‘It's more scary not to know’: a qualitative study exploring the information needs of patients with systemic lupus erythematosus at the time of diagnosis

Objectives: To identify the information needs of patients newly diagnosed with systemic lupus erythematosus (lupus), to inform the design of a future education package.
Methods: Focus groups were conducted in seven rheumatology centres in the UK with 43 purposively selected participants. Data were subjected to thematic inductive analysis.
Results: The first major theme, ‘Impact of early information’, describes how for many individuals information was scant and, as most had little prior knowledge of lupus, the information was difficult to absorb, leaving them with feelings of fear and confusion. ‘Information received versus information sought’ (theme 2) describes how few participants felt they had received clear, consistent information. For most, information was felt to be insufficient, forcing them to seek it elsewhere, which, if unsuitable, resulted in further distress. ‘Early education needs’ (theme 3) reflects that patients would rather be informed of potential problems than remain naïve. Patients felt that receiving a comprehensive information pack as an adjunct to verbal information from their clinician would be helpful, along with rapid access to knowledgeable professionals when they were ready to ask questions about their lupus.
Conclusions: Participants stated information and support currently provided at diagnosis is inadequate for their needs. They would like detailed information, provided through a variety of formats. Crucially this should be supported by professionals and available at whatever point in the patient's journey they want to access such discussions. The challenge is for health professionals to meet these needs in the most beneficial and cost effective way.