Defining the informational needs of patients with Sjogren’s Syndrome and development of a Sjogren’s Syndrome-specific Informational Needs Questionnaire (SS-INQ)

Abstract

Patient education through provider-patient information exchange is central in the clinical care of individuals living with a chronic, non-curable disorder, such as, perhaps, Sjogren’s syndrome (SS). The literature review found a knowledge gap on what information a patient with SS might want or perceive important and a lack of a specific instrument that could be used to assess the individual’s information needs (IN). Hence, the thesis aimed to (1) assess what information patients would likely find upon searching the Internet, (2) qualitatively explore patients' perspectives and preferences regarding what information related to SS they wish to receive or consider important, using focus groups (Phase-1), (3) develop and determine the psychometric properties of the novice IN instrument for SS (SS-INQ) (Phases-2A and B). The analysis of the web revealed the low quality, poor understandability and actionability and high readability level of the content available. The focus group study (Phase-1) showed that patients are underinformed and want to receive diseaserelated information tailored to their needs and preferences. Emergent themes were used in devising items of the newly developed IN instrument (SS-INQ). The SS-INQ was piloted to a panel of experts and target population who confirmed its face and content validity (Phase-2A). Field test results indicated that the instrument has adequate psychometric properties (Phase-2B).