Inflammatory bowel disease patient perceptions of diagnostic and monitoring tests and procedures

Abstract

Background Inflammatory Bowel Disease (IBD) with its high incidence and prevalence rates in Canada generates a heavy burden of tests and procedures. The purpose of this study is to gain a better understanding of the transfer of information from physician to patient, as well as the patient understanding and perceptions about the tests and procedures that are ordered to them in the context of IBD diagnosis and monitoring. Methods An online questionnaire was completed by 210 IBD patients in Canada. Information on the five most-often used tests or procedures in IBD diagnosis/monitoring was collected. These include: general blood test, colonoscopy, colon biopsy, medical imaging and stool testing. Results The general blood test is both the most ordered and most refused tool. It is also the one with which patients are the least comfortable, the one that generates the least concern and the one about which physicians provide the least information. The stool test is the test/procedure with which patients are the most comfortable. Procedures raise more concerns among patients and physicians provide more information about why they are needed, their impact and the risks they present. Very little information is provided to patients about the risks of having false positives or negative tests. Conclusions This study provides an initial understanding of patient perceptions, the transfer of information from a physician to a patient and a patient’s understanding of the tests and procedures that will be required to treat IBD throughout what is a lifelong disease. The present study takes a first step in better understanding the acceptance of the test or procedure by IBD patients, which is essential for them to adhere to the monitoring process. Electronic supplementary material The online version of this article (10.1186/s12876-019-0946-8) contains supplementary material, which is available to authorized users.

Parent Perspectives of Diagnostic and Monitoring Tests Undertaken by Their Child with Inflammatory Bowel Disease

“…The current study found that test explanations by a referring clinician significantly improved parents' levels of understanding when their child had a general blood test, faecal test, US or colonoscopy. Moreover, parents' understanding of the current IBD tests was not influenced by their level of education, similar to the finding in adults with IBD [ 23 ]. Collectively the present findings build upon the parent's role as an integral partner of patient- and family-centred care [ 25 ].…”

“…The two most ordered tests for children with IBD, as reported by their parents in the current study, are similar to those undertaken by adults with IBD, where general blood tests were the most ordered test by their clinician (97%), followed by colonoscopy (93%) [ 23 24 ]. Furthermore, in the Canadian study, medical imaging (not specified) was the least frequently ordered test (58%) [ 23 ].…”

“…A study by Heida et al [ 29 ] found adolescents with IBD accept the idea of faecal sampling, but three-quarters (75%) of parents were assisting with placement of their child's stool in the container. Adults have variable comfortability and acceptability of utilising faecal tests for monitoring their disease [ 23 30 ]. Early introduction of autonomy in faecal collection may be an important process for children, especially as they start to transition to adult IBD care.…”

Systematic Review: Patient Perceptions of Monitoring Tools in Inflammatory Bowel Disease

“…Further information was provided by the authors of two abstracts ( 28 , 29 ). Five studies compared two monitoring tools, two studies compared multiple imaging modalities ( 28 , 30 ) and three studies compared multiple monitoring tools in CD and UC populations ( 29 , 31 , 32 ).…”

“…In all studies, the participants had a risk of prior exposure to the outcome. Two studies had inadequate follow-up with 48% and 22.5% response rates ( 30 , 32 ).…”