Publications
Published
2022
Scoping the psychological support practices of health professionals working with adults with primary brain tumor and their families
Ownsworth T, Lion K, Sansom-Daly U, Pike K, Koh E, Halkett G, Pinkham M, Chan R, Dhillon HM for the BRAINS Program Investigators
This study aimed to scope the psychological support practices of Australian health professionals providing supportive care to adults with primary brain tumor…read more.
Supportive care of patients diagnosed with high grade glioma and their carers in Australia
Halkett GKB, Berg MN, Daudu D, Dhillon HM, Koh ES, Ownsworth T, Lobb E, Phillips J, Langbecker D, Agar M, Hovey E, Moorin R, Nowak AK
This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers; identify service gaps; and inform changes needed to implement guidelines and Optimal Care Pathways…read more.
Brain cancer patients’ levels of distress and supportive care needs over time
Halkett G, Lobb E, Spilsbury K, Dhillon HM, Nowak AK
This study aimed to describe patient self-reported distress over time and how this was associated with wellbeing, and supportive care needs over a 6-month period from commencing chemoradiotherapy for high grade glioma (HGG)…read more.
2023
Carer preparedness improved by providing a supportive educational intervention for carers of patients with high-grade glioma: RCT results
Halkett GKB, Lobb EA, Phillips JL, McDougall E, Clarke J, Campbell R, Dhillon HM, McGeechan K, Hudson P, King A, Wheeler H, Kastelan M, Long A, Nowak AK; Care-IS Project Team
High-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress…read more.
Bereavement outcomes of carers of patients with high grade glioma: Experiences of support before and after the death
Lobb EA, Halkett GKB, McDougall E, Campbell R, Dhillon H, Phillips JL, Nowak A
Carers of people with High Grade Glioma (HGG) completed a survey assessing their anxiety, depression, and grief in addition to open-ended questions exploring their experiences of support pre- and post-death (N = 25). One-third reported borderline or clinical levels of anxiety, depression, and grief related distress. Given the poor prognosis and rapid deterioration of patients with HGG, the findings highlight the importance of sensitive communication about prognosis early in the disease trajectory, information tailored to disease stage, the initiation of a referral to psychological support services, and timely discussions about the preferred place of care and death…read more.
Access to psychosocial support for people with brain tumor and family members: Healthcare professional perspectives
Lion KM, Pike K, Dhillon HM, Koh E, Pinkham MB, Shaw J, Halkett G, Ownsworth T for the BRAINS Program Investigators
Ongoing access to psychosocial support is important to maintain the well-being of people with brain tumor (PwBT) and their families; yet, there is limited knowledge of psychosocial care access. This qualitative study aimed to develop an understanding of psychosocial support pathways specific to PwBT from the perspectives of Australian healthcare professionals…read more.
Exploratory Multi-Methods Evaluation of an Online Intervention for Carers of People with High Grade Glioma
Haydon HM, Blackler A, Nowak AK, Langbecker D, Collier J, Halkett G.
Inadequate knowledge and skills and a lack of confidence to provide care have been identified as major unmet needs for carers of people with brain cancer. An online intervention was developed to address the unmet needs of carers of people with high-grade glioma…read more.
Psychosocial interventions for personality and behavior changes in adults with a brain tumor: A scoping review
McDougall E, Breen LJ, Nowak AK, Dhillon HM, Halkett G
The objective of this scoping review was to describe the intervention characteristics and effectiveness of psychosocial interventions aimed at managing personality and behavior changes in people with brain tumors. A secondary objective was to explore if these interventions had an impact on outcomes for carers. Personality and behavior changes considered included aggression, apathy, paranoia, disinhibition, and emotional lability…read more.
Exploring the clinical utility of a brief screening measure of unmet supportive care needs in people with high-grade glioma
Campbell R, Faris M, Shaw J, Halkett GKB, Legge D, Koh E-S, Nowak AK, Agar MR, Ownsworth T, Pike KE, Chan RJ, Dhillon HM
People living with high-grade glioma (HGG) have diverse and complex needs. Screening aims to detect patients with some level of unmet need requiring triaging and further assessment. However, most existing measures of unmet need are not suitable for screening in this population due to their length. We aimed to explore the clinical utility of a brief screening tool (SCNS-ST9) in people with HGG in detecting unmet needs…read more.
2024
Halkett GKB, McDougall E, Berg M, Clarke J, Dhillon HM, Lobb E, Phillips JL, Hudson P, Faris MM, Campbell R, Shaw J, Coyne E, Ownsworth T, Legge DM, Nowak AK.
Carers play an important role in supporting patients diagnosed with high-grade glioma (HGG). However, this experience is frequently distressing and many carers require support…read more.
Lion, KM, Jamieson, A., Billin, A., Pinkham, M., Ownsworth, T.
Family caregivers of people with high-grade glioma often report high rates of psychological distress, which has been attributed to the unique aspects of the disease and onerous care demands. Clinical practice guidelines advocate for caregiver support from diagnosis through to end-of-life and bereavement. Yet, research has identified that caregivers’ support needs are often overlooked…read more.
Unmet needs in people with high-grade glioma: defining criteria for stepped care intervention
Faris, M. M., Dhillon, H. M., Campbell, R., Halkett, G. K., Miller, A., Chan, R. J., ... & Shaw, J.
We aimed to define levels of unmet supportive care needs in people with primary brain tumor and to reach expert consensus on feasibility of addressing patients’ needs in clinical practice…read more.
What factors can improve preparedness in carers of people with High Grade Glioma?
Clarke JJ, Halkett GKB (corresponding author), McDougall E, Dhillon HM, Lobb E, Phillips JL, Hudson P, Nowak AK, on behalf of the Care-IS team.
Concerning levels of stress, strain, and poorer mental health are observed in family carers of patients diagnosed with high-grade glioma (HGG). Understanding the reported unmet needs of these carers will enable future interventions to address such needs to improve their preparedness for care and well-being. In this secondary analysis, we aimed to explore: (i) what carers of people with HGG perceive could improve their preparedness to care; and (ii) what needs carers reported they required additional support with…read more.
Conference Presentations and Posters
2022
1. Campbell R, Shaw J, Halkett G, Faris M, Dhillon HM. Screening for unmet needs of people affected by brain cancer: identifying brief screening measures. [Poster Session] 14th COGNO Annual Scientific Meeting, Brisbane, QLD, Australia, Oct 16-18, 2022.
2. Campbell R, Lee Y, Srikumar D, Stewart G, Binta Noor G, Papastamatis N, Afaras I, Koh E, Pinkham MB, Dhillon HM. Capturing the patient voice: a review of patient-reported outcomes included in brain cancer clinical trials. [Conference Presentation Abstract] 14th COGNO Annual Scientific Meeting, Brisbane, QLD, Australia, Oct 16-18, 2022.
3. Campbell R, Shaw J, Halkett G, Faris M, Dhillon H. Screening for unmet needs of caregivers of people with brain cancer: Development of a brief screening measure for use in clinical practice. Poster presentation at the Clinical Oncology Society of Australia (COSA) Annual Scientific meeting, Nov 2-4, 2022.
4. Dhillon H, Shaw J, Faris M, Campbell R, Halkett G, McDougall E. on behalf of BRAINS Investigators. Portals and pathways of the BRAINS program. [Conference Presentation Abstract] 14th COGNO Annual Scientific Meeting, Brisbane, QLD, Australia, Oct 16-18, 2022.
5. Faris M, Shaw J, Halkett G, Campbell R, Dhillon HM. Developing a stepped care model for assessing unmet needs in people diagnosed with high grade glioma: defining criteria for stepped care intervention. [Poster Session] 14th COGNO Annual Scientific Meeting, Brisbane, QLD, Australia, Oct 16-18, 2022.
6. Halkett GB, Lobb EA, Phillips JL, McDougall E, Clarke J, Campbell R, Dhillon HM, McGeechan K, Hudson P, King A, Wheeler H, Kastelan M, Long A, and Nowak AK. on behalf of the Care-IS project team. What support do carers of patients diagnosed with High Grade Glioma require? The Care-IS trial. [Conference Presentation Abstract] 14th COGNO Annual Scientific Meeting, Brisbane, QLD, Australia, Oct 16-18, 2022.
7. Halkett G, Breen L, Berg M, Sampson R, Sim H, Gan H, Kong B, Nowak A, Day B, Harrup R, James M, Saran F, Mcfarlane B, Tse C, Koh E. Determining research priorities for adult primary brain tumours in Australia and New Zealand: A Delphi study. [Conference Presentation Abstract] 14th COGNO Annual Scientific Meeting, Brisbane, QLD, Australia, Oct 16-18, 2022.
8. Haydon H, Blackler A, Nowak A, Vitangcol K, Langbecker D, Halkett G. Optimising an Online Intervention for Carers of People with a Brain Tumour. [Poster Session] 14th COGNO Annual Scientific Meeting, Brisbane, QLD, Australia, Oct 16-18, 2022.
9. Ownsworth, Chambers, Aitken, Foote, Shum, Gordon, Pinkham. Evaluation of the Telehealth Making Sense of Brain Tumour intervention for people with brain tumour and their family members. [Conference Presentation Abstract] 14th COGNO Annual Scientific Meeting, Brisbane, QLD, Australia, Oct 16-18, 2022.
10. Pike K, Virtue-Griffith S, Moeller C, Dhillon H. Cognitive Rehabilitation for Brain Cancer Survivors. [Conference Presentation Abstract] 14th COGNO Annual Scientific Meeting, Brisbane, QLD, Australia, Oct 16-18, 2022.
11. Pike, K.E. Strategies to Manage Memory and Thinking Difficulty after Brain Cancer. Cooperative Trials Group for Neuro-oncology Annual Scientific Meeting and Brain Tumour Association Australia Patient Education Forum, 16/10/2022.
12. Virtue-Griffiths S, Pike K, Moller C, Dhillon HM. Are the cognitive needs of brain cancer survivors being met?: healthcare professional perspectives. [Poster Session] 14th COGNO Annual Scientific Meeting, Brisbane, QLD, Australia, Oct 16-18, 2022.
13. Virtue-Griffiths S. (2022) Cognition following brain cancer: focus groups of concerns, supports and intervention suitability. 2022 APS College of Clinical Neuropsychologists Conference. 01.11.2022
14. Virtue-Griffiths S. (2022) Group-Based Online Cognitive Rehabilitation for Brain Cancer: A Hybrid Implementation-Effectiveness Trial Protocol. 2022 APS College of Clinical Neuropsychologists Conference. 05.11.22
2023
15. Campbell, R., Banks, H., Carlick, T., Faris, M., Jeon, M., Shaw, J., Dhillon, H. (2023, October 8-10) “Just being alive was exhausting”: A qualitative exploration of patient, caregiver and healthcare professional experiences of cancer-related fatigue in people with brain tumour. [Conference Abstract]. 15th COGNO Annual Scientific Meeting.
16. Campbell R. et al. Screening for unmet needs of people affected by brain cancer: identifying brief screening measures. Poster presentation. COSA – Flinders University Cancer Survivorship Conference 2023, Adelaide.
17. Campbell R.et al. Adapting a web-based intervention (RESTORE) to support self-management of cancer-related fatigue in people living with brain cancer. Poster presentation. COSA – Flinders University Cancer Survivorship Conference 2023, Adelaide.
18. Carlick T, (2023). An evaluation of brain tumour information resources - current state and next steps. BRAINS EMCR Showcase. Oral presentation.
19. Carlick, T., Chen, J., Banks, H., Shaw, J., Dhillon, H. (2023, September 18-19). Resources for people with brain tumour are not understandable, readable, or actionable. [Poster Presentation]. NSW Cancer Conference, Sydney, Australia.
20. Carlick, T., Chen, J., Banks, H., Shaw, J., Dhillon, H. (2023, October 8-10) An evaluation of brain tumour information resources: Current state and next steps. [Conference Abstract]. 15th COGNO Annual Scientific Meeting.
21. Chen J, Dhillon H, Shaw J, Faris M, Halkett G, Campbell R (2023). Development of a brief screening tool for brain tumour caregivers' unmet needs. NSW Cancer Conference. Poster presentation.
22. Chen J, (2023). Screening for caregivers’ unmet needs: Development of a brief screening tool. BRAINS EMCR Showcase. Oral presentation.
23. Chen J et al. Determining items for a brief screening tool for brain tumour caregivers’ unmet needs. [Conference Abstract]. 15th COGNO Annual Scientific Meeting, Oct 8-10, 2023, Sydney, Australia.
24. Chen J, Dhillon H, Shaw J, Halkett G, Campbell R (2023). Determining items for a brief screening tool for brain tumour caregivers' unmet needs. COGNO 2023 ASM. Oral presentation.
25. Faris et al. (2023). Creating a visually accessible online patient portal. BRAINS EMCR Showcase. Oral presentation.
26. Faris, M., Dhillon, H., He., S., Carlick, T., Chen, H., Banks, H., Jeon, M., Campbell, R., Chan, R., Halkett, G., Legge, D., Leonard, R., Miller, A., Ownsworth, T., Pike, K., Shaw, J. Creating a visually accessible online portal for people with brain tumour: Preliminary findings. [Poster Presentation]. Poster presentation at the 15th Cooperative Trials Group for Neuro-oncology (COGNO) Annual Scientific Meeting, Oct 8-10, 2023.
27. Halkett G et al (2023). An exploration of the psycho-oncological and psychosocial challenges, losses, and grief in the context of intermediate grade glioma. BRAINS EMCR Showcase. Oral presentation.
28. Haydon H, et al. (2023). Caring for the Carer Online Intervention. BRAINS EMCR Showcase. Oral presentation.
29. Legge, D. et al. (2023). The social process of renegotiating identity with low grade glioma. BRAINS EMCR Showcase. Oral presentation.
30. Jeon M, et al. (2023). Identifying patient needs and dealing with uncertainty. BTAA Education Day Symposium. Oral presentation.
31. Jeon M, et al. (2023). Improving care coordination for people with primary brain tumour and their families. BRAINS EMCR Showcase. Oral presentation.
32. Jeon M, et al. (2023). Theme 2 Care Coordination: progress and plans. Australian Brain Tumour Collaborative 6th Meeting. Oral presentation.
33. Jeon, M., Shaw, J., He, S., Banks, H., Carlick, T., Faris, M., Campbell, R., Kelly, B., Koh, E., Halkett, G., Legge, D., Ownsworth., T., Chan., R., Pinkham, M., Sansom-Daley, U., Dhillon, H. (2023, October 8-10) Exploring approaches to neuro-oncology care coordination in Australia: A scoping review. [Poster Presentation]. 15th COGNO Annual Scientific Meeting.
34. Lion, Pike, Dhillon, Koh, Pinkham, Ownsworth for the BRAINS Program Investigators. Benefits and challenges of accessing psychosocial support for people with brain tumour and their family members: a qualitative inquiry of healthcare professionals’ perspectives. [Conference Datablitz Abstract] ASSBI (Australasian Society for the Study of Brain Impairment) 2023 Conference - 'Moving Forward Together', Darwin (& virtual), NT, Australia, May 4-6, 2023.
35. Lion K, et al. (2023). Benefits and challenges of accessing long-term psychosocial support for people with brain tumor and their family members: Perspectives of Australian Healthcare professionals. BRAINS EMCR Showcase. Oral presentation.
36. McDougall, E. et al (2023). Personality and behaviour changes in adults with brain tumours: what interventions can best support patients and their carers? BRAINS EMCR Showcase, Oral Presentation.
37. Piggott, E et al. (2023). Participant Experiences of the LaTCH Program for Brain Tumour Survivors: A Preliminary Qualitative Analysis. COGNO Annual Scientific Meeting, Sydney, NSW Oct 8-10, 2023.
38. Sansom-Daly, U.M., Buster, J., Hetherington, K., and Jessop, S. (2023). Maximising quality of life in young people living with – and beyond – brain cancers. [Oral presentation] Children’s Cancer Institute Australia Neuro-Oncology Symposium, 1st June, 2023: Coogee, Sydney, Australia.
39. Sansom-Daly, U.M., Evans, H.E., Dumlao, G., Buster, J., Patterson, P., Beattie, A., Cohn, R.J., Wakefield, C.E. (2023). Online peer support for adolescent and young adult cancer survivors during, and beyond, the pandemic: Implementing Recapture Life in community settings. [Poster presentation] Clinical Oncology Society of Australia (COSA) Survivorship Conference, 9-10 March, 2023; Adelaide, South Australia.
40. Virtue-Griffiths S, et al. (2023). Improving cognitive care for individuals with brain cancer. BRAINS EMCR Showcase. Oral presentation.
41. Virtue-Griffiths S. Recruitment and baseline characteristics of participants enrolled in the RCT of LaTCH for Brain Tumour. COGNO Annual Scientific Meeting, Sydney, NSW Oct 8-10, 2023.
2024
42. Jeon M, Shaw J, Banks H, Legge DM, He S, Carlick T, Koh E-S, Halkett G, Kelly B, Pinkham MB, Ownsworth T, Chan RJ, Dhillon H. (2024, Oct 17-20) Coordination of care in the context of primary brain tumours: healthcare professionals’ exploration of the unspoken impact and clinical implications. [Oral presentation]. The 19th Meeting of the European Association of Neuro-Oncology (EANO). Glasgow, UK
43. Pike, K (2024). Participant Experiences of the LaTCH Program for Brain Tumour Survivors: A Preliminary Qualitative Analysis. MASCC Neurological Complications Group. Webinar on Neurological Complications of Cancer Related Cognitive Impairment. May 23rd, 2024.