Background: Surgical intervention for weight loss (bariatric-metabolic surgery) is increasingly recognised as an effective treatment option for people living with idiopathic intracranial hypertension (IIH).1 However, there is limited guidance regarding which outcomes should be routinely measured to evaluate treatment success from both patient and clinician perspectives. Existing outcome recommendations are not specific to bariatric-metabolic surgery and may not fully reflect priorities of people living with IIH.2,3
Methods: This study followed Core Outcome Set-STAndards for Development (COS-STAD)4 recommendations to identify and prioritise patient-centred outcomes relevant to bariatric-metabolic surgery for IIH. Content experts (neurologists and endocrinologists) and consumers with lived experience of IIH who had undergone bariatric-metabolic surgery through a publicly funded Queensland service participated. Phase 1 involved literature review and stakeholder consultation to generate a comprehensive list of outcomes. In Phase 2, a modified virtual nominal group technique5 and ranking exercise were used to prioritise outcomes.
Results: Eight consumers and five content experts participated. Sixteen outcomes were identified for prioritisation. The five highest-ranked outcomes overall were: preservation of vision, improved quality of life, reduction in headache symptoms, avoidance of other invasive treatments, and reduction in IIH-related medications. Consumers and content experts agreed on three priorities: preservation of vision, improved quality of life, and reduction in IIH-related medications. Differences were also observed. Consumers ranked reduction in headache symptoms and body weight among their highest priorities, whereas content experts prioritised avoidance of invasive treatments and papilloedema resolution. Consumers identified weight stigma as a common experience that negatively impacted healthcare interactions, and highlighted research into the aetiology of IIH as an ongoing priority.
Conclusions: Evaluation of bariatric-metabolic surgery for people living with IIH should extend beyond weight loss alone. Incorporating patient-centred outcomes into routine clinical practice and research may improve service evaluation, support person-centred care, and ensure outcomes measured reflect what matters most to patients.