title: A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services.
abstract: OBJECTIVE
  To investigate the symptom experience, access to supportive care services and rehabilitation of patients with a primary malignant brain tumour (PMBT) and their carers.
  
  
  METHODS
  A case review of 70 patients with a diagnosis of PMBT who received palliative care in five specialist palliative care units between July 2005 and June 2006. The review examined patients' symptom experience, care issues, access to rehabilitation and access to supportive care services.
  
  
  RESULTS
  The two most significant issues experienced by patients and identified in the case review were hemiparesis (17%) and cognitive problems (16%). There were a number of care problems concerning safety related to mobility and falls (9%). Symptoms related to fatigue and tiredness were reported infrequently. There was an absence of information relating to the needs of informal carers; however, 18% of carers accessed bereavement counselling services following the death of the person they cared for.
  
  
  CONCLUSIONS
  The needs of carers were not found to be routinely documented within the case notes. For some patients, referral to specialist palliative care services occur late in the illness trajectory, which means that patients and carers may not be able to access the full range of supportive care services available. Initial assessment of patients should identify the range of support services that both carers and patients are offered; and the uptake and response to services should be documented throughout the illness trajectory.
authors.affiliation: Pathway Leader Cancer Care, Faculty of Health Na Medical Sciences, University of Surrey, Guildford, United Kindom. a.arber@surrey.ac.uk
authors.forename: Anne
authors.initials: A
authors.lastname: Arber
authors.forename: Sara
authors.initials: S
authors.lastname: Faithfull
authors.forename: Marek
authors.initials: M
authors.lastname: Plaskota
authors.forename: Caroline
authors.initials: C
authors.lastname: Lucas
authors.forename: Kay
authors.initials: K
authors.lastname: de Vries
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D001932:Brain Neoplasms / Q000150:complications / Q000451:nursing* / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment / Q000458:organization & administration*; D010166:Palliative Care; D012944:Social Support