Medicine and Health Sciences Commons^™

Further Validation Of The Perceptions Of Uncertainties In Genome Sequencing Scale Among Patients With Cancer Undergoing Tumor Sequencing, Kendall L. Umstead, Rachel Campbell, Christine E. Napier, Nicole Bartley, Megan C. Best, Phyllis N. Butow, Barbara B. Biesecker

IES Papers and Journal Articles

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 valid and reliable among individuals receiving results about their genomes. This study assessed whether its validity generalized to patients with cancer undergoing tumor sequencing. Exploratory factor analysis (EFA) was conducted on data from the Molecular Screening and Therapeutics Program (n = 310) to identify a measurement model. Confirmatory factor analysis (CFA) was …

What Is The Role Of Spiritual Care Specialists In Teaching Generalist Spiritual Care? The Perspectives Of Pastoral Care Staff In A Large Catholic Health And Aged Care Organisation, Kate Fiona Jones, Jennifer Washington, Matthew Kearney, Megan C. Best

IES Papers and Journal Articles

The value of spiritual care training for all staff working in health and aged care has been demonstrated. This study investigated how spiritual care specialists (SCSs) perceive their role in delivering spiritual care education to other staff. Fourteen SCSs participated in three online focus groups. Two key themes were identified: First, SCSs build upon existing capacity of staff by: (i) recognising existing strengths and capabilities; (ii) using relevant stories; (iii) using language which makes spiritual care accessible; (iv) making training relevant and practical; (v) tapping into staff vocation or calling; and (vi) building awareness of one’s own spirituality. Second, SCSs …

Psychological Outcomes In Advanced Cancer Patients After Receiving Genomic Tumor Profiling Results, Sabina Vatter, Timothy E. Schlub, Christine E. Napier, Megan C. Best, Nicci Bartley, Ilona Juraskova, Bettina Meiser, Mandy L. Ballinger, Barbara B. Biesecker, David Goldstein, David M. Thomas, Phyllis Butow, Members Of The Pigeon Project

IES Papers and Journal Articles

Background: Comprehensive tumor genomic profiling (CGP) offers hope for personalized treatment for cancer patients when other treatment options have been exhausted. However, receipt of nonactionable or ambiguous results could be an ongoing source of distress. We investigated patterns of hope, anxiety, depression, and CGP-specific anxiety in advanced cancer patients after receiving CGP results and 2–3months later.

Method: Participants were enrolled in a longitudinal psychosocial substudy, embedded in the Molecular Screening and Therapeutics Program, and had advanced solid cancers of any histological type with sufficient and accessible tissue for CGP. At T0 (before receiving CGP results), 1,431 participants completed sociodemographic, disease …

The Impact Of Covid-19 On Cancer Patients, Their Carers And Oncology Health Professionals: A Qualitative Study, P Butow, P E. Havard, Z Butt, I Juraskova, H Sharpe, H Dhillon, L Beatty, P Beale, M Cigolini, B Kelly, R J. Chan, L Kirsten, Megan Best, J Shaw

IES Papers and Journal Articles

Objective: Cancer patients, carers and oncology health professionals have been impacted by the COVID-19 pandemic in many ways, but their experiences and psychosocial responses to the pandemic are still being explored. This study aimed to document the experience of Australians living with cancer, family carers, and Oncology health professionals (HPs) when COVID-19 first emerged.

Methods: In this qualitative study, participants (cancer patients currently receiving treatment, family carers and HPs) completed a semi-structured interview exploring their experiences of COVID-19 and the impact it had on cancer care. Participants also completed the Hospital Anxiety and Depression Scale (patients) and the Depression, Anxiety …

Factors Influencing Military Personnel Utilizing Chaplains: A Literature Scoping Review, Mark D. Layson, Katie Tunks Leach, Lindsay B. Carey, Megan C. Best

IES Papers and Journal Articles

Chaplains have been embedded in military settings for over a millennium. In recent years however, the decline in spiritual/religious (S/R) affiliation of military personnel across Western cultures has led to some commentators questioning the utilization of religious chaplains by defence personnel. This scoping review maps the literature on S/R and non-S/R factors that influence utilizing military chaplains— with a particular emphasis on the Australian military context. A systematic scoping review of tertiary literature databases using Arksey and O’Malley (2003) and Joanna Briggs Institute methodologies (JBI, 2021), revealed a total of 33 articles meeting the inclusion criteria. Results fell into three …

End Stage Kidney Disease Patient Experiences Of Renal Supportive Care In An Australian Teaching Hospital: A Qualitative Study, Eloise Sobels, Megan Best, Steve Chadban, Riona Pais

IES Papers and Journal Articles

Context

Renal Supportive Care Services (RSCS) were introduced in Australia to provide patient-centred care with a focus on better symptom management and improved quality of life in end stage kidney disease (ESKD) patients managed with or without dialysis. While RSCS have demonstrated clinical benefits with reduced length of hospital stay and symptom burden, there is a gap in understanding the experience of patients referred to RSCS.

Objectives

To identify patient attitudes, beliefs, and perspectives on the RSCS.

Methods

Qualitative interviews were conducted with 20 participants from both dialysis and conservative treatment pathways. Transcripts were then thematically analysed and primary themes …

Psychological Predictors Of Advanced Cancer Patients' Preferences For Return Of Results From Comprehensive Tumor Genomic Profiling, Bettina Meiser, Phyllis Butow, Grace Davies, Christine Napier, Timothy Schlub, Nicci Bartley, Ilona Juraskova, Mandy Ballinger, David M. Thomas, Kathy Tucker, David Goldstein, Barbara Biesecker, Megan Best

IES Papers and Journal Articles

This study assessed the psychological predictors of preferences for return of comprehensive tumor genomic profiling (CTGP) results in patients with advanced cancers, enrolled in the Molecular Screening and Therapeutics Program. Patients completed a questionnaire prior to undergoing CTGP. Of the 1434 who completed a questionnaire, 96% would like to receive results that can guide treatment for their cancer, and preference for receiving this type of result was associated with lower tolerance of uncertainty. Sixty-four percent would like to receive results that cannot guide treatment, and lower tolerance of uncertainty, self-efficacy, and perceived importance were associated with this preference. Fifty-nine …

Validation Of The Knowledge Of Genome Sequencing (Kogs) Scale In Cancer Patients, P Butow, C Napier, R Campbell, N Bartley, Megan Best, M L. Ballinger

IES Papers and Journal Articles

Introduction: The Knowledge of Genome Sequencing (KOGS) questionnaire was recently developed to measure knowledge of genomic sequencing (GS), with preliminary psychometric data supporting its reliability and validity. The aim of this study was to test the reliability and validity of the KOGS in a larger sample, and to confirm its utility in a cancer setting.

Methods: The Genetic Cancer Risk in the Young (RisC) study recruits participants with a personal history of cancer, to investigate heritable cancer causes and future cancer risk using germline GS. Participants (n = 261) in a psychosocial substudy of RisC completed a questionnaire after consent …

Cancer Patient Knowledge About And Behavioral Intentions After Germline Genome Sequencing, Christine E. Napier, Grace Davies, Phyllis N. Butow, Timothy E. Schlub, Megan C. Best, Nicci Bartley, Ilona Juraskova, Bettina Meiser, Katherine M. Tucker, Barbara B. Biesecker, David M. Thomas, Mandy L. Ballinger, Members Of The Pigeon Project

IES Papers and Journal Articles

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 with cancer of likely genetic origin that consented to but not yet undergone GS, and their biological relatives, completed a cross-sectional questionnaire assessing GS knowledge and hypothetical intention to change behaviors.

Results: Probands (n = 348; 57% university educated) and relatives (n = 213; 38% university educated) had moderate GS knowledge levels, with greater knowledge associated …

Motivations And Barriers To Pursue Cancer Genomic Testing: A Systematic Review, Megan Smith-Uffen, Nicci Bartley, Grace Davies, Megan Best

IES Papers and Journal Articles

Objectives: Single-gene testing is associated with psycho-social challenges for cancer patients. Genomic testing may amplify these. The aim of this study was to understand patients’ motivations and barriers to pursue cancer genomic testing, to enable healthcare providers to support their patients throughout the testing process and interpretation of test results.

Methods: Five databases were searched for original peer reviewed research articles published between January 2001 and September 2018 addressing motivation for genomic cancer testing. QualSyst was used to assess quality.

Results: 182 studies were identified and 17 were included for review. Studies were heterogenous. Both somatic and germline testing were …

Testing A Model Of Resilience In Family Members Of Relatives With Traumatic Brain Injury Vs Spinal Cord Injury: Multigroup Analysis, Grahame K. Simpson, Malcolm I. Anderson, Maysaa Daher, Kate F. Jones, Peter Morey

IES Papers and Journal Articles

Objective: To test a model comprising explanatory (neurologic impairment, coping, personality) and mediating (resilience, self-efficacy, hope, social support) variables on psychological adjustment and burden among family caregivers of individuals with traumatic brain injury (TBI) vs spinal cord injury (SCI).

Design: Structural equation modeling with multigroup analysis.

Setting: Six rehabilitation centers across New South Wales and Queensland, Australia.

Participants: A total of 181 family members (N=181; 131 TBI, 50 SCI). Interventions: Not applicable.

Main Outcome Measures: Connor-Davidson Resilience Scale, Eysenck Personality Questionnaire, Ways of Coping Questionnaire, General SelfEfficacy Scale, Herth Hope Scale, Medical Outcome Study Social Support Survey; and 4 measures …

Effectively Communicating Comprehensive Tumor Genomic Profiling Results: Mitigating Uncertainty For Advanced Cancer Patients, Nicci Bartley, Megan C. Best, Barbara B. Biesecker, Alana Fisher, David Goldstein, Bettina Meiser, David M. Thomas, Mandy L. Ballinger, Phyllis Butow

IES Papers and Journal Articles

Objective: To understand advanced cancer patients’ experience of uncertainty when receiving comprehensive tumor genomic profiling (CTGP) results, and their perceptions of how healthcare provider (HCP) communication impacts uncertainty.

Methods: Thirty-seven semi-structured interviews with advanced cancer patients were conducted within two weeks of patients receiving CTGP results. Transcripts were thematically analyzed, using an inductive approach.

Results: We identified three themes that illustrate patient experience of uncertainties when receiving CTGP results: 1. Type and degree of uncertainty fluctuates along with changing illness circumstances and the nature of the CTGP results; 2. HCPs’ co-ordination of care and communication shapes uncertainty, with immediate, clearer …

Australian Perspectives On Spiritual Care Training In Healthcare: A Delphi Study, Kate F. Jones, Jennifer Washington, Matthew Kearney, David Kissane, Megan C. Best

IES Papers and Journal Articles

Objective: The aim was to establish core components of spiritual care training for healthcare professionals in Australia.

Methods: This study used the Delphi technique to undertake a consensus exercise with spiritual care experts in the field of healthcare. Participant opinion was sought on (i) the most important components of spiritual care training; (ii) preferred teaching methods; (iii) clinical scenarios to address in spiritual care training; and (iv) current spiritual assessment and referral procedures.

Results: Of the 107 participants who responded in the first round, 67 (62.6%) were female, 55 (51.4%) worked in pastoral care, and 84 (78.5%) selected Christian as …

Longitudinal Patterns In Fear Of Cancer Progression In Patients With Rare, Advanced Cancers Undergoing Comprehensive Tumour Genomic Profiling, Phyllis Butow, Fabiola Müller, Christine E. Napier, Nicci Bartley, Mandy L. Ballinger, Barbara Biesecker, Ilona Juraskova, Bettina Meiser, Timothy E. Schlub, David M. Thomas, David Goldstein, Megan C. Best, Members Of The Pigeon Project

IES Papers and Journal Articles

Introduction: Fear of cancer progression (FCP) impacts quality of life and is a prevalent unmet need in patients diagnosed with advanced cancer, particularly as treatment options are reduced. We aimed to identify longitudinal patterns in FCP over 6 months in patients with advanced cancer receiving comprehensive tumour genomic profiling (CTGP) results, and their correlates.

Methods: Patients with pathologically confirmed metastatic disease (∼70% rare cancers) receiving or post their last line of standard therapy completed questionnaires at T0 (prior to CTGP), T1 (immediately post CTGP results) and T2 (2 months later).

Results: High stable (N = 52; 7.3%) and low/moderate …

The Content, Teaching Methods And Effectiveness Of Spiritual Care Training For Healthcare Professionals: A Mixed-Methods Systematic Review, Kate Fiona Jones, Piret Paal, Xavier Symons, Megan C. Best

IES Papers and Journal Articles

Context: Spirituality has been demonstrated to play an important role in healthcare, yet many staff feel ill-equipped to deliver spiritual care. Spiritual care training programs have been developed to address this need.

Objective: The aim of this mixed-methods systematic review was to identify spiritual care training programs for healthcare professionals or students, and to investigate program content, teaching methods, key outcomes, and identified challenges and facilitators.

Methods: A mixed-methods systematic review was conducted. The search terms (‘religio*’ OR ‘spiritual*’ OR ‘existenti*’) were combined with (‘educat*’ OR ‘train*’ OR ‘curricul*’ OR ‘program*’), AND (‘care’ OR ‘therap*’ OR ‘treatment’ OR ‘competenc*’). Search …

Systematic Review Of Medical Education On Spirituality, John Wenham, Megan Best, David Kissane

IES Papers and Journal Articles

Background

Spirituality is a fundamental dimension of our human nature that impacts on medical care and yet is relatively neglected by medical education courses in Australia.

Aim

This systematic review was conducted to assess the curriculum content currently used to develop medical student understanding of, and engagement with, spirituality in the context of patient care.

Methods

Studies published in English from 2010 to the review date were included in order to focus on the most recent curricula. Studies included medical students in undergraduate or postgraduate programmes, doctors in resident training programmes and registrars. Interventions considered for inclusion were curriculum modules …

Pilot Study Of An Online Training Program To Increase Genetic Literacy And Communication Skills In Oncology Healthcare Professionals Discussing Brca1/2 Genetic Testing With Breast And Ovarian Cancer Patients, Bettina Meiser, Paula Woodward, Margaret Gleeson, Maira Kentwell, Helen Mar Fan, Yoland Antill, Phyllis N. Butow, Frances Boyle, Megan Best, Natalie Taylor, Katy Bell, Kathy Tucker

IES Papers and Journal Articles

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 oncology healthcare professionals tasked with discussing and coordinating mainstream genetic testing with breast and ovarian cancer patients. A training website with embedded videos was developed. This study assesses the website’s acceptability and user-friendliness; suggestions for improvement were also elicited. Oncology healthcare professionals were recruited through relevant professional organisations, invited to the …

Advanced Cancer Patient Preferences For Receiving Molecular Profiling Results, Megan Best, Phyllis Butow, Chris Jacobs, Ilona Juraskova, Jacqueline Savard, Bettina Meiser, David Goldstein, Mandy Ballinger, Nicci Bartley, Christine Napier, Grace Davies, David Thomas, Kathy Tucker, Timothy Schlub, Ainsley J. Newson

IES Papers and Journal Articles

Objective: This study aimed to discern preferences for receiving somatic molecular profiling (MP) results in cancer patients who have given consent to undergo testing.

Methods: We conducted a mixed‐methods study to explore patients’ views on which MP results they would like to receive and why. Advanced cancer patients (n=1299) completed questionnaires after giving consent to participate in a parent genomics study and undergoing MP. A subset of patients (n=20) participated in qualitative interviews.

Results: Almost all (96%) participants were interested in receiving results which would direct cancer treatment (i.e. were actionable). A smaller majority wanted to access results which were …

Effectiveness Of Spiritual Care Training For Rehabilitation Professionals: An Exploratory Controlled Trial, Kate Fiona Jones, Julie Pryor, Candice Care-Unger, Joseph Descallar, Grahame Kenneth Simpson

IES Papers and Journal Articles

Background: Spirituality may play an important role in neurorehabilitation, however research findings indicate that rehabilitation professionals do not feel well equipped to deliver spiritual care.

Objective: To evaluate a spiritual care training program for rehabilitation professionals.

Methods: An exploratory controlled trial was conducted. Participants enrolled in a two-module spiritual care training program. Spiritual care competency was measured with the Spiritual Care Competency Scale. Confidence and comfort levels were measured using the Spiritual Care Competency Scale domains. The Spirituality and Spiritual Care Rating Scale assessed participant attitudes and knowledge. Measures were administered three times: pre-program, post-program and six weeks follow-up. …

"Spirituality Is Everybody's Business": An Exploration Of The Impact Of Spiritual Care Training Upon The Perceptions And Practice Of Rehabilitation Professionals, Kate Fiona Jones, Julie Pryor, Candice Care-Unger, Grahame Simpson

IES Papers and Journal Articles

Purpose: This study explored the impact of a brief spiritual care training program upon the perceptions and self-reported practice of rehabilitation professionals working in traumatic injury.

Methodology and methods: A qualitative study. Semi-structured interviews were held with staff from a rehabilitation hospital in Sydney, Australia, between six and eight weeks after participation in spiritual care training. A thematic analysis was conducted.

Results: Of the 41 rehabilitation professionals who attended the training (1 h online, 1.5 h face to face), 16 agreed to be interviewed. The majority worked in spinal cord injury and were female. Half reported holding a Christian affiliation. …

Psychological Impact Of Comprehensive Tumor Genomic Profiling Results For Advances Cancer Patients, Phyllis N. Butow, Megan Best, Grace Davies, Timothy Schlub, Christine Napier, Nicci Bartley, Mandy Ballinger, Ilona Juraskova, Bettina Meiser, David Goldstein, Barbara Biesecker, David Thomas

IES Papers and Journal Articles

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, 43% university educated) in this longitudinal substudy of the Molecular Screening and Therapeutics Program (MoST), completed questionnaires before and after receiving CGP results. MoST participants, recruited from Australian oncology clinics, undergo CTGP, and if there are actionable findings, are offered treatment in a related therapeutic trial if available.

Results

Patients who received actionable results, (n …