Surgical patients are facing new territory. On the one hand they hear that admission to hospital for elective surgery carries an increased risk of getting covid-19, on the other, that delaying surgery may cause problems and that operations can be done safely provided precautions are taken. Making an informed decision is vital. In this article Mary Venn, surgical research fellow, Carrie Tierney Weir, a patient with inflammatory bowel disease, and Daoud Chaudhry, a medical student, describe how the CovidSurg collaborative spurred the development of co-produced patient information resources about the risks of undergoing surgery during the covid-19 pandemic.
Mary Venn: Research acted as a catalyst for patient engagement
The international CovidSurg collaborative (https://globalsurg.org/covidsurg/) identified a 24% overall mortality rate in patients with perioperative SARS-CoV-2 infections in a multicentre, cohort study in 235 hospitals from 24 countries. [1] Postoperative pulmonary complications were far more frequent than pre-pandemic rates in these patients, occurring in 51%. These rates parallel the worst mortality rates among community acquired covid-19 and surpass previous mortality rates demonstrated in large cohort studies of abdominal surgery in a variety of settings. [2-4]
These findings underline the need to discuss covid-related complications with patients as part of the surgical consent process. Risks can be reduced, but they cannot be eliminated. [5] The findings of the first CovidSurg cohort study (locked on 30 April 2020) prompted the research team to immediately draw up draft information for patients due to undergo surgery. We also established a Patient Advisory Group (PAG) to appraise and develop information resources and a web based platform for patients and carers. Members were found via the People and Research Together network, which connects research groups with patients and carers who have registered an interest in supporting research. We included those with both benign and malignant conditions and a few who had experience of hospital care during the pandemic.
Our opening submission to the group was a shiny eight page patient information booklet that felt “almost finished.” We expected a stamp of approval on our smart graphics and catchy titles. It took some humility to watch it taken apart; both what it did not contain and our use of confusing terminology, for example, comments such as, “Don’t use ‘era’’’, “what do you mean by recovery period?”, “the calendar icon has an 8 on it, does that mean 8 days?”
Carrie Tierney Weir, PAG member and IBD patient
When my surgeon told me I needed major bowel surgery, I had difficulty concentrating and barely retained any of the information provided during the consultation. I believe this is a normal reaction for many patients. Now, during the covid-19 pandemic nothing is normal. Every concern is amplified. More than ever, verbal discussion at a consultation should, in my view, be supported by detailed information that patients can read and digest in our own time.
When I was asked to volunteer for the CovidSurg project I was happy to do so. I have benefited enormously from the care and support of the NHS since I was diagnosed with Inflammatory Bowel Disease and I wanted to do something in return.
The Patient Advisory Group I joined consists of eight people, a mix of patients and carers. Our first meeting was held by video conference in May and led by a surgical representative from the CovidSurg collaborative. We exchanged views about what information we needed to make a decision about whether or not to undergo surgery. It soon became clear that we had common views as well as substantial knowledge and experience to share. Those unfamiliar with video conferencing soon gained the confidence to participate fully.
The key questions we all wanted answers to included:
- Why are operations being cancelled?
- How are patients being prioritised for surgery?
- What are hospitals doing to keep patients safe?
- What can patients do to stay safe and best prepare for an operation?
- What will happen if I need emergency surgical care?
Collaborating on producing new resources
Patients wanted the risk of perioperative covid-19 quantified clearly in numbers and detailed information about what measures hospitals are taking to keep them safe. Their questions extended well beyond the information we (surgeons) thought they needed to know and included questions about whether visitors would be allowed, how they would be able to communicate with friends and family, and if they would be discharged home sooner than usual.
Together we created a Patient Information Booklet to answer their questions and provide the latest evidence about patient outcomes with perioperative SARS-CoV-2 infection. These resources are generic for patients undergoing surgery during the pandemic. Working with charitable organisations we have produced an Easy Read version for those with learning disabilities and another for patients with dyslexia. To promote global access, the network’s “Dissemination Committee” has translated the information and designed context and country specific resources in the following languages: Arabic, Brazilian, French, German, Greek, Italian, Japanese, Malay, Portuguese, Romanian, Russian, Spanish, Turkish, Urdu, Shona and Ndebele (spoken in Zimbabwe). These resources are available on our patient-facing webpages.
In addition we have co-produced lay summaries for research papers produced by CovidSurg which are accessible on a ‘Research Explained web platform. The first patient information booklet went live on 9 June and can be downloaded by any patient or surgical team member bit.ly/surgeryduringcovid.
Advantages and challenges of virtual exchange
Covid-19 has advanced the use of information technology in the NHS by years. Both patients and clinicians have had to become attuned to digital communication and video consultations. Patients have also had to adapt to digital pre- and postoperative assessments which may well become the norm beyond covid and will reduce the burden of outpatient hospital visits. Development of digital patient information fits well with this new landscape and we are able to track our patient resource downloads to monitor the impact and reach of the work, to ensure future similar projects are supported. It will be essential however to assess the reliability of virtual exchange in all contexts.
Many clinicians have broadened their skill sets by learning to host webinar teaching sessions and to publish online material in webpages. Members of the PAG valued being able to communicate and work safely from their own homes. They described feeling valued and uninhibited by the less formal setting and more easily able to contribute as screen shares enabled all members to view the same content simultaneously.
The expansion of digital working needs to ensure no one is excluded. Initially we had to help members of the patient group with internet access, setting up teleconferencing software and talk to them about data sharing online, consent to participation and the option to do so without being “on camera.” As the PAG evolved we suggested they co-deliver a patient facing webinar—Q&As about surgery and covid-19. The group has agreed to explore this when we see how widely the patient information resources are accessed.
Daoud Chaudhry, 4th year medical student on elective with CovidSurg, University of Birmingham
I was sceptical initially about how much value a PAG could add, but oh wow, how incorrect I was! Working with the group helped me realise how undervalued patients often are in decision-making processes. Their feedback during the design of the information booklet was fundamental to producing a useful final product. While we are taught the importance of shared decision-making I had assumed this was limited to clinical consultations. Working on this project has made me realise its applicability at every level of decision-making. While it can seem complex to engage patients, it is an endeavour which is definitely worth pursuing and one I will aim to [adopt] in my future practice.
Next steps
The CovidSurg PAG has evaluated the protocol for the next GlobalSurg/CovidSurg Week study that will determine when we can most safely perform surgery after covid-19 infection. PAG engagement at the design stage has meant that the study will answer questions important to patients as well as healthcare providers. Going forward the publication of each CovidSurg research paper will include a lay summary. As new research is published, digital patient resources will be updated and the PAG will work with us to ensure accessibility. Resources have never been produced so rapidly or updated so quickly. More than ever, healthcare providers must enable surgical patients to access the latest information.
For more information, please visit bit.ly/surgerycovid.
Mary L Venn, clinical research fellow and general surgery ST6 out of programme, Queen Mary University of London, @MaryVenn4
Carrie Tierney Weir, communications specialist, IBD patient and patient advisory group member.
The COVIDSurg Collaborative is a global network of surgeons and anaesthetists working together to understand the impact of COVID-19 on surgical patients.
Competing interests: None declared.
Acknowledgements: Lesley Booth, Daoud Chaudhry, Karolin Kroese, Maria Picciochi, April Roslani, Raza Sayyed, Gaetano Gallo, Charles Knowles, Haytham Kaafarani, Elizabeth Li, Joana Simões, James Glasbey, Dmitri Nepogodiev, Aneel Bhangu.
References
- CovidSurg Collaborative. Mortality and pulmonary complications in patients undergoing surgery with perioperative SARS-CoV-2. Lancet. 2020;396(10243):27–38.
- Intensive Care National Audit and Research Centre. ICNARC report on COVID-19 in critical care [Internet]. 2020. Available from: https://www.icnarc.org/our-audit/audits/cmp/reports
- NELA Project Team. Fourth patient report of the National Emergency Laparotomy Audit [Internet]. 2018. Available from: https://www.hqip.org.uk/wp-content/uploads/2018/11/The-Fourth-Patient-Report-of-the-National-Emergency-Laparotomy-Audit-October-2018.pdf
- GlobalSurg Collaborative. Mortality of emergency abdominal surgery in high-, middle- and low-income countries. Br J Surg. 2016;103(8):971–88.
- Sokol D, Dattani R. How should surgeons obtain consent during the covid-19 pandemic? BMJ. 2020;369(June):m2539.