Jennifer Philip1,2, Anna Collins1, Caroline Brand3, Vijaya Sundararajan1, Carrie Lethborg2, Michelle Gold4, Rosalind Lau2, Gaye Moore2, Michael Murphy5. 1. Department of Medicine, University of Melbourne, Victoria, Australia. 2. St Vincent's Hospital, Melbourne, Victoria, Australia. 3. Department of Medicine, Monash University, Victoria, Australia. 4. Palliative Care Service, Alfred Hospital, Victoria, Australia. 5. Department of Neurosurgery, St Vincent's Hospital, Melbourne, Victoria, Australia.
Abstract
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.
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.
Authors: Georgia K B Halkett; Elizabeth A Lobb; Thèrése Shaw; Michelle M Sinclair; Lisa Miller; Elizabeth Hovey; Anna K Nowak Journal: Support Care Cancer Date: 2016-11-14 Impact factor: 3.603
Authors: Vijaya Sundararajan; Megan A Bohensky; Gaye Moore; Caroline A Brand; Carrie Lethborg; Michelle Gold; Michael A Murphy; Anna Collins; Jennifer Philip Journal: J Neurooncol Date: 2014-01 Impact factor: 4.130
Authors: Jennifer Philip; Anna Collins; Caroline A Brand; Michelle Gold; Gaye Moore; Vijaya Sundararajan; Michael A Murphy; Carrie Lethborg Journal: Palliat Support Care Date: 2013-10-21
Authors: Anna Collins; Carrie Lethborg; Caroline Brand; Michelle Gold; Gaye Moore; Vijaya Sundararajan; Michael Murphy; Jennifer Philip Journal: BMJ Support Palliat Care Date: 2013-06-01 Impact factor: 3.568
Authors: James L Rogers; Elizabeth Vera; Alvina Acquaye; Nicole Briceno; Varna Jammula; Amanda L King; Heather Leeper; Martha M Quezado; Javier Gonzalez Alarcon; Lisa Boris; Eric Burton; Orieta Celiku; Anna Choi; Alexa Christ; Sonja Crandon; Ewa Grajkowska; Nicole Leggiero; Nicole Lollo; Marta Penas-Prado; Jennifer Reyes; Christine Siegel; Brett J Theeler; Michael Timmer; Kathleen Wall; Jing Wu; Kenneth Aldape; Mark R Gilbert; Terri S Armstrong Journal: Neurooncol Pract Date: 2021-04-10