A User-Centered Approach to an Evidence-Based Electronic Health Pain Management Intervention for People With Chronic Pain: Design and Development of EPIO

Abstract

Background Chronic pain conditions are complicated and challenging to live with. Electronic health (eHealth) interventions show promise in helping people cope with chronic illness, including pain. The success of these interventions depends not only on the technology and intervention content but also on the users’ acceptance and adherence. Involving all stakeholders (eg, patients, spouses, health care providers, designers, software developers, and researchers) and exploring their input and preferences in the design and development process is an important step toward developing meaningful interventions and possibly strengthening treatment outcomes. Objective The aim of this study was to design and develop a user-centered, evidence-based eHealth self-management intervention for people with chronic pain. Methods The study employed a multidisciplinary and user-centered design approach. Overall, 20 stakeholders from the project team (ie, 7 researchers, 5 editors, 7 software developers, and 1 user representative), together with 33 external stakeholders (ie, 12 health care providers, 1 health care manger, 1 eHealth research psychologist, and 17 patients with chronic pain and 2 of their spouses) participated in a user-centered development process that included workshops, intervention content development, and usability testing. Intervention content was developed and finalized based on existing evidence, stakeholder input, and user testing. Stakeholder input was examined through qualitative analyses with rapid and in-depth analysis approaches. Results Analyses from stakeholder input identified themes including a need for reliable, trustworthy, and evidence-based content, personalization, options for feedback, behavioral tracking, and self-assessment/registration as factors to include in the intervention. Evidence-based intervention content development resulted in one face-to-face introduction session and 9 app-based educational and exercise-based modules. Usability testing provided further insight into how to optimize the design of the intervention to the user group, identifying accessibility and a simple design to be essential. Conclusions The design and development process of eHealth interventions should strive to combine well-known evidence-based concepts with stakeholder input. This study, designing and developing the pain management intervention EPIO, illustrates how a stakeholder-centered design approach can provide essential input in the development of an eHealth self-management intervention for people with chronic pain. Trial Registration ClinicalTrials.gov NCT03705104; https://clinicaltrials.gov/ct2/show/NCT03705104

Digital Self-Management in Support of Patients Living With Chronic Pain: Feasibility Pilot Study

“…Most patient-oriented apps for people living with chronic pain only provide information about pain or about the illness, including ways to check symptoms and track medication use [ 23 ]. Few eHealth pain-related apps provide information about coping and self-management strategies [ 24 , 25 ], and even though some web-based CBT or ACT-based interventions have been tested in support of people living with chronic pain, findings are still inconclusive and interventions need further testing, also in app format [ 13 , 22 , 26 - 28 ]. Systematic reviews have concluded that eHealth interventions are more likely to be successful if developed with a user-centered focus, increasing the likelihood of matching the user’s needs and requirements [ 29 , 30 ].…”

“…In response to existing research and recommendations, the current research team has examined users’ (ie, patients living with chronic pain) [ 21 ] and health care providers’ [ 35 ] inputs related to needs and requirements for a potential eHealth pain self-management intervention [ 21 , 35 ]. Incorporating findings [ 21 , 35 ] and combining these with existing clinical and research evidence for the effectiveness of CBT/ACT-type interventions [ 36 - 39 ], the team subsequently designed and developed a cognitive-behavioral pain self-management eHealth intervention called EPIO (inspired by the Greek goddess for the soothing of pain, Epione), aiming to support patients living with chronic pain (ie, chronic pain in general, not pain/pain condition specific) [ 21 , 26 , 35 ]. This study builds on this research line.…”

A Digital Innovation for the Personalized Management of Adherence: Analysis of Strengths, Weaknesses, Opportunities, and Threats

“…The PubMed search led to 35 results, of which 16 articles were included for analysis after the title and abstract assessment (Supplementary Material A). Nine of the identified studies focused on self-management support (40)(41)(42)(43)(44)(45)(46)(47)(48), two were related to health education and information (49,50), and five studies investigated digital health services (51,52) or health promotion and disease prevention interventions (53-55).…”

“…The general health status emerged as an essential determinant in the layer of "individual lifestyle factors." Results suggest that patients and health professionals should be enabled to tailor the interventions around individual health needs and preferences, which requires a profound understanding of the needs and routines of the target population and room for personalizing the interventions itself, as well as features such as reminders or motivators (40)(41)(42)(43)(44)(45)(46)(47)55). In some health conditions, empowering, and monitoring features may lead to increased disease distress or be perceived as a control measure.…”

“…Besides age, other individual characteristics are important for a good user-experience and user-friendly design. A simple and intuitive interface and personalized feedback, reminders, and trackers were mentioned besides the demand for customization options of the font size and colors as well as the option for a more gamified design including avatars and reward systems (41,43,(45)(46)(47)49).…”