Exploring User Visions for Modeling mHealth Apps Toward Supporting Patient-Parent-Clinician Collaboration and Shared Decision-making When Treating Adolescent Knee Pain in General Practice: Workshop Study

Abstract

Background Long-standing knee pain is one of the most common reasons for adolescents (aged 10-19 years) to consult general practice. Generally, 1 in 2 adolescents will continue to experience pain after 2 years, but exercises and self-management education can improve the prognosis. However, adherence to exercises and self-management education interventions remains poor. Mobile health (mHealth) apps have the potential for supporting adolescents’ self-management, enhancing treatment adherence, and fostering patient-centered approaches. However, it remains unclear how mHealth apps should be designed to act as tools for supporting individual and collaborative management of adolescents’ knee pain in a general practice setting. Objective The aim of the study was to extract design principles for designing mHealth core features, which were both sufficiently robust to support adolescents’ everyday management of their knee pain and sufficiently flexible to act as enablers for enhancing patient-parent collaboration and shared decision-making. Methods Overall, 3 future workshops were conducted with young adults with chronic knee pain since adolescence, parents, and general practitioners (GPs). Each workshop followed similar procedures, using case vignettes and design cards to stimulate discussions, shared construction of knowledge and elicit visions for mHealth designs. Young adults and parents were recruited via social media posts targeting individuals in Northern Jutland. GPs were recruited via email and cold calling. Data were transcribed and analyzed thematically using NVivo (QSR International) coding software. Extracted themes were synthesized in a matrix to map tensions in the collaborative space and inform a conceptual model for designing mHealth core-features to support individual and collaborative management of knee pain. Results Overall, 38% (9/24) young adults with chronic knee pain since adolescence, 25% (6/24) parents, and 38% (9/24) GPs participated in the workshops. Data analysis revealed how adolescents, parents, and clinicians took on different roles within the collaborative space, with different tasks, challenges, and information needs. In total, 5 themes were identified: adolescents as explorers of pain and social rules; parents as supporters, advocates and enforcers of boundaries; and GPs as guides, gatekeepers, and navigators or systemic constraints described participants’ roles; collaborative barriers and tensions referred to the contextual elements; and visions for an mHealth app identified beneficial core features. The synthesis informed a conceptual model, outlining 3 principles for consolidating mHealth core features as enablers for supporting role negotiation, limiting collaborative tensions, and facilitating shared decision-making. Conclusions An mHealth app for treating adolescents with knee pain should be designed to accommodate multiple users, enable them to shift between individual management decision-making, take charge, and engage in role negotiation to inform shared decision-making. We identified 3 silver-bullet principles for consolidating mHealth core features as enablers for negotiation by supporting patient-GP collaboration, supporting transitions, and cultivating the parent-GP alliance.

The Effectiveness of Using a Clinical Support Tool in Managing Adolescents with Non-Traumatic Knee Pain (MAP-Knee): protocol for a cluster-randomised superiority trial with delayed intervention and embedded realist evaluation

“…This trial focuses on how the initial clinical encounter and clinicians' decision-making can be improved to meet the support and management needs of adolescents with chronic knee pain seeking treatment for knee pain in secondary care. Previous studies have highlighted how adolescents' formation of self-management strategies does not occur within a vacuum (48) and how the lack of validation from HCPs, peers and parents, uncertainty about the severity of the condition, excessive use of diagnostic imaging and 'watchful waiting' without explanations may negatively influence adolescents' formation of strategies for mastering their knee pain (49)(50)(51)(52). Contrarily, patients highlight how validation from clinicians, a name, and an explanation for why their knee pain emerged enabled adolescents to adjust their pain beliefs and commence the work related to accepting and exploring how to self-manage their knee pain in everyday situations (52).…”

“…Studies from other domains have described how informed parents can help facilitate adolescents' transition into self-management by providing comfort, management instructions, problem-solving assistance and engaging with external actors (teachers, trainers, etc.) (53,54), adolescents with knee pain and parents described how they needed different types of information from HCPs to undertake this task (51). Whereas shared decision-making has been highlighted as a viable method for merging evidence-based treatments and patients' desired outcomes when prescribing treatments in clinical settings (55), the question of how patient education is delivered to enable adolescents and parents to engage in an informed negotiation of roles and management tasks is unexplored (56).…”

Supporting Self-management Through eHealth - Exploring the Needs, Challenges and Solutions in General Practice: A Qualitative and Participatory Design Study

“…Both patients and GPs noted the laborious and ongoing nature of pain management, aligning with findings by Corbin and Strauss, emphasizing the sustained effort required to address chronic pain's multifaceted and temporal challenges 12 . While literature highlights digital technologies' potential to support collaboration in primary care 1,53,65 , questions remain about how technology can facilitate shared vocabulary and negotiation between patients and GPs 28 . This underscores the fragile foundation of eHealth, emphasizing the need for a continued engagement of stakeholders and involving them in decision-making to capture unique experiences, identities, and distinct needs 58,67 .…”

“…Each of the workshops was initiated by a short 15-minute presentation describing ‘Pain Guide eLearning platform’ and the aim of the project. This was followed by three phases of 45-minute sessions inspired by the three phases of the future workshop (critique, fantasy, and implementation) 28,31 . The participants were asked to use the inspiration cards and case vignette to discuss and share their perspectives and experiences on living with chronic pain during the phases (appendix 3) 28,31 .…”

“…The digital health literature emphasizes that designing eHealth solutions for supported self-management of chronic conditions is complex, requiring insights into patients’ symptoms, perceived challenges, needs, stakeholders, care processes, and behaviours facilitating recovery 22,28,40,41,51 . Stakeholder and user-participatory co-design is considered crucial for designing eHealth solutions 75 ; these methods are described as the gold standard for ensuring that eHealth solutions accommodate the domains of importance to all involved stakeholders 3,35,77 .…”