Psychosocial and supportive-care needs in high-grade glioma.

The diagnosis and management of high-grade glioma has profound effects on patients and their families. Guidance issued by the UK National Institute of Health and Clinical Excellence in 2006 highlighted the lack of good studies of palliative care for patients with this disease. We describe new studies published from 2000 to 2007. High-grade glioma is undoubtedly a challenging research area, and many studies are poorly defined and have small and biased samples. Nevertheless the data reveal this to be a heterogeneous group of patients with complex needs that differ from those of patients with other cancers. Improvements in care require a united input from neurology and neurosurgery, oncology, and palliative care. The main research priorities are the development and assessment of psychosocial or supportive interventions and the investigation of service provision of specialist palliative and end-of-life care, which have hitherto been neglected.

[1]  S. Preston‐Martin,et al.  A population‐based description of glioblastoma multiforme in Los Angeles County, 1974–1999 , 2005, Cancer.

[2]  Luc Taillandier,et al.  Radiotherapy for glioblastoma in the elderly. , 2007, The New England journal of medicine.

[3]  D. Osoba,et al.  Effect of disease burden on health-related quality of life in patients with malignant gliomas. , 2000, Neuro-oncology.

[4]  P. Strang,et al.  Death anxiety in brain tumour patients and their spouses , 2000, Palliative medicine.

[5]  Walter Curran,et al.  Phase III trial of chemotherapy plus radiotherapy compared with radiotherapy alone for pure and mixed anaplastic oligodendroglioma: Intergroup Radiation Therapy Oncology Group Trial 9402. , 2006, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[6]  T. Cloughesy,et al.  Predicting major depression in brain tumor patients , 2002, Psycho-oncology.

[7]  G. Lyons.  The 'PRESTON Profile'--the first disease-specific tool for assessing quality of life in patients with malignant glioma. , 1996, Disability and rehabilitation.

[8]  G. Ahlström,et al.  A Family’s Perspective on Living With a Highly Malignant Brain Tumor , 2002, Cancer nursing.

[9]  A. Vinokur,et al.  "In Sickness and in Health" , 1990 .

[10]  C. Meyers,et al.  Cognitive Functioning and Quality of Life in Malignant Glioma Patients: A Review of the Literature , 1997 .

[11]  M. Verhoef,et al.  Alternative therapy use in neurologic diseases , 1999, Neurology.

[12]  James Perry,et al.  Evaluation of an educational program for the caregivers of persons diagnosed with a malignant glioma. , 2007, Canadian oncology nursing journal = Revue canadienne de nursing oncologique.

[13]  J. Addington-hall,et al.  Which terminally ill cancer patients in the United Kingdom receive care from community specialist palliative care nurses? , 2000, Journal of advanced nursing.

[14]  W. Struhal,et al.  The end-of-life hospital setting in patients with glioblastoma. , 2008, Journal of palliative medicine.

[15]  Jon A. Mukand,et al.  Incidence of Neurologic Deficits and Rehabilitation of Patients with Brain Tumors , 2001, American journal of physical medicine & rehabilitation.

[16]  Martin Klein,et al.  Cognitive deficits in adult patients with brain tumours , 2004, The Lancet Neurology.

[17]  I. Whittle,et al.  Mood disorders in patients after treatment for primary intracranial tumours. , 1999, British journal of neurosurgery.

[18]  E. Eakin,et al.  Supportive care needs of people with brain tumours and their carers , 2006, Supportive Care in Cancer.

[19]  A. Bergenheim,et al.  How was life after treatment of a malignant brain tumour? , 2000, Social science & medicine.

[20]  R. Arusell,et al.  Prospective Study of Quality of Life in Adults with Newly Diagnosed High-grade Gliomas , 2006, Journal of Neuro-Oncology.

[21]  C. Clarke,et al.  Views of bereaved relatives about quality of survival after radiotherapy for malignant cerebral glioma , 2005, Journal of Neurology, Neurosurgery & Psychiatry.

[22]  A. Kaye,et al.  Emotional and social dysfunction in patients following surgical treatment for brain tumour , 2003, Journal of Clinical Neuroscience.

[23]  P. Strang,et al.  Spiritual thoughts, coping and ‘sense of coherence’ in brain tumour patients and their spouses , 2001, Palliative medicine.

[24]  G. Borasio,et al.  Palliative therapy in the terminal stage of neurological disease , 1997, Journal of Neurology.

[25]  R. Henriksson,et al.  The creation of protection and hope in patients with malignant brain tumours. , 1996, Social science & medicine.

[26]  J. Koivukangas,et al.  Depression and functional outcome in patients with brain tumors: a population-based 1-year follow-up study. , 2005, Journal of neurosurgery.

[27]  A. Hopkins,et al.  Malignant cerebral glioma—II: Perspectives of patients and relatives on the value of radiotherapy , 1996, BMJ.

[28]  R. Warnick,et al.  Functional outcome of inpatient rehabilitation in persons with brain tumors. , 1998, Archives of physical medicine and rehabilitation.

[29]  I. Higginson,et al.  Communication, information and support for adults with malignant cerebral glioma : a systematic literature review , 2002, Supportive Care in Cancer.

[30]  E. Laws,et al.  Depression in Patients with High-grade Glioma: Results of the Glioma Outcomes Project , 2004, Neurosurgery.

[31]  R. Mirimanoff,et al.  Radiotherapy and temozolomide for newly diagnosed glioblastoma: recursive partitioning analysis of the EORTC 26981/22981-NCIC CE3 phase III randomized trial. , 2006, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[32]  M. Dodd,et al.  Relationship between fatigue and quality of life in patients with glioblastoma multiformae. , 1999, Oncology nursing forum.

[33]  C. Edwards,et al.  Prospective study of neuropsychologic testing and quality-of-life assessment of adults with primary malignant brain tumors. , 2003, International journal of radiation oncology, biology, physics.

[34]  K. Hamberg,et al.  Pathways from symptoms to medical care: a descriptive study of symptom development and obstacles to early diagnosis in brain tumour patients. , 1999, Family practice.

[35]  M. Brada,et al.  Evaluation of a nurse-led telephone clinic in the follow-up of patients with malignant glioma. , 2000, Clinical oncology (Royal College of Radiologists (Great Britain)).

[36]  A. Bergenheim,et al.  How to tell cancer patients : A contribution to a theory of communicating the diagnosis , 1999 .

[37]  M. Taphoorn,et al.  Neurobehavioral status and health-related quality of life in newly diagnosed high-grade glioma patients. , 2001, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[38]  Sandra Remer,et al.  The challenges of long-term treatment outcomes in adults with malignant gliomas. , 2004, Clinical journal of oncology nursing.

[39]  R. Reitan,et al.  Neuropsychological correlates of rapidly vs. slowly growing intrinsic cerebral neoplasms. , 1984, Journal of clinical neuropsychology.

[40]  R. Hales,et al.  J Neuropsychiatry Clin Neurosci , 1992 .

[41]  J. Koivukangas,et al.  Gender difference in relation to depression and quality of life among patients with a primary brain tumor , 2006, European Psychiatry.

[42]  P. Seed,et al.  Symptoms and concerns amongst cancer outpatients: identifying the need for specialist palliative care , 2003, Palliative medicine.

[43]  Jan J. Heimans,et al.  Impact of brain tumour treatment on quality of life , 2002, Journal of Neurology.

[44]  A. Richardson.  Improving supportive and palliative care for adults with cancer. , 2003, Nursing times.

[45]  B. Given,et al.  Forgotten voices: lessons from bereaved caregivers of persons with a brain tumour. , 2004, International journal of palliative nursing.

[46]  Brain tumor support group: content themes and mechanisms of support. , 1996 .

[47]  P. Salander.  Brain tumor as a threat to life and personality : The spouse's perspective , 1996 .

[48]  J. Curren.  Support needs of brain tumour patients and their carers: the place of a telephone service. , 2001, International journal of palliative nursing.

[49]  N. Jodrell,et al.  The distress associated with cranial irradiation: a comparison of patient and nurse perceptions. , 1999, Cancer nursing.

[50]  M. Brada,et al.  Who should follow up cancer patients? Nurse specialist based outpatient care and the introduction of a phone clinic system. , 1994, Clinical oncology (Royal College of Radiologists (Great Britain)).

[51]  P. Salander,et al.  How do patients and spouses deal with the serious facts of malignant glioma? , 2002, Palliative medicine.

[52]  M. Taphoorn,et al.  Interventions for cognitive deficits in adults with brain tumours , 2008, The Lancet Neurology.

[53]  R. Scheibel,et al.  Cognitive dysfunction following surgery for intracerebral glioma: influence of histopathology, lesion location, and treatment , 1996, Journal of Neuro-Oncology.

[54]  A. Hopkins,et al.  Good practice in the management of adults with malignant cerebral glioma: clinical guidelines. Working Group, Royal College of Physicians. , 1997, British journal of neurosurgery.

[55]  A. Hopkins,et al.  Malignant cerebral glioma—I: Survival, disability, and morbidity after radiotherapy , 1996, BMJ.

[56]  D. Cifu,et al.  Functional outcome after brain tumor and acute stroke: a comparative analysis. , 1998, Archives of physical medicine and rehabilitation.

[57]  C. Lucas,et al.  Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided , 2005, Palliative medicine.

[58]  A. Heinemann,et al.  Functional outcomes of persons with brain tumors after inpatient rehabilitation. , 2001, Archives of physical medicine and rehabilitation.

[59]  J. Koivukangas,et al.  Level of obsessionality among neurosurgical patients with a primary brain tumor. , 2005, The Journal of neuropsychiatry and clinical neurosciences.

[60]  A. Hopkins,et al.  Improving care for patients with Malignant Cerebral Glioma , 1997 .

[61]  R. Mirimanoff,et al.  MGMT gene silencing and benefit from temozolomide in glioblastoma. , 2005, The New England journal of medicine.

[62]  C. Clarke,et al.  Two year survival after malignant cerebral glioma: patient and relative reports of handicap, psychiatric symptoms and rehabilitation , 2003, Disability and rehabilitation.

[63]  J. Rabbitt,et al.  Selected complications in neuro-oncology patients. , 1998, Seminars in Oncology Nursing.

[64]  P. Wen,et al.  Medical management of patients with brain tumors , 2006, Journal of Neuro-Oncology.

[65]  M. Brada,et al.  Somnolence syndrome in adults following cranial irradiation for primary brain tumours. , 1998, Clinical oncology (Royal College of Radiologists (Great Britain)).

[66]  V. Levin,et al.  Methylphenidate therapy improves cognition, mood, and function of brain tumor patients. , 1998, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[67]  A. Thompson,et al.  Rehabilitation of the Cancer Patient: Experience in a Neurological Unit , 2004, Neurorehabilitation and neural repair.

[68]  P. Strang,et al.  Existential support in brain tumour patients and their spouses , 2001, Supportive Care in Cancer.

[69]  Catherine Lantz,et al.  The Brain Tumor Experience and Quality of Life: A Qualitative Study , 1998, The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses.

[70]  A. Bergenheim,et al.  A specialist nurse-function in neurooncology: A qualitative study of possibilities, limitations, and pitfalls , 2005, Palliative and Supportive Care.

[71]  M. Verhoef,et al.  Quality of Life in Brain Tumor Patients: The Relative Contributions of Depression, Fatigue, Emotional Distress, and Existential Issues , 2002, Journal of Neuro-Oncology.

[72]  M. Taphoorn,et al.  The course of neurocognitive functioning in high-grade glioma patients. , 2007, Neuro-oncology.

[73]  S. Faithfull.  Patients' experiences following cranial radiotherapy: a study of the somnolence syndrome. , 1991, Journal of advanced nursing.

[74]  I. Whittle,et al.  Anxiety and depression in patients with an intracranial neoplasm before and after tumour surgery. , 1999, British journal of neurosurgery.

[75]  C. Wallesch,et al.  Coping with illness after brain diseasesa comparison between patients with malignant brain tumors, stroke, Parkinson's disease and traumatic brain injury , 2000, Disability and rehabilitation.