A proposed framework of supportive and palliative care for people with high-grade glioma

Philip, Jennifer, Collins, Anna, Brand, Caroline, Sundararajan, Vijaya, Lethborg, Carrie, Gold, Michelle, Lau, Rosalind, Moore, Gaye and Murphy, Michael 2018, A proposed framework of supportive and palliative care for people with high-grade glioma, Neuro-oncology, vol. 20, no. 3, pp. 391-399, doi: 10.1093/neuonc/nox140.

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Title A proposed framework of supportive and palliative care for people with high-grade glioma
Author(s) Philip, Jennifer
Collins, Anna
Brand, Caroline
Sundararajan, Vijaya
Lethborg, Carrie
Gold, Michelle
Lau, Rosalind
Moore, Gaye
Murphy, Michael
Journal name Neuro-oncology
Volume number 20
Issue number 3
Start page 391
End page 399
Total pages 9
Publisher Oxford University Press
Place of publication Oxford, Eng.
Publication date 2018-03
ISSN 1522-8517
Keyword(s) guidelines
high grade glioma
palliative care
supportive care
Summary Background. Patients with malignant high-grade glioma (HGG) have significant supportive and palliative care needs, yet few tailored guidelines exist to inform practice. This study sought to develop an HGG framework of supportive and palliative care informed by needs reported by patients, families, and health care professionals (HCPs). Methods. This study integrates a mixed-methods research program involving: (i) exploring experiences through systematic literature review and qualitative study (10 patients, 23 carers, and 36 HCPs); and (ii) an epidemiological cohort study (N = 1821) describing care of cases of HGG in Victoria, Australia using linked hospital datasets. Recommendations based on these studies were developed by a multidisciplinary advisory committee for a framework of supportive and palliative care based on the findings of (i) and (ii). Results. Key principles guiding framework development were that care: (i) aligns with patient/family caregiver needs according to illness transition points; (ii) involves continuous monitoring of patient/family caregiver needs; (iii) be proactive in response to anticipated concerns; (iv) includes routine bereavement support; and (v) involves appropriate partnership with patients/families. Framework components and resulting activities designed to address unmet needs were enacted at illness transition points and included coordination, repeated assessment, staged information provision according to the illness transition, proactive responses and referral systems, and specific regular inquiry of patients' and family caregivers' concerns. Conclusion. This evidence-based, collaborative framework of supportive and palliative care provides an approach for patients with HGG that is responsive, relevant, and sustainable. This conceptual framework requires evaluation in robust clinical trials.
Language eng
DOI 10.1093/neuonc/nox140
Field of Research 1109 Neurosciences
1112 Oncology And Carcinogenesis
HERDC Research category C1.1 Refereed article in a scholarly journal
ERA Research output type C Journal article
Copyright notice ©2017, The Authors
Persistent URL http://hdl.handle.net/10536/DRO/DU:30109368

Document type: Journal Article
Collection: School of Nursing and Midwifery
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