Improving self-management with eHealth in cirrhosis using a patient-centered approach

• Author / Creator

  Ismond, Kathleen P

• Rapid adoption of internet-connected technology (ICT) by society has supported an unprecedented rate of change in hardware, software, and connectivity making the technology more accessible and user friendly. In turn, the application of this technology has reshaped how people communicate, acquire information, and integrate it into their daily lives. The ubiquitous nature of ICT has also impacted healthcare and self-care in a range of ways, from the presence of patient portals and access to healthcare professionals, to applications (“apps”) and wearable devices that support healthy lifestyles. For those who are ill or have chronic diseases, ICT can provide disease-related information, medications, and apps to support self-management.
  My dissertation explores the interface of ICT and individuals living with a chronic disease, cirrhosis and asks a series of contingent questions answered by four studies: (1) Are patients proficient with either computer and smart devices and, if so, why are they using it? A survey-based study (n=117) using validated tools (Computer and Mobile Device Proficiency Questionnaires) was conducted in cirrhosis. Patients were moderately proficient and high rates or internet usage and device ownership. (2) Next, I asked: is online cirrhosis information targeted to patients and care partners and, if so, how is it presented? A critical review of cirrhosis-specific webpages evaluated information accessibility, reliability, and transparency using validated tools (Web Resource Rating Tool and Quality Evaluation Scoring Tool). Low levels for these measures were found for all webpages and much could be done to improve online resources specifically targeted to patients and care partners. An in-depth look at hepatic encephalopathy webpages revealed complex medicalese language, inaccuracies, or negligible mention of non-pharmaceutical therapies. (3) For those living with cirrhosis, I asked what gaps, if any, were there about the self-management of hepatic encephalopathy? Following a systematic search and retrieval of the literature, the EPPI-Centre’s mixed methods synthesis approach to analyse quantitative (n=16) and qualitative (n=7) articles from published research. Findings highlighted the need for repeated practitioner-initiated dialogue with consistent messaging about this common complication to prepare, learn, and share information and skills to improve health outcomes and quality of life. Online resources and tools could be valuable for non-pharmaceutical and pharmaceutical self-management. (4) What did individuals living with cirrhosis think of a web-based application for improving nutrition and exercise behaviours? The three domains of the capability, opportunities, motivation – behaviour change model (COM-B) were used to investigate the application. After interviewing 20 persons and exploratory descriptive analysis of the data, several opportunities were identified to improve the application in consideration of COM-B. An unexpected finding was the preference for more online classes and the universal curiosity to learn more about other patients and have online interactions. These two elements were helpful to retain users and support adherence in the first 4-6 weeks of app use; this correlates with the opportunity-social subdomain of the model. Inclusion of gamification elements, streamlining data entry and progress reporting, and more online classes were suggested by the users as other mechanisms to increase enjoyment, retention, and adherence.
  While ICT has changed greatly in a short period of time, how we use it to support health needs is still evolving. App development and online content is driven by for-profit industries which are slowly evolving to meet user needs and user abilities. Research, like the series of findings presented here, is needed to describe the current landscape, gaps, and opportunities so that research can inform and benefit from advances in ICT.
  Findings presented in this dissertation highlight the acceptability and potential utility of ICT to support self-management, which is greatly needed in complex, chronic diseases, such as cirrhosis. However, effective initiatives should be user-centered if they are to improve health outcomes and quality of life of patients and care partners. There is much opportunity for follow-on studies to continue the work presented here to advance the scope and accessibility of greatly needed eHealth self-management tools.

• Subjects / Keywords

  • liver disease
  • eHealth
  • hepatic encephalopathy

• Graduation date

  Spring 2023

• Type of Item

  Thesis

• Degree

  Doctor of Philosophy

• DOI

  https://doi.org/10.7939/r3-baad-fe40

• License

  This thesis is made available by the University of Alberta Libraries with permission of the copyright owner solely for non-commercial purposes. This thesis, or any portion thereof, may not otherwise be copied or reproduced without the written consent of the copyright owner, except to the extent permitted by Canadian copyright law.