21 results on '"Juraskova, Ilona"'
Search Results
2. Psychological predictors of advanced cancer patients' preferences for return of results from comprehensive tumor genomic profiling.
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Meiser, Bettina, Butow, Phyllis, Davies, Grace, Napier, Christine E., Schlub, Timothy E., Bartley, Nicci, Juraskova, Ilona, Ballinger, Mandy L., Thomas, David M., Tucker, Kathy, Goldstein, David, Biesecker, Barbara B., and Best, Megan C.
- Abstract
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 percent would like to receive variants of unknown significance, which was associated with lower tolerance of uncertainty, higher self‐efficacy, and perceived importance. Eighty‐six percent wanted to receive germline results that could inform family risk. This was associated with higher self‐efficacy, perceived importance, and perceived susceptibility. Although most patients wanted to receive all types of results, given the differing patient preferences regarding the return of results depending on the utility of the different types of results, it appears critical to safeguard patient understanding of result utility to achieve informed patient choices. This should be accompanied by appropriate consent processes. [ABSTRACT FROM AUTHOR]
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- 2022
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3. Value of whole‐genome sequencing to Australian cancer patients and their first‐degree relatives participating in a genomic sequencing study.
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Butow, Phyllis, Davies, Grace, Napier, Christine E., Bartley, Nicci, Ballinger, Mandy L., Biesecker, Barbara, Juraskova, Ilona, Meiser, Bettina, Schlub, Timothy, Thomas, David M., Goldstein, David, and Best, Megan C.
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Genomic Sequencing (GS) to identify high cancer risk will soon enter clinical practice at significant cost to the health system. This study aimed to quantify perceived value of GS to Australian cancer patients and their first‐degree relatives participating in a genomic sequencing study, and factors associated with value. Participants were recruited upon consent to the genomics study. Eligible participants (with cancer of likely genetic etiology, or a first‐degree relative) completed a questionnaire prior to GS. Willingness to pay was assessed via hypothetical trade‐off scenarios of actionable result return rates of 1%, 10%, 20%, 30%, 40% or 50%. Of 348 probands and 213 relatives (92% and 93% response rate), 81% would consistently have GS for as little as a 1% actionable return rate. Participants would pay a median of $1,000 for return rates of at least 20% (probands) or 30% (relatives), and $300 for lower return rates. Probands with common cancers and negative attitudes to uncertainty were more likely to have GS; those with higher education were more willing to pay $1,000 and $3,000 for lower return rates. This study found high interest in, but lower willingness to pay for GS in cancer patients and their first‐degree relatives, possibly due to inability to pay. Further research is needed to improve our understanding of how individuals in different risk circumstances, trade‐off the risks, harms, and benefits of GS. [ABSTRACT FROM AUTHOR]
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- 2022
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4. Longitudinal patterns in fear of cancer progression in patients with rare, advanced cancers undergoing comprehensive tumour genomic profiling.
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Butow, Phyllis, Müller, Fabiola, Napier, Christine E., Bartley, Nicci, Ballinger, Mandy L., Biesecker, Barbara, Juraskova, Ilona, Meiser, Bettina, Schlub, Timothy E., Thomas, David M., Goldstein, David, and Best, Megan C.
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CANCER invasiveness ,CANCER patients ,QUALITY of life ,CANCER diagnosis ,SOCIAL support - Abstract
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 stable (N = 56; 7.8%) FCP patterns over time typified the largest participant groups (N = 721). Those with an immediately actionable variant versus a non‐actionable variant (p = 0.045), with higher FCP (p < 0.001), and lower Functional Assessment of Chronic Illness Therapy—Spiritual Well‐being (FACIT‐Sp) scores (p = 0.006) at T0, had higher FCP at T1. Those with higher FCP at T0 (p < 0.001) and at T1 (p < 0.001), lower FACIT‐Sp scores at T1 (p = 0.001), lower education (p = 0.031) and female gender (p = 0.027) had higher FCP at T2. Discussion: Routine screening for psychological/spiritual characteristics in those about to undergo CTGP may help to identify patients who may benefit from closer monitoring and provision of psychosocial support. Future studies should explore interventions to best address FCP in this vulnerable group, as interventions assessed to date have almost all addressed patients with curative cancers or newly diagnosed advanced disease. [ABSTRACT FROM AUTHOR]
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- 2021
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5. Avoiding the 'survivorship abyss': Qualitative insights from 15‐year prostate cancer survivors.
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Mazariego, Carolyn G., Laidsaar‐Powell, Rebekah, Smith, David P., and Juraskova, Ilona
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RADICAL prostatectomy ,CANCER survivors ,INTERPERSONAL relations ,PROSTATE cancer ,CANCER diagnosis ,DIAGNOSIS - Abstract
Objective: As many men diagnosed with prostate cancer (PC) are now living well beyond diagnosis and treatment, these survival gains necessitate improved understanding of long‐term survivorship experiences. This is the first qualitative study that aimed to provide insights into PC survivors' adjustment to diagnosis and any persisting or emerging cancer/treatment‐related issues over 15+ years. Methods: Semi‐structured interviews were conducted with 37 men purposively sampled from the 15‐year follow‐up phase of a population‐wide cohort study, the New South Wales Prostate Cancer Care and Outcomes Study (PCOS). Interview data were transcribed and thematically analysed applying a framework methodology. Results: The majority of participating men (88.6%) had been diagnosed with localised disease and were treated with radical prostatectomy as primary treatment (54.1%). Four main interconnecting themes relating to men's long‐term survivorship experience with PC were identified: (1) Survivorship reflections, (2) interactions with the healthcare system, (3) personal and social relationships and (4) dominant coping strategies. Many men reported gaps along the continuum of care and a feeling of abandonment across their long‐term survivorship, encompassed by a perceived lack of psychosocial and informational support for persisting treatment side‐effects, especially sexual dysfunction. Receiving adequate survivorship care and trusting patient–clinician relationships appeared to be associated with greater resilience and positivity in the men's acceptance of cancer‐related long‐term challenges and personal limitations. Conclusions: Long‐term PC survivors continue to experience lasting treatment impacts, with many men reporting unmet needs and a lack of continuity of multidisciplinary care. Implementation of coordinated and tailored survivorship care and shared care pathways with multidisciplinary practitioners will facilitate men's improved engagement and timely access to supportive care interventions, helping to avoid the 'survivorship abyss'. [ABSTRACT FROM AUTHOR]
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- 2021
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6. Effectiveness of online communication skills training for cancer and palliative care health professionals: A systematic review.
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Berg, Melissa N., Ngune, Irene, Schofield, Penelope, Grech, Lisa, Juraskova, Ilona, Strasser, Michelle, Butt, Zoe, and Halkett, Georgia K.B.
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MEDICAL personnel ,COMMUNICATIVE competence ,PALLIATIVE treatment ,CANCER treatment ,BIBLIOGRAPHIC databases ,TREATMENT effectiveness - Abstract
Objective: To determine the reported effect of online communication skills training (CST) on health professional (HP) communication skills and patient care outcomes in cancer and palliative care. Methods: Primary research published in English between January 2003 and April 2019 was identified in bibliographic databases including Medline, Embase and Proquest (Prospero: CRD42018088681). An integrated mixed‐method approach included studies describing a CST intervention and its effect, for cancer or palliative care HPs, delivered online or blended with an online component. Included studies' outcomes were categorised then findings were stratified by an evaluation framework and synthesised in an effect direction plot. Risk of bias was assessed using Joanna Briggs Institute's tools. Results: Nineteen included studies (five randomised controlled trials, 11 pre‐post, two post‐test and one qualitative study) evaluated a CST intervention (median duration = 3.75 h; range 0.66–96 h) involving 1116 HPs, 422 students and 732 patients. Most interventions taught communication skills for specific scenarios and approximately half were delivered solely online and did not involve role plays. Online CST improved HPs' self‐assessed communication skills (three studies, 215 participants), confidence (four studies, 533 participants), and objective knowledge (five studies, 753 participants). While few studies evaluated patient outcomes, CST may benefit observed communication skills in care settings (two studies, 595 participants). Conclusions: Online CST benefits oncology HPs' subjectively‐reported communication skills and confidence, and objective knowledge. Translation to patient outcomes requires further investigation. The quality of research varied and few studies had a control group. We recommend improvements to study design, evaluation and implementation. [ABSTRACT FROM AUTHOR]
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- 2021
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7. Advanced cancer patient preferences for receiving molecular profiling results.
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Best, Megan, Butow, Phyllis, Jacobs, Chris, Juraskova, Ilona, Savard, Jacqueline, Meiser, Bettina, Goldstein, David, Ballinger, Mandy, Bartley, Nicci, Napier, Christine, Davies, Grace, Thomas, David, Tucker, Kathy, Schlub, Timothy, Newson, Ainsley J., And Members of the PiGeOn Project, and PiGeOn Project
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MEDICAL personnel ,CANCER patients ,FREEDOM of information ,CANCER treatment ,ATTITUDE (Psychology) - Abstract
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 (ie, were actionable). A smaller majority wanted to access results which were not actionable (64%) or were variants of unknown significance (60%). Most (86%) were interested in finding out about germline findings, though not as a priority. Themes identified in interview data were: (a) Cancer is the focus; (b) Trust in clinicians; and (c) Respect for a right not to know.Conclusions: The majority of advanced cancer patients undergoing MP prioritised results which would lead to treatment options. They trusted their oncologists to help them navigate the results return process. While there was interest in knowing about other results, this was a lesser priority. Nevertheless, given high levels of interest in receiving all results, ethical aspects of not providing uninformative results requires further research, including a consideration of patient rationales for desiring this information and what health professionals can and should do to support patients in the absence of meaningful information being available. [ABSTRACT FROM AUTHOR]- Published
- 2020
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8. Clinician-patient-family decision-making and health literacy in adolescents and young adults with cancer and their families: A systematic review of qualitative studies.
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Gessler, Danielle, Juraskova, Ilona, Sansom‐Daly, Ursula M., Shepherd, Heather L., Patterson, Pandora, Muscat, Danielle Marie, and Sansom-Daly, Ursula M
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HEALTH literacy , *YOUNG adults , *ADOLESCENCE , *META-analysis , *QUALITATIVE research , *ADAPTABILITY (Personality) , *DECISION making , *HEALTH behavior , *PATIENT education , *INFORMATION literacy ,TUMORS & psychology - Abstract
Objective: Engaging in shared decision-making may be particularly difficult for adolescents and young adults with cancer (AYAs), possibly because of lower levels of health literacy. Family members of AYAs are likely to support decision-making about their healthcare by contributing to health literacy skills/practices; however, the nature of this process is unclear. This systematic review synthesized qualitative studies that explored the process of decision-making and characterized how AYA healthcare information is shared, from the perspective of the AYA and their family members.Methods: Electronic searches of EMBASE, MEDLINE, PsycINFO, and CINAHL were conducted in May 2018. Peer-reviewed studies discussing the decision-making process in AYAs and/or their families were eligible for inclusion. Findings were analyzed thematically using Framework analysis.Results: Seven thousand two hundred seventy-three studies were screened, and 14 eligible studies were included. The synthesized themes aligned with the Supported Health Literacy Pathway model3 in that AYAs draw on their family members' knowledge, skills, and practices to generate informed options and make shared decisions. Families of AYAs were found to be involved throughout all stages of decision-making. The use of health literacy skills was also found to be distributed in families, such that family members of AYAs mediate access to knowledge and use of health information in the decision-making process.Conclusions: Our findings suggest that health literacy is a dynamic and transactional process and provide clinicians, researchers, and other stakeholders with a framework to foster AYA engagement in decision-making. [ABSTRACT FROM AUTHOR]- Published
- 2019
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9. The development of a template for psychological assessment of women considering risk-reducing or contralateral prophylactic mastectomy: A national Delphi consensus study.
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Braude, Lucy, Kirsten, Laura, Gilchrist, Jemma, and Juraskova, Ilona
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MASTECTOMY ,BREAST cancer risk factors ,PSYCHODIAGNOSTICS ,PSYCHOLOGICAL tests ,PSYCHOLOGICAL consultation - Abstract
Objective: Risk-reducing mastectomies (RRM) and contralateral prophylactic mastectomies (CPM) are increasingly prevalent strategies to reduce breast cancer risk. Given the associated physical and emotional challenges, presurgical psychological assessment is frequently recommended for this population, yet limited research exists to guide this. This study aimed to reach a consensus on the most relevant content and format of a psychological consultation prior to RRM/CPM.Methods: A modified two-round online Delphi study was conducted Australia-wide. Expert participants (n = 25), including psychologists, surgeons, nurses, oncologists, genetic specialists, and researchers completed a round-one survey, informed by a literature review, previous qualitative study and expert clinicians' input. This required participants to rate their agreement with 36 statements regarding potential content of a psychological consultation and provide feedback on format/structure. A round-two survey comprised items that had not reached consensus and six new items suggested by participants. Parameters for statement consensus were set a priori at >75% agreement.Results: Expert participants indicated agreement with the majority of statements (39/42, 92.8%), endorsing that the assessment should include (1) patient understanding of the RRM/CPM procedure/cancer risk, (2) potential physical/emotional impact of surgery, (3) informed decision-making, and (4) past/current psychological issues (anxiety and body image). A provisional assessment template and user manual is provided.Conclusions: This research culminated in a consensus-based template to guide psychological assessment of women considering RRM/CPM. This enables health professionals to assess suitability for surgery and preempt challenges within a standardised framework. Future evaluation of the acceptability and effectiveness of the template in clinical settings is warranted. [ABSTRACT FROM AUTHOR]- Published
- 2018
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10. Facilitating psychosexual adjustment for women undergoing pelvic radiotherapy: pilot of a novel patient psycho-educational resource.
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Lubotzky, Franchelle, Butow, Phyllis, Nattress, Kathryn, Hunt, Caroline, Carroll, Susan, Comensoli, Andrew, Philp, Shannon, and Juraskova, Ilona
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TUMOR classification ,SEXUAL dysfunction ,RECTUM tumors ,PSYCHOLOGICAL stress ,ANAL tumors ,AGE factors in disease ,DEMOGRAPHY ,EDUCATION ,FEMALE reproductive organ tumors ,MARRIAGE ,POST-traumatic stress disorder ,PELVIC tumors ,QUESTIONNAIRES ,RADIOTHERAPY ,REHABILITATION ,RESOURCE allocation ,SUPPORT groups ,WORK ,PILOT projects ,ACCESS to information ,PSYCHOEDUCATION ,IMPACT of Event Scale ,DIAGNOSIS ,TUMOR treatment - Abstract
Purpose: This pilot study aimed to obtain feedback on the feasibility, safety and acceptability of a psychosexual rehabilitation booklet developed for women undergoing pelvic radiation therapy (PRT) and to explore women's sexual, informational and supportive care needs post‐PRT rehabilitation. Methods: Twenty women treated with PRT for gynaecological or anorectal cancer within the last 5 years, who had received vaginal dilators, provided feedback on the format, content and utility of the booklet and discussed their post‐treatment information needs, via a semi‐structured phone interview. Women completed standardized (HADS, IES‐R) and study‐specific scales to characterize psychological status of the sample and to assess participants' booklet knowledge and feedback, respectively. Results: The booklet was perceived as very helpful, informative and not distressing, providing additional information to that discussed with clinicians. After reading the booklet, women had good understanding of strategies to reduce the sexual impact of PRT. Many women reported that discussion of sexuality was often avoided during consultations, despite them experiencing distressing sexual experiences and difficulties post‐PRT. Conclusions: This novel resource which addresses an important component of post‐pelvic radiation care appears acceptable and highly valued. Findings have highlighted a need for sexual health communication training for clinicians who treat this population so that they can initiate conversations about vaginal health and sexual health in an informed and comfortable manner. The impact of the revised booklet on psychosexual and clinical outcomes is being evaluated in a multicentre RCT. [ABSTRACT FROM AUTHOR]
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- 2016
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11. Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode).
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Laidsaar‐Powell, Rebekah, Butow, Phyllis, Bu, Stella, Dear, Rachel, Fisher, Alana, Coll, Joseph, and Juraskova, Ilona
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ONCOLOGISTS ,PHYSICIAN-patient relations ,MEDICAL consultation ,CANCER patients ,MEDICAL students - Abstract
Background: Family members (FMs) regularly attend oncology consultations. However, limited studies have assessed actual behaviours of oncologists, patients and FMs - particularly during decision-making. The current study aimed the following: (i) to rigorously develop a family (kin) interaction coding system (KINcode) capturing communication and decision-making behaviours of FMs and family-relevant behaviours of oncologists and patients and (ii) to apply KINcode to initial oncology consultations.Methods: The 80-item KINcode system was developed and applied to 72 transcripts of audiotaped medical/radiation oncology consultations including an FM, collected as part of two previous studies.Results: The role of the FM varied considerably within the one encounter, with 33% of FMs assuming three or more roles across the four consultation stages. Whilst most FMs asked treatment decision questions (71%), a minority engaged in other behaviours such as prompting patient questions (4%) or providing information relevant to the decision to the oncologist (18%). Although oncologists rarely initiated interaction with FMs such as in rapport building (18%) or asking FMs questions (25%), they were typically fully responsive to FM questions (90%). Many patients asked their FM a question (42%), but few elicited the FM's decision preferences (4%).Conclusions: This study provides novel insights into the complex nature of family involvement. The findings highlight potentially positive FM-focused consultation behaviours such as oncologist responsiveness to family questions and potential areas for improvement such as rapport building, invitation of questions and validation of the family's role. Family-specific communication skills training should be considered in medical student and professional education settings. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]- Published
- 2016
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12. Burnout among psychosocial oncologists: an application and extension of the effort-reward imbalance model.
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Rasmussen, Victoria, Turnell, Adrienne, Butow, Phyllis, Juraskova, Ilona, Kirsten, Laura, Wiener, Lori, Patenaude, Andrea, Hoekstra‐Weebers, Josette, Grassi, Luigi, Hoekstra-Weebers, Josette, and IPOS Research Committee
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PSYCHOLOGICAL burnout ,MEDICAL personnel ,MASLACH Burnout Inventory ,MENTAL fatigue ,DEPERSONALIZATION ,ONCOLOGISTS ,PSYCHOLOGY ,WORK environment & psychology ,INDUSTRIAL hygiene ,ONCOLOGY ,QUESTIONNAIRES ,RESEARCH funding ,REWARD (Psychology) ,PSYCHOLOGICAL factors - Abstract
Objectives: Burnout is a significant problem among healthcare professionals working within the oncology setting. This study aimed to investigate predictors of emotional exhaustion (EE) and depersonalisation (DP) in psychosocial oncologists, through the application of the effort-reward imbalance (ERI) model with an additional focus on the role of meaningful work in the burnout process.Methods: Psychosocial oncology clinicians (n = 417) in direct patient contact who were proficient in English were recruited from 10 international psychosocial oncology societies. Participants completed an online questionnaire, which included measures of demographic and work characteristics, EE and DP subscales of the Maslach Burnout Inventory-Human Services Survey, the Short Version ERI Questionnaire and the Work and Meaning Inventory.Results: Higher effort and lower reward were both significantly associated with greater EE, although not DP. The interaction of higher effort and lower reward did not predict greater EE or DP. Overcommitment predicted both EE and DP but did not moderate the impact of effort and reward on burnout. Overall, the ERI model accounted for 33% of the variance in EE. Meaningful work significantly predicted both EE and DP but accounted for only 2% more of the variance in EE above and beyond the ERI model.Conclusions: The ERI was only partially supported as a useful framework for investigating burnout in psychosocial oncology professionals. Meaningful work may be a viable extension of the ERI model. Burnout among health professionals may be reduced by interventions aimed at increasing self-efficacy and changes to the supportive work environment. [ABSTRACT FROM AUTHOR]- Published
- 2016
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13. An exploration of decision aid effectiveness: the impact of promoting affective vs. deliberative processing on a health-related decision.
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Davis, Esther L., McCaffery, Kirsten, Mullan, Barbara, and Juraskova, Ilona
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ANXIETY diagnosis ,AFFECT (Psychology) ,COLLEGE students ,DEMOGRAPHY ,EMOTIONS ,FRIENDSHIP ,MEDICAL protocols ,DECISION making in clinical medicine ,DATA analysis ,RANDOMIZED controlled trials ,DATA analysis software - Abstract
Background: Decision aids (DAs) are non‐directive communication tools that help patients make value‐consistent health‐care decisions. However, most DAs have been developed without an explicit theoretical framework, resulting in a lack of understanding of how DAs achieve outcomes. Objective: To investigate the effect of promoting affective vs. deliberative processing on DA effectiveness based on dual‐process theory. Design, setting and participants: One hundred and forty‐eight female university students participated in a randomized controlled experiment with three conditions: emotion‐focused, information‐focused and control. Preference‐value consistency, knowledge, decisional conflict and satisfaction were compared across the conditions using planned contrast analyses. Intervention: The intervention comprised two different DAs and instructional manipulations. The emotion‐focused condition received a modified DA with affective content and instructions to induce an affective reaction. The information‐focused and control conditions received the same DA without the affective content. The information‐focused condition received additional instructions to induce deliberative processing. Results: Controlling for the experiment‐wise error rate at P < 0.017, the emotion‐focused and information‐focused conditions had significantly higher decisional satisfaction than the control condition (P < 0.001). The emotion‐focused condition did not demonstrate preference‐value consistency. There were no significant differences for decisional conflict and knowledge. Discussion: Results suggest that the promotion of affective processing may hinder value‐consistent decision making, while deliberative processing may enhance decisional satisfaction. Conclusions: This investigation of the effect of affective and deliberative processes in DA‐supported decision making has implications for the design and use of DAs. DA effectiveness may be enhanced by incorporating a simple instruction to focus on the details of the information. [ABSTRACT FROM AUTHOR]
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- 2015
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14. SUPPORTING THE SUPPORTERS: A RANDOMIZED CONTROLLED TRIAL OF INTERVENTIONS TO ASSIST THE LEADERS OF CANCER SUPPORT GROUPS.
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Zordan, Rachel, Butow, Phyllis, Kirsten, Laura, Charles, Margaret, Hobbs, Kim, Batterby, Eugenie, Friedsam, John, O'Reilly, Amanda, and Juraskova, Ilona
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RANDOMIZED controlled trials ,ADULT education workshops ,WELL-being ,SELF-confidence ,WEBSITES - Abstract
As more skilled cancer support group leaders create better outcomes for group members, it is important to provide training for this population. The aim of this randomized controlled trial was to evaluate the effect of a low resource demanding (LRD) versus a high resource demanding (HRD) intervention. Leaders were randomized to receive either an LRD (access to a website and discussion forum only) or an HRD intervention (access to the website and discussion forum, DVD, and manual, plus a 2-day training workshop). Pre- and postintervention assessment was conducted using 3 standardized measures. Sixty-five leaders (HRD n = 35; LRD n = 30) participated, with postintervention data collected from 54 leaders (83%). Pre- and postintervention, leaders reported low levels of challenge and high levels of psychological well-being and confidence. Comparative analysis revealed no significant group differences (all p > .05). However, in semistructured interviews (n = 12) and focus groups (n = 8), leaders reported that training had positive effects, despite barriers to intervention use. [ABSTRACT FROM AUTHOR]
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- 2015
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15. Sexual adjustment following early stage cervical and endometrial cancer: prospective controlled multi-centre study.
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Juraskova, Ilona, Butow, Phyllis, Bonner, Carissa, Robertson, Rosalind, and Sharpe, Louise
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CANCER in women , *CERVICAL cancer , *CERVICAL cancer patients , *CANCER treatment , *ONCOLOGY , *SEXUAL intercourse , *PSYCHOLOGICAL distress , *SEXUAL excitement - Abstract
Objective The primary aim of this study was to investigate objective and subjective aspects of sexual adjustment for women with early stage cervical and endometrial cancer during the first 6 months post-treatment, compared to women with benign and pre-invasive gynaecological conditions. 'Objective' aspects of sexual function were operationalised as the frequency of sexual activity and 'subjective' aspects as the perceived quality of sexual interactions. Method This multi-centre controlled study compared sexual outcomes of women treated for early stage cervical and endometrial cancer ( n = 53) with (i) benign gynaecological patients ( n = 60), as a comparison group for the physical effects of major pelvic surgery, and (ii) pre-invasive cancer patients ( n = 52), as a comparison group for the emotional effect of the perceived threat of cancer. All patients were assessed at baseline and at 6 months follow-up using standardised measures of objective and subjective aspects of sexual function, overall satisfaction with sexual life, relationship satisfaction and psychological distress. Results Despite experiencing treatment-related physical changes, women with early stage cervical and endometrial cancer did not report more severe or longer-lasting sexual sequelae than the benign or pre-invasive groups. There were no significant differences between the three groups or changes over time for the objective, subjective or overall measures of sexual function, controlling for age, psychological distress and relationship satisfaction. Conclusion The current findings suggest that early stage cervical and endometrial cancer patients fare as well as benign and pre-invasive cancer groups in terms of sexual adjustment over the 6 months post-treatment. Copyright © 2011 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]
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- 2013
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16. Communication about standard treatment options and clinical trials: can we teach doctors new skills to improve patient outcomes? Communication about standard treatment options and clinical trials: can we teach doctors new skills to improve patient outcomes?
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Bernhard, Jürg, Butow, Phyllis, Aldridge, Julie, Juraskova, Ilona, Ribi, Karin, and Brown, Richard
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CANCER treatment ,PHYSICIAN training ,MEDICAL decision making ,BREAST cancer patients ,MEDICAL ethics - Abstract
Background The International Breast Cancer Study Group conducted a phase III trial in Australian/New Zealand (ANZ) and Swiss/German/Austrian (SGA) centres on training doctors in clear and ethical information delivery about treatment options and strategies to encourage shared decision making. Methods Medical, surgical, gynaecological and radiation oncologists, and their patients for whom adjuvant breast cancer therapy was indicated, were eligible. Doctors were randomised to participate in a workshop with standardised teaching material and role playing. Patients were recruited in the experimental and control groups before and after the workshop. Results In ANZ centres, 21 eligible doctors recruited a total of 304 assessable patients. In SGA centres, 41 doctors recruited 390 patients. The training was well accepted. There was no overall effect on patient decisional conflict (primary endpoint) 2 weeks after the consultation. Overall, patients were satisfied with their treatment decision, their consultation and their doctors' consultation skills. Considerable variation was observed in patient outcomes between SGA and ANZ centres; the effect sizes of the intervention were marginal (<0.2). Conclusions Shared decision making remains a challenge. A sustained training effect may require more intensive training tailored to the local setting. Cross-cultural differences need attention in conducting trials on communication interventions. Copyright © 2011 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]
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- 2012
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17. Development and pilot-testing of a Decision Aid for use among Chinese women facing breast cancer surgery.
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Au, Angel H.Y., Lam, Wendy W.T., Chan, Miranda C.M., Or, Amy Y.M., Kwong, Ava, Suen, Dacita, Wong, Annie L., Juraskova, Ilona, Wong, Teresa W.T., and Fielding, Richard
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ANALYSIS of variance ,BREAST tumors ,CHI-squared test ,STATISTICAL correlation ,MAMMAPLASTY ,DECISION making ,MASTECTOMY ,PATIENTS ,PSYCHOLOGICAL tests ,QUESTIONNAIRES ,RESEARCH funding ,STATISTICAL sampling ,SCALES (Weighing instruments) ,STATISTICS ,PSYCHOLOGICAL stress ,T-test (Statistics) ,TEACHING aids ,PILOT projects ,DATA analysis ,LUMPECTOMY ,CROSS-sectional method ,DATA analysis software ,DESCRIPTIVE statistics ,CANCER & psychology - Abstract
Background Women choosing breast cancer surgery encounter treatment decision-making (TDM) difficulties, which can cause psychological distress. Decision Aids (DAs) may facilitate TDM, but there are no DAs designed for Chinese populations. We developed a DA for Chinese women newly diagnosed with breast cancer, for use during the initial surgical consultation. Aims Conduct a pilot study to assess the DA acceptability and utility among Chinese women diagnosed with breast cancer. Methods Women preferred the DA in booklet format. A booklet was developed and revised and evaluated in two consecutive pilot studies (P1 and P2). On concluding their initial diagnostic consultation, 95 and 38 Chinese women newly diagnosed with breast cancer received the draft and revised draft DA booklet, respectively. Four-day post-consultation, women had questionnaires read out to them and to which they responded assessing attitudes towards the DA and their understanding of treatment options. Results The original DA was read/partially read by 66/22% ( n = 84) of women, whilst the revised version was read/partially read by 74/16% ( n = 35), including subliterate women (χ
2 = 0.76, P = 0.679). Knowledge scores varied with the extent the booklet was read (P1: F = 12.68, d.f. 2, P < 0.001; P2: F = 3.744, d.f. 2, P = 0.034). The revised, shorter version was graphically rich and resulted in improved perceived utility, [except for the 'treatment options' (χ2 =2 =- Published
- 2011
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18. Sharing decisions in breast cancer care: Development of the Decision Analysis System for Oncology (DAS-O) to identify shared decision making during treatment consultations.
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Brown, Richard F., Butow, Phyllis N., Juraskova, Ilona, Ribi, Karin, Gerber, Daniela, Bernhard, Jurg, and Tattersall, Martin H.N.
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BREAST tumor treatment ,COMMUNICATION ,COMPUTER software ,DECISION making ,DELPHI method ,EXPERIMENTAL design ,RESEARCH methodology ,PHYSICIAN-patient relations ,PHYSICIANS ,RESEARCH evaluation ,RESEARCH funding ,SOUND recordings ,STATISTICS ,PATIENT participation ,QUALITATIVE research ,DATA analysis ,INTER-observer reliability ,RESEARCH methodology evaluation - Abstract
Shared Decision Making (SDM) is widely accepted as the preferred method for reaching treatment decisions in the oncology setting including those about clinical trial participation: however, there is some disagreement between researchers over the components of SDM. Specific standardized coding systems are needed to help overcome this difficulty. The first objective was to describe the development of an oncology specific SDM coding system, the DAS-O. The second objective was to provide reliability and validity data supporting the DAS-O. Consultation data were available from tertiary cancer center out patient oncology clinics in: Australia, New Zealand (ANZ), Switzerland, Germany and Austria (SGA). Patients were women with a confirmed diagnosis of early stage breast cancer. Reliability data were from 18 randomly selected coded transcripts drawn from ANZ and SGA. Concurrent validity data are from 55 (ANZ) consultations. Inter and Intra rater reliability data was evaluated using Kappa correlation statistics and correlation coefficients. Correlation coefficients were used to assess concurrent validity between the DAS-O and two other SDM coding systems, OPTION and DSAT. Inter and Intra rater reliability for the system were high with average Kappas of 0.58 and 0.65 respectively. Correlation coefficients between DAS-O and OPTION was 0.73 and >0.5 for DSAT. We have developed a reliable and valid coding system for identifying and rating the quality of SDM in breast cancer consultations. [ABSTRACT FROM AUTHOR]
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- 2011
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19. Exploring the impact of training on the experience of Australian support group leaders: current practices and implications for research R D Zordan et al. Training and support group leaders' wellbeing.
- Author
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Zordan, Rachel D., Juraskova, Ilona, Butow, Phyllis N, Jolan, Afsaneh, Kirsten, Laura, Chapman, Julie, Sedgwick, Christine, Charles, Margaret, and Sundquist, Kendra
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CHRONIC diseases & psychology , *JOB stress , *MULTIPLE sclerosis treatment , *TUMOR treatment , *SUPPORT groups , *ANALYSIS of variance , *ATTITUDE (Psychology) , *CHI-squared test , *COMPUTER software , *EXPERIENTIAL learning , *JOB satisfaction , *LEADERSHIP , *QUESTIONNAIRES , *RESEARCH , *RESEARCH funding , *STATISTICAL sampling , *SCALE analysis (Psychology) , *T-test (Statistics) , *WORK , *DATA analysis , *SCALE items , *EDUCATIONAL outcomes , *INFORMATION needs , *CROSS-sectional method , *EDUCATION - Abstract
Existing literature suggests that the effectiveness of a support group is linked to the qualifications, skills and experience of the group leader. Yet, little research has been conducted into the experiences of trained vs. untrained support group leaders of chronic-illness support groups. The current study aimed to compare the experience of leaders, trained vs. untrained in group facilitation, in terms of challenges, rewards and psychological wellbeing. A total of 358 Australian leaders of cancer and multiple sclerosis (MS) support groups, recruited through State Cancer Councils and the MS society (response rate of 66%), completed a mailed survey. Compared with untrained leaders, those with training were significantly younger, leading smaller groups and facilitating more groups, more frequently (all P < 0.05). Trained leaders were more likely to be female, educated beyond high school, paid to facilitate, a recipient of formal supervision and more experienced (in years) (all P < 0.01). Untrained leaders reported more challenges than trained leaders ( P < 0.03), particularly struggling with being contacted outside of group meetings (52%) and a lack of leadership training (47%). Regardless of level of training, leaders identified a number of unmet support and training needs. Overwhelmingly, leaders found their facilitation role rewarding and the majority reported a high level of psychological wellbeing. Group facilitator training has the potential to reduce the burden of support group leadership. Developing interventions to assist support group leaders will be particularly beneficial for leaders with minimal or no training group facilitation training. [ABSTRACT FROM AUTHOR]
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- 2010
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20. Psychosocial interventions and quality of life in gynaecological cancer patients: a systematic review.
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Hersch, Jolyn, Juraskova, Ilona, Price, Melanie, and Mullan, Barbara
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QUALITY of life , *CANCER patients , *CANCER in women , *WOMEN'S health , *PHYSICIANS - Abstract
Objective: Women with gynaecological cancer are at risk of poor quality of life outcomes. Although various psychosocial interventions have been developed to address these concerns, such interventions have not yet been systematically evaluated in this population. The current review provides an up-to-date and comprehensive summary of the evidence regarding the effectiveness of psychosocial interventions in women with gynaecological cancers. Methods: Relevant studies were identified via Medline, CINAHL, and PsycINFO databases (1980 to June 2008), reference lists of articles and reviews, grey literature databases, and consultations with physicians and other experts in the field. Only controlled trials comparing a psychosocial intervention with a control group in a gynaecological cancer population, with at least one quality of life variable as a main outcome, were included in the review. Two authors independently assessed trial quality and extracted data. Results: Twenty-two studies involving 1926 participants were included. There was substantial variability in study quality and results. Evidence was mixed regarding intervention effects on social and sexual functioning, distress, depression, anxiety, attitude to medical care, self-esteem and body image. Interventions generally did not improve physical or vocational outcomes. Conclusions: There was limited evidence in support of healing touch, whereas information-based interventions seemed largely unable to provide meaningful benefits. Cognitive-behavioural interventions had some positive effects. Counselling appeared to be the most promising intervention strategy for addressing quality of life concerns for women with gynaecological cancers. Copyright © 2008 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]
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- 2009
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21. ‘What does it mean?’ uncertainty, trust and communication following treatment for pre-cancerous cervical abnormalities.
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Juraskova, Ilona, Butow, Phyllis, Sharpe, Louise, and Campion, Michael
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CERVICAL cancer , *CANCER treatment , *VAGINA examination , *DISEASES in women , *CLINICAL medicine , *COLPOSCOPY - Abstract
The early detection of pre-cancerous cervical conditions has risen dramatically, prompting more in-depth investigations regarding psychological implications inherent within the diagnosis and treatment of this condition. This study aimed to identify factors that influence women's experience of diagnosis and treatment of cervical abnormalities and factors that facilitate positive adjustment. Using a semi-structured telephone interview, we interviewed 21 women (age 24–54) treated at a colposcopy clinic. Systematic recruitment of women with varying degrees of cervical abnormality (CIN 1–3) and time since treatment was undertaken to ensure representation of all relevant experiences and allow the identification of long-term factors. Coding of audio-taped, transcribed interviews and searching for themes was achieved by using NUD*IST software. The results identified uncertainty, trust and communication as the key factors for women following diagnosis and treatment. The primary concern following diagnosis was related to cancer but changed to a more prominent concern with future reproductive issues in the post-treatment period. The majority of women acknowledged the importance of the doctor's empathic communication style. These findings have important implications for future studies and clinical practice. Copyright © 2006 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]
- Published
- 2007
- Full Text
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