Elsevier

The Lancet Oncology

Volume 9, Issue 9, September 2008, Pages 884-891
The Lancet Oncology

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

https://doi.org/10.1016/S1470-2045(08)70230-4Get rights and content

Summary

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.

Section snippets

Brain tumours in adults

About 2% of all adult patients with cancer have primary brain tumours,1 most (80–85%) of which are high-grade glioma, a devastating disease.2 Although this cancer affects adults of all ages, incidence rises with age, and the diagnosis of high-grade (World Health Organization grades 3 and 4) glioma is made most commonly in elderly people1 (figure 1). In adults, the disease is incurable and effective therapies for substantially extending life are elusive.3, 4, 5 However, the introduction of

What helps patients?

A decade ago, a UK working group9 produced clinical guidance from a synthesis of evidence in the literature and expert opinion. Only a few empirical studies10, 11, 12 of psychosocial and supportive needs specific to patients with glioma and their families were available. Recommendations were based on the experience of health-care professionals and general publications. Nevertheless, key topics for the research community to address were identified: communication of the diagnosis and prognosis;

Cognitive problems

Few studies have addressed the effect of cognitive deterioration adequately as assessments have relied on IQ scores, performance status, and neurological examination.62 Comprehensive cognitive assessment and longitudinal follow-up can characterise neurocognitive problems and assess interventions to ameliorate or delay further impairment. Rehabilitation through physiotherapy and occupational therapy has some benefit in motor rather than cognitive functioning.32, 33 Psychostimulants have been

Role of carers

Relatives bear the burden of care,18 which disrupts family life.23 Families experience initial chaos followed by a heavy burden of care,53 and relatives report feelings of powerlessness, helplessness, and isolation, and their health and wellbeing suffer. Financial difficulties are also apparent, and some families criticise the system of support available to them.22 Recent testimony of encounters with staff show that continuity of health-care personnel helps to establish cohesion and provide

Nurse specialists

Specialist nurse support is valued and its introduction into neuro-oncology was strongly advocated.10, 19, 22, 26, 71 Routine physician-led clinic follow-up might not best serve patients' needs.71 Nurse-led phone clinics have been investigated,10, 26 although future research is needed to define the best combination of medical and nurse-led follow-up.13 Nurse specialists are resources for both patients and their families,56, 72 providing a conduit between them and the hospital. Patients and

Discussion

Progress in psychosocial and supportive care research between the early guidance9 and NICE's 2006 clinical guidance29 has been slow, emphasising that high-grade glioma is a particularly challenging disease not least because of ethical and practical issues. Factors underlying the challenge include the small study population, a disease that can rapidly progress from diagnosis to death, patients who have physical and mental disability and decline, and carers who are commonly overburdened.

Conclusion

Limited evidence confirms that patients with high-grade glioma form a heterogeneous population with complex needs. Differing from patients with other cancers, those with high-grade glioma need an integrated input from neurology and neurosurgery, oncology, and palliative care. Research in this area is not for the faint-hearted. The big tasks for future research are to develop and empirically test support initiatives that will help patients, their families, and health-care professionals to deal

Search strategy and selection criteria

Articles were identified by searches of Pubmed, Psychinfo, Social Sciences Citation Index, and Cochrane Library with the search terms and combinations of “glioma”, “primary brain tumour”, “brain cancer”, “malignant brain tumour”, “glioblastoma”, “GBM”, “quality of life”, “QOL”, “psychological”, “psychosocial”, “social”, “anxiety”, “depression”, “fatigue”, “cognition”, “cognitive deficits”, “care needs”, “support”, “follow-up care”, “nursing care”, “palliative care”, “communication”,

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