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Project

Developing and testing the user experience of an interactive health technology-based adherence intervention in solid organ transplantation: know your end-users

Many adult transplant (Tx) patients struggle to adhere to their complex medication regimen and lead a healthy lifestyle, necessitating supportive interventions in order to prevent post-Tx co-morbidities and premature mortality. Based on our systematic review (chapter 2), however, we learned that only 14 experimental or quasi-experimental interventions were published (seven focusing on physical activity, three on diet, two on sun protection, and two on a combination of behaviours). Most of these studies used small sample sizes and contained only brief descriptions of the actual intervention components under scrutiny, highlighting the need for well-designed behavioural interventions.

The use of information and communication technology, such as computers or smartphones for health, or eHealth, is increasingly put forward as a novel way to deliver such supportive interventions. Yet, the concept of eHealth is an umbrella term, surrounded by many ambiguities and misconceptions. In Chapter 3, we therefore propose a framework on eHealth, helping readers to see the forest for the trees, consisting of eHealth types (i.e. interactive health technology (IHT), telehealth, and its two subtypes telemedicine and telecare), eHealth platforms and interfaces, and big data. Additionally, we provided an overview of how eHealth can contribute to a better quality of care, and how to implement it successfully.

As part of behavioural support, IHT seems to be a particularly suitable and innovative eHealth type, allowing patients to access or transmit health information via information and communication technology, and receive tailored guidance or support. The evidence base in transplantation, however, is weak, and existing work outside the field of transplantation shows that the success of IHT largely depends on whether end-users are willing to use the technology. Judged on patient dropout rates exceeding 80% in technology intervention studies, a smooth eHealth acceptance should not be taken for granted. eHealth tool developers are therefore urged to apply a ‘human-centred design process’, in which the intended end-users of the technology and other stakeholders are involved early, actively and iteratively in the technology design, development and testing. Chapters 4 to 6 describe how we developed and tested the user experience of an IHT to support adult heart, lung, liver and kidney Tx patients in their immunosuppressive medication adherence, physical activity and weight control, following a state-of-the-art human centred design process.

First, we interviewed 122 Tx patients on their current information and communication technology use to select a suitable IHT platform, and explored which factors could affect their acceptance and use of IHT for adherence support (Chapter 4). Since only 27.9% of our Tx patients possessed a smartphone, but 89.3% owned a computer with internet access at home, developing a computer-based website was considered the best choice of platform to offer our intervention. We also learned that while Tx patients generally were open towards IHT, patients who were divorced or widowed, had attained higher education and patients without prior technology use seemed more reluctant. Furthermore, patients preferred visual aids (e.g. graphs) over text messages, automatic data transfer as much as possible, and wanted to personally decide when to access the intervention.

Second, we visited 19 Tx patients twice at home as part of an innovative contextual inquiry research design, asking patients to demonstrate how they implement the aforementioned health behaviours in their daily lives (Chapter 5). More specifically, we learned that few patients understood what ‘sufficiently active’ means. Physical discomforts and poor motivation created variation across activity levels observed. Health benefits of dietary guidelines were insufficiently understood, and their implementation into everyday life considered difficult. Many underestimated the strictness of immunosuppressive medication intake, and instructions on handling late doses were unclear. Interruptions in routine and busyness further contributed to non-adherence. We also learned that professionals often recommend supportive strategies, which patients not always like or need. This study gave us a more complete understanding of the problems patients encounter while trying to implement the therapeutic regimen into their daily lives, for which supportive interventions are not yet in place, and for which IHT might be helpful.

Third, during a half day brainstorm session with the project’s consortium, we selected the devices to monitor the health behaviours under investigation, determined the intervention components, selected the behavioural changes techniques to address patients’ needs, and drafted the IHT features, building upon the results collected in step 1 and 2. Next, 12 purposively selected Tx patients participated in a prospective study, consisting of iterative rounds of testing the usability (i.e. ease of use) of several prototypes in a controlled laboratory setting (Chapter 6). A prototype shifted from ‘low-fidelity’ (e.g. paper sketches) to ‘medium-fidelity’ (e.g. clickable ‘wireframe’ prototype, without details). No further adaptations were needed after three rounds, after which a high-fidelity prototype was fully programmed into the website (http://picassotx.be/).

Finally, we conducted a field study to test which problems or technicalities might occur when installing the IHT-website and the selected monitoring devices in Tx patients’ homes (chapter 6). We also tested the user-experience of the IHT, including the usability and usefulness, when used in daily life. Technical problems were encountered that needed to be solved by the researchers (such as e.g. patients using a very old browser). Perceived usefulness and ease of use at visit 1 was high. Moreover, the overall attractiveness of the website, as well as satisfaction with system usability was very high.

In conclusion, the following key messages can be distilled from this PhD project:

- The current evidence-base on interventions to support adult solid organ Tx patients’ healthy lifestyle behaviours is poor

- Our newly developed conceptual framework provides the much needed clarity and guidance on eHealth and its many related concepts, and our overview of the many ways to which eHealth can contribute to a better quality of care, and how to successfully implement it, can guide other researchers

- We recommend to always check end-users’ information and communication technology experience when selecting an eHealth platform and interface, as not everyone owns a smartphone or has access to internet

- Tx patients generally are open towards IHT-delivered support, yet, specific subgroups seem more reluctant and patients have very clear preferences on its features

- The use of a contextual inquiry design is a novel methodology to obtain a real life insight in factors hindering Tx patients in following the therapeutic regimen, which otherwise would have remained uncovered

- Developing a new eHealth prototype without end-user feedback is doomed to fail

- Testing the prototype in its intended context before rolling-out the technology in large-scale intervention studies or clinical practice is needed to prevent technical challenges and solve remaining user experience issues

Date:1 Sep 2013 →  13 Jul 2018
Keywords:eHealth, Nursing, Transplantation, Adherence
Disciplines:Public health care
Project type:PhD project