A Short Knowledge Assessment Tool Is Valid and Acceptable for Adults with Inflammatory Bowel Disease

Inflammatory bowel disease (IBD) is a chronic condition of the gut characterised by phases of active disease and remission. The main clinical sub-types are Crohn’s disease (CD) and ulcerative colitis (UC). There is currently no medical cure, and patients require treatment and specialist monitoring over the course of their life. The complex nature of the disease may necessitate multi-faceted treatment regimens, and outcomes may be improved if the patient is actively involved in managing their condition and receives disease-specific education [1‐4].

Improved IBD knowledge has been associated with a number of benefits including enhanced coping [1], improved adherence to medications [5, 6] and disease outcomes [7, 8], and reduced health care costs [3, 7]. Increased knowledge levels have not been shown to enhance health-related quality of life in adults with IBD [3, 9, 10] and may lead to greater levels of anxiety, although the reason for this is unclear [11]. Patients with IBD have demonstrated a need for disease-related information, but this will vary between patients. For example, one study found that patients with CD have a higher need for information on medication, daily life, and pregnancy than patients with UC [12]. Identifying gaps in patients’ existing disease-related knowledge enables healthcare teams to provide tailored information, and validated questionnaires can be a useful tool to formally assess knowledge levels.

Currently, there are a number of IBD knowledge questionnaires available that are used among adults [13‐18], but notably all but one of these questionnaires (the Short Knowledge Questionnaire [15]) consists of at least 24 items. The length of a questionnaire is an important factor to consider when used in a time-pressed environment such as clinical practice. The IBD Knowledge Inventory Device (IBD-KID) is a valid and reliable assessment tool originally developed in 2013 to assess disease knowledge in children and adolescents with IBD and their parents [19, 20] and updated in 2019 following a response pattern analysis as IBD-KID2 with a reduced number of items (from 23 to 15) [21]. IBD-KID2 has demonstrated good validity, generalizability, and reliability when tested with children [22, 23] and good sensitivity to detect changes to IBD-related knowledge levels in parents of children with IBD following an education programme [24]. It has also been used to measure knowledge levels of siblings of children with IBD [23], as well as members of the general public [25]. Furthermore, readability of IBD-KID2 was found to be adequate for readers from an age of eight years [22], which is in line with recommended reading levels for public healthcare material [26]. Importantly, neither the wording of IBD-KID2 nor the content is specific to the paediatric IBD population. This fact paired with its favourable properties would make it the ideal tool for assessing disease-related knowledge in adult patients with IBD in a clinical and research setting. The aim of this study was to test the validity and reliability of the IBD-KID2 when used with adult patients with IBD. The generalizability of the IBD-KID2 between two New Zealand centres was also assessed, as well as associations between IBD knowledge and demographic and patient-specific variables.

This study aimed to establish whether the knowledge assessment tool IBD-KID2 was appropriate for use among adult patients with IBD. Concurrent validity was established using score comparisons with CCKNOW, and reliability and generalizability confirmed using test–retest completion, and between centre comparisons. Associations between IBD knowledge and demographic and patient-specific variables were explored, as well as participant’s views on the acceptability of IBD-KID2. This study successfully established that IBD-KID2 is a valid and acceptable tool for assessing IBD knowledge in adults with CD or UC.

Concurrent validity of IBD-KID2 was confirmed by demonstrating a strong correlation between the CCKNOW and IBD-KID2 percentage scores. Two previous studies used this method when validating their knowledge questionnaires against CCKNOW, finding similar significant levels of correlation as in this study [15, 30].

In terms of frequency of correct answers, all but one item was correctly answered by more than 50% of participants in this study, indicating good overall knowledge. The item that did not reach the 50% threshold was regarding whether IBD in remission can slow down a young person’s growth. A lack of clear knowledge about the potential impact of IBD on growth has been reported for adults with IBD in the past [13, 31]. Of interest is that while the frequency of correct answers for the growth question was also low for children with IBD (<50%) [22], parents of children with IBD demonstrated good levels of knowledge [24]. The highest scoring items in this study were related to colonoscopy, stress, surgery and stopping drugs. Similar results were found as part of a recent study using IBD-KID2 to measure IBD knowledge among the general public where the questions about colonoscopy, stress, and surgery were also high scoring items (>50%) and were assumed to be scored well due to being relatable to other health conditions [25].

Associations between demographic and patient-specific variables in this study showed that participants who identified themselves as female, had a diagnosis of CD (vs UC), and completed post-secondary education, scored higher on both the CCKNOW and IBD-KID2. The finding that female patients have better IBD knowledge has been demonstrated in a number of previous studies [11, 18, 32], as well as their greater desire [33] and need for information [12]. This gender difference may be explained by findings noted by Selinger et al. [11], who reported an association between female gender and higher levels of anxiety, as well as a positive relationship between IBD knowledge and anxiety. A number of studies have shown that patients with CD have a higher level of IBD-specific knowledge than patients with UC [14, 15, 34]. It has been suggested that this difference may be due to the fact that CD can follow a more severe disease course [19] and require more frequent treatment for disease complications, providing the opportunity for more frequent interaction with clinicians, which may facilitate knowledge acquisition [16]. It is well established that patients with IBD with a higher educational status also show higher disease-specific knowledge [14, 17, 18, 34], a finding further supported in this study. When interpreting this result, the role of health literacy should be considered, with the possibility of higher knowledge scores being due to a better understanding of medical terminology [24].

In this study, participants scored significantly higher on the CCKNOW if they were a member of a support group, a trend found in other studies using IBD-KID2. This difference may be due to membership facilitating access to IBD information and resources and more interactions with fellow patients [14, 18]. It has also been suggested that people who join a patient organisation may be more motivated to learn and get actively involved with disease management [14, 31]. Since patient organisation membership is a modifiable factor in increasing patients’ IBD knowledge, IBD healthcare teams should encourage patients to join a support group [17, 30].

Another important aspect of this study was related to the perceived acceptability and feasibility of IBD-KID2. Most participants preferred IBD-KID2 and found it easier to complete than the CCKNOW, however, approximately half of the participants considered the CCKNOW as most suitable for adults with IBD. This finding may be due to the CCKNOW being considered as more difficult [20, 35] and therefore, more appropriate for adults, as well as the fact that the CCKNOW includes items on pregnancy and male fertility. A number of participants noted that they would like to know the answers to the questions and that they knew less than they realised. The desire for more disease-related knowledge has been noted in the past [14, 32], as well as the realisation that knowledge was at a lower level than expected [18]. Interestingly, patients tend to overestimate their knowledge levels, with one study showing that participants’ ratings of their personal knowledge level decreased considerably from 46.4 to 22.3%, after completing a comprehensive IBD knowledge questionnaire [18].

In terms of additional items that should be included in IBD-KID2, the top four mentioned were items on nutrition, drugs, disease management and where to get help. Most of these topics have been highlighted in the past by patients with IBD as being very important to receive information about [33, 36]. One study showed that a significant proportion of patients receive little to no information on certain subjects including long-term prognosis, managing pain and other symptoms, and changes to diet [33]. This finding highlights the importance of providing additional information to patients regarding issues not covered by the questionnaire, if being used to establish gaps in patient’s knowledge. While the internet has gained momentum as a source for disease-related information, especially with younger patients (under the age of 50) and patients with a higher educational level [36], the doctor is still noted as the most important, frequent and preferred source of information [17, 33, 36, 37].

The main limitation of this study relates to the wider generalizability of IBD-KID2 outside New Zealand for the population of adults with IBD. While ethnicity data on participants were collected, few identified as any group except NZ European, which may have limited generalizability within this study, as well as to the broader population of adults with IBD in other countries. Wider generalizability of IBD-KID2 for use among children with IBD has previously been established [23], and while no additional issues relating to use for adults with IBD are anticipated, further work may address this limitation. The study had a limited sample size, but adds to the growing data being accumulated using IBD-KID2 and may therefore be used for future comparisons among the population of adults, adolescents, and children with IBD. The questionnaires were self-administered and completed by participants without the presence of a researcher, which may have resulted in higher knowledge level scores due to participants looking up relevant information when completing the questionnaire. However, maximum scores on IBD-KID2 were achieved by few participants, and none for CCKNOW, so this appears unlikely. Furthermore, this study did not collect data on variables including family history of IBD, surgical history, medical treatments and IBD hospitalisation history, which have shown an association with IBD knowledge levels in the past [15, 17, 18, 34, 37].

In summary, IBD-KID2 may now be considered for use in clinical or research settings to evaluate IBD knowledge levels of adult patients with IBD as it has been established as a valid and reliable tool for this purpose. It may be used to determine gaps in understanding, which in turn may be used to drive clinical interventions or provide targeted teaching. In terms of future research, using IBD-KID2 to assess knowledge levels of adults with IBD can further explore the role this plays in relation to self-management abilities and patient well-being. It may also be used as a tool to evaluate programs developed to enhance these components.