JMIR Publications

ABSTRACT

Background:

Cancer and its treatment are a major cause of morbidity and health care costs worldwide. While systemic therapies are highly effective, they are associated with toxicities that can be life-threatening and disabling if not managed effectively. Digital technologies hold promise for enabling patient self-management of treatment-related toxicities, but few programs have been developed using a co-design approach to ensure relevance and uptake.

Objective:

We undertook a user-centred co-design process in partnership with patients and other knowledge end-users to develop and iteratively test an evidence-based and theoretically informed web-based cancer self-management education program prototype (I-Can Manage).

Methods:

We developed the I-Can Manage web-based prototype based on human-centered and co-design methodologies. The content, features, and functions were informed by an initial qualitative inquiry discovery phase with patients diagnosed with lung, colorectal, and breast cancer followed by a persona and journey mapping workshop to further define content and desired features, and formalized usability (UI/UX) testing in a human factors digital We developed the I-Can Manage web-based prototype based on human-centered and co-design methodologies. The content, features, and functions were informed by an initial qualitative inquiry discovery phase with patients diagnosed with lung, colorectal, and breast cancer followed by a persona and journey mapping workshop to further define content and desired features, and formalized usability (UI/UX) testing in a human factors digital design lab. Five phases of co-design were followed to develop the components and features/functions of the web-based program. Patient partners and knowledge end-users were engaged in the co-design of the program to ensure relevance of components, features and functionalities, and to promote its uptake. design lab. Five phases of co-design were followed to develop the components and features/functions of the web-based program. Patient partners and knowledge end-users were engaged in the co-design of the program to ensure relevance of components, features and functionalities, and to promote its uptake.

Results:

In the qualitative discovery phase, participants described the “hard work” of managing cancer and their desire for an online program as a “a reliable source of trustworthy information” that would “normalize” their experience; and enable them to manage treatment side-effects and emotional consequences. In response to these issues, the theoretical underpinnings of social cognitive theory, self-efficacy, and self-management skills informed the components and features of I-Can Manage as an interactive online program. The program integrates information and evidence-based strategies for self-management of treatment toxicities and health-promoting behaviors in six e-learning modules (lay term-chapters), starting with an orientation to self-management and the central role of patients in managing cancer and treatment effects. Behavioral exercises, patient written and video stories, downloadable learning resources, and online completion of brief SMART (specific, measurable, achievable, relevant, time bound) goals and action plans were integrated across chapters to promote implementation of strategies specific to managing treatment effects and health behaviours to promote health recovery. Online functionalities were refined (e.g., number of clicks to access information) based on user experience testing (n=5) and scores on the Post-Study System Usability Questionnaire (PSSUQ) in a diverse cancer patient population. PSSUQ (mean total score: 3.75) suggests patient satisfaction with the usability of I-Can Manage program.

Conclusions:

The I-Can Manage program, developed through co-design with patients, targets activation of patients in the use of core self-management skills, problem-specific self-management strategies, and health behaviours to manage cancer symptoms, treatment toxicities, emotional distress, and quality of life.