Health literacy in gastrointestinal diseases: a comparative analysis between patients with liver cirrhosis, inflammatory bowel disease and gastrointestinal cancer

In total, 379 patients with either gastrointestinal cancer (just called “cancer” during the following manuscript) (n = 102), IBD (n = 86) or liver cirrhosis (n = 191) were recruited between January 2019 and April 2022 for this prospective, exploratory study at the Department of Internal Medicine I of the University Medical Center of the Johannes Gutenberg- University in Mainz, Germany. Detailed medical history was taken for each patient including social anamnesis and disease history.

All patients with cancer were consecutively recruited at the outpatient comprehensive cancer center that takes part of the Department of Internal Medicine I and were under treatment with systemic therapy. The underlying type of cancer was determined by biopsy and subsequent histology in all patients.

Patients with IBD were consecutively recruited at the outpatient department focused on patients with IBD that takes part of the Department of Internal Medicine I. All included patients suffered either from Crohn’s disease, ulcerative colitis or indeterminate colitis.

Patients with liver cirrhosis were consecutively recruited from the outpatient department of the Cirrhosis Centre Mainz (CCM) or from the regular wards of the Department of Internal Medicine I²³. Patients with anamnestic active alcohol consumption were not approached. A subset of this cohort (n = 89) has been previously analyzed to identify predictors for poorer health literacy in patients with liver cirrhosis²³. The leading etiology of underlying liver disease was determined according to clinical, serological and histological findings. Diagnosis of liver cirrhosis was made by histology, typical appearance in ultrasound or radiological imaging, endoscopic features of portal hypertension, and medical history. Model of end-stage liver disease (MELD) and Child–Pugh (CP) score were calculated to determine the severity of liver disease²³. Inpatients were recruited at the end of their hospital stay after recompensation to avoid confounding effects of active infection or hepatic encephalopathy.

Assessment of health literacy

As also previously described²³, Health literacy was assessed using the Health Literacy Questionnaire (HLQ), which was validated for the German population in 2017^19,24. The HLQ contains 44 items, which are divided into nine areas of health literacy¹⁹. The first five scales are scored on a 4-point Likert scale (ranging from strongly disagree to disagree, agree, and strongly agree), building part I. The other four scales, representing part II, are scored on a 5-point Likert scale where respondents are asked to rate the level of difficulty in undertaking a task (ranging from cannot do/ always difficult, usually difficult, sometime difficult, usually easy, and always easy). Higher scores indicate better health literacy.

The scales are subdivided into the following categories:

1. 1.

   Feeling understood and supported by healthcare providers (HPS) (4 items),

2. 2.

   Having sufficient information to manage my health (HSI) (4 items),

3. 3.

   Actively managing my health (AMH) (5 items),

4. 4.

   Social support for health (SS) (5 items),

5. 5.

   Appraisal of health information (CA) (5 items),

6. 6.

   Ability to actively engage with healthcare providers (AE) (5 items),

7. 7.

   Navigating the healthcare system (NHS) (6 items),

8. 8.

   Ability to find good health information (FHI) (5 items),

9. 9.

   Understanding health information well enough to know what to do (UHI) (5 items).

It is important to note that every scale that purports to measure health literacy is its own scale and because scales have different items with different tasks/challenges, they can be easier or harder to answer (between scales). Consequently, one scale cannot be directly compared with another. Additionally, there are currently no evidence-based cut-off values available to dichotomize results.

Licence of the questionnaire was granted by the Swinburne University, Hawthorn, Australia. A trained healthcare professional assisted the patients to complete a paper version of the questionnaire.

Ethics

The study was conducted in accordance with the ethical guidelines of the 1975 Declaration of Helsinki (6th revision, 2008). The study was approved by the ethics committee of the Landesärztekammer Rheinland-Pfalz (2019-14483). Written informed consent was obtained from all participants.

Statistical analysis

Quantitative data are expressed as medians with interquartile ranges (IQR). Pairwise comparisons for quantitative variables were performed with the Mann–Whitney U Test. Comparison of three quantitative variables was performed using an ANOVA followed by Tukey’s multiple comparison test. Categorical variables are expressed as frequencies and percentages. For comparison of two or more patient groups, a chi-squared test was applied.

To exclude the potential bias in univariable analyses on health literacy caused by differences in age, gender distribution or education (university degree), we conducted various multivariable linear regression analysis including the respective gastrointestinal disease, age, gender and education (university degree).

Our complete data analysis is exploratory. Hence, no adjustments for multiple testing were performed. For all tests, we used a 0.05 level to define statistically significant deviations from the respective null hypothesis. However, due to the large number of tests, p-values should be interpreted with caution. Data were analysed using IBM SPSS Statistic Version 27.0 (Armonk, NY: IBM Corp.). Figures were drawn with GraphPad Prism Version 8.0.2 (GraphPad Software, California, US)²³.