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
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:
-
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.
-
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.
-
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:
/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.
Top of page
