A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services

Abstract

Aim: 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 fi ve 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 signifi cant issues experienced by patients and identifi ed 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. Conclusion: 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.

Don’t need help, don’t want help, can’t get help: How patients with brain tumors account for not using rehabilitation, psychosocial and community services

“…Our results add to growing evidence that a gap between patients' needs and their use of supports or support services exists [2][3][4][11][12][13]. The gap may be partly due to factors relating to the availability of appropriate services, particularly in regional or rural areas [14].…”

Barriers to accessing palliative care: A review of the literature

“…Other studies have reported that psycho-social needs are less likely to be triggers for referral to PC services, (12,33) that physicians' ratings of patient concur poorly with patients' ratings, (34) and that carers' needs are not routinely documented. (35) Problems also relate to insufficient trained staff with knowledge about referral to palliative care. (31) Late referrals may result in poorer transition between acute and palliative care services, indicated by lower satisfaction with care received and a higher number of unmet needs than those referred earlier.…”

Supportive Care Needs following Cancer Treatment: A Comparison of Breast and Brain Cancer in an Australian Cohort

“…Breast cancer (BC) is the most common malignancy in women [1], comprising up to 16% of all cancers in women [2]. Primary brain tumours (BT), a comparatively rare and diverse group of neoplasms, account for 2% of all cancers [3] and affect 7 per 100,000 population annually worldwide [4]. The overall incidence of BC and BT is on increase worldwide [2].…”