Mapping the Health Information Seeking Journey of Patients with Polyendocrine Metabolic Ovarian Syndrome: A Qualitative Study

Abstract

Background: Polyendocrine Metabolic Ovarian Syndrome (PMOS), is a complex and heterogeneous condition with reproductive, metabolic, dermatological, and psychological implications. Existing literature shows that people living with PMOS frequently report unmet information needs, including limited guidance at diagnosis and around treatment and long-term management. As a result, many seek information beyond healthcare encounters through online resources, books, social media, peer networks, and health and wellness professionals. However, less is known about how health information-seeking behaviour (HISB) evolves across symptom onset and recognition, diagnosis, and treatment/management. There is also limited understanding of how individuals navigate and reconcile information from multiple sources, and how personal and contextual factors shape these experiences over time.

Research Questions: How do people with PMOS engage in HISB across key stages of the care pathway (symptom onset and recognition, diagnosis, and treatment/management), and how does it evolve over time? In what ways do personal antecedents (e.g., demographics, identity, psychological factors) and contextual antecedents (e.g., culture, language, social support, technological access) shape the nature and quality of HISB among people with PMOS? How does HISB shape understanding, decision-making, and coping at each stage? What are the perceived outcomes of HISB among people with PMOS at each stage of the care pathway? How do people with PMOS navigate and reconcile conflicting information from healthcare providers, online sources, and peer networks?

Methods: This study used a qualitative research design guided by interpretivist and critical theory paradigms. Twelve participants with PMOS living in Ontario were purposively recruited between January and May 2026. Participants were eligible if they were pre-menopausal, between 18 and 45 years of age, resided in Ontario, and had received a formal PMOS diagnosis from a healthcare professional at least six months prior to participation. Twelve semi-structured narrative interviews were conducted virtually through Zoom between March and May 2026 and typically lasted between 50 minutes and 1 hour and 20 minutes. Participant-informed journey mapping, guided by the Journey Mapping in Applied Public Health and Social Sciences (J-MAPHS) framework, was used to visually represent participants’ PMOS and information-seeking experiences over time. Interview and journey-mapping data were analyzed concurrently using inductive thematic analysis following Braun and Clarke’s six-phase framework.

Findings: HISB was dynamic and evolving, with participants’ information needs and behaviours changing across their PMOS journeys. During symptom onset and recognition, participants often lacked the knowledge to connect bodily changes to PMOS, while social and cultural factors shaped whether symptoms were recognized as requiring further information. Receiving a diagnosis helped explain some previous experiences and symptoms but did not necessarily resolve information needs, with differences in the amount, framing, and relevance of information provided. During treatment/management, information seeking became increasingly self-directed and individualized as participants navigated multiple sources, evaluated credibility and personal relevance, and used their own experiences to guide management, contributing to both empowerment and the burden of remaining informed

Conclusions: This study demonstrates that HISB is an evolving and interconnected process shaped by changing information needs, experiences, and circumstances across the PMOS journey. Findings highlight the need for accessible, individualized, and ongoing informational support that helps people with PMOS understand their condition, navigate conflicting information, and make informed decisions throughout their care.