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 …

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 …

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 …

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 …

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 …