Phyllis N Butow

• The University of Sydney

Objectives Paramedics have the potential to make a substantial contribution to community-based palliative care provision. However, they are hindered by a lack of policy and institutional support, as well as targeted education and training. This study aimed to elicit paramedics’, palliative care doctors’ and nurses’, general practitioners’, resident...

Background The impact of patient-reported outcome measures on patient outcomes in longitudinal clinical studies is poorly understood. This observational study explored longitudinal changes in distress and problems reported by cancer patients screened and managed in accordance with a clinical pathway for anxiety and depression (ADAPT CP), implemente...

Background: There is growing interest in treatment optimization in early breast cancer (EBC). PROSPECT (ANZ-1002) provided compelling evidence that a combination of pre-operative MRI and pathological features could identify a substantial group of patients with localised EBC in whom radiotherapy (RT) could be safely omitted. The patient experience o...

Background Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural,...

Objective: Parents and their infants with complex congenital heart disease (CHD) face relational challenges, including marked distress, early separations, and infant hospitalizations and medical procedures, yet the prevalence of parent-infant interaction difficulties remains unclear. Using a standardized observational paradigm, this study investig...

Background Organisational readiness is recognised as a key factor impacting the successful translation of research findings into practice. Within psycho-oncology, measuring organisational readiness and understanding factors impacting organisational readiness is crucial as it is often challenging to implement evidence-based findings into routine can...

Objective: Fear of cancer recurrence (FCR) is a distressing concern among cancer survivors. Interventions to address FCR need to be effective but also accessible and low cost. This randomized controlled trial evaluated the efficacy of an online group-based psychological intervention for FCR (ConquerFear-Group). Methods: Eligible breast cancer (B...

Purpose Safe de-intensification of adjuvant radiotherapy (RT) for early breast cancer (BC) is currently under evaluation. Little is known about the patient experience of de-escalation or its association with fear of cancer recurrence (FCR), a key issue in survivorship. We conducted a cross-sectional study to explore this association. Methods Psych...

Background Paramedic practice is diversifying to accommodate evolving global health trends, including community paramedicine models and growing expertise in palliative and end-of-life care. However, despite palliative care specific clinical practice guidelines and existing training, paramedics still lack the skills, confidence and clinical support...

Objective: To determine the feasibility of universal genetic testing of women with newly diagnosed breast cancer, to estimate the incidence of pathogenic gene variants and their impact on patient management, and to evaluate patient and clinician acceptance of universal testing. Design, setting, participants: Prospective study of women with invas...

Interventions to assist family communication about inherited cancer risk have the potential to improve family cancer outcomes. This review aimed to evaluate the efficacy of proband-mediated interventions employed within genetics clinics to increase disclosure of genetic risk to at-risk relatives. MEDLINE, Embase, CINAHL, PubMed and PsycINFO were se...

Purpose The impact of measuring patient-reported outcomes on longitudinal clinical outcomes is not well understood. This study explored longitudinal changes in distress and problems reported by cancer patients screened and managed in accordance with a clinical pathway for anxiety and depression (ADAPT CP), implemented over 12 months. Methods Patie...

Background Palliative care is an emerging scope of practice for paramedicine. The COVID-19 pandemic has highlighted the opportunity for emergency settings to deliver palliative and end-of-life care to patients wishing to avoid intensive life-sustaining treatment. However, a gap remains in understanding the scope and limitations of current ambulance...

Objective Rural cancer patients have unique care needs which may impact upon treatment decision-making. Our aim was to conduct a qualitative systematic review and meta-synthesis to understand their perspectives and experiences of making treatment decisions. Methods A systematic search of MEDLINE, PsycINFO, CINAHL and RURAL was conducted for qualit...

It is important to understand how individuals perceive uncertainties and the consequent impact on their psychological well‐being and health behavior. The Perceptions of Uncertainties in Genome Sequencing (PUGS) scale measures clinical, affective, and evaluative uncertainties about information from sequencing. The PUGS scale has been shown to be val...

Aim: Little is known about the attitudes of Australian patients with a history of breast cancer toward the reuse of administrative health data and clinical trial data. Issues of consent, privacy, and information security are key to the discussion. Cancer care and research provides an opportune setting to develop an understanding of attitudes towar...

Background Body image is a subjective concept encompassing a person’s views and emotions about their body. Head and neck cancer (HNC) diagnosis and treatment affects several psychosocial concepts including body image. Large numbers of HNC patients are diagnosed each year in India but there are no suitable measures in regional languages to assess th...

The increasing use of genetic testing for BRCA1/2 and other pathogenic variants in the management of women with breast and ovarian cancer necessitates increased genetic literacy in oncology healthcare professionals. This pilot study aimed to evaluate an online training program to increase genetic literacy and communication skills in Australian onco...

Background: Receiving radiation therapy treatment with an immobilization mask is a source of anxiety in people with head and neck cancer (HNC). This study aimed to document the trajectory of situational anxiety during HNC treatment delivery and explore Radiation Therapists’ (RTs) ability to identify it. Materials and Methods: Participants with HNC...

Objective Comprehensive tumor genomic profiling (CTGP) is increasingly used to personalize treatments, providing hope, but potentially disappointment, for patients. We explored psychological outcomes in patients with advanced, incurable cancer, after receiving CTGP results. Methods Participants with advanced, incurable cancer (n=560, mean age 56,...

Background Head and neck cancers (HNC) are one of the most traumatic forms of cancer because they affect essential aspects of life such as speech, swallowing, eating and disfigurement. HNCs are common in India, with over 100,000 cases being registered each year. HNC and treatment are both associated with considerable anxiety and depression. With in...

Background There is a growing demand for community palliative care and home-based deaths worldwide. However, gaps remain in this service provision, particularly after-hours. Paramedicine may help to bridge that gap and avoid unwanted hospital admissions, but a systematic overview of paramedics’ potential role in palliative and end-of-life care is l...

Background Head and neck cancers (HNC) and their treatments cause dysfunction and distress. Ongoing psychological assessment using disease-specific patient-reported measures may optimize clinical decision-making, facilitate interventions to reduce psychosocial burden. As most such measures are developed in English, non-English speaking patients are...

Objective: ConquerFear has been found to effectively reduce fear of cancer recurrence (FCR). Group interventions may be particularly effective for the treatment of FCR and could lower overall costs. Our objectives were therefore to adapt ConquerFear into a group format (ConquerFear-Group, CF-G), and to evaluate its feasibility, acceptability, and...

PurposeBreast cancer survivors are at increased risk of adverse outcomes, called late effects, years after the completion of active treatment. Late effects can significantly impair physical functioning. The current study aimed to explore breast cancer survivors’ experiences of late effects, their emotional responses to existing or potential late ef...

Objectives Germline genome sequencing (GS) is becoming mainstream in cancer diagnosis and risk management. Identifying knowledge gaps and determinants of health behavior change intentions will enable effective targeting of educational and management strategies to translate genomic findings into improved cancer outcomes. Methods Probands diagnosed...

Purpose: Psychological interventions targeting fear of cancer recurrence (FCR) are effective in reducing fear and distress. Process evaluations are an important, yet scarce adjunct to published intervention trials, despite their utility in guiding the interpretation of study outcomes and optimizing intervention design for broader implementation. Ac...

Diagnosis and treatment of congenital heart disease (CHD) can present challenges to the developing parent-child relationship due to periods of infant hospitalisation and intensive medical care, parent-infant separations, child neurodevelopmental delay and feeding problems, and significant parent and child distress and trauma. Yet, the ways in which...

Background We aimed to synthesise data on issues related to stakeholder perceptions of consent for the use of secondary data. To better understand the current literature available, we conducted a systematic literature review of healthcare consumer attitudes towards the secondary use and sharing of health administrative and clinical trial data. Met...

Background: Fear of cancer recurrence or progression (FCR/P) is a common challenge experienced by people living with and beyond cancer and is frequently endorsed as the highest unmet psychosocial need amongst survivors. This has prompted many cancer organizations to develop self-help resources for survivors to better manage these fears through psyc...

Fear of cancer recurrence (FCR) is broadly defined as “fear, worry or concern relating to the possibility that cancer will come back or progress.” Some degree of FCR is almost universal among cancer survivors, and management of FCR is frequently reported as an unmet need. Conceptualization and measurement of FCR remain challenging, as consensus reg...

Background In India, caregivers are an integral part of the illness experience, especially in cancer, to the extent that they can become proxy decision‐makers for the patient. Further, owing to acute resource constraints in the Indian healthcare system, it may be difficult for oncologists to assess and elicit questions from each patient/caregiver....

Background: A cancer diagnosis is potentially life-threatening, likely causing distress and uncertainty, which may be psychologically debilitating. Depression and anxiety are commonly underdiagnosed and undertreated in cancer patients. Head and neck cancer (HNC) patients face particular challenges that may contribute to distress. This review aims...

A systematic literature review of researchers and healthcare professionals’ attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted using electronic data searching. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions...

Abstract We aimed to synthesise data on issues related to stakeholder perceptions of privacy, trust, and transparency in use of secondary data. A systematic literature review of healthcare consumer attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted. EMBASE/MEDLINE, Cochrane Library, PubMed...

Objective Most patients want their family involved in consultations and decisions, however some family caregivers report feeling overwhelmed and unsure of their role. As caregivers are increasingly looking to medical websites for guidance, this study aimed to review reputable web-resources available to inform family caregivers on how to be involved...

Communicating prognosis clearly and empathically can foster accurate prognostic awareness in patients with advanced cancer and their family members. Whereas patients and doctors desire clear prognostic communication, it presents many challenges in oncologic and palliative care settings. Patients with advanced cancer often have poor prognostic aware...

Objectives Disclosure of a hereditary condition in the family poses notable challenges for patients who often seek the assistance of genetic health professionals (GHPs). This study aimed to investigate GHPs’ opinions about the ideal time for disclosure to offspring and their responsibility to at-risk relatives. Design Cross-sectional qualitative s...

Objective Integrating mobile phone-based health (m-health) interventions into healthcare systems is one solution to improve access to services for the growing number of patients with chronic illness. Practical challenges such as poor recruitment and inadequate resource allocation can hamper the assessment of such interventions with clinical trial m...

Objective: Head and neck cancer (HNC) patients commonly undergo radiation therapy requiring immobilisation by a mask. Some find the mask distressing, and this can disrupt treatment sessions. This study aimed to explore the patient experience of immobilisation masks in the Australian and New Zealand (ANZ) context, to guide possible intervention. M...

Background: To ensure precision of treatment, patients requiring radiation therapy for treatment of head and neck cancer (HNC) are stabilized using a fitted thermoplastic immobilization mask. Despite evidence that many patients experience significant anxiety when restrained in the mask, there is a lack of proven interventions to prevent or manage...

Background It is broadly acknowledged that the next global challenge for psycho-oncology is the implementation of robust evidence-based treatments into routine clinical practice. There is little guidance or texts specific to psycho-oncology to guide researchers and clinicians about implementation science and how to optimally accelerate the translat...

Objective: Morbidity from head and neck cancers (HNCs) and their treatment is significant, given their proximity to anatomical sites impacting facial appearance and function. Assessing the needs of HNC patients throughout their cancer journey is critical to informing quality care and improving quality of life. We aimed to identify available unmet...

Purpose Head and neck cancer (HNC) is a relatively common cancer which causes a significant health burden, impacting individuals physically and psychologically. HNC treatment may result in facial disfigurement, eating and communication difficulties, and body image disturbances. We aimed to (1) identify HNC-specific patient-reported outcome measures...

Objectives Assessing whether interventions are implemented as intended (fidelity) is critical to establishing efficacy in clinical research yet rarely applied in advance care planning (ACP) interventions. We aimed to develop and implement a fidelity audit tool for an ACP intervention. Methods We developed a fidelity audit tool assessing: (A) conte...

Young adults at risk of a hereditary condition require the provision of accurate information to make an informed decision about genetic testing and risk management options. At‐risk young adults’ (18‐ to 40‐year olds) preferences for information and resources, and genetic‐related health professionals' (GHPs) views on young adults’ information needs,...

Background: Exposure to ultraviolet radiation from sunlight is directly associated with melanoma skin cancer, however reducing sun-exposure can be difficult to achieve at a population level. Methods: Using a genomic risk information behaviour change trial for melanoma prevention, we classified participants as risk-seeking, risk-neutral or risk-a...

Pre-print of manuscript accepted for publication in the eHealth special issues of Psycho-Oncology outlining the development and usability evaluation of an online self-management intervention for fear of cancer recurrence (iConquerFear)

Objective This study aimed to evaluate the cost effectiveness of a newly developed psycho-educational intervention to reduce fear of cancer recurrence (FCR) in early-stage melanoma patients. Methods A within-trial cost-effectiveness and cost-utility analysis was conducted from the Australian health system perspective using data from linked Medicar...

Hereditary genetic conditions have implications for the whole family and therefore genetic health professionals (GHPs) interact with multiple family members, sometimes individually and sometimes in aggregate. Family communication is important to ensure dissemination of genetic information to potentially affected relatives and to facilitate supporti...

Women with gynaecological cancer (GC) experience significant morbidity with associated needs for support, not all of which are currently met by the current system. Types and levels of unmet needs vary across age and the care continuum. This study aimed to identify the shared and unique supportive care needs of younger and older GC patients and surv...

Background People with melanoma want and need effective interventions for living with fear of cancer recurrence (FCR). Objective This study reports the 12‐month outcomes of a brief, psychological intervention designed to reduce FCR in people at high risk of developing another primary melanoma compared to usual care. Methods In this two‐arm random...

Background: Neoadjuvant systemic therapy (NAST) is used for large operable or highly proliferative breast cancers. It is not known whether psychological outcomes differ according to the treatment sequence (chemotherapy or surgery first) or tumour response. Methods: This was a planned analysis of a multi-institutional single arm longitudinal stud...

Fear of cancer recurrence (FCR) is common, debilitating and costly to the health system. While there has been a rising trajectory in FCR-related research, there remains many unanswered questions. A research agenda is required to clarify priorities and ensure research dollars and effort are expended wisely. This study aimed to elicit research topics...

Purpose Patient decision-aids (PtDAs) help patients make informed treatment decisions incorporating their values. Health-related quality of life (HRQOL) is sometimes an outcome of PtDA effectiveness trials, but its suitability for this purpose is unclear. We sought to provide insights into this question by critically appraising how randomized contr...

Psycho-oncology research in India reveals that family caregivers and oncologists are primary medical decision-makers frequently acting on behalf of the patient. Thus, patients are rarely asked about their wants and needs. This study aimed to understand Indian cancer patients’ needs and expectations from their support network. Twenty-six cancer pati...

Purpose: To examine changes in anxiety over time (trajectories) in men with prostate cancer faced with a decision to participate in a clinical trial and to identify demographic and study variables that predict these trajectories. Methods: Our data come from a larger study examining the efficacy of a decision aid on decisional conflict in men wit...

While family communication about a BRCA1 or BRCA2 (BRCA1/2) pathogenic variant can be a catalyst for the uptake of risk‐reducing measures in young adults, disseminating information within families and across generations is complex. This study aimed to explore how young adults and their families communicate about a BRCA1/2 pathogenic variant, from a...

This paper explores advanced cancer patients’ self-identification from a grammatical-concordance perspective. It combines corpus linguistics tool of concordance and transitivity analysis to investigate the grammatical choices that advanced cancer patients make to identify and construct themselves during an oncology consultation. The data comprises...

Purpose: Despite the prevalence of fear of cancer recurrence (FCR), understanding of factors underlying clinically significant FCR is limited. This study examined factors associated with greater FCR morbidity, according to a cognitive processing model, in cancer survivors who screened positively for clinically significant FCR seeking psychological...

Purpose Patient decision-aids (PtDAs) help patients make informed treatment decisions incorporating their values. Health-related quality of life (HRQOL) is sometimes an outcome of PtDA effectiveness trials, but its suitability for this purpose is unclear. We sought to provide insights into this question by critically appraising how randomized contr...

Objective Online psychological therapies provide a way to connect adolescent and young adult (AYA) cancer survivors to evidence‐based support. We aimed to establish the feasibility, acceptability, and safety of Recapture life, a six‐session group‐based online cognitive‐behavioural intervention, led by a facilitator, for AYAs in the early post‐treat...

Background: We modified and evaluated an advance care planning (ACP) intervention, which had been shown to improve compliance with patient's end of life (EoL) wishes, in a different patient population. Methods: Patients with incurable cancer, and a Family Member (FM), were randomised one-to-one to usual care or usual care plus an ACP interventio...

Purpose: Women with advanced breast cancer (ABC) face significant adjustment challenges, yet few resources provide them with information and support, and attendance barriers can preclude access to face-to-face psychosocial support. This paper reports on two qualitative studies examining (i) whether information and support-seeking preferences of wo...

MDS is a complex and potentially severe disease which can trigger psychological distress. A lack of information received and understood about MDS may also arouse feelings of distress. Low health literacy (HL) might play a role particularly among older patients. Our aim was to assess MDS-related distress and to study the factors associated with it,...

Background: Precision medicine aims to link molecular targets in tumours with corresponding therapies, particularly for patients with rare cancers. Innovative approaches are needed to translate molecular opportunities into clinical care. The Cancer Molecular Screening and Therapeutics (MoST) program employs a molecular screening platform to identif...

Context: Understanding patients' symptom experiences is essential to providing effective clinical care. The discussion between patients and physicians of symptom meaning and its significance, however, is ill understood. Objectives: To investigate palliative care physicians' understanding of symptom meaning, and their experiences of and attitudes...

Objective Ethnicity and migrant status results in disparities with cancer burden and survival; with communication difficulties cited as the main barrier to access. Our research team tested a communication intervention package comprising consultation audio‐recordings (ARs) and question prompt lists (QPLs) for Low English Speaking (LES) patients with...

The aim of this research was to understand how genomics-based personal melanoma risk information impacts psychological and emotional health outcomes in the general population. In a pilot randomized controlled trial, participants (n = 103) completed the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire, 3 months after receiving...

Background: Advances in genomics offer promise for earlier detection or prevention of cancer, by personalisation of medical care tailored to an individual's genomic risk status. However genome sequencing can generate an unprecedented volume of results for the patient to process with potential implications for their families and reproductive choice...

Background: Genomic sequencing in cancer (both tumour and germline), and development of therapies targeted to tumour genetic status, hold great promise for improvement of patient outcomes. However, the imminent introduction of genomics into clinical practice calls for better understanding of how patients value, experience, and cope with this novel...

Background: Neoadjuvant systemic therapy (NAST) is an increasingly used treatment option for women with large operable or highly proliferative breast cancer. With equivalent survival outcomes between NAST and up-front surgery, the situation-specific preference-sensitive nature of the decision makes it suitable for a decision aid (DA). This study ai...

Objective: To document the effect of a cancer specific question prompt list (QPL) on patients question asking and shared decision-making (SDM), and to evaluate the combined effect of the QPL and consultation audio recording (CAR) on patient outcomes. Method: This exploratory study compared two groups of patients receiving either a QPL or combine...

In this paper we provide a linguistic description of the context of oncology consultation, using a corpus of expert oncologists talking to advanced cancer patients. We investigate the contemporary cultural shift that layers multiple clinical and interpersonal roles for oncologists, using SFL’s paradigmatic contextual parameters of field, tenor and...

This study explored health professionals' (HPs') experiences of interacting with family care-givers (FCs), and the strategies they employ during these interactions. Qualitative methods involved audio-taped and transcribed in-depth semi-structured interviews with 21 HPs (doctors, nurses) from the geriatric wards of two tertiary hospitals. Framework...

Background Translation of evidence-based interventions into hospital systems can provide immediate and substantial benefits to patient care and outcomes, but successful implementation is often not achieved. Existing literature describes a range of barriers and facilitators to the implementation process. This systematic review identifies and explore...

Background: iPrevent estimates an individual's personal BC risk, using either the IBIS or BOADICEA algorithms, and provides tailored risk management information on screening, lifestyle modifications, risk-reducing surgery and risk-reducing medication. It is designed to be used collaboratively by women and their clinicians. The purpose of this pre-i...

Aim: Careful assessment of the potential donor-recipient relationship is recommended by guidelines to prevent undue coercion, and ensure realistic expectations and genuine motivations. However, relationships are complex, nuanced and value-laden, and can be challenging to evaluate in living kidney donation. We aimed to describe the attitudes and ap...

Objective Family caregivers can, at times, add complexity to clinical encounters. Difficult family caregivers and dynamics may: derail consultation communication, reduce patient autonomy, and compromise effective clinical care. A paucity of practical strategies guiding effective clinician-family communication exists. This study aimed to develop and...

Objective: Family caregivers regularly attend medical consultations and are often involved in decision-making; however, there are few practical strategies to guide effective communication for the clinician-patient-family trio. We aimed to develop and evaluate the first comprehensive guidelines for oncology physicians and nurses, on how to positive...

Objective Psychosocial oncologists may be particularly vulnerable to burnout. This study aimed to assess burnout among Israeli psychosocial oncologists in relation to the Job Demands-Resources model and the coping strategies model. Method Participants included 85 of 128 listed psychosocial oncologists currently working with cancer patients. They c...

Background: Optimal dosing of oral tyrosine kinase inhibitor therapy is critical to treatment success and survival of patients with chronic myeloid leukemia (CML). Drug intolerance secondary to toxicities and nonadherence are significant factors in treatment failure. Objective: The objective of this study was to develop and pilot-test the clinic...

Background: Advance care planning (ACP) is defined in a variety of ways, although it is widely understood as a process undertaken by patients, when they have capacity, to define and communicate their treatment preferences for future care. Few studies have explored the meaning and importance patients place on their ability to participate in directi...

Communicating personalized genomic risk results for common diseases to the general population as a form of tailored prevention is novel and may require alternative genetic counseling service delivery models. We describe the development and evaluation of a communication protocol for disclosing melanoma genomic risk information to the asymptomatic ge...

Background An intervention’s success depends on how participants interact with it in local settings. Process evaluation examines these interactions, indicating why an intervention was or was not effective, and how it (and similar interventions) can be improved for better contextual fit. This is particularly important for innovative trials like Supp...

Purpose Fear of cancer recurrence (FCR) is prevalent, distressing, and long lasting. This study evaluated the impact of a theoretically/empirically based intervention (ConquerFear) on FCR. Methods Eligible survivors had curable breast or colorectal cancer or melanoma, had completed treatment (not including endocrine therapy) 2 months to 5 years pr...

Objective: Testicular cancer (TC) affects young men and may cause psychological distress despite a good prognosis. This systematic review evaluated the prevalence, severity and correlates of anxiety, depression, fear of cancer recurrence (FCR) and distress in TC survivors. Methods: A systematic search of literature published 1977-2017 was conduc...