Understanding the cognitive and behavioural changes faced by brain tumour patients
A novel collaboration involving cancer services and brain injury researchers to better understand the cognitive and behavioural changes faced by brain tumour patients, has resulted in an innovative project that has won both national recognition from the scientific community, and heartfelt thanks from patients with brain tumours and their carers
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Funded by the Cancer Institute NSW through its NSW Oncology Group (NSWOG) Neuro-Oncology, this twelve-month project brought together a novel collaboration involving staff from Liverpool and Royal North Shore Hospitals, working in neuro-oncology teams in cancer services (Teresa Simpson, Dr Eng-Siew Koh), neurosurgical nursing (Kylie Wright, Rochelle Firth) and brain injury research (Dr Grahame Simpson, Diane Whiting, and Kathryn Younan).
The goals of the project were to:
- investigate the prevalence of behavioural and cognitive changes among adults with primary brain tumours, and;
- pilot psychosocial treatment interventions.
This is a much under-researched and under-resourced patient group who already experience a myriad of physical and psychosocial stressors throughout their cancer journey. The carers’ role in this population is crucial, as such their involvement in the study was pivotal.
The project consisted of four components:
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To investigate the prevalence of behavioural and cognitive changes among adult patients with primary brain tumours.
Results demonstrated an unexpectedly high prevalence of both behavioural and cognitive (in the area of executive impairment) changes in patients with both malignant and benign brain tumours across their care trajectory. This study represents the first systematic prevalence study of behavioural changes after a primary brain tumour.
Patient-reported (n=54) prevalence rates for behavioural or cognitive changes ranged from: 7 per cent (emotional dyscontrol, helplessness, euphoria) to a high of 40 per cent (executive impairment), with rates for significant clinical issues including apathy, inertia, anger and inappropriate behaviour extending from 20 to 35 per cent.
Family-reported (n=37) prevalence rates for behavioural disturbances or cognitive impairments ranged from 8 per cent (euphoria) up to 60 per cent (apathy) with rates for significant behavioural impairments including disinhibition, executive impairment, anger, indifference, fatigue and initiation problems extending from 22 to 36 per cent.
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To pilot psychosocial interventions with the patient and family members to minimise the impact of such changes.
One patient with socio-behavioural changes secondary to a primary brain tumour was successfully treated with an individually designed neuro-behavioural intervention. Seven family members participated in a pilot carer education program, with results from post- versus pre-workshop tests indicating that carers made a statistically significant improvement in their knowledge in managing these changes. These preliminary results highlight that such psychosocial interventions show promise as effective management approaches for these problematic changes.
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To develop information resources for patients, family members and health professionals about management of behavioural and cognitive changes.
Given the dearth of existing and relevant resources, a suite of comprehensive information resources (16 ‘factsheets’) was produced to address specific behavioural and cognitive changes associated with primary brain tumours, as well as 11 additional resource sheets. From stress and anxiety to inappropriate social/sexual behaviour, the resources have been widely disseminated and published through various national and international forums. The format of the factsheets allows them to be easily utilised by patients, families and also provides strategies for health professionals not familiar with such behaviours. These Factsheets are available on-line at:
http://www.cancerinstitute.org.au/cancer_inst/nswog/groups/neuro1.html#factsheets -
To trial a dedicated training workshop designed to educate and up-skill health professionals working in neurosurgical and cancer services in management approaches in dealing with patients who exhibit behavioural and cognitive changes.
Results indicated that the 46 participants made a statistically significant improvement in their knowledge and skills in managing these changes (comparing pre-workshop versus post- workshop scores). The workshop also received very favourable feedback from participants.
Winning two national awards: The Australasian Neuroscience Nurses Association prize (Kylie Wright) and COSA ‘Best of the Best’ poster presentation (Teresa Simpson and Dr Grahame Simpson), has inspired the team to continue research in this area.
The future clinical and research challenges in this area include how to raise awareness of cognitive and behavioural changes, best screen for these changes and then develop and institute effective interventions which can be integrated within existing models of care for brain tumour patients and their families.
About the author: Dr Eng-Siew Koh
Dr Eng-Siew Kohis a Radiation Oncologist at Liverpool Cancer Therapy Centre, NSW and undertakes clinical research through the Collaboration for Cancer Outcomes Research and Evaluation (CCORE). Her particular clinical interests encompass neuro-oncology, haematologic and lung cancer. Her active research areas include investigating cognitive and behavioural sequelae in brain tumour patients, the study of late effects and models of care delivery in cancer survivors.
The Psychosocial Neuro-oncology Research group
L-R: Dr Eng-Siew Koh, Dr Grahame Simpson, Kathryn Younan, Teresa Simpson, Kylie Wright, Diane Whiting and Rochelle Firth
The Psychosocial Neuro-oncology Research group is a novel inter-disciplinary collaboration has been developed since 2007 involving staff from neuro-oncology teams in cancer services, neurosurgical nursing, and brain injury research at both Liverpool and Royal North Shore Hospitals. The focus of the group is clinical research related to the improvement of psychosocial outcomes and addressing survivorship issues for patients with primary brain tumours.