Palliative and supportive care needs of patients with high-grade glioma and their carers: a systematic review of qualitative literature

Abstract

Objective: Patients diagnosed with primary malignant glioma (PMG) face substantial challenges with poor prognosis, high symptom burden and care needs. This study aims to collate current literature detailing the supportive and palliative care needs of patients with PMG and their carers, and to subject it to a novel approach of formal evaluation.

Methods: Medline, EMBASE, CINAHL, PsychInfo were searched with core concepts: (1) glioma, (2) high-grade disease, and (3) palliative and supportive care needs. A narrative synthesis approach was undertaken including a quality appraisal of the 21 included studies.

Results: Key themes related to the need for consistent well-delivered information around disease sequelae, treatment, and resources available; health service needs including a key professional identified to coordinate care; the need for psychological and social supports, and clear avenues of communication with treating professionals.

Conclusion: The literature remains limited in the number and quality of evidence with two level I, eight level II, and eleven level III studies. The findings call for improved information, communication and support practices to address the complexity and breadth of needs.

Practice implications: Specialised and individually tailored information, attention to clear, consistent communication and support practices should be incorporated into a future needs-based model of care.