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Dr Amy Waller

Research Fellow

School of Medicine and Public Health

A focus on end of life care

Public health researcher Dr Amy Waller works with local clinicians and patients to strategies to improve end of life care for people right around the globe.

Following her Bachelors degree in Psychology, Amy began working with the team at UON’s Centre for Health Research and Psycho-oncology (CHeRP, the Behavioural Research Unit of the Cancer Council NSW), with a focus on improving end-of-life care for people with cancer.

“Palliative Care Australia had released standards and guidelines suggesting they needed to improve the way people diagnosed with cancer were accessing palliative care.

“A lot of people who would have benefited were getting referred too late, and some were not getting referred at all.”

The team wanted to find a way to integrate assessment of all aspects of patients’ quality of life into routine care.

“We were looking at ways to identify people who had unmet needs in the area of symptom management, but also information needs, social needs and financial and legal aid.”

Amy had been working on the project for a year when she was offered the opportunity to integrate her work into a Behavioural Science PhD.

“I progressed with that program to the end point, where we actually implemented the resources and evaluated their effectiveness in oncology and palliative care services in the Hunter and Sydney region.

“From there the resources were disseminated across Australia.

“We still get requests from people to use the screening tool in different services. It’s been adapted to heart failure and there's also a group in the UK who have done some work in interstitial lung disease.”

Screening for Distress: an international opportunity

In 2010, Amy was awarded an international Post-Doctoral Fellowship with the University of Calgary, where she worked for two years on the Screening for Distress project, another national program designed to optimise care and services for people with cancer.

“We were working towards the idea of regularly assessing patient needs in the clinic and making sure their needs are being met by the right services at the right time.”

Facilitating talk around end of life care

Upon her return to Newcastle, Amy joined the University’s Priority Research Centre for Health Behaviour, where she worked alongside Laureate Professor Rob Sanson-Fisher in the continuation of her work in improvements of care for people with cancer facing the end of their life.

“We were focused on ways of facilitating appropriate end of life discussions – how can we get patients, families and health care providers to actually talk about these issues?”

Amy’s areas of interest diversified, as she began investigating these issues in older people, particularly those with progressive chronic diseases.

“There's sometimes hesitancy in talking about death and you do have some people who get uncomfortable and prefer not to talk about it.

“The vast majority of people tell us that they want their family involved in the decisions around their end of life care, which is great - if the family knows what the patient wants.

“The problem is people aren't always having these discussions.

“They may want to talk about it but they don't know how to bring it up. A lot of our work is providing information and some guidance to patients and families about how they can have these conversations.”

Educating health care providers, implementing change

Research has demonstrated that starting these discussions in a timely manner – rather than delaying them – leads to a less stressful and better informed experience.

“When these discussions only happen right at the end, and snap decisions have to be made without properly understanding the consequences, it can be traumatic.”

One key way to facilitate and encourage this ‘acceptance phase’ is to educate clinicians about best practice.

“We talk to doctors and nurses who have been treating patients for 30 years and they still say it’s the hardest conversation they'll ever have.

“So we’re looking at how we can best educate and implement ways to help health care professionals to have these conversations with patients and families.

“There needs to be consistency in how that happens, so that they feel confident and capable.”

Another means for intervention is via community aged care services.

“A number of older people in the community are already clients of these services.

“We’re working with providers to develop a program where they can go in and talk to their clients about these matters.

“Those discussions would happen in an ongoing manner, so plans get revisited every 6-12 months - sometimes people’s wants and needs change with time.

“We can then look at how that impacts on whether they get the care that they want and whether it improves their overall quality of life.”

Planting the seed

In 2015, Amy’s research attracted the prestigious Australian Research Council Discovery Early Career Research Award, enabling her to focus on the end of life care given to older people in the hospital environment.

“Around 52 per cent of Australians will die in hospital.

“We’re asking what the gaps are in the care that needs to be provided and what we can do to improve it.”

Amy and her team are visiting patients in hospital to conduct interviews around their awareness of care plans and whether they have engaged in end of life discussions with their families or clinicians. They’ll then use the data to develop new end of life care strategies.

“We’re just planting the seed and giving people the opportunity to have those discussions if they want to.

“We making sure that there's a bit of awareness in the community about this issue - so that when people come into hospital care, they're not trying to have the conversation at the last minute when they're already severely unwell.”

A focus on end of life care

Public health researcher Dr Amy Waller works with local clinicians and patients to strategies to improve end of life care for people right around the globe

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Career Summary

Biography

Dr Amy Waller is a Research Fellow and Investigator in the Priority Research Centre for Health Behaviour (PRCHB) at the University of Newcastle. She completed her PhD in Behavioural Science in Medicine in 2010. She was employed as a Post-Doctoral Research Fellow with the University of Calgary/Tom Baker Cancer Centre in Calgary, Canada between 2010 and 2012. She began working with the PRCHB in 2012. Her research focuses on behavioural aspects of health with special interests in end of life issues, oncology, dementia and health services research.  

Research Expertise
Dr Waller has contributed to a range of research projects tackling clinically relevant issues in end of life care and chronic disease. The most notable of these are: (1) the development and testing of practice guidelines and rigorous measures to assess palliative care needs of people with advanced progressive diseases and their families; (2) large-scale studies describing the natural history of distress and the efficacy of screening programs in newly diagnosed cancer patients; and (3) developing a framework for establishing research priorities and applying this to evidence-practice gaps in cancer control.   

Dr Waller currently leads a program of work examining the quality of end of life care delivered to older, chronically and terminally ill populations across community and health care settings. She is also involved in the Australian Community Of practice in Research in Dementia (ACcORD), contributing to studies examining the perceived barriers and enablers to the delivery of optimal dementia care and capacity assessment from the perspective of general practitioners, nurses and geriatricians. Dr Waller is part of teams testing the effectiveness of self-management programs for people with dementia and stroke and their informal caregivers.

Dr Waller has published 60 peer-reviewed articles, 3 peer-reviewed book chapters and 4 commissioned reports. These papers have been published in high ranking journals for the field such as Journal of Clinical Oncology, Journal National Comprehensive Cancer Network and British Journal of Cancer. She has presented her research  over 30 times at national and international conferences. Dr Waller has attracted over $3.5 million in competitive scholarship and research funding including an NHMRC-Project Grant (CIB, 2017), NHMRC Partnership Grant (CIB, 2016); NHMRC project grant (CIF, 2015); and an ARC DECRA (2015). She has also been a CI on numerous competitive internal grants. Dr Waller is currently co-supervising five doctoral candidates.  

Collaborations
Current research collaborations include organisations such as The Cancer Council NSW, The Stroke Foundation, Hunter Stroke Service and Australian Community Of practice in Research in Dementia. Dr Waller is collaborating on studies examining: medico-legal aspects of end of life care and advance care planning with Profs Ben White and Lindy Wilmott (QUT), Prof Kichu Nair, A/Prof Michael Boyle and Drs Carolyn Hullick and Irosh Fernando (HNELHD); nurses views of end of life care quality with Profs Sally Chan (UoN), Profs Carmen Chan and Meryk Chow (Hong Kong) and Profs Kim and Sook Kang (South Korea); efficacy of a web-based program for dementia populations with Profs Xavier Girones and Ulisses Cortes (Spain); and psychosocial cancer care with Profs Barry Bultz and Linda Carlson (Canada).



Qualifications

  • PhD (Behavioural Science), University of Newcastle
  • Bachelor of Arts (Psychology) Honours, University of Newcastle

Keywords

  • behavioural research
  • cancer
  • dementia
  • end of life
  • health services

Fields of Research

Code Description Percentage
111799 Public Health and Health Services not elsewhere classified 50
111299 Oncology and Carcinogenesis not elsewhere classified 20
110308 Geriatrics and Gerontology 30

Professional Experience

UON Appointment

Title Organisation / Department
Research Fellow University of Newcastle
School of Medicine and Public Health
Australia
Research Fellow Priority Research Centre (PRC) for Healthy Lungs | The University of Newcastle
School of Medicine and Public Health
Australia
Research Fellow University of Newcastle
School of Medicine and Public Health
Australia

Academic appointment

Dates Title Organisation / Department
1/06/2015 - 31/05/2018 Australian Research Council DECRA Fellow Priority Research Centre for Health Behaviour (CHB)
Faculty of Health and Medicine
Australia
1/09/2010 - 1/08/2012 Post-doctoral Research Fellow Department of Psychosocial Resources, Tom Baker Cancer Centre/University of Calgary
Canada
1/01/2010 -  Membership - International Psycho-oncology Society (IPOS) International Psycho-oncology Society (IPOS)
Australia
1/01/2008 -  Membership - Australian Psycho-oncology Co-operative Research Group (PoCoG) Australian Psycho-oncology Co-operative Research Group (PoCoG)
Australia

Membership

Dates Title Organisation / Department
1/10/2014 - 1/01/2017 Member Hunter Cancer Research Alliance Implementation Committee
Australia

Awards

Recipient

Year Award
2011 Post-doctoral Trainee Excellence Award
Unknown

Research Award

Year Award
2009 Student Award
Unknown
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Publications

For publications that are currently unpublished or in-press, details are shown in italics.


Chapter (3 outputs)

Year Citation Altmetrics Link
2018 Waller A, Nair BKR, 'Advance care planning', Geriatric Medicine: A Problem-Based Approach, Springer, Singapore 295-306 (2018) [B1]
DOI 10.1007/978-981-10-3253-0_20
Co-authors Kichu Nair
2015 Girgis A, Waller AE, 'Palliative Care Needs Assessment Tool', The Oxford Textbook of Palliative Medicine, Oxford University Press, Oxford, UK 363-375 (2015) [B1]
2015 Waller AE, Boyes A, Carey M, Sanson-Fisher R, 'Screening and Assessment for Unmet Needs', Psycho-Oncology, Oxford University Press, New York 369-377 (2015) [B2]
DOI 10.1093/med/9780199363315.003.0046
Co-authors Mariko Carey, Allison Boyes, Rob Sanson-Fisher

Journal article (64 outputs)

Year Citation Altmetrics Link
2018 Waller A, Hall A, Sanson-Fisher R, Zdenkowski N, Douglas C, Walsh J, 'Do medical oncology patients and their support persons agree about end-of-life issues?', Internal Medicine Journal, 48 60-66 (2018) [C1]

© 2017 Royal Australasian College of Physicians. Background: The perceptions of those called on to make decisions on behalf of patients who lack capacity at the end of life must a... [more]

© 2017 Royal Australasian College of Physicians. Background: The perceptions of those called on to make decisions on behalf of patients who lack capacity at the end of life must accurately reflect patient preferences. Aims: To establish the extent to which the views of medical oncology outpatients are understood by their support persons, specifically with regards to (i) preferred type and location of end-of-life care, (ii) preferred level of involvement in end-of-life decision-making and (iii) whether the patient has completed an advance care plan or appointed an enduring guardian. Methods: Adults with a confirmed cancer diagnosis and their nominated support persons were approached between September 2015 and January 2016 in the waiting room of an Australian tertiary referral clinic. Consenting participants completed a pen-and-paper survey. Nominated support persons answered the same questions from the patient¿s perspective. Results: In total, 208 participants (39% of eligible dyads) participated. Observed agreement across the five outcomes ranged from 54% to 84%. Kappa values for concordance between patient¿support person responses were fair to moderate (0.24¿0.47) for enduring guardian, decision-making, advance care plan and care location outcomes. A slight level of concordance (k = 0.15; 95% confidence interval: -0.02, 0.32) was found for the type of care outcome. Conclusion: Relying on support persons¿ views does not guarantee that patients¿ actual preferences will be followed. Strategies that make patient preferences known to healthcare providers and support persons while they still have the capacity to do so is a critical next step in improving quality cancer care.

DOI 10.1111/imj.13626
Citations Scopus - 2Web of Science - 1
Co-authors Rob Sanson-Fisher, Charles Douglas, Nick Zdenkowski
2018 Girgis S, Smith A, Lambert S, Waller A, Girgis A, '¿It sort of hit me like a baseball bat between the eyes¿: a qualitative study of the psychosocial experiences of mesothelioma patients and carers', Supportive Care in Cancer, (2018)

© 2018, Springer-Verlag GmbH Germany, part of Springer Nature. Purpose: Mesothelioma is an insidious disease with a generally poor prognosis even after invasive treatment. This qu... [more]

© 2018, Springer-Verlag GmbH Germany, part of Springer Nature. Purpose: Mesothelioma is an insidious disease with a generally poor prognosis even after invasive treatment. This qualitative study aimed to explore the experiences of patients suffering from mesothelioma and their carers and their perceptions of how their needs may be addressed. Methods: Eligible patients and carers were identified by a lung cancer care coordinator at each participating site, and invited to participate in one-on-one semi-structured telephone interviews (n = 5 patients, n = 3 carers), or in one of two focus groups (n = 3 patients, n = 3 carers). Discussions focusing on participants¿ experiences relating to physical, psychological, social, information and carer domains were audio-recorded, transcribed verbatim and thematically analysed. Results: The five major themes identified were (1) time of diagnosis is a particularly difficult period; (2) the timeliness, accuracy and balance of mesothelioma information is problematic; (3) coping strategies ranged from antagonism to acceptance; (4) the emotional and physical load of caring for the patient is significant and (5) carers need one-on-one support. Conclusion: Mesothelioma patients and their carers face significant challenges, particularly around the time of diagnosis and in the physical, psychological and social/practical domains. There is a clear need for additional information, delivered in a timely and psychologically sensitive manner, as well as for practical and emotional support. Quantitative research may shed greater light on the prevalence and severity of challenges and needs reported by participants, and determine the usefulness of resources such as case workers and dyadic coping interventions in addressing these.

DOI 10.1007/s00520-018-4357-0
2018 Herrmann A, Sanson-Fisher R, Hall A, Wall L, Zdenkowski N, Waller A, 'Support persons' preferences for the type of consultation and the format of information provided when making a cancer treatment decision', BMC Research Notes, 11 1-6 (2018) [C1]
DOI 10.1186/s13104-018-3552-x
Citations Scopus - 1
Co-authors Nick Zdenkowski, Rob Sanson-Fisher
2018 Waller A, Douglas C, Sanson-Fisher R, Zdenkowski N, Pearce A, Evans T, Walsh J, 'Dances with denial: Have medical oncology outpatients conveyed their end-of-life wishes and do they want to?', JNCCN Journal of the National Comprehensive Cancer Network, 16 498-505 (2018) [C1]

© JNCCN-Journal of the National Comprehensive Cancer Network. Objectives: This study surveyed a sample of medical oncology outpatients to determine (1) the proportion who have alr... [more]

© JNCCN-Journal of the National Comprehensive Cancer Network. Objectives: This study surveyed a sample of medical oncology outpatients to determine (1) the proportion who have already discussed and documented their end-of-life (EOL) wishes; (2) when and with whom they would prefer to convey their EOL wishes; (3) the EOL issues they would want to discuss; and (4) the association between perceived cancer status and advance care planning (ACP) participation. Methods: Adult medical oncology outpatients were approached in the waiting room of an Australian tertiary treatment center. Consenting participants completed a pen-and-paper survey assessing participation in ACP, preferences for conveying EOL wishes, timing of EOL discussions, and EOL issues they want to be asked about. Results: A total of 203 patients returned the survey (47% of eligible). EOL discussions occurred more frequently with support persons (47%) than with doctors (7%). Only 14% had recorded their wishes, and 45% had appointed an enduring guardian. Those who perceived their cancer as incurable were more likely to have participated in ACP. If facing EOL, patients indicated that they would want family involved in discussions (85%), to be able to write down EOL wishes (82%), and to appoint enduring guardians (91%). Many (45%) preferred the first discussion to happen when their disease became incurable. Slightly less than one-third thought discussions regarding EOL should be patient-initiated. Most agreed doctors should ask about preferred decision-making involvement (92%), how important it is that pain is managed well (95%), and how important it is to remain conscious (82%). Fewer (55%) wanted to be asked about the importance of care extending life. Conclusions: Many patients would like to have discussions regarding EOL care with their doctor and involve their support persons in this process. Only a small percentage of respondents had discussed EOL care with their doctors, recorded their wishes, or appointed an enduring guardian. The first step requires clinicians to ask whether an individual patient wishes to discuss EOL issues, in what format, and at what level of detail.

DOI 10.6004/jnccn.2017.7054
Co-authors Nick Zdenkowski, Charles Douglas, Rob Sanson-Fisher
2018 Waller A, Bryant J, Cameron E, Galal M, Symonds I, Sanson-Fisher R, 'Screening for recommended antenatal risk factors: How long does it take?', Women and Birth, (2018)

© 2018 Australian College of Midwives. Background: Detection and management of antenatal risk factors is critical for quality care. Aims: To determine (1) women's views about... [more]

© 2018 Australian College of Midwives. Background: Detection and management of antenatal risk factors is critical for quality care. Aims: To determine (1) women's views about when they should be asked about antenatal health factors as recommended in the Australian antenatal guidelines; and (2) the time required to provide recommended care using a clinical scenario. Methods: In Phase 1, pregnant women attending an outpatient obstetrics clinic at a public hospital were surveyed about preferred screening for antenatal risk factors during visit(s). In Phase 2, a hypothetical clinical scenario of a woman attending her first antenatal visit with a practicing midwife was video-recorded to extrapolate the time taken to ask about and offer assistance to manage clinical, screening and lifestyle risk factors. Findings: Most women (96%) perceived they should be asked about each of the risk factors at least once (i.e. at first visit). Total time taken to ask about all risk factors was 52. min. More time was spent discussing clinical (11. min) than lifestyle factors (4. min). Adjusting for the estimated prevalence of each risk factor, the time taken to offer assistance was 8. min per woman. Average time required for detecting and offering assistance to manage risk factors is 60. min per average risk woman. Conclusion: Women are willing to be asked about risk factors; however this process is time-consuming. Strategies to streamline visits and prioritise recommendations so time-efficient yet comprehensive care can be delivered are needed, particularly when factors require monitoring over time and for those who may be 'at-risk' for multiple factors.

DOI 10.1016/j.wombi.2018.01.005
Co-authors Rob Sanson-Fisher, Jamie Bryant
2018 Waller A, Sanson-Fisher R, Zdenkowski N, Douglas C, Hall A, Walsh J, 'The right place at the right time: Medical oncology outpatients' perceptions of location of end-of-life care', JNCCN Journal of the National Comprehensive Cancer Network, 16 35-41 (2018) [C1]

© 2018 JNCCN-Journal of the National Comprehensive Cancer Network. Background: Helping people achieve their preferred location of care is an important indicator of quality end-of-... [more]

© 2018 JNCCN-Journal of the National Comprehensive Cancer Network. Background: Helping people achieve their preferred location of care is an important indicator of quality end-of-life (EOL) care. Using a sample of Australian medical oncology outpatients, this study examined (1) their preferred location of EOL care; (2) their perceived benefits and worries of receiving care in that location; (3) the percentage who had discussed preferences with their doctor and/or support person; and (4) whether they wanted their doctor to ask them where they wanted to die. Methods: Adults with a confirmed diagnosis of cancer were approached between September 2015 and January 2016 in the waiting room of an Australian oncology outpatient clinic. Consenting participants completed a home-based pen-and-paper survey indicating preferred location of care, perceived benefits and worries of that location, whether they had discussed preferences with their doctors, and whether they were willing to be asked about their preferences. Results: A total of 203 patients returned the survey (47% of those eligible). Less than half preferred to be cared for at home (47%), 34% preferred a hospice/palliative care unit, and 19% preferred the hospital. Common benefits and worries associated with locations included perceived burden on others, familiarity of environment, availability of expert medical care, symptom management, and likelihood of having wishes respected. More patients had discussed preferences with their support persons (41%) than doctors (7%). Most wanted a doctor to ask them about preferred location of care (87%) and thought it was important to die in the location of their choice (93%). Conclusions: Patients were willing to have clinicians to ask them where they wanted to die, although few had discussed their preferences with doctors. Although home was the most preferred location for many patients, the overall variation suggests that clinicians should adopt a systematic approach to eliciting patient preferences.

DOI 10.6004/jnccn.2017.7025
Citations Scopus - 2Web of Science - 1
Co-authors Nick Zdenkowski, Charles Douglas, Rob Sanson-Fisher
2018 Shepherd J, Waller A, Sanson-Fisher R, Clark K, Ball J, 'Knowledge of, and participation in, advance care planning: A cross-sectional study of acute and critical care nurses¿ perceptions', International Journal of Nursing Studies, 86 74-81 (2018) [C1]

© 2018 Elsevier Ltd Background: Nurses have a core role in facilitating discussions and enacting decisions about end-of-life issues for patients in hospitals. Nurses¿ own knowledg... [more]

© 2018 Elsevier Ltd Background: Nurses have a core role in facilitating discussions and enacting decisions about end-of-life issues for patients in hospitals. Nurses¿ own knowledge and attitudes may influence whether they engage in meaningful end-of-life conversations with patients. Aims: To determine in a sample of nurses working in acute and critical care hospital wards: 1) their knowledge of advance care planning, including the authority of substitute decision-makers and legal validity of advance directives; 2) their own participation in advance care planning decision-making practices; and 3) associations between nurses¿ socio-demographic characteristics; clinical expertise; and knowledge and behaviour in relation to advance care planning practices. Design: Questionnaire-based, cross-sectional study. Setting and participants: The study was conducted with 181 registered and enrolled nurses employed in acute and critical care wards of three metropolitan hospitals in Australia. Results: Nurses were least knowledgeable about items relating to the authority of medical (56%) and financial (42%) substitute decision-makers. Few nurses had prepared advance directives (10%) or appointed medical (23%) or financial (27%) decision-makers, when compared to discussing end-of-life wishes (53%) or organ donation (75%). Overall, 15% of nurses had not engaged in any advance care planning practices. Nurses who had cared for 11¿30 dying patients in the last six months were more likely to have an increased knowledge score. Older nurses were more likely to participate in a greater number of advance care planning practices and an increase in shifts worked per week led to a significant decrease in nurses¿ participation. Conclusion: Nurses have a key role in providing advice and engaging dying patients and their families in advance care planning practices. Nurses¿ own knowledge and rates of participation are low. Further education and support is needed to ensure that nurses have an accurate knowledge of advance care planning practices, including how, when and with whom wishes should be discussed and can be enacted.

DOI 10.1016/j.ijnurstu.2018.06.005
Co-authors Rob Sanson-Fisher
2018 Sanson-Fisher R, Hobden B, Waller A, Dodd N, Boyd L, 'Methodological quality of teaching communication skills to undergraduate medical students: a mapping review', BMC MEDICAL EDUCATION, 18 (2018) [C1]
DOI 10.1186/s12909-018-1265-4
Co-authors Bree Hobden, Natalie Dodd, Rob Sanson-Fisher
2018 Waller A, Sanson-Fisher R, Brown SD, Wall L, Walsh J, 'Quality versus quantity in end-of-life choices of cancer patients and support persons: a discrete choice experiment', Supportive Care in Cancer, 26 3593-3599 (2018) [C1]

© 2018, Springer-Verlag GmbH Germany, part of Springer Nature. Objectives: To explore in a sample of medical oncology outpatients and their nominated support persons (SPs): (1) th... [more]

© 2018, Springer-Verlag GmbH Germany, part of Springer Nature. Objectives: To explore in a sample of medical oncology outpatients and their nominated support persons (SPs): (1) the relative influence of pain, consciousness and life extension on end-of-life choices using a discrete choice experiment (DCE); (2) the extent to which SPs can predict the choices of index patients and (3) whether having a previous end-of-life discussion was associated with dyad agreement. Methods: Adult medical oncology patients and their SPs were approached for consent to complete a survey containing a DCE. Participants chose between three unlabelled care scenarios characterised by three attributes: pain (mild, moderate or severe), consciousness (some, half or most of time) and extension of life (1, 2 or 3¿weeks). Respondents selected (1) most-preferred and (2) least-preferred scenarios within each question. SPs answered the same questions but from patient¿s perspective. Results: A total of 110 patients and 64 SPs responded overall (42 matched patient-SP dyads). For patients, pain was the most influential predictor of most- and least-preferred scenarios (z = 12.5 and z = 12.9). For SPs, pain was the only significant predictor of most and least-preferred scenarios (z = 9.7 and z = 11.5). Dyad agreement was greater for choices about least- (69%) compared to most-preferred scenarios (55%). Agreement was slightly higher for dyads reporting a previous EOL discussion (68 versus 48%; p = 0.065). Conclusion: Patients and SPs place significant value on avoiding severe pain when making end-of-life choices, over and above level of consciousness or life extension. People¿s views about end-of-life scenarios they most as well as least prefer should be sought.

DOI 10.1007/s00520-018-4226-x
Co-authors Scott Brown, Rob Sanson-Fisher
2018 Herrmann A, Sanson-Fisher R, Hall A, Wall L, Zdenkowski N, Waller A, 'A discrete choice experiment to assess cancer patients¿ preferences for when and how to make treatment decisions', Supportive Care in Cancer, 26 1215-1220 (2018) [C1]

© 2017, Springer-Verlag GmbH Germany. Purpose: Cancer patients can be overwhelmed when being confronted with their diagnosis and treatment options. Such information is often provi... [more]

© 2017, Springer-Verlag GmbH Germany. Purpose: Cancer patients can be overwhelmed when being confronted with their diagnosis and treatment options. Such information is often provided during one consultation between the patient and treating clinician. In order to achieve optimal cancer care, there may be justification for alternative consultation styles. We assessed, in a sample of adult medical oncology patients, their preferences for (i) attending one 40-min consultation or two 20-min consultations and (ii) receiving written only or both written and online information, when making a cancer treatment decision. Methods: This was a cross-sectional survey using a discrete choice design of 159 adult medical oncology patients presenting for their second or subsequent outpatient consultation. Participants were presented with a set of hypothetical scenarios and asked to indicate their most and least preferred scenario. The scenarios contained a caveat explaining that there would be no difference between the available treatment options in terms of when treatment would be initiated and the impact it would have on patients¿ life expectancy. Results: One hundred forty-seven patients completed the DCE. Of these, 70% (n¿=¿103) preferred being provided with written and online information rather than just written information. This preference was statistically significant (p¿<¿0.01). Fifty-nine percent (n¿=¿86) of patients preferred two 20-min consultations over one 40-min consultation when making a treatment decision. Significantly, more patients preferred two shorter consultations rather than one longer consultation when this was combined with written and online information (p¿<¿0.01). Conclusion: When making a cancer treatment decision, clinicians should consider offering patients written and online information, combined with two shorter consultations.

DOI 10.1007/s00520-017-3944-9
Citations Scopus - 1
Co-authors Nick Zdenkowski, Rob Sanson-Fisher
2018 Waller A, Sanson-Fisher R, Ries N, Bryant J, 'Increasing advance personal planning: The need for action at the community level', BMC Public Health, 18 (2018) [C1]

© 2018 The Author(s). Background: Advance personal planning is the process by which people consider, document and communicate their preferences for personal, financial and health ... [more]

© 2018 The Author(s). Background: Advance personal planning is the process by which people consider, document and communicate their preferences for personal, financial and health matters in case they lose the ability to make decisions or express their wishes in the future. Discussion: Advance personal planning is most often undertaken by individuals who are seriously ill, often in the context of a medical crisis and/or at the time of admission to hospital. However, the clinical utility and legal validity of the planning process may be compromised in these circumstances. Patients may lack sufficient capacity to meaningfully engage in advance personal planning; there may be insufficient time to adequately reflect on and discuss wishes with key others; and there may also be limited opportunity for inter-professional input and collaboration in the process. Here, we propose an agenda for research to advance the science of advance personal planning by promoting a 'whole community' approach. Adoption of advance personal planning at a community level may be achieved using a variety of strategies including public media campaigns, intervening with professionals across a range of health care and legal settings, and mobilising support from influential groups and local government. One potentially promising method for encouraging earlier adoption of advance personal planning among a broader population involves a community action approach, whereby multiple evidence-based strategies are integrated across multiple access points. Community action involves calling on community members, professionals, community and/or government organisations to work collaboratively to design and systematically implement intervention strategies with the aim of bringing about desired behaviour change. An example of a community action trial to improving uptake and quality of advance personal planning is described. Conclusion: While promising, there is a need for rigorous evidence to demonstrate whether a community action approach is effective in establishing whole community adoption of advance personal planning.

DOI 10.1186/s12889-018-5523-5
Citations Scopus - 1
Co-authors Rob Sanson-Fisher, Nola Ries, Jamie Bryant
2017 Waller A, Dodd N, Tattersall MHN, Nair B, Sanson-Fisher R, 'Improving hospital-based end of life care processes and outcomes: a systematic review of research output, quality and effectiveness', BMC PALLIATIVE CARE, 16 (2017) [C1]
DOI 10.1186/s12904-017-0204-1
Citations Scopus - 6Web of Science - 5
Co-authors Kichu Nair, Natalie Dodd, Rob Sanson-Fisher
2017 Waller A, Dilworth S, Mansfield E, Sanson-Fisher R, 'Computer and telephone delivered interventions to support caregivers of people with dementia: a systematic review of research output and quality', BMC GERIATRICS, 17 (2017) [C1]
DOI 10.1186/s12877-017-0654-6
Citations Scopus - 1Web of Science - 1
Co-authors Rob Sanson-Fisher, Elise Mansfield
2017 Zucca A, Sanson-Fisher R, Waller A, Carey M, Boadle D, 'The first step in ensuring patient-centred quality of care: ask the patient', European Journal of Cancer Care, 26 1-13 (2017) [C1]
DOI 10.1111/ecc.12435
Citations Scopus - 7Web of Science - 5
Co-authors Rob Sanson-Fisher, Alison Zucca, Mariko Carey
2017 Schorr M, Carlson LE, Lau HY, Zhong L, Bultz BD, Waller A, et al., 'Distress levels in patients with oropharyngeal vs. non-oropharyngeal squamous cell carcinomas of the head and neck over 1 year after diagnosis: a retrospective cohort study', SUPPORTIVE CARE IN CANCER, 25 3225-3233 (2017)
DOI 10.1007/s00520-017-3733-5
Citations Scopus - 2Web of Science - 1
2017 Carey M, Boyes AW, Smits R, Bryant J, Waller A, Olver I, 'Access to clinical trials among oncology patients: results of a cross sectional survey.', BMC cancer, 17 (2017) [C1]
DOI 10.1186/s12885-017-3644-3
Citations Scopus - 2Web of Science - 1
Co-authors Jamie Bryant, Mariko Carey, Allison Boyes
2017 Bryant J, Waller A, Cameron E, Hure A, Sanson-Fisher R, 'Diet during pregnancy: Women's knowledge of and adherence to food safety guidelines', Australian and New Zealand Journal of Obstetrics and Gynaecology, 57 315-322 (2017) [C1]

© 2016 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists Background: As a precaution against acquiring food-borne illnesses, guidelines recommend wo... [more]

© 2016 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists Background: As a precaution against acquiring food-borne illnesses, guidelines recommend women avoid some foods during pregnancy. Aims: To examine among women receiving antenatal care: (i) level of knowledge and self-reported adherence to guidelines about foods that should be avoided during pregnancy; and (ii) associated socio-demographic characteristics. Methods: Women attending a public outpatient clinic who were: pregnant or had recently given birth; 18 years or older; able to complete an English language survey with minimal assistance; and had at least one prior antenatal appointment for their current pregnancy, were asked to complete a cross-sectional survey. Results: In total 223 women (64% consent rate) participated. Knowledge of foods to avoid during pregnancy was poor, with 83% of women incorrectly identifying at least one unsafe food as safe to consume. The average knowledge score for foods to avoid during pregnancy was 7.9 (standard deviation = 3.4; median = 9; interquartile range: 6¿11; n = 218) out of a possible score of 12. Having more general practice (GP) visits for antenatal care and fewer tertiary antenatal visits were significantly associated with higher knowledge. Women with a higher number of GP visits and those receiving care in a high-risk clinic were more likely to be adherent to guidelines. Conclusions: The majority of pregnant women have poor knowledge of food avoidance guidelines and continue to consume foods that put them at risk.

DOI 10.1111/ajo.12523
Co-authors Rob Sanson-Fisher, Jamie Bryant, Alexis Hure
2016 Mansfield E, Bryant J, Regan T, Waller A, Boyes A, Sanson-Fisher R, 'Burden and Unmet Needs of Caregivers of Chronic Obstructive Pulmonary Disease Patients: A Systematic Review of the Volume and Focus of Research Output', COPD: Journal of Chronic Obstructive Pulmonary Disease, 13 662-667 (2016) [C1]

© 2016 Taylor &amp; Francis Group, LLC. Caregivers of individuals with chronic obstructive pulmonary disease (COPD) experience significant burden. To develop effective intervent... [more]

© 2016 Taylor & Francis Group, LLC. Caregivers of individuals with chronic obstructive pulmonary disease (COPD) experience significant burden. To develop effective interventions to support this vulnerable group, it is necessary to understand how this burden varies as a function of patient well-being and across the illness trajectory. This systematic review aimed to identify the number and type of data-based publications exploring the burden and unmet needs of caregivers of individuals with COPD. Medline, Embase, PsycINFO and Cochrane databases were searched for studies published between January 2000 and February 2014. Studies were eligible if they were quantitative studies examining unmet needs of, or burden on, adult caregivers of individuals with COPD. Eligible papers were categorised according to (i) type (i.e. descriptive, measurement and intervention studies); (ii) whether they measured associations between patient and caregiver burden and (iii) whether they measured caregiver burden longitudinally. Twenty-seven data-based papers met criteria for inclusion. There was a significant increase in the total number of publications over time. The majority of publications were descriptive studies (n¿=¿25), with one measurement and one intervention study identified. Fourteen descriptive studies measured the relationship between patient or caregiver factors and caregiver burden. Only two studies measured caregiver burden over time. There are a number of gaps in the body of research examining burden and unmet needs of caregivers of individuals with COPD that preclude the development of effective interventions for this population. Greater research effort should be directed towards identifying rigorous measurement tools which more accurately characterise caregiver burden, so that evidence-based interventions can be developed.

DOI 10.3109/15412555.2016.1151488
Citations Scopus - 8Web of Science - 4
Co-authors Allison Boyes, Rob Sanson-Fisher, Elise Mansfield, Jamie Bryant
2016 Waller A, Bryant J, Cameron E, Galal M, Quay J, Sanson-Fisher R, 'Women's perceptions of antenatal care: Are we following guideline recommended care?', BMC Pregnancy and Childbirth, 16 (2016) [C1]
DOI 10.1186/s12884-016-0984-y
Citations Scopus - 1Web of Science - 2
Co-authors Jamie Bryant, Rob Sanson-Fisher
2016 Carey M, Boyes A, Noble N, Waller A, Inder K, 'Validation of the PHQ-2 against the PHQ-9 for detecting depression in a large sample of Australian general practice patients', Australian Journal of Primary Health, 22 262-266 (2016) [C1]

© La Trobe University 2016. There is increasing interest in the use of brief screening tools to improve detection of depression in the primary care setting. The aim of the present... [more]

© La Trobe University 2016. There is increasing interest in the use of brief screening tools to improve detection of depression in the primary care setting. The aim of the present study was to compare the accuracy of the two-item Patient Health Questionnaire (PHQ-2) against the nine-item Patient Health Questionnaire (PHQ-9) for detecting depression among general practice patients. A cross-sectional sample of 3626 adults attending 12 Australian general practices was recruited. Participants completed the PHQ-2 and PHQ-9 via a touchscreen computer. Depression was defined as a PHQ-9 score =10. The area under the curve (AUC), sensitivity, specificity, positive predictive value and negative predictive value were calculated. The PHQ-2 had good overall accuracy relative to the PHQ-9 for discriminating between cases and non-cases of depression, with an AUC of 0.92 (95% confidence interval 0.90-0.93). The PHQ-2 threshold of =3 was the best balance between sensitivity (91%) and specificity (78%) for detecting possible cases of depression. For clinical use, the optimal threshold was =2, with only 2% of possible cases missed.

DOI 10.1071/PY14149
Citations Scopus - 9Web of Science - 9
Co-authors Natasha Noble, Allison Boyes, Kerry Inder, Mariko Carey
2016 Turon H, Waller A, Clinton-McHarg T, Boyes A, Fleming J, Marlton P, et al., 'The Perspectives of Haematological Cancer Patients on Tissue Banking', Oncology and Therapy, 4 91-102 (2016) [C1]
DOI 10.1007/s40487-016-0019-x
Co-authors Allison Boyes, Rob Sanson-Fisher, Tara Clinton-Mcharg
2016 Waller A, Turon H, Mansfield E, Clark K, Hobden B, Sanson-Fisher R, 'Assisting the bereaved: A systematic review of the evidence for grief counselling', Palliative Medicine, 30 132-148 (2016) [C1]

© The Author(s) 2015. Background: Supporting people after bereavement is a priority area for many health services. Investment in bereavement care must be supported by a rigorous e... [more]

© The Author(s) 2015. Background: Supporting people after bereavement is a priority area for many health services. Investment in bereavement care must be supported by a rigorous evidence-base. Aim: To examine the (1) relative proportion of descriptive, measurement and intervention research in grief counselling and (2) quality and effectiveness of intervention studies. Design: Systematic review of studies published in the area of grief counselling. Data sources: MEDLINE, Embase, Cochrane Library and PsycINFO databases were searched for studies published between 2000 and 2013. Eligible papers were categorised into descriptive, measurement, review, commentaries and intervention studies. Intervention studies were assessed against the Cochrane Effective Practice and Organisation of Care methodological criteria, and papers meeting criteria were assessed for quality. The impact of interventions on grief, psychological morbidity and quality of life was examined. Results: A total of 126 data-based papers, including 47 descriptive, 3 measurement and 76 grief counselling intervention studies were included. Only 59% (n = 45) of intervention studies met Effective Practice and Organisation of Care design criteria. Overall, study quality was poor, with the majority of interventions showing a risk of bias in several key areas. The three studies that met all criteria showed mixed effectiveness. Conclusion: Grief counselling interventions require a strong rationale for design, and a systematic approach to development and evaluation. Descriptive research efforts should inform this process, focusing on homogeneity in sample, identification of risk factors for complicated grief and the impact of extraneous factors on intervention effects. Interventions should include comparisons to usual care, as well as replication to confirm positive findings.

DOI 10.1177/0269216315588728
Citations Scopus - 12Web of Science - 10
Co-authors Bree Hobden, Rob Sanson-Fisher, Elise Mansfield
2016 Wolfenden L, Milat AJ, Lecathelinais C, Sanson-Fisher RW, Carey ML, Bryant J, et al., 'What is generated and what is used: A description of public health research output and citation', European Journal of Public Health, 26 523-525 (2016) [C1]

© 2016 The Author. Published by Oxford University Press on behalf of the European Public Health Association. All rights reserved. The aim of this short report was to describe the ... [more]

© 2016 The Author. Published by Oxford University Press on behalf of the European Public Health Association. All rights reserved. The aim of this short report was to describe the output and citation rates of public health. Data-based publications and literature reviews from the year 2008, and their 5-year citation rates were extracted from 10 randomly selected public health journals. In total, 86.2% of publications were descriptive/epidemiological studies, 56.8% used cross-sectional (56.8%) designs and 77.8% were classified as research translation stage 2. Reviews and publications describing randomized controlled trials were the most highly cited, but were infrequently published. Strategies to address the discordance between public health research output and research citation may improve the impact of public health research.

DOI 10.1093/eurpub/ckw047
Citations Scopus - 7Web of Science - 6
Co-authors Serene Yoong, Mariko Carey, Rob Sanson-Fisher, Jamie Bryant, Luke Wolfenden, John Wiggers, Tara Clinton-Mcharg
2016 Nair B, Mansfield E, Waller A, 'A race against time: The dementia epidemic', Archives of Medicine and Health Sciences, 4 127-134 (2016) [C1]
DOI 10.4103/2321-4848.183363
Co-authors Elise Mansfield, Kichu Nair
2016 Zucca A, Sanson-Fisher R, Waller A, Carey M, Boyes AW, Proietto A, 'Does screening for physical and psychosocial symptoms vary between medical oncology treatment centres?', Psycho-Oncology, 25 521-528 (2016) [C1]

Copyright © 2015 John Wiley &amp; Sons, Ltd. Objective Our aim is to examine whether provider screening for physical and emotional symptoms, as reported by medical oncology outp... [more]

Copyright © 2015 John Wiley & Sons, Ltd. Objective Our aim is to examine whether provider screening for physical and emotional symptoms, as reported by medical oncology outpatients, varies across medical oncology treatment centres. Methods A cross-sectional sample of 716 patients attending the outpatient medical oncology department of six public cancer treatment centres across five Australian states participated. Four patient-report survey items explored how often patients were specifically asked by clinical staff at the treatment centre about their (i) emotional distress (anxiety, distress and depression), (ii) pain, (iii) fatigue and (iv) other physical symptoms (e.g. nausea and constipation). Asking at less than half of all appointments was classified as infrequent screening. Results No significant associations were found between treatment centre and symptom screening for emotional distress (p = 0.65), pain (p = 0.21), fatigue (p = 0.95) and other physical symptoms (p = 0.40). The proportion of patients who were regularly screened versus infrequently screened was significantly higher for physical symptoms than emotional symptoms (p < 0.001): 36% infrequently screened for emotional distress (range: 33-45%), 15% infrequently screened for pain (range: 9-21%), 16% infrequently screened for fatigue (range: 15-19%) and 11% infrequently screened for other physical symptoms (range: 5-17%). Conclusions No significant variation in symptom screening was found across treatment centres. While the majority of patients received recommended care, treatment centres must continue to improve symptom screening rates, particularly for emotional distress. However, screening is only the first step and must be accompanied by the offer of help and provision of help to relieve patient suffering.

DOI 10.1002/pon.3948
Citations Scopus - 2Web of Science - 2
Co-authors Mariko Carey, Rob Sanson-Fisher, Allison Boyes, Alison Zucca
2016 Bryant J, Mansfield E, Hall A, Waller A, Boyes A, Jayakody A, et al., 'The psychosocial outcomes of individuals with hematological cancers: Are we doing enough high quality research, and what is it telling us?', Critical Reviews in Oncology/Hematology, 101 21-31 (2016) [C1]

© 2016 Elsevier Ireland Ltd. This systematic review assessed the quantity and quality of research examining the psychosocial outcomes among hematological cancer patients. Studies ... [more]

© 2016 Elsevier Ireland Ltd. This systematic review assessed the quantity and quality of research examining the psychosocial outcomes among hematological cancer patients. Studies were categorised as either measurement, descriptive or intervention. Intervention studies were further assessed according to Effective Practice and Organisation of Care (EPOC) methodological criteria. A total of 261 eligible papers were identified. The number of publications increased by 8.8% each year (95% CI = 7.5-10.2%; p < 0.0001). The majority of studies were descriptive (n = 232; 89%), with few measurement (n = 8; 3%) and intervention (n = 21; 8%) studies identified. Ten intervention studies met EPOC design criteria, however only two interventions, one targeted at individuals with Hodgkin's or Non-Hodgkin's lymphoma and one targeted at individuals with leukaemia, lymphoma or myelomatosis were successful in improving patients' psychosocial outcomes. Despite an increasing volume of research examining psychosocial outcomes of hematological cancer patients, there is a need for robust measurement and methodologically rigorous intervention research in this area.

DOI 10.1016/j.critrevonc.2016.02.016
Co-authors Rob Sanson-Fisher, Jamie Bryant, Natalie Dodd, Elise Mansfield, Allison Boyes
2016 Bryant J, Mansfield E, Boyes AW, Waller A, Sanson-Fisher R, Regan T, 'Involvement of informal caregivers in supporting patients with COPD: A review of intervention studies', International Journal of COPD, 11 1587-1596 (2016) [C1]

© 2016 Bryant et al. Caregivers of individuals with COPD have a key role in maintaining patient adherence and optimizing patient function. However, no systematic review has examin... [more]

© 2016 Bryant et al. Caregivers of individuals with COPD have a key role in maintaining patient adherence and optimizing patient function. However, no systematic review has examined how the caregiver role has been operationalized in interventions to improve outcomes of individuals with COPD or the quality or effectiveness of these interventions. The aims of this review were to 1) determine whether caregivers have been involved as part of interventions to improve outcomes of individuals with COPD; 2) determine the risk of bias within included intervention studies; and 3) examine the effectiveness of interventions that have involved caregivers in improving outcomes of individuals with COPD. The electronic databases of Medline, Embase, PsycINFO, and Cochrane Library were searched from January 2000 to November 2015. Experimental studies testing interventions that involved a caregiver to improve COPD patient outcomes were eligible. Nine studies involving caregivers met inclusion criteria. No studies reported any intervention components targeted solely at caregivers, with most instead including caregivers in dyadic or group education sessions about COPD delivered by health care professionals. The risk of bias identified in included studies was mixed. Seven of the nine studies were effective in improving a broad range of outcomes. These findings highlight that there is an urgent need for methodologically rigorous interventions to examine the effectiveness of strategies to assist caregivers to provide direct care, encourage adherence to health care provider recommendations, act as a health care advocate, and provide emotional and psychosocial support to individuals with COPD.

DOI 10.2147/COPD.S107571
Citations Scopus - 8Web of Science - 8
Co-authors Allison Boyes, Jamie Bryant, Rob Sanson-Fisher, Elise Mansfield
2015 Boyes AW, Clinton-Mcharg T, Waller AE, Steele A, D'Este CA, Sanson-Fisher RW, 'Prevalence and correlates of the unmet supportive care needs of individuals diagnosed with a haematological malignancy', Acta Oncologica, 54 507-514 (2015) [C1]

© 2014 Informa Healthcare. Background. Information about the unmet supportive care needs of haematological cancer patients is needed for service planning and to inform clinical pr... [more]

© 2014 Informa Healthcare. Background. Information about the unmet supportive care needs of haematological cancer patients is needed for service planning and to inform clinical practice. This study described the prevalence of, and factors associated with, unmet supportive care needs among haematological cancer patients. Material and methods. A total of 380 adults diagnosed with haematological cancer were recruited from the outpatient department at three comprehensive cancer treatment centres in Australia. Of these, 311 completed a self-report questionnaire. Unmet needs were assessed using the 34-item Supportive Care Needs Survey (SCNS-SF34). The data were examined using descriptive statistics and logistic regression. Results. Overall, 51% (95% CI 45-57%) of participants reported having at least one 'moderate to high' level unmet need, while 25% (95% CI 20-30%) reported 'no need' for help with any items. Unmet needs were most commonly reported in the psychological (35%; 95% CI 30-41%) and physical aspects of daily living (35%; 95% CI 30-41%) domains. The three most frequently endorsed items of 'moderate to high' unmet need were: lack of energy/tiredness (24%; 95% CI 20-30%), not being able to do the things you used to do (21%; 95% CI 17-26%), and uncertainty about the future (21%; 95% CI 16-25%). Patients' sociodemographic characteristics influenced unmet needs more than disease characteristics. Patients who were female, aged less than 55 years or not in the labour force had higher odds of reporting 'moderate to high' level unmet supportive care needs. Conclusion. Unmet supportive care needs are prevalent among haematological cancer patients, particularly in the psychological and physical aspects of daily living domains. These findings provide valuable insight about the range of resources, multidisciplinary linkages and referral pathways needed to address haematological cancer patients' unmet needs.

DOI 10.3109/0284186X.2014.958527
Citations Scopus - 10Web of Science - 9
Co-authors Allison Boyes, Tara Clinton-Mcharg, Catherine Deste, Rob Sanson-Fisher
2015 Zucca AC, Sanson-Fisher RW, Waller A, Carey M, Grady A, Mackenzie L, 'Life expectancy discussions in a multisite sample of Australian medical oncology outpatients', MEDICAL JOURNAL OF AUSTRALIA, 203 (2015)
DOI 10.5694/mja15.00596
Citations Web of Science - 2
Co-authors Mariko Carey, Alison Zucca, Rob Sanson-Fisher
2015 Zucca A, Sanson-Fisher R, Waller A, Carey M, Fradgley E, Regan T, 'Medical Oncology Patients: Are They Offered Help and Does It Provide Relief?', Journal of Pain and Symptom Management, 50 436-444 (2015) [C1]

© 2015 American Academy of Hospice and Palliative Medicine. Context Identifying modifiable gaps in the symptom management pathway, as perceived by patients, is the first step to r... [more]

© 2015 American Academy of Hospice and Palliative Medicine. Context Identifying modifiable gaps in the symptom management pathway, as perceived by patients, is the first step to relieving patient suffering. Objectives The objective is to describe the proportion of patients experiencing treatable cancer-related symptoms who reported 1) a health care provider at the treatment center offered assistance for their symptom, 2) they accepted the assistance offered, and 3) the assistance relieved suffering. Variation in symptom management among treatment centers also was examined. Methods A survey was done with 528 medical oncology outpatients recruited from six treatment centers. Eight items explored management of prevalent, burdensome, and treatable cancer-related symptoms: pain, fatigue, other physical side effects, and emotional distress. Participants were asked about symptom management provided at the clinic from where they were recruited. Questions referred to the last occasion the patient experienced the symptom. Results Fewer patients were offered help to relieve fatigue (44%) and emotional distress (57%), than pain (90%) and other physical side effects (84%). In most cases, help was not offered as clinic staff were not aware of the patient's symptom. Although the vast majority of patients accepted the help that was offered, more patients accepted help for physical symptoms (pain, 97%; fatigue, 95%; and other side effects, 98%) than emotional symptoms (87%). When care was provided, most patients experienced at least a little relief from pain (99%), fatigue (94%), and emotional distress (96%). Symptom management did not vary significantly by treatment center (P = 0.073). Conclusion Quality improvement initiatives must focus primarily on improving providers' awareness of their patients' symptoms and ensuring that patients are subsequently offered help.

DOI 10.1016/j.jpainsymman.2015.04.018
Citations Scopus - 4Web of Science - 4
Co-authors Mariko Carey, Rob Sanson-Fisher, Elizabeth Fradgley, Alison Zucca
2015 Waller A, Forshaw K, Bryant J, Carey M, Boyes A, Sanson-Fisher R, 'Preparatory education for cancer patients undergoing surgery: A systematic review of volume and quality of research output over time', Patient Education and Counseling, 98 1540-1549 (2015) [C1]

© 2015 Elsevier Ireland Ltd. Objective: To determine the volume and scope of research output examining preparation of patients for people undergoing cancer-related surgical treatm... [more]

© 2015 Elsevier Ireland Ltd. Objective: To determine the volume and scope of research output examining preparation of patients for people undergoing cancer-related surgical treatment, and the impact of pre-operative education on patient outcomes and health care utilisation. Methods: Medline, EMBASE, PsychINFO databases were systematically searched. Eligible papers were coded as data-based or non-data-based. Data-based papers were further classified as descriptive, measurement or intervention studies. Methodological quality and effectiveness of intervention studies were assessed using Cochrane Effective Practice and Organisation of Care (EPOC) criteria. Results: We identified 121 eligible papers. The number of publications significantly increased over time. Most were data-based (n = 99) and descriptive (n = 83). Fourteen intervention studies met EPOC design criteria. Face-to-face interventions reported benefits for anxiety (5/7), satisfaction (1/1), knowledge (3/3) and health care costs (1/1). Audio-visual and multi-media interventions improved satisfaction (1/1) and knowledge (2/3), but not anxiety (0/3). Written interventions were mixed. Conclusion: Descriptive studies dominate the literature examining preoperative education in oncology populations, with few rigorous intervention studies. Pre-operative education can improve satisfaction, knowledge and reduce anxiety. Practice implications: Further work should be directed at multi-modal interventions, and those that include the caregiver, given their role in assisting patients to prepare and recover from surgery.

DOI 10.1016/j.pec.2015.05.008
Citations Scopus - 15Web of Science - 16
Co-authors Jamie Bryant, Rob Sanson-Fisher, Mariko Carey, Kristy Fakes, Allison Boyes
2015 Regan T, Carey M, Bryant J, Waller A, Mansfield E, Sitas F, Tracey E, 'Prevalence and correlates of current smoking among medical oncology outpatients', Psycho-Oncology, 24 1258-1264 (2015) [C1]

Copyright © 2015 John Wiley &amp; Sons, Ltd. Copyright © 2015 John Wiley &amp; Sons, Ltd. Background Continued smoking following a cancer diagnosis has adverse impacts on canc... [more]

Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd. Background Continued smoking following a cancer diagnosis has adverse impacts on cancer treatment and puts individuals at risk of secondary cancers. Data on the prevalence and correlates of smoking among cancer patients are critical for successfully targeting smoking cessation interventions. Aims To explore among a sample of medical oncology outpatients (a) the prevalence of self-reported current smoking and (b) the demographic and psychosocial factors associated with self-reported smoking. Methods A heterogeneous sample of cancer patients aged 18 years or over was recruited from 1 of 11 medical oncology treatment centres across Australia. Patients completed a survey assessing the following: smoking status; socio-demographic, disease and treatment characteristics; time since diagnosis; anxiety; and depression. Factors associated with self-reported smoking were examined using a univariate and multivariate mixed-effects logistic regression. Results A total of 1379 patients returned surveys and 1338 were included in the analysis. The prevalence of current smoking was 10.9% (n=146). After adjusting for treatment centre, patients aged 65 years and older and those without health concession cards were significantly less likely to smoke. Patients diagnosed with lung cancer and those without private health insurance were more likely to smoke. Discussion A minority of cancer patients reported continued smoking at an average time of 13 months post-diagnosis. Patients, who are younger, have been diagnosed with lung cancer and have lower socioeconomic status are at-risk groups and represent important targets for smoking cessation advice and intervention.

DOI 10.1002/pon.3893
Citations Scopus - 3Web of Science - 1
Co-authors Mariko Carey, Jamie Bryant, Elise Mansfield
2015 Zucca AC, Sanson-Fisher RW, Waller A, Carey M, Grady A, Mackenzie L, 'Life expectancy discussions in a multisite sample of australian medical oncology outpatients', Medical Journal of Australia, 203 405.e1-405.e7 (2015) [C1]

© 2015 AMPCo Pty Ltd. Produced with Elsevier B.V. All rights reserved. Objectives: The study examined: 1) the proportion of patients who received their preferred level of informat... [more]

© 2015 AMPCo Pty Ltd. Produced with Elsevier B.V. All rights reserved. Objectives: The study examined: 1) the proportion of patients who received their preferred level of information about life expectancy; and 2) sociodemographic, clinical and psychological factors associated with patients¿ perceptions of whether they received too little, too much, or the right amount of information about life expectancy. Design: Cross-sectional survey. Setting: Eleven large Australian medical oncology treatment centres. Participants: A total of 1431 medical oncology outpatients participated (81% consent rate). Eligible patients were approached between September 2012 and May 2014. Main outcome measures: Patients indicated whether the information about life expectancy they received aligned with their preferences. Results: Almost one in four patients (24%) received too little information, 4% received too much, and 50% received all the information they wanted; 22% of patients neither wanted nor received information about life expectancy. Patients were more likely to receive too little information if they were not in remission (odds ratio [OR], 1.77), did not know their cancer stage at diagnosis (OR, 3.64), or were anxious (OR, 1.48) or depressed (OR, 1.48). Patients had greater odds of receiving too much information if they were younger (OR, 1.45), had more advanced cancer (OR, 2.01) or did not know their cancer stage at diagnosis (OR, 4.42). Conclusions: That fact that 28% of cancer patients did not receive their desired level of information about life expectancy highlights the difficulties associated with discussing this sensitive topic. To ensure that life expectancy discussions correspond with patient preferences, clinicians should routinely ask patients whether they want to know this information, in what format, and at which level of detail.

DOI 10.5694/mja15.00596
Citations Scopus - 2
Co-authors Lisa Mackenzie, Mariko Carey, Rob Sanson-Fisher, Alison Zucca
2015 Waller A, Carey M, Mazza D, Yoong S, Grady A, Sanson-Fisher R, 'Patient-reported areas for quality improvement in general practice: A cross-sectional survey', British Journal of General Practice, 65 e312-e318 (2015) [C1]

©British Journal of General Practice. Background: GPs are often a patient&apos;s first point of contact with the health system. The increasing demands imposed on GPs may have an i... [more]

©British Journal of General Practice. Background: GPs are often a patient's first point of contact with the health system. The increasing demands imposed on GPs may have an impact on the quality of care delivered. Patients are well placed to make judgements about aspects of care that need to be improved. Aim: To determine whether general practice patients perceive that the care they receive is 'patient-centred' across eight domains of care, and to determine the association between sociodemographic, GP and practice characteristics, detection of preventive health risks, and receipt of patient-centred care. Design and setting: Cross-sectional survey of patients attending Australian general practice clinics. Method: Patients completed a touchscreen survey in the waiting room to rate the care received from their GP across eight domains of patient-centred care. Patients also completed the Patient Health Questionnaire (PHQ-9) and self-reported health risk factors. GPs completed a checklist for each patient asking about the presence of health risk factors. Results: In total1486 patients and 51 GPs participated. Overall, 83% of patients perceived that the care they received was patient-centred across all eight domains. Patients most frequently perceived the 'access to health care when needed' domain as requiring improvement (8.3%). Not having private health insurance and attending a practice located in a disadvantaged area were significantly associated with perceived need for improvements in care (P<0.05). Conclusion: Patients in general practice report that accessibility is an aspect of care that could be improved. Further investigation of how indicators of lower socioeconomic status interact with the provision of patient-centred care and health outcomes is required.

DOI 10.3399/bjgp15X684841
Citations Scopus - 2Web of Science - 1
Co-authors Rob Sanson-Fisher, Mariko Carey, Serene Yoong
2015 Carey M, Noble N, Mansfield E, Waller A, Henskens F, Sanson-Fisher R, 'The role of ehealth in optimizing preventive care in the primary care setting', Journal of Medical Internet Research, 17 (2015) [C1]

Modifiable health risk behaviors such as smoking, overweight and obesity, risky alcohol consumption, physical inactivity, and poor nutrition contribute to a substantial proportion... [more]

Modifiable health risk behaviors such as smoking, overweight and obesity, risky alcohol consumption, physical inactivity, and poor nutrition contribute to a substantial proportion of the world's morbidity and mortality burden. General practitioners (GPs) play a key role in identifying and managing modifiable health risk behaviors. However, these are often underdetected and undermanaged in the primary care setting. We describe the potential of eHealth to help patients and GPs to overcome some of the barriers to managing health risk behaviors. In particular, we discuss (1) the role of eHealth in facilitating routine collection of patient-reported data on lifestyle risk factors, and (2) the role of eHealth in improving clinical management of identified risk factors through provision of tailored feedback, point-of-care reminders, tailored educational materials, and referral to online self-management programs. Strategies to harness the capacity of the eHealth medium, including the use of dynamic features and tailoring to help end users engage with, understand, and apply information need to be considered and maximized. Finally, the potential challenges in implementing eHealth solutions in the primary care setting are discussed. In conclusion, there is significant potential for innovative eHealth solutions to make a contribution to improving preventive care in the primary care setting. However, attention to issues such as data security and designing eHealth interfaces that maximize engagement from end users will be important to moving this field forward.

DOI 10.2196/jmir.3817
Citations Scopus - 10Web of Science - 8
Co-authors Rob Sanson-Fisher, Natasha Noble, Frans Henskens, Elise Mansfield, Mariko Carey
2015 Waller A, Forshaw K, Carey M, Robinson S, Kerridge R, Proietto A, Sanson-Fisher R, 'Optimizing Patient Preparation and Surgical Experience Using eHealth Technology.', JMIR medical informatics, 3 e29 (2015) [C1]
DOI 10.2196/medinform.4286
Co-authors Kristy Fakes, Rob Sanson-Fisher, Mariko Carey
2014 Thomas BC, Waller A, Malhi RL, Fung T, Carlson LE, Groff SL, Bultz BD, 'A Longitudinal Analysis of Symptom Clusters in Cancer Patients and Their Sociodemographic Predictors', JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 47 566-578 (2014) [C1]
DOI 10.1016/j.jpainsymman.2013.04.007
Citations Scopus - 19Web of Science - 16
2014 Waller A, Forshaw K, Bryant J, Mair S, 'Interventions for preparing patients for chemotherapy and radiotherapy: a systematic review', Supportive Care in Cancer, (2014) [C1]

Purpose Undergoing chemotherapy and radiotherapy can be physically and psychologically stressful for people with cancer. Providing preparatory information to cancer patients as th... [more]

Purpose Undergoing chemotherapy and radiotherapy can be physically and psychologically stressful for people with cancer. Providing preparatory information to cancer patients as they face treatment and its aftermath has the potential to improve patient outcomes. This study assessed the methodological quality and effectiveness of interventions providing preparatory information about chemotherapy and/or radiotherapy to cancer patients in improving patient outcomes and health care use. Methods MEDLINE, EMBASE, and Cochrane databases were systematically searched from January 1995 until October 2012. Inclusion criteria: (1) met Effective Practice and Organisation of Care (EPOC) criteria for study design; (2) included adults with a current cancer diagnosis; (3) delivered preparatory information via a health care provider or was self-directed; (4) examined psychological well-being, quality of life, physical symptoms, satisfaction, knowledge, or health service utilisation. Studies were assessed for methodological quality using the EPOC criteria. Results Eighteen studies involving 3,443 cancer patients met inclusion criteria. Interventions included written information, audiotapes, videotapes, and computer programs. Interventions improved patient satisfaction (6/7 studies), information needs and patient knowledge (5/6 studies), physical symptoms (3/4 studies) and cost (1/1 study). More than half of the interventions improved psychological outcomes and quality of life (10/17 studies). Conclusion Providing preparatory information can improve patient-reported outcomes in cancer patients undergoing chemotherapy and radiotherapy, especially with respect to satisfaction and knowledge. Some, but not all, studies improved psychological outcomes and physical symptoms. There is a need for methodologically rigorous research to determine the most effective timing and method of delivery of preparatory information to improve patient outcomes. © 2014 Springer-Verlag Berlin Heidelberg.

DOI 10.1007/s00520-014-2303-3
Citations Scopus - 18Web of Science - 16
Co-authors Kristy Fakes, Jamie Bryant
2014 Zucca A, Sanson-Fisher R, Waller A, Carey M, 'Patient-centred care: Making cancer treatment centres accountable', Supportive Care in Cancer, 22 1989-1997 (2014) [C1]

Patient-centred care is argued to be an essential component in the delivery of quality health and cancer care. This manuscript discusses the need to generate credible data which i... [more]

Patient-centred care is argued to be an essential component in the delivery of quality health and cancer care. This manuscript discusses the need to generate credible data which indicates the quality of patient-centred care provided by cancer treatment centres. Patient-centred care covers six domains including physical comfort; emotional support; respect for patients' preferences and values; integration and coordination; involvement of family and friends; and the provision of information, communication and education to enable patients to understand and make informed decisions about their care. First, we identify priority areas within each domain. Next, we propose three questions that should be asked of every patient across the six domains of patient-centred care. The first question explores whether patients were specifically asked by a healthcare provider at the cancer treatment centre about their concerns, values and preferences. Research indicates that it cannot be assumed that clinicians are aware of patient's needs or preferences in these six areas. Second, if the answer from the patient suggests that they would like assistance, then it would be expected that this would be offered. Thirdly, if the patient indicates that they would like such assistance and it is provided, then it might be expected that the patient would report that the provided assistance did relieve their suffering, or the assistance provided was consistent with their preferences, needs and values. Regular measurement and reporting of these aspects of patient-centred cancer care has the potential to identify deficits and inequities in care delivery, allow for comparisons across treatment centres and stimulate an improvement in the patient-centred care provided to cancer patients. © 2014 Springer-Verlag.

DOI 10.1007/s00520-014-2221-4
Citations Scopus - 13Web of Science - 12
Co-authors Rob Sanson-Fisher, Mariko Carey, Alison Zucca
2014 Collie K, McCormick J, Waller AE, Railton C, Shirt L, Chobanuk J, et al., 'Qualitative evaluation of care plans for Canadian breast and head-and-neck cancer survivors', Current Oncology, 21 e18-e28 (2014) [C1]
DOI 10.3747/co.21.1698
Citations Scopus - 10Web of Science - 5
2013 Carlson L, Waller AE, Groff S, Zhong L, Bultz B, 'Reply: benefits of screening cancer patients for distress still not demonstrated.', Britsh Journal of Cancer, 108 2631-2632 (2013)
2013 Carlson LE, Waller A, Groff SL, Zhong L, Bultz BD, 'Reply: benefits of screening cancer patients for distress still not demonstrated', BRITISH JOURNAL OF CANCER, 108 738-739 (2013) [C3]
DOI 10.1038/bjc.2013.17
Citations Scopus - 2Web of Science - 2
2013 Carlson LE, Waller A, Groff SL, Bultz BD, 'Reply: Comment on 'Online screening for distress, the 6th vital sign, in newly diagnosed oncology outpatients: randomised controlled trial of computerised vs personalised triage' - Psychological distress in patients with cancer: is screening the effective solution?', BRITISH JOURNAL OF CANCER, 108 2631-2632 (2013) [C3]
DOI 10.1038/bjc.2013.287
Citations Scopus - 1Web of Science - 1
2013 Zucca A, Sanson-Fisher R, Waller A, 'The many faces of preventative care in the practice of oncology', Cancer Forum, 37 12-16 (2013) [C1]

Prevention in the oncology setting has traditionally focused on the progression of cancer, recurrence and development of new cancers. Increasingly, the focus has moved to a more h... [more]

Prevention in the oncology setting has traditionally focused on the progression of cancer, recurrence and development of new cancers. Increasingly, the focus has moved to a more holistic view of prevention that pursues prevention of suffering and maintaining quality of life. The cancer treatment team has the opportunity to play an active role in the promotion of healthy lifestyles for patients, and the relatives for whom the patient's cancer conveys risk. Assisting patients to adhere to 'non-cancer' care is important for their mortality and morbidity. Given patient's reluctance to disclose physical and emotional side-effects they may be experiencing, there is a need for health providers to regularly initiate discussions with their patients about their needs. Similarly, an oncology service that actively seeks to understand patient preferences will be better equipped to provide individualised care. A systems-minded approach to prevention may ensure that cancer care is organised to anticipate and to prevent of poor quality care. As the cancer treatment team will continue to play a more complex role in prevention, they must be supported by organisational factors that facilitate evidence-based practice.

Citations Scopus - 1Web of Science - 1
Co-authors Rob Sanson-Fisher, Alison Zucca
2013 Enns A, Waller A, Groff SL, Bultz BD, Fung T, Carlson LE, 'Risk Factors for Continuous Distress Over a 12-Month Period in Newly Diagnosed Cancer Outpatients', JOURNAL OF PSYCHOSOCIAL ONCOLOGY, 31 489-506 (2013) [C1]
DOI 10.1080/07347332.2013.822052
Citations Scopus - 20Web of Science - 16
2013 Waller A, Girgis A, Davidson PM, Newton PJ, Lecathelinais C, Macdonald PS, et al., 'Facilitating Needs-Based Support and Palliative Care for People With Chronic Heart Failure: Preliminary Evidence for the Acceptability, Inter-Rater Reliability, and Validity of a Needs Assessment Tool', JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 45 912-925 (2013) [C1]
DOI 10.1016/j.jpainsymman.2012.05.009
Citations Scopus - 9Web of Science - 7
2013 Carlson LE, Waller A, Groff SL, Giese-Davis J, Bultz BD, 'What goes up does not always come down: patterns of distress, physical and psychosocial morbidity in people with cancer over a one year period', PSYCHO-ONCOLOGY, 22 168-176 (2013) [C1]
DOI 10.1002/pon.2068
Citations Scopus - 62Web of Science - 59
2013 Waller A, Williams A, Groff SL, Bultz BD, Carlson LE, 'Screening for distress, the sixth vital sign: examining self-referral in people with cancer over a one-year period', PSYCHO-ONCOLOGY, 22 388-395 (2013) [C1]
DOI 10.1002/pon.2102
Citations Scopus - 24Web of Science - 20
2013 Carlson LE, Waller A, Groff SL, Bultz BD, 'Screening for distress, the sixth vital sign, in lung cancer patients: effects on pain, fatigue, and common problemssecondary outcomes of a randomized controlled trial', PSYCHO-ONCOLOGY, 22 1880-1888 (2013) [C1]
DOI 10.1002/pon.3223
Citations Scopus - 17Web of Science - 15
2013 Bultz B, Waller AE, Cullum J, Jones P, Halland J, Groff S, et al., 'Implementing routine screening for distress, the sixth vital sign, for patients with head and neck and neurologic cancers.', Journal of the National Comprensive Cancer Network, 11 1249-1261 (2013) [C1]
Citations Scopus - 16Web of Science - 14
2013 Girgis A, Lambert S, Johnson C, Waller A, Currow D, 'Physical, Psychosocial, Relationship, and Economic Burden of Caring for People With Cancer: A Review', Journal of Oncology Practice, 9 197-202 (2013) [C1]
DOI 10.1200/JOP.2012.000690
Citations Scopus - 110Web of Science - 70
2012 Mitchell A, Waller AE, Carlson L, 'Implementing a Screening Programme for Distress in Cancer Settings: Science and Practice.', Psicooncologia, 9 259-275 (2012)
2012 Carlson LE, Waller AE, Groff SL, Zhong L, Bultz BD, 'Online screening for distress, the 6th vital sign, in newly diagnosed oncology outpatients: randomised controlled trial of computerised vs personalised triage.', British Journal of Cancer, 107 617-625 (2012) [C1]
DOI 10.1038/bjc.2012.309
Citations Scopus - 41Web of Science - 38
2012 Carlson LE, Waller A, Mitchell AJ, 'Screening for Distress and Unmet Needs in Patients With Cancer: Review and Recommendations', JOURNAL OF CLINICAL ONCOLOGY, 30 1160-1177 (2012) [C1]
DOI 10.1200/JCO.2011.39.5509
Citations Scopus - 234Web of Science - 217
2012 Waller AE, Girgis A, Johnson CE, Lecathelinais LC, Sibbritt DW, Forstner D, et al., 'Improving outcomes for people with progressive cancer: Interrupted time series trial of a needs assessment intervention', Journal of Pain and Symptom Management, 43 569-581 (2012) [C1]
DOI 10.1016/j.jpainsymman.2011.04.020
Citations Scopus - 18Web of Science - 16
2012 Waller A, Garland SN, Bultz BD, 'Using Screening for Distress, the Sixth Vital Sign, to advance patient care with assessment and targeted interventions', SUPPORTIVE CARE IN CANCER, 20 2241-2246 (2012) [C1]
DOI 10.1007/s00520-012-1506-8
Citations Scopus - 5Web of Science - 6
2012 Waller AE, Girgis A, Johnson CE, Lecathelinais LC, Sibbritt DW, Seldon M, et al., 'Implications of a needs assessment intervention for people with progressive cancer: Impact on clinical assessment, response and service utilisation', Psycho-Oncology, 21 550-557 (2012) [C1]
DOI 10.1002/pon.1933
Citations Scopus - 9Web of Science - 9
2012 Waller A, Groff SL, Hagen N, Bultz BD, Carlson LE, 'Characterizing distress, the 6th vital sign, in an oncology pain clinic', CURRENT ONCOLOGY, 19 E53-E59 (2012) [C1]
DOI 10.3747/co.19.882
Citations Scopus - 10Web of Science - 9
2012 Giese-Davis J, Waller A, Carlson LE, Groff S, Zhong L, Neri E, et al., 'Screening for distress, the 6th vital sign: common problems in cancer outpatients over one year in usual care: associations with marital status, sex, and age', BMC CANCER, 12 (2012) [C1]
DOI 10.1186/1471-2407-12-441
Citations Scopus - 41Web of Science - 22
2012 Mitchell AJ, Waller A, Carlson LE, 'Implementing a screening programme for distress in cancer settings: Science and practice', Psicooncologia, 9 259-275 (2012)

Objective. Previous work has addressed the development and diagnostic validity testing of tools for measuring cancer-related distress. Relatively little has been published on the ... [more]

Objective. Previous work has addressed the development and diagnostic validity testing of tools for measuring cancer-related distress. Relatively little has been published on the implementation of these tools in clinical practice. We aimed to review the findings of randomized and non-randomized trials of the effect of distress screening to identify the effectiveness and acceptability of screening programmes. Methods. A search was made of the Embase/ Medline and Web of knowledge abstract databases from inception to May 2012. Our inclusion criterion was randomized and non- randomized controlled trials concerning the effect of screening for psychological distress on patient and clinician reported outcomes. We included studies on quality of life. Results. We identified 21 qualifying studies. Twelve were randomized trials and nine were non-randomized trials of the effect of screening for psychological distress. Six randomized trials assigned patients to receive screening or no screening, the remainder randomized patients to receive feedback or no feedback of screening results. Only 6 of the randomized reported benefits (five as a direct result of screening), although an additional 8 non-randomized studies showed partial benefits. Most benefits were seen in domains of communication, clinician behaviour and patient referral. Acceptability of screening was high during funded screening implementation studies but mixed when incorporated into routine clinical care. Conclusions. Screening for distress has the potential to influence communication, clinician behaviour and patient referral and to a lesser extent recognition of distress and unmet needs. Barriers to implementation success include low staff confidence, lack of training and support, low acceptability and failure to tie treatment to the screening results. Further work needs to be conducted on the value of screening when incorporated into routine clinical care and into the most appropriate methods for studying the implementation of screening in clinical practice.

DOI 10.5209/rev_PSIC.2013.v9.n2-3.40896
Citations Scopus - 3
2011 Carlson L, Waller AE, Groff S, Bultz B, 'Reply to Palmer et al. Clinical Trial did Demonstrate Benefits for Screening Cancer Patients for Distress.', Journal of Clinical Oncology, 29 279-280 (2011) [C3]
Citations Scopus - 2Web of Science - 2
2010 Waller AE, Girgis A, Lecathelinais LC, Scott W, Foot L, Sibbritt DW, Currow D, 'Validity, reliability and clinical feasibility of a needs assessment tool for people with progressive cancer', Psycho-Oncology, 19 726-733 (2010) [C1]
DOI 10.1002/pon.1624
2010 Waller AE, Girgis A, Johnson CE, Mitchell G, Yates P, Kristjanson L, et al., 'Facilitating needs based cancer care for people with a chronic disease: Evaluation of an intervention using a multi-centre interrupted time series design', BMC Palliative Care, 9 1-6 (2010) [C1]
DOI 10.1186/1472-684X-9-2
Citations Scopus - 16
Co-authors Brian Kelly
2008 Waller AE, Girgis A, Currow D, Lecathelinais LC, 'Development of the palliative care needs assessment tool (PC-NAT) for use by multi-disciplinary health professionals', Palliative Medicine, 22 956-964 (2008) [C1]
DOI 10.1177/0269216308098797
Citations Scopus - 44Web of Science - 35
Co-authors Brian Kelly
Show 61 more journal articles

Conference (20 outputs)

Year Citation Altmetrics Link
2017 MacKenzie L, Kelly M, Lawson S, Grady A, McSkimming A, Kelly B, Waller A, 'Perceptions and Enablers of Psychosocial Care Guideline Implementation in a Radiation Oncology Setting: A Pilot Study', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY (2017)
Co-authors Lisa Mackenzie
2017 Marsden D, Quinn R, Waller A, Boyle K, Galvin R, Jordan L-A, et al., 'The Identification of Altered Mood After Stroke (IAMAS) project: Improving mood screening rates in acute in-patients post stroke', INTERNATIONAL JOURNAL OF STROKE (2017)
2017 Hourn MM, Quinn R, Waller A, Boyle K, Jordan L-A, Salaris M, et al., 'Exploring current inpatient practice in transitioning people after stroke from acute to palliative care and in advance care planning: The Plan Assess Understand Survival after Stroke (PAUSe after Stroke) Project', INTERNATIONAL JOURNAL OF STROKE (2017)
2017 Marsden D, Quinn R, Waller A, Boyle K, Galvin R, Jordan L-A, et al., 'Implementing a mood screening program to improve screening rates for inpatients with acute stroke: The Identification of Altered Mood After Stroke (IAMAS) project', INTERNATIONAL JOURNAL OF STROKE (2017)
2017 Hourn M, Malpass M, Boyle K, Jordan L-A, Quinn R, Waller A, et al., 'Exploring current inpatient practice in transitioning people after stroke from acute to palliative care and in advance care planning: the Plan Assess Understand Survival after Stroke (PAUSe after Stroke) Project', INTERNATIONAL JOURNAL OF STROKE (2017)
2017 Waller A, Sanson-Fisher R, Zdenkowski N, Douglas C, Walsh J, Hall A, 'Are older and seriously ill Australians planning for their future medical care?', PSYCHO-ONCOLOGY (2017)
Co-authors Rob Sanson-Fisher, Charles Douglas, Nick Zdenkowski
2016 Mackenzie L, Kelly M, Waller A, Grady A, Leigh L, Moylan R, Kelly B, 'EXPLORING THE IMPLEMENTATION OF PSYCHOSOCIAL CARE GUIDELINES IN A RADIATION ONCOLOGY TREATMENT CENTRE', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY (2016)
Co-authors Lisa Mackenzie, Brian Kelly
2016 Shepherd J, Waller A, Sanson-Fisher R, Clark K, 'BARRIERS TO THE PROVISION OF OPTIMAL CARE TO PATIENTS DYING IN HOSPITALS: PERCEPTIONS OF NURSES', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY (2016)
Co-authors Rob Sanson-Fisher
2016 Waller A, Proietto A, Ackland S, Clark K, Sanson-Fisher R, Mackenzie L, 'HOW CAN WE ENHANCE PATIENT-CENTERED COMMUNICATION AT THE END OF LIFE? PROOF-OF-CONCEPT RCT', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY (2016)
Co-authors Rob Sanson-Fisher, Stephen Ackland
2014 Zucca A, Sanson-Fisher R, Waller A, Carey M, 'LIFE EXPECTANCY DISCUSSIONS IN A MULTI-SITE SAMPLE OF AUSTRALIAN MEDICAL ONCOLOGY OUTPATIENTS', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY (2014) [E3]
Co-authors Alison Zucca, Rob Sanson-Fisher, Mariko Carey
2014 Turon H, Waller A, Mansfield E, Sanson-Fisher R, 'HOW GOOD IS THE QUALITY OF EVIDENCE FOR GRIEF COUNSELLING? A SYSTEMATIC REVIEW', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY (2014) [E3]
Co-authors Rob Sanson-Fisher, Elise Mansfield
2014 Turon H, Waller A, Clinton-McHarg T, Fleming J, Marlton P, Sanson-Fisher R, 'HAEMATOLOGICAL CANCER PATIENTS' VIEWS ON TISSUE BANKING', ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY (2014) [E3]
Co-authors Rob Sanson-Fisher, Tara Clinton-Mcharg
2011 Waller AE, Girgis A, Davidson P, Newton P, Lecathelinais LC, MacDonald P, et al., 'Facilitating needs based care for people with chronic heart failure: Inter-rater reliability, validity and acceptability of a Needs Assessment Tool', Heart, Lung and Circulation, Perth, WA (2011) [E3]
2010 Girgis A, Waller AE, Currow D, 'Facilitating the implementation of the Palliative Care Needs Assessment Tool: Progressive disease - Cancer in clinical practice', Psycho-Oncology, Quebec, Canada (2010) [E3]
2009 Waller AE, Girgis A, Johnson CE, Currow D, Lecathelinais LC, Sibbritt DW, 'Impact of a palliative care needs assessment intervention on patient outcomes and service utilisation', Asia-Pacific Journal of Clinical Oncology, Gold Coast, QLD (2009) [E3]
DOI 10.1111/j.1743-7563.2009.01253.x
2009 Waller AE, Girgis A, Lecathelinais LC, Scott W, Foot L, Sibbritt DW, Currow D, 'Validity, reliability and clinical feasibility of a needs assessment tool for people with progressive cancer', Asia-Pacific Journal of Clinical Oncology, Gold Coast, QLD (2009) [E3]
DOI 10.1002/pon.1624
Citations Scopus - 26Web of Science - 22
2009 Girgis A, Waller AE, Currow D, 'Systematic assessment of palliative care needs: Efficacy, time and resource implications and future directions', Palliative Care 2009: Combining the 10th APCC & the 8th APHC. Conference Handbook, Perth, WA (2009) [E3]
2009 Waller AE, Girgis A, Currow D, Lecathelinais LC, Sibbritt DW, 'Evaluation of a palliative care needs assessment intervention', Supportive Care in Cancer, Rome, Italy (2009) [E3]
DOI 10.1007/s00520-009-0643-1
2007 Waller AE, Girgis A, Currow D, McElduff P, Lecathelinais LC, 'The Palliative Care Needs Assessment Tool (PC-NAT): Development and pilot-testing', Asia-Pacific Journal of Clinical Oncology, Adelaide (2007) [E3]
2006 Girgis A, Currow D, Johnson CE, Waller AE, Kristjanson L, 'Overview of a Research Program to Improve Needs Based Palliative Care in Australia', Psycho-Oncology: Journal of the psychological, social and behavioral dimension of cancer, Ferrara-Venice, Italy (2006) [E3]
Show 17 more conferences

Report (4 outputs)

Year Citation Altmetrics Link
2016 Bonevski B, Bryant J, Carey M, Considine R, D'Este C, Doran C, et al., 'Chronic care service enhancements program evaluation. Final report.', NSW Ministry of Health (2016)
Co-authors Catherine Deste, Rob Sanson-Fisher, Jamie Bryant, Liz Holliday, Billie Bonevski, John Hall, Mariko Carey
2016 Bonevski B, Bryant J, Carey M, Considine R, D'Este C, Doran C, et al., 'Chronic care service enhancements program evaluation. Summary report.', NSW Ministry of Health (2016)
Co-authors Chris Paul, Mariko Carey, Billie Bonevski, Liz Holliday, Jamie Bryant, Rob Sanson-Fisher, Catherine Deste, John Hall
2006 Girgis A, Waller AE, 'Consultation Skills Module: Emotional Cues.', National Breast Cancer Centre (2006)
2006 Girgis A, Waller AE, 'Consultation Skills Module: Breaking Bad News.', National Breast Cancer Centre (2006)
Show 1 more report

Thesis / Dissertation (1 outputs)

Year Citation Altmetrics Link
2010 Waller AE, Facilitating needs-based care of people with progressive cancer: evaluation of a palliative care needs assessment intervention, University of Newcastle (2010) [T3]
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Grants and Funding

Summary

Number of grants 12
Total funding $3,334,964

Click on a grant title below to expand the full details for that specific grant.


20172 grants / $2,149,554

A multi-component web-based intervention to improve the wellbeing of people with dementia and their carers: a randomised controlled trial$1,330,830

Funding body: NHMRC (National Health & Medical Research Council)

Funding body NHMRC (National Health & Medical Research Council)
Project Team Laureate Professor Robert Sanson-Fisher, Doctor Amy Waller, Professor Ulises Cortes, Doctor Eamonn Eeles, Doctor Allison Boyes, Dr Xavier Girones, Doctor Liz Holliday, Professor Sally Chan, Mr Simon Deeming, Conjoint Associate Professor Frans Henskens
Scheme Boosting Dementia Research Grants
Role Investigator
Funding Start 2017
Funding Finish 2021
GNo G1700013
Type Of Funding Aust Competitive - Commonwealth
Category 1CS
UON Y

Improving outcomes for people with depression in community settings: A cluster RCT$818,724

Funding body: NHMRC (National Health & Medical Research Council)

Funding body NHMRC (National Health & Medical Research Council)
Project Team Associate Professor Mariko Carey, Laureate Professor Robert Sanson-Fisher, Professor Nicholas Zwar, Associate Professor Danielle Mazza, Professor Graham Meadows, Doctor Amy Waller, Professor Leon Piterman, Professor Brian Kelly, Conjoint Associate Professor Frans Henskens
Scheme Project Grant
Role Investigator
Funding Start 2017
Funding Finish 2021
GNo G1600063
Type Of Funding Aust Competitive - Commonwealth
Category 1CS
UON Y

20163 grants / $287,708

A randomised controlled trial of the effectiveness of ‘Enable Me’: an e-health innovation for stroke survivors and support persons.$253,264

Funding body: NHMRC (National Health & Medical Research Council)

Funding body NHMRC (National Health & Medical Research Council)
Project Team Laureate Professor Robert Sanson-Fisher, Doctor Amy Waller, Associate Professor Mariko Carey, Conjoint Professor Chris Levi, Associate Professor Michael Pollack, Professor Chris Doran, Doctor Christopher Oldmeadow, Conjoint Associate Professor Frans Henskens
Scheme Partnership Projects
Role Investigator
Funding Start 2016
Funding Finish 2020
GNo G1500867
Type Of Funding Aust Competitive - Commonwealth
Category 1CS
UON Y

A randomised controlled trial of the effectiveness of ‘Enable Me’: an e-health innovation for stroke survivors and support persons.$29,444

Funding body: National Stroke Foundation

Funding body National Stroke Foundation
Project Team Laureate Professor Robert Sanson-Fisher, Doctor Amy Waller, Associate Professor Mariko Carey, Conjoint Professor Chris Levi, Dr Michael Pollack, Professor Chris Doran, Doctor Christopher Oldmeadow, Conjoint Associate Professor Frans Henskens
Scheme Partnership Projects Partner Funding
Role Investigator
Funding Start 2016
Funding Finish 2019
GNo G1501095
Type Of Funding C3112 - Aust Not for profit
Category 3112
UON Y

DVC(RI) Research Support for DECRA (DE15)$5,000

Funding body: University of Newcastle

Funding body University of Newcastle
Project Team Doctor Amy Waller
Scheme DECRA Support
Role Lead
Funding Start 2016
Funding Finish 2017
GNo G1600226
Type Of Funding Internal
Category INTE
UON Y

20151 grants / $372,175

Decision making in older people approaching the end of life$372,175

Funding body: ARC (Australian Research Council)

Funding body ARC (Australian Research Council)
Project Team Doctor Amy Waller
Scheme Discovery Early Career Researcher Award (DECRA)
Role Lead
Funding Start 2015
Funding Finish 2017
GNo G1400472
Type Of Funding Aust Competitive - Commonwealth
Category 1CS
UON Y

20142 grants / $50,000

End-of-life care: An investigation of advance care planning amongst haematological cancer patients$30,000

Funding body: Hunter Medical Research Institute

Funding body Hunter Medical Research Institute
Project Team Doctor Lisa Mackenzie, Doctor Amy Waller, Laureate Professor Robert Sanson-Fisher, Associate Professor Mariko Carey
Scheme Project Grant
Role Investigator
Funding Start 2014
Funding Finish 2014
GNo G1301373
Type Of Funding Grant - Aust Non Government
Category 3AFG
UON Y

Develop and evaluate a three-year strategic plan addressing sun exposure, skin cancer prevention and vitamin D$20,000

Funding body: Cancer Council NSW

Funding body Cancer Council NSW
Project Team Laureate Professor Robert Sanson-Fisher, Doctor Jamie Bryant, Associate Professor Mariko Carey, Associate Professor Luke Wolfenden, Doctor Amy Waller, Mrs Elizabeth Tracey, Dr ALIX Hall
Scheme Research Grant
Role Investigator
Funding Start 2014
Funding Finish 2015
GNo G1400744
Type Of Funding C3112 - Aust Not for profit
Category 3112
UON Y

20131 grants / $108,357

Proof of Concept Study Examining the Impact of Introducing the National Safety and Quality Health Service (NSQHS) Standards from the Perspective of Patients and Healthcare Consumers$108,357

Funding body: Australian Commission on Safety and Quality in Health Care

Funding body Australian Commission on Safety and Quality in Health Care
Project Team Laureate Professor Robert Sanson-Fisher, Mrs Robyn Considine, Doctor Jamie Bryant, Doctor Amy Waller
Scheme Research Grant
Role Investigator
Funding Start 2013
Funding Finish 2014
GNo G1301048
Type Of Funding Other Public Sector - Commonwealth
Category 2OPC
UON Y

20081 grants / $286,572

Needs based access to specialist palliative care services: Development and evaluation of a Consumer Toolkit$286,572

Funding body: NHMRC (National Health & Medical Research Council)

Funding body NHMRC (National Health & Medical Research Council)
Project Team Conjoint Professor Afaf Girgis, Professor David Currow, Dr Claire Johnson, Doctor Amy Waller, Conjoint Professor David Sibbritt
Scheme Palliative Care Research Grants
Role Investigator
Funding Start 2008
Funding Finish 2010
GNo G0186967
Type Of Funding Aust Competitive - Commonwealth
Category 1CS
UON Y

20071 grants / $65,598

Needs based palliative care: Evaluation of the palliative care needs assessment guidelines and tools$65,598

Funding body: NHMRC (National Health & Medical Research Council)

Funding body NHMRC (National Health & Medical Research Council)
Project Team Doctor Amy Waller, Conjoint Professor Afaf Girgis
Scheme Palliative Care Research Grants
Role Lead
Funding Start 2007
Funding Finish 2009
GNo G0187265
Type Of Funding Aust Competitive - Commonwealth
Category 1CS
UON Y

20061 grants / $15,000

Update National Breast Cancer Centre communication skills training modules$15,000

Funding body: National Breast Cancer Centre

Funding body National Breast Cancer Centre
Project Team Conjoint Professor Afaf Girgis, Doctor Amy Waller
Scheme Research Grant
Role Investigator
Funding Start 2006
Funding Finish 2006
GNo G0186835
Type Of Funding Contract - Aust Non Government
Category 3AFC
UON Y
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Research Supervision

Number of supervisions

Completed1
Current5

Current Supervision

Commenced Level of Study Research Title Program Supervisor Type
2018 PhD Brain Cancer Care Coordination: Patient, Support Person and Provider Perspectives PhD (Behavioural Science), Faculty of Health and Medicine, The University of Newcastle Principal Supervisor
2018 PhD The Right Time and the Right Tools for the Right Outcome. PhD (Behavioural Science), Faculty of Health and Medicine, The University of Newcastle Co-Supervisor
2015 PhD The provision of end of life care in hospitals: nurses' perceptions. PhD (Behavioural Science), Faculty of Health and Medicine, The University of Newcastle Principal Supervisor
2013 PhD Assessing Longitudinal Recovery of Stroke Patients & their Support Persons PhD (Behavioural Science), Faculty of Health and Medicine, The University of Newcastle Co-Supervisor
2011 PhD Do we deliver patient-centred care for cancer patients? Exploring care delivery in Australian medical oncology treatment centres PhD (Behavioural Science), Faculty of Health and Medicine, The University of Newcastle Co-Supervisor

Past Supervision

Year Level of Study Research Title Program Supervisor Type
2012 Honours Risk factors for distress trajectories over a 12 month period in newly diagnosed cancer outpatients Psychology, University of Calgary Co-Supervisor
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News

End of life conversations imperative to inform care

January 25, 2018

New research shoes only seven per cent of cancer patients having key conversation around end of life care with their doctor

Dr Amy Waller

Position

Research Fellow
Health behaviour Research Collaborative
School of Medicine and Public Health
Faculty of Health and Medicine

Contact Details

Email amy.waller@newcastle.edu.au
Phone (02) 4042 0708
Fax (02) 4042 0044

Office

Room Level 4 West Wing
Building HMRI Building
Location HMRI, New Lambton Heights

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