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”,
ReviewPsychosocial and supportive-care needs in high-grade glioma
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
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