMJ Open examining the content and quality of written information provided by NHS surgical centres for patients under going surgery for oesophageal cancer.
The study emphasises the importance of providing of high-quality information in the care of patients with localised oesophageal cancer, the treatment of which is complex and associated with major morbidity and mortality.
It identified 43 NHS hospital trusts in the UK that perform oesophageal cancer surgery from the National Oesophago-gastric Cancer Audit Report.
All 43 hospital websites were systematically searched for patient information leaflets (PILs), and clinical nurse specialists contacted (by telephone and/or email) to request electronic documents or paper copies by post.
The study focused on English language versions of PILs about oesophagectomy, ie, those describing operative techniques, complications and outcomes of surgery. Excluded were leaflets solely describing background information about oesophageal cancer or non-surgical treatments.
41 hospitals provided leaflets. Ten centres used a generic written information leaflet (6 used Macmillan ‘understanding cancer of the gullet’ and 4 used EIDO ‘oesophagectomy’ ) either alone or in combination with a centre-specific PIL. Thirty PILs were designed by individual centres, providing a total of 32 leaflets for analysis.
The analysis of the leaflets was conducted on a thematic basis and using the DISCERN quality criteria. The researchers findings include:
- Six information themes were established: (1) the benefits of surgery, (2) preparing for surgery, (3) operative and perioperative details, (4) in-hospital complications, (5) life after surgery and (6) long-term outcomes. Each PIL contained information about all six themes, although the amount and completeness of the information varied.
- Most PILs described technical aspects of the operation, however the amount of detail provided varied, and more complex issues were less frequently or incompletely discussed.
- Most PILs did not mention the chances of long-term survival, and information about the potential complications of surgery was conflicting.
- 11 PILs highlighted the possibility of inoperability at planned surgery, although none specified the implications of this serious event, which converts treatment from curative to palliative intent.
- Few leaflets addressed the effects of surgery on health-related quality of life (HRQL), an important issue as 50% of patients develop recurrent disease within 2 years and this group rarely regain preoperative HRQL levels. Of those that did address this issue none disclosed information about the amount of time this might take, and that in the case of recurrence, HRQL may never recover.
- Using the DISCERN criteria, the lowest scoring question related to disclosure of the sources of information used to compile the leaflet, as none of the PILs included this.
The study recommends the development of nationally agreed standard information sheets that include a minimum set of information to be communicated to all patients undergoing a certain procedure. This ‘core’ information can then be used as a platform for further discussions, tailored to individual patient needs.
The researchers conclude that the current written information provided to patients does not support a shared decision making approach in this area of cancer surgery.
The full study can be read here.
Assessing the quality of written information provision for surgical procedures: a case study in oesophagectomy
N S Blencowe, S Strong, A G K McNair, N Howes, J Elliot, K N Avery, J M Blazeby
BMJ Open 2015;5:e008536 doi:10.1136/bmjopen-2015-008536