Exploring the lived experience of a high grade glioma

Shivani Soni, Matthew Williamas, Antonia Lannie

    Research output: Contribution to journalConference articlepeer-review

    62 Citations (Scopus)


    Introduction: Brain tumour patients face a variety of challenges during diagnosis and treatment. Although most treating clinicians are familiar with these, it can be difficult to obtain a comprehensive overview of which are the most common problems, which patients they affect and how to address them.

    Methods: We conducted a systematic review of all work relating to the lived experience of patients and carers of a glioblastoma. We identified articles published between 2008 and 2018 these had to be published in English, using the search terms cares and patients, lived experience, glioblastoma and perspective with relative alternative terms. We excluded articles that were previous systematic reviews, included low grade/brain metastasis from another primary site and articles that combined results for patients and carers. We extracted key theme and concerns, and summarised and tabulated and developed a discussion/recommendation.

    Results: We identified 405 potential studies. We rejected 374 after screening abstract and titles, and a further 23 on further review. This left a set of 8 unique publications. The 8 publications included were comprised of qualitative studies that explored patient and carers experience at different points in the patient pathway. The main concerns/themes identified were issues around communication specifically the shock of diagnosis, re-negotiating relationships and finally accessing support.

    Conclusions: This is the first systematic review that collates the lived experience of patients with high grade gliomas. It differs from the palliative care literature and from the James Lind Alliance, and is more specific than generic health needs assessments that are being used in practice.
    Original languageEnglish
    Pages (from-to)iv14
    Number of pages1
    Issue numberSupplement 4
    Early online date12 Oct 2019
    Publication statusPublished - Oct 2019


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