Literature DB >> 19762197

The information and support needs of patients diagnosed with High Grade Glioma.

Georgia K B Halkett1, Elizabeth A Lobb, Lynn Oldham, Anna K Nowak.   

Abstract

OBJECTIVE: To understand patients' experiences of High Grade Glioma and identify and describe information and support needs along the disease trajectory.
METHODS: Semi-structured interviews were conducted with 19 patients. Data was analysed using grounded theory and the constant comparative method.
RESULTS: Four major themes were identified: (1) feelings of uncertainty around prognosis and quality of life; (2) the need for individualised information; (3) dependence on carers due to cognitive deficits, loss of balance and inability to drive; and (4) communication with health professionals around prognostic uncertainty and disease progression with communication barriers due to complex language deficits.
CONCLUSION: Previous studies in HGG pre-date the current combined modality standard of care, or examined a mixed population. This study has found that patients with HGG have needs that differ from other patients with terminal malignancy and that these needs change over time with disease progression. PRACTICE IMPLICATIONS: This study has identified that patients with brain tumours may have unique needs. Health professionals need to clarify patients' information and support needs and be aware that these change over and within time. 2009 Elsevier Ireland Ltd. All rights reserved.

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Year:  2009        PMID: 19762197     DOI: 10.1016/j.pec.2009.08.013

Source DB:  PubMed          Journal:  Patient Educ Couns        ISSN: 0738-3991


  36 in total

Review 1.  Systematic review of supportive care needs in patients with primary malignant brain tumors.

Authors:  Elizabeth Ford; Susan Catt; Anthony Chalmers; Lesley Fallowfield
Journal:  Neuro Oncol       Date:  2012-02-03       Impact factor: 12.300

2.  Care and support needs of patients and carers early post-discharge following treatment for non-malignant brain tumour: establishing a new reality.

Authors:  Petrea Cornwell; Bronwyn Dicks; Jennifer Fleming; Terry P Haines; Sarah Olson
Journal:  Support Care Cancer       Date:  2012-10       Impact factor: 3.603

3.  Assessing patient and caregiver needs and challenges in information and symptom management: a study of primary brain tumors.

Authors:  Rebecca J Hazen; Amanda Lazar; John H Gennari
Journal:  AMIA Annu Symp Proc       Date:  2017-02-10

4.  Evaluating patients for psychosocial distress and supportive care needs based on health-related quality of life in primary brain tumors: a prospective multicenter analysis of patients with gliomas in an outpatient setting.

Authors:  Anne-Katrin Hickmann; Marlene Hechtner; Minou Nadji-Ohl; Mareile Janko; Ann Katrin Reuter; Karoline Kohlmann; Markus Haug; Sonja Grüninger; Monika Deininger; Oliver Ganslandt; Jochem König; Christian Rainer Wirtz; Jan Coburger; Mirjam Renovanz
Journal:  J Neurooncol       Date:  2016-09-16       Impact factor: 4.130

5.  Feasibility Testing and Refinement of a Supportive Educational Intervention for Carers of Patients with High-Grade Glioma - a Pilot Study.

Authors:  Georgia K B Halkett; Elizabeth A Lobb; Lisa Miller; Thérèse Shaw; Rachael Moorin; Anne Long; Anne King; Jenny Clarke; Stephanie Fewster; Anna K Nowak
Journal:  J Cancer Educ       Date:  2018-10       Impact factor: 2.037

Review 6.  Through the patient's eyes: the value of a comprehensive brain tumor center.

Authors:  Adam M Robin; Tobias Walbert; Tom Mikkelsen; Steven N Kalkanis; Jack Rock; Ian Lee; Mark L Rosenblum
Journal:  J Neurooncol       Date:  2014-07-16       Impact factor: 4.130

Review 7.  A systematic review of unmet needs of newly diagnosed older cancer patients undergoing active cancer treatment.

Authors:  M T E Puts; A Papoutsis; E Springall; A E Tourangeau
Journal:  Support Care Cancer       Date:  2012-04-04       Impact factor: 3.603

8.  Do carer's levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress?

Authors:  G K B Halkett; E A Lobb; T Shaw; M M Sinclair; L Miller; E Hovey; A K Nowak
Journal:  Support Care Cancer       Date:  2017-08-14       Impact factor: 3.603

9.  Initial psycho-oncological counselling in neuro-oncology: analysis of topics and needs of brain tumour patients.

Authors:  Stephanie Schipmann; Eric Suero Molina; Anna Frasch; Walter Stummer; Dorothee Wiewrodt
Journal:  J Neurooncol       Date:  2017-11-17       Impact factor: 4.130

10.  The multidimensional burden of informal caregivers in primary malignant brain tumor.

Authors:  Eléonore Bayen; Florence Laigle-Donadey; Myrtille Prouté; Khê Hoang-Xuan; Marie-Eve Joël; Jean-Yves Delattre
Journal:  Support Care Cancer       Date:  2016-09-13       Impact factor: 3.603

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