I am Annica, a PhD student from Sweden. Last autumn, I participated as a student in the module “Quality and Quality Improvement in Healthcare” taught by the Department of Health Sciences at the University of Leicester. During my time in Leicester, the SAPPHIRE research group most kindly invited me to their meetings – and at the end of the year also to their Xmas party. I would like to reciprocate their generous hospitality by contributing to this blog with some reflections regarding quality in endoscopic settings, as my research concerns patients’ experiences of undergoing a colonoscopy procedure.
In Sweden, unaccountably, endoscopy services are far behind the European Quality Guidelines (Kaminski et al., 2017) in several areas and this is unfortunately displayed through regional differences in the rate of adverse events (Forsberg et al., 2017). To minimize such variation, structural national quality improvement interventions are required, similar to the initiatives made in England (Valori, 2012). England is on the frontline with its accreditation programme JAG, and the Global Rating Scale, which is “a QI tool for endoscopy services to self-assess against measures associated with safe, high-quality, patient-centred care” (JAG, 2020). However, despite structured and coordinated national quality assurance approaches in past decades, the National Health Service in England still reports variations in the incidence of post-colonoscopy colorectal cancer rates (Burr et al., 2019). This result highlights the importance of continuous quality improvement initiatives.
A good thing about being late to the party, is that we Swedes can learn from the mistakes and successes of others. While I was in the UK, I took the opportunity to visit endoscopy units in Poole, Cheltenham and Gloucester. The patient pathway through the units was very clear and well defined compared to how we work in Sweden. On a concrete level, this pathway was marked out and easy to follow thanks to the architecturally adapted design of the premises, and it was, furthermore, complemented by the patient care document record in which all interventions were documented.
Another difference that I observed was the consent form that had to be signed before the colonoscopy procedure. Believe it or not, in Sweden we don’t have written consent forms before a colonoscopy, or any other procedure, examination or operation. My British colleagues were stunned when I told them this. Obviously, there are legal differences that set our countries apart, but the ethical aspect of this matter is hard to overlook. Patient participation is emphasized in the Swedish Patient Act (2014:821) and in my view it is of the utmost importance for a patient to give informed consent prior to a colonoscopy procedure and possible complications. In a recent study, Dubois et al. (2020) have explored how patients in GI endoscopy describe their experiences, attitudes and preferences regarding patient participation in a Swedish setting. The result shows, among other things, that professionals and patients have joint responsibility for achieving patient participation. This means that we as professionals in Sweden have to invite our patients into decisions regarding their health and that the patients have to be prepared for involvement.
Clearly, the concept of patient participation is not the same as shared decision-making but surely these approaches are in the same area. The thing is, in Sweden we don’t have a national screening programme for colorectal cancer… yet! However, we were supposed to start such a programme this year, but just before we were about to fire the starting pistol Covid-19 struck us hard, and the screening programme has therefore been postponed. Without entangling myself in terminology that I don’t master, I would like to call attention to the valuable work done by Fritzell et al. (2017). They have translated and culturally adapted an American questionnaire which aims to assess shared decision-making regarding colorectal cancer screening. As pointed out by Jervaeus et al. (2020), important work remains in order to develop and optimize the questionnaire. Nevertheless, the topic is added to the Swedish endoscopy agenda and it aims in the right direction, i.e., towards quality and patient participation of which informed consent, as far as I can tell, is an essential part. Tentatively, achieving acceptance of and establishing a written consent form in endoscopic settings in Sweden could be the aim for a future QI initiative.
My autumn in the UK exceeded my greatest expectations and I often think about all the experiences it gave me, both as a person and as a professional. Sweden faces a huge amount of work in order to comply with the European Endoscopy Quality Guidelines, but we are definitely ready and willing to accept the challenge.
Luckily, this is not my last interaction with the SAPPHIRE research group. Due to a scholarship I received earlier this year, I will have the pleasure of inviting one researcher to Malmö University for three days. As soon as it is safe to travel again, we will get on with the planning of this international research exchange. Who knows, it might include some endoscopic settings?
Burr NE, Derbyshire E, Taylor J, et al. Variation in post-colonoscopy colorectal cancer across colonoscopy providers in English National Health Service: population based cohort study. BMJ. 2019;367:l6090.
Dubois H, Creutzfeldt J, Törnqvist M, Bergenmar M. Patient participation in gastrointestinal endoscopy – From patients’ perspectives [published online ahead of print: May 5, 2020]. Health Expect. 2020;10.1111/hex.13066.
Forsberg A, Hammar U, Ekbom A, Hultcrantz R. A register-based study: adverse events in colonoscopies performed in Sweden 2001-2013. Scand J Gastroenterol. 2017;52(9):1042-1047.
Fritzell K, Jervaeus A, Stake Nilsson K, Hultcrantz R, Wengström Y. Translation and cultural adaption of the decisions module for colorectal cancer screening into a Swedish version – the SCREESCO questionnaire. Scand J Gastroenterol. 2017;52(11):1248-1252. JAG – Joint Advisory Group on GI Endoscopy. Retrieved August 10, 2020 from https://www.thejag.org.uk/Default.aspx.
Jervaeus A, Fritzell K, Hultcrantz R, Wengström Y, Kottorp A. Psychometric properties of the SCREESCO questionnaire used in a colorectal cancer screening programme – A Rasch analysis. J Eval Clin Pract. 2020;26(2):541-550.
Kaminski MF, Thomas-Gibson S, Bugajski M, et al. Performance measures for lower gastrointestinal endoscopy: a European Society of Gastrointestinal Endoscopy (ESGE) Quality Improvement Initiative. Endoscopy. 2017;49(4):378-397.
Swedish Patient Act (2014:821). The Swedish Parliament, Stockholm.
Valori R. Quality improvement in Endoscopy in England. Techniques in Gastrointestinal Endoscopy, 2012;(14):63-72.