Measuring Patient Experience in Inflammatory Bowel Disease Care: A Key Component of Continuous Quality Improvement

It is important to understand patient experience as we strive to provide patient-centred care in inflammatory bowel disease [IBD]. Patient experience is a composite of all the interactions and interplay between the healthcare system and the patient, which in the case of IBD is often long-term and in multi-dimensional, multi-specialty and multi-settings. Patients highly value getting timely appointments, proper access to information and understanding it, engagement in decisions and good communication. Patient experience, however, is quite distinct from patient satisfaction. Satisfaction depends on whether expectations from the healthcare system have been met1 and this may depend on factors that have set these in the first place. In contrast, patient experience depends on whether what should have occurred in quality healthcare did actually take place and therefore is more specific and probing. Patient experience of their healthcare in chronic disease management is variable and multifactorial. Patient experience is a good indicator of healthcare quality and may, but not always, relate to healthcare outcomes.2 Measures of patient experience differ from the more commonly used satisfaction surveys and provide more information for improving service in a healthcare setting. Descriptive feedback, such as surveys, interviews and focus groups, is generally qualitative1 and may not be ideally suitable for measurable longitudinal tracking integrated into improvement programmes. Patient satisfaction surveys are generally unable to provide deep insight into issues and are prone to be biased towards either negative feedback or non-specific general satisfaction. While generic patient-reported experience measures [PREMs] are often used for inpatient services or surgery, specific condition-related PREMs are more relevant to ambulatory management of chronic diseases such as IBD. PREMs are less likely to be influenced by patient expectations than patient satisfaction surveys. Patient-reported outcome measures [PROMs] are more known and increasingly adopted in IBD and reflect the effectiveness of health care in reducing symptoms, improving function and quality of life, and the occurrence of complications, and these are increasingly incorporated as targets of management. Experience of care is less often utilized as an important dimension of quality but, for patients, specific aspects of health care, such as their dignity, information, trust in healthcare staff, timeliness and cleanliness are just as important. The subjective nature of such perceptions has held back adoption of these measures as part of quality of care other than patient satisfaction surveys. Key questions remain regarding whether experience and effectiveness or safety are associated in IBD and whether these depend of patient population characteristics or provider processes. Recommendations to improve quality of care in an IBD unit is often based on expert recommendations and does not benefit from patient feedback regarding their experience of the quality of care. This is at least partially due to the lack of validated, reliable tools to measure patient-reported experience of the quality of care they have received. In chronic heterogenous conditions with a variety of manifestations, complications, multidisciplinary teams, the setting of care and healthcare systems, PREMs are challenging to incorporate into continuous improvement of quality of care. In this context, the WE-CARE IBD score has been developed with active engagement of patients, validated and administered to over 1000 IBD patients.3 The WE-CARE PREM provided a unique patient perspective on the quality of care they received and a distinct dimension of quality of care, unlike a top-down expert-driven standard of care. Incorporation of such PREMs into a matrix of a care quality environment to generate data that drive a culture of continuous improvement is very important, because the relationship between PREMs and patient-reported outcome measures may be weak and non-linear. However, systematic reviews across a range of diseases have shown that patient experience has a positive association with clinical effectiveness and patient safety.2 Having the WE-CARE tool will now provide support for such studies. The data from PREMs cannot be used alone as quality indicators but provide valuable patient-driven input to drive improvement. Clinicians often find that PREMs may be difficult to interpret and act upon. For comparison between different organizations, it is important to consider patient mix and organizational issues and settings. Non-response and selection bias are important when engaging with the patient population. The WE-CARE IBD score has the advantage of being brief, IBD-specific and easy to use compared with other available and more detailed measures. It reflects the views of patients and was co-developed with the active engagement of patients followed by validation. It may be integrated into IBD unit practice as a quality improvement tool and gives a voice to patients. Novel tools are being evaluated with regard to IBD patients that provide a glimpse into the problems patients are faced with, using the novel PRISM tool and also disability of patients [IBD-disk] as an electronic app.4,5 Using systems in place to monitor different dimensions might be most reflective of quality, balancing a top-down approach with a patient-driven approach. Figure 1 illustrates the different components that can be used to assess quality of care that can be adapted to regional and national healthcare systems. Specific settings such as transition clinics from paediatric to adult care may require adaptation of PREM tools and further validation. It is also important to validate WE-CARE IBD across different IBD centres in different countries using high-fidelity multi-language translation similar to recent studies with the IBD-Disability Index.6 A particular challenge will be to incorporate PREMs into telemedicine care of IBD patients, but this will also provide an opportunity to understand and improve telemedicine from the perspective of IBD patients. Patient-reported experience measures [PREMs] such as WE-CARE IBD as an integral pillar of delivering high-quality of care to IBD patients. This needs to be part of an overall structure of continuous measurement and assessment of multiple dimensions of care.E = expert/expert society-driven; S = service-driven, local and national; P = patient-driven. PREMs are key patient-driven tools. Patient-reported experience measures [PREMs] such as WE-CARE IBD as an integral pillar of delivering high-quality of care to IBD patients. This needs to be part of an overall structure of continuous measurement and assessment of multiple dimensions of care.E = expert/expert society-driven; S = service-driven, local and national; P = patient-driven. PREMs are key patient-driven tools. Prospective longitudinal measurements are needed to track improvements either at an IBD unit level or at individual patient or at cohort level stratified by defined characteristics. Sensitivity to change after implementing improvement steps is an important operating characteristic of the score that requires further studies. It is important that PREMs do reflect outcomes defined by PROMs or by disability, hospitalization and surgery rates, and this is key to using PREMs in patient care measurements. Having an easy-to-administer PREM such as WE-CARE makes the task easier. This will enable services to act on the experiences of patients based on specific questions relevant to IBD quality of services rather than general feedback that lacks enough information to act upon and implement improvement programmes. In this regard, IBD care lags behind longitudinal data-driven quality improvement programmes in procedural service units such as endoscopy. Measuring patient experience in IBD clinics is important and having a convenient tool such as WE-CARE IBD makes it feasible to conduct studies aimed at improving patient experience. Such IBD-specific PREMs will complement PROMs that are increasingly being used in IBD and will greatly enhance empowerment of IBD patients. Having validated and at the same time easy-to-administer IBD-specific PREM tools has the potential to significantly impact the drive to improve quality of care provided in IBD clinics.7 None. None. Both authors contributed equally in drafting this Editorial.

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