Background/Purpose:

Patients’ Internet use for health purposes is regarded as potentially transformational. Using on-line resources is associated with the emergence of the e-patient; broadly defined as someone who is an involved and empowered partner in care and is engaged in informed decision-making. We know little however, about how Internet use influences help seeking, the patient-clinician consultation and informed decision-making in early rheumatoid arthritis (RA). This qualitative study examines patient accounts of their Internet use during the 12 months following their diagnosis of RA, how it impacted patient help seeking and how Internet use evolved over time. 

Methods:

Twenty-two participants (17 women, 5 men), age range 30s-70s were recruited, within 12 months of an RA diagnosis, from rheumatologist and family physician offices and online patient advocacy groups. A series of 3-4 in-depth interviews were conducted over twelve months to track illness experiences and behaviors over time. The interview guide is based on 3 areas: 1) Pre-diagnosis symptoms, impact and management; 2) Experiences with health professionals leading to the diagnosis; 3) Post-diagnosis experience of symptoms, management and the health care system. Analysis is informed by grounded theory. Early analysis was concurrent with data collection enabling new and salient questions to be introduced to the interview schedule. Internet use as impacting illness behaviors emerged as an early theme and was subsequently included as a topic for inquiry in all interviews.

Results:

Preliminary analysis identified that online patients’ experiences affected help seeking in a range of ways. Three early themes emerged: 1) Assessing trustworthiness: participants compared different sites to validate information and favored institutional sites offering factual information over personal blogs, which could heighten their anxieties; 2) Help-seeking support: the Internet provided participants with information which some discussed with their family doctor e.g. to gain a specialist referral, while others used it to gain a ‘second opinion’ to compare with their doctor’s advice; 3) Evolving strategies: Over time participants changed the way they used the Internet; e.g. some used it less as they secured knowledge and support from their doctors, and others used it in a more targeted or selective way. 

Conclusion:

Our findings show how our participants used the Internet in a range of ways, which impacted their help seeking, and had the potential for both positive and negative impacts. As Internet use becomes a key feature of help seeking, it influences patients’ experiences. This has implications for both the patient’s and clinician’s role in managing RA. More research is needed to identify the ways in which health professionals can best support patient Internet use for optimum outcome, and encourage patients to become more informed partners in care.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/using-the-internet-in-help-seeking-as-illness-develops-in-early-rheumatoid-arthritis/