Measuring attributes of health literate health care organizations from the patients' perspective: Development and validation of a questionnaire to assess health literacy-sensitive communication (HL-COM)

Background: Studies addressing the organizational contexts of care that may help increase the patients' ability to cope with a disease and to navigate through the health care system are still rare. Especially instruments allowing the assessment of such organizational efforts from the patients' perspective are missing. The aim of our study was to develop a survey instrument assessing organizational health literacy (HL) from the patients' perspective, i. e., health care organizations' responsiveness to patients' individual needs.

Methods: A pool of 30 items was developed by a group of experts based on a literature review. The items were developed, tested and prioritized according to their importance in 11 semi-structured interviews and cognitive think-aloud interviews with cancer patients. The resulting 16 items were rated in a standardized postal survey involving a total of N=453 colon and breast cancer patients treated in cancer centers in Germany. An exploratory factor analysis, a confirmatory factor analysis and structural equation modelling were conducted. Item properties were analyzed.

Results: 83.2 % of the patients were diagnosed with breast cancer, 16.8 % had a diagnosis of colon cancer. The patients' mean age was 61 (26-88), 89.4 % were female. The most common comorbidities were hypertension (34.0 %) and cardiovascular disease (11.0 %). The final prediction model included nine items measuring the degree of health literacy-sensitivity of communication. The model showed an acceptable model fit. The nine items showed corrected item-total correlations between .622 and .762 and item difficulties between 0.77 and 0.87. Cronbach's α was .912.

Discussion: In a comprehensive development process, the original item pool comprising several aspects of organizational HL was reduced to a one-dimensional scale. The instrument measures an important aspect of organizational HL; i.e., the degree of health literacy-sensitivity of communication (HL-COM). HL-COM was found to impact patient enablement, mediated through the support by physicians. Future research will have to test these associations in the context of other diseases or institutions.