UCL Discovery
UCL home » Library Services » Electronic resources » UCL Discovery

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

Albassam, Sara; (2022) Defining the informational needs of patients with Sjogren’s Syndrome and Development of a Sjogren’s Syndrome-specific Informational Needs Questionnaire (SS-INQ). Doctoral thesis (Ph.D), UCL (University College London). Green open access

[thumbnail of Phd thesis (Sara Al Bassam)Defining the informational needs of patients with Sjogren.pdf]
Preview
Text
Phd thesis (Sara Al Bassam)Defining the informational needs of patients with Sjogren.pdf - Submitted Version

Download (14MB) | Preview

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 disease-related 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).

Type: Thesis (Doctoral)
Qualification: Ph.D
Title: Defining the informational needs of patients with Sjogren’s Syndrome and Development of a Sjogren’s Syndrome-specific Informational Needs Questionnaire (SS-INQ)
Open access status: An open access version is available from UCL Discovery
Language: English
Additional information: Copyright © The Author 2022. Original content in this thesis is licensed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) Licence (https://creativecommons.org/licenses/by-nc/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request.
UCL classification: UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Eastman Dental Institute
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL
URI: https://discovery.ucl.ac.uk/id/eprint/10143730
Downloads since deposit
107Downloads
Download activity - last month
Download activity - last 12 months
Downloads by country - last 12 months

Archive Staff Only

View Item View Item